Bernie,

Thanks for all the info, I'm saving that to reflect on from time to time.  Yes,
we were in the Air Force at Keesler AFB in Biloxi, MS. or at least until
Hurricane Katrina wipe out our house which caused the move to Delaware.  I know
the hospital has to report us to some cancer institute but I know they reported
it as Delaware when I know from his leg cramps it was Mississippi.

Expecting Miracles,
Shauna
  -------------- Original message ----------------------
From: bjyoung716 <no_reply@yahoogroups.com>
>
> Shauna, and other friends out there in the blogosphere:
>
> This has been a busy 24 hours.  I'd like to offer some observations of
> what's on people's minds.
>
> 1) There are confirmed and suspected clusters of Ewing's out there, and
> there is little documention in the medical or epidemiologic literature
> about them.
>
> 2)There are associations between environmental factors and Ewing's, and
> between athletic activity and Ewing's, and between skeletal injuries and
> Ewing's.  The latter two go hand in hand.
>
> 3)It is incomprehensible that these rare events are not met with enough
> concern to warrant a documention of medical history, lifestyle history,
> suspected environmental factors, etc. which may lead to identification
> of risk factors or even a cause.  Even a solitary case in a remote or an
> unpopulated area should be documented for further investigation.
>
> Shauna, there are personal and epidemiologic issues surrounding your
> concerns.  There is a cause for each of these cases.  We will never know
> what that cause is in each case, but the enemy is not ourselves.  As
> Holly's surgeon told her at the initial appointment, this did  not
> happen because you didn't take the garbage out, and it did not happen
> because your parents asked you to take the garbage out.  And you didn't
> miss the daignosis.  Holly was given Bextra for tendonitis until the
> pain was so great she couldn't sleep.  She named her Ewing's
> "tumoritis."
>
> There is another potential problem for athletes.  They are used to
> playing through pain, and often ignore pain too long.  This is important
> for athletic directors, coaches, trainors, and the athletes themselves.
> There is a considerable body of literature on discriminating between
> injury and illness.  Everyone in sports needs to pay attention to it.
>
> Even if statisticians tell us these are random events, that does not
> mean that there is not a cause for every case, or that there are not
> common factors among some cases.  Once you identify any common factor,
> the next step is one of measurement.  If an increase in exposure to a
> factor leads to an increase in the effect, then that factor is a cause.
> This works well in the laboratory where you can control the factors and
> measure them as you do in an experiment.  We cannot ethically experiment
> on human beings.  Life is a natural experiment with many factors not
> under our control.  It would help if each of the 250 or so cases
> diagnosed each year just in the States had a medical, lifestyle, and
> environmental history to analyze.  With the information technology,
> communications, and computer power available in the 21st century, we
> should be doing better.
>
> A lot of people note skeletal injuries occurred before the onset of
> Ewing's.  This is discounted by the medical community; it's a doctrine.
> However, experience shows that many medical doctrines are reversed, and
> even re-reversed and reversed again.  There are ample examples of
> associations that have been missed in research studies, and ample
> examples of bias.  Someday I'd like to see the research behind this
> doctrine, and see it re-evaluated with contemporary data.
>
> Shauna, you said you were stationed in Mississippi.  Coast Guard, Air
> Force, Corps of Engineers?
>
> Bernie
>
>
> --- In ewingssarcoma@yahoogroups.com, stamplifter@... wrote:
> >
> > Marybeth,
> >
> > I think alot of the ER diagnosis depends on what kind of doctor they
> are, we just weren't lucky enough to get an orthopedic oncology doctor.
> JT ended up with almost a gallon of fluid on his lungs and found out it
> was Ewings from there. I wish I'd known to ask for a CAT scan (had no
> idea), but everyone I know has heard my story and if it gets someone to
> a doctor with a CAT scan or MRI sooner than later will help the guilt
> that I feel about it going on for so long. I know it wasn't my fault but
> I still find myself saying he might still have his leg if this was
> caught sooner.
> >
> > I'm so angry it was mistreated for so long. Where were you diagnosed?
> We actually had it while stationed in Mississippi but weren't diagnosed
> until we moved to Delaware.
> >
> > Expecting Miracles,
> >
> > Shauna
> >
> > -------------- Original message ----------------------
> > From: marybeth adkins jazzmbm@...
> > >
> > > Hi Shauna,
> > >
> > > I too am interested in the clusters. I can completely associate with
> you on the
> > > growing pains. That is all I heard for two years on my daughter. Her
> pains were
> > > in her but. I'm telling you, I felt like an idiot for so long taking
> her in with
> > > but pain. But we finally hit the er with a more aggressive doctor
> who did a cat
> > > scan. It wasn't growing pains. It was Ewings Pnet with a tumor the
> size of a
> > > football in an 8 year old little girl.
> > > Marybeth
> > > --- On Wed, 8/6/08, stamplifter@... stamplifter@... wrote:
> > >
> > > From: stamplifter@... stamplifter@...
> > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > To: ewingssarcoma@yahoogroups.com
> > > Date: Wednesday, August 6, 2008, 6:06 PM
> > >
> > >
> > >
> > >
> > >
> > >
> > > I have been reading all of this and I'd like to add my 2 cents. JT
> broke his leg
> > > Dec.31,04 wasn't diagnosed with Ewings until Nov. 15,07. For at
> least two years
> > > we had him in and out of the ER and were told growing pains. He was
> not an
> > > athlete and not really active, being 6'1" he always complained that
> his legs
> > > hurt from the time he was five or six years old. I really think the
> environment
> > > has alot to do with him getting it. I was told most Ewings patients
> find out
> > > because of a broken bone. I am very interested in the clusters and
> more info.
> > >
> > > Thanks for sharing,
> > >
> > > Shauna Mom to JT
> > >
> > > ------------ -- Original message ------------ --------- -
> > > From: Sharon Kory <sharonlkory@ yahoo.com>
> > > > Bernie,
> > > >
> > > > My son was diagnosed during his first semester at Michigan, my
> daughter will
> > > be
> > > > a sophmore there this fall. Interesting to hear your're an alumni.
> Haven't
> > > yet,
> > > > but plan to look at the links you sent and do a little research
> myself. I,
> > > too,
> > > > am quite miffed by the fact that no one ever questioned his
> medical history to
> > > > try and trace back to something, if only for the sake of research.
> The other
> > > > boys who were diagnosed were athletes as well. I have also
> questioned the
> > > injury
> > > > aspect. My son broke his wrist while wrestling in high school,
> although his
> > > > tumour was on his spine; don't know if theres any correlation.
> > > >
> > > > Sharon
> > > >
> > > >
> > > > Sharon Kory
> > > >
> > > > Sharon Kory Interiors Inc
> > > > 29000 Inkster Rd. Suite 120
> > > > Southfield, MI 48034
> > > > phone: 248.357.3600 ext 203
> > > > fax: 248.357.3646
> > > >
> > > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com> wrote:
> > > >
> > > > From: bjyoung716 no_reply@yahoogroup s.com>
> > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > To: ewingssarcoma@ yahoogroups. com
> > > > Date: Tuesday, August 5, 2008, 9:27 PM
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > Sharon & Fawad
> > > >
> > > > This site had been dormant for a month and all of sudden it's a
> > > > whirlwind.
> > > >
> > > > If you follow the same message I left with Patricia and read the
> files I
> > > > posted, you will get an idea as to how these clusters are studied
> and
> > > > denied through faulty research. I have been working on a list of
> > > > exposures which might be factors in Ewing's or any other suspected
> > > > cancer excess. I shouldn't have to do this. There are agencies
> which
> > > > ought to be at the task. What we see though is a systematic
> approach at
> > > > denying community cancer clusters.
> > > >
> > > > I also blog with the National Disease Clusters Alliance. It is a
> group
> > > > of activists, families, victims, doctors, nurses, scientists, and
> > > > epidemiologists who have become dissatisfied with the status quo
> and
> > > > feel we ought to be able to find causes for these cancer clusters.
> > > > Check out:
> > > >
> > > > http://tech. groups.yahoo. com/group/ NationalDiseaseC
> lustersAlliance/
> > > > <http://tech. groups.yahoo. com/group/ NationalDiseaseC
> lustersAlliance/ >
> > > >
> > > > If you go to the "search" window and enter keywords "Cape
> > > > Cod" or "Ewing's" you will retrieve all the relevant
> > > > messages. I'm going to alert them of the activity on this blog.
> > > >
> > > > What blows my mind is that three and a half years after my
> daughter's
> > > > diagnosis, no one has even asked for her medical history, let
> alone
> > > > investigate lifestyle factors or potential environmental
> exposures! If
> > > > you don't ask the questions, you don't get the answers.
> > > >
> > > > Tonight I did a yahoo search on "Hockey" & "Ewing's
> > > > sarcoma." You ought to try it. Try it with any sport. My
> > > > daughter's sports were volleyball and track, but a football
> > > > player/wannabee shot putter uncorked a wild shot and smashed her
> ankle.
> > > > The conventional wisdom, probably 75years old, is that injuries
> > > > don't lead to Ewing's. But I've seen so much bad research
> > > > recently, and see so many associations between sports injuries and
> > > > Ewing's that I think the source of that doctrine should be flushed
> > > > out of the literature and re-examined.
> > > >
> > > > I know Bloomfield Hills as a haven for Michigan grads like me ('68
> &
> > > > '71). I also used to sail out of Bayview Yacht Club. My first ski
> > > > adventure was at Mt. Holly. That was my daughter's name.
> > > >
> > > > Bernie
> > > >
> > > > --- In ewingssarcoma@ yahoogroups. com, Sharon Kory <sharonlkory@
> ...>
> > > > wrote:
> > > > >
> > > > > My son, now 26 years old, was diagnosed at age 18 with Ewings
> Sarcoma.
> > > > We live in a suburb of Detroit, called Bloomfield Hills. There
> were at
> > > > least three other boys in our general area diagnosed around the
> same
> > > > time with either Ewings Sarcoma or Osteosarcoma, one of them
> attended
> > > > the same high school. I have always found this to be quite
> peculiar, due
> > > > to the rarity. The possibility of some environmental factor
> > > > contributing to this disease seems to make sense. My son received
> 10
> > > > months of chemo, radiation and surgery in a wonderful hospital in
> our
> > > > area. We are very fortuneate that he is a healthy survivor. He too
> was
> > > > an athlete, hockey player, wrestler, golfer and was a very active
> teen.
> > > > > I would be interested in anything that would shed some light on
> why an
> > > > otherwise healthy young man, with no family history of cancer
> could
> > > > contract this horrible disease.
> > > > > Best to all of you still struggling and or mourning the loss of
> a
> > > > loved one. Our hearts will always be with you.
> > > > >
> > > > > Sharon Kory
> > > > >
> > > > > I am very curious
> > > > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com wrote:
> > > > >
> > > > > From: bjyoung716 no_reply@yahoogroup s.com
> > > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > > To: ewingssarcoma@ yahoogroups. com
> > > > > Date: Tuesday, August 5, 2008, 7:56 PM
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > Patricia
> > > > >
> > > > > Maine West High School in DesPlaines, Illinois, had cases of
> Ewing's
> > > > > sarcoma in 2003 and 2004 (the latter being a recent graduate).
> It's a
> > > > > big school (5000 or so) just north of O'hare International
> Airport.
> > > > > That community has perceived an excess of cancer, and I have
> seen
> > > > > contours of incidence that diminish the further you get from the
> > > > > airport. To have two cases of such a rare disease so close
> together
> > > > > gets your attention, no matter what the epidemiologists say.
> Your
> > > > > information is interesting.
> > > > >
> > > > > I belong to several yahoo groups, and all are organized
> differently.
> > > > It
> > > > > seems members of this group receive new messages automatically,
> so you
> > > > > don't have to visit the home page (unless you want to download
> files
> > > > or
> > > > > search for old messages. If you follow this link:
> > > > >
> > > > > http://health. groups.yahoo. com/group/ ewingssarcoma/
> > > > > <http://health. groups.yahoo. com/group/ ewingssarcoma/ >
> > > > >
> > > > > and click on the word "Files" you can download the files I have
> > > > posted.
> > > > >
> > > > > My sympathies to you on the loss of your daughter. I too lost a
> > > > > daughter in January just after her 22 birthday. She battled 3
> years,
> > > > > and enjoyed much support as she was an active athlete and played
> on
> > > > many
> > > > > teams.
> > > > >
> > > > > If you read my posts, there is an association on Cape Cod
> between a
> > > > > unique electromagnetic radiation exposure and Ewing's. But I
> think
> > > > > there are statistical confounders, and one (on a worldwide
> basis) is
> > > > > contact sports (hockey, football, soccer). I am also suspicious
> of
> > > > > osteochondroma; there seems to be a excess of that disease which
> > > > > parallels the Cape Cod Ewing's cluster. After revealing my
> concerns to
> > > > > the state health department, a mother with a son who had Ewing's
> said
> > > > > she had another son with osteochondroma!
> > > > >
> > > > > Most of our professional epidemiologists are inclined to
> discredit
> > > > talk
> > > > > of clusters. But this is the 21st century, and with a better
> educated
> > > > > population, the ability to instantaneously communicate with one
> > > > another,
> > > > > massive information storage and retrieval technology, and the
> help of
> > > > > some friendly epidemiologists, I beleive we may be able to
> identify
> > > > risk
> > > > > factors for Ewing's where none now exist.
> > > > >
> > > > > Do you have any idea if the is a common exposure to some
> environmental
> > > > > factor in your community or school? Even though I live on this
> side of
> > > > > "the pond," I have seen several stories of Ewing's cases in the
> same
> > > > > geographic area you describe. I'd like to know more about your
> > > > > concerns. I don't want to bias your thinking before revealing
> some of
> > > > > the confounding factors that have caught my attention.
> > > > >
> > > > > Hope to we hear more from you.
> > > > >
> > > > > Bernie
> > > > >
> > > > > --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
> > > > > <patriciasmith@ ...> wrote:
> > > > > >
> > > > > > Hi
> > > > > >
> > > > > > I wonder could you post the information, I live in the
> republic of
> > > > > ireland and we have a population of 3500,000million
> > > > > > yet where I live and near by three teenagers at the same time
> were
> > > > > diagnosed with ewings sarcoma.
> > > > > > two sat beside one another in the same school.
> > > > > > my daughter Krystle died of ewings sarcoma at aged 18 years we
> live
> > > > 10
> > > > > miles away.
> > > > > > I am interested in clusters and I am a member of The bone
> cancer
> > > > > research trust www.bonecancerresea rch.org.uk
> > > > > > I got a lot of data from ireland england scotland and wales
> and we
> > > > > seem to have a lot for a small population.
> > > > > > there is very little research in this area.
> > > > > >
> > > > > > regards
> > > > > > patricia
> > > > > > ireland
> > > > > >
> > > > > >
> > > > > > ----- Original Message -----
> > > > > > From: bjyoung716
> > > > > > To: ewingssarcoma@ yahoogroups. com
> > > > > > Sent: Tuesday, August 05, 2008 9:13 AM
> > > > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > > >
> > > > > >
> > > > > >
> > > > > > Scott
> > > > > >
> > > > > > Thank you for your comments. I have just posted three files on
> this
> > > > > > blog (which I think are visible only to members) which answer
> most
> > > > of
> > > > > > the points you raise. They are dated and are best read in
> > > > > chronological
> > > > > > order; they seem to be listed with most recent on top.
> > > > > >
> > > > > > I would only add that diagnosis is often delayed, which is of
> > > > > particular
> > > > > > concern for athletes who are used to playing through pain. Our
> > > > medical
> > > > > > institutions are world class when it comes to confirming a
> diagnosis
> > > > > and
> > > > > > treating the disease. At the local level things are more
> ordinary.
> > > > > >
> > > > > > This cluster is unique to Cape Cod. There does not seem to be
> a
> > > > > > dramatic elevation in Ewing's anywhere else in New England. It
> is
> > > > 67%
> > > > > > more severe than the Woburn Leukemia cluster documented the
> movie "A
> > > > > > Civil Action."
> > > > > >
> > > > > > I don't know if EMR from our high powered radar station is the
> > > > cause,
> > > > > > but there are enough reasons to be concerned, and the research
> > > > > > surrounding it has been pathetically poor. If anyone is still
> > > > > > interested after reading these files, I have a 23 page letter
> of
> > > > > > comments on a recent Environmental Impact Statement I can
> post.
> > > > > >
> > > > > > Bernie
> > > > > >
> > > > > > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice
> Alcott
> > > > > > scottbernice@ wrote:
> > > > > > >
> > > > > > >
> > > > > > > Hi Bernie,
> > > > > > >
> > > > > > > I'm a Ewing's patient and an American living in Belgium
> (just 10
> > > > > > million people) and have been anecdotally surprised at the
> number of
> > > > > > cases just known to me arising in this small country. Turns
> out the
> > > > > > nephew of a close work colleague also has ewing's, odd. So I
> started
> > > > > > wondering about "clusters" too. After looking into it all, now
> I'm
> > > > not
> > > > > > so sure about the anecdotal math I was doing.
> > > > > > >
> > > > > > > In your case, Ewing's should appear much more often in the
> cape
> > > > > anyway
> > > > > > versus the general poulation. Are you controlling for that?
> Ewing's
> > > > is
> > > > > a
> > > > > > white person's disease (it shows up 9x more often in white
> people)
> > > > and
> > > > > > the cape has 80% fewer "non-whites" then the general
> population.
> > > > > Ewing's
> > > > > > overwhelmingly clusters in teens 15-19. I don't know if the
> > > > incidents
> > > > > > you count on the cape include the summer/second home
> population
> > > > which
> > > > > > may statistically over-index heavily on families with kids
> versus
> > > > the
> > > > > > general population? Last, I've read that Ewing's is often
> discovered
> > > > > > "more" in places with access to top teaching hospitals and
> places
> > > > that
> > > > > > do great pathology while other locations fail to accurately
> > > > > subclassify
> > > > > > tumors as Ewings (they think they are just general sarcomas or
> > > > > > osteo-sarcoma, etc.). The cape has access to some of the
> finest
> > > > > doctors,
> > > > > > institutions and teaching hospitals in the world. Maybe kids
> who get
> > > > > > painful lumps on the cape get to Boston and correctly
> diagnosed in
> > > > > that
> > > > > > area more than kids in other places? I don't know. I just
> think it's
> > > > > > hard to control for all of this and accurately assess things.
> > > > Ewing's
> > > > > is
> > > > > > so small and has so many correlations (age, race, diagnostic
> > > > variance)
> > > > > > that there is huge statistical "standard error" in the data.
> Given
> > > > all
> > > > > > that, I lost confidence in my ability to extrapolate the
> meaning of
> > > > > > variance from 10 cases when there should have 4. Numbers are
> just
> > > > too
> > > > > > small. In my case, Belgium is VERY white and it's a world
> leader in
> > > > > > analysis and pathology. I'm not so sure about anything any
> more!
> > > > > > >
> > > > > > > Scott
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
> > > > > > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma
> Cluster
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > > Friends:Here on Cape Cod we have a cluster of Ewing's
> sarcoma with
> > > > a
> > > > > > standardized incidence ratio of 3.84 (Massachusetts Department
> of
> > > > > Public
> > > > > > Health figure)or 6.67 (my figure). We should see one case
> every 6.7
> > > > > > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004,
> and
> > > > one
> > > > > in
> > > > > > 2005. There are cses in 1996 and 1996. There are also adult
> cases. A
> > > > > > pair were diagnosed the same day; the 2 in 2004 the same
> month. A
> > > > pair
> > > > > > are 1.75 miles apart; another pair 1/4 mile apart. There is an
> > > > > ensemble
> > > > > > of 3 cases in the Mid-Cape, but most cases are from the Upper
> Cape.
> > > > > > THere is a 13 mile gap between these two ensembles.I am
> suspicious
> > > > of
> > > > > a
> > > > > > particularly high incidence in athletes or athletically active
> > > > > > individuals, although I recognize we are becoming a more
> active
> > > > > > society.Anyone have any observations or concerns to offer to
> this
> > > > > > discussion?Bernie
> > > > > > >
> > > > > > >
> > > > > > >
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> > > > > >
> > > > > >
> > > > > > __________ Information from ESET NOD32 Antivirus, version of
> virus
> > > > > signature database 3329 (20080805) __________
> > > > > >
> > > > > > The message was checked by ESET NOD32 Antivirus.
> > > > > >
> > > > > > http://www.eset. com
> > > > > >
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[Non-text portions of this message have been removed]

Marybeth,

I had to laugh at your posting... in the beginning I didn't know his bowel
activity but I sure do now!

Have a great Day and thanks for making me smile,

Shauna
  -------------- Original message ----------------------
From: marybeth adkins <jazzmbm@...>
> Hi Shauna,
>
> We were diagnosed at St. Jude Childrens Research Hospital after our local ER
> found the tumor, we were sent there immediately. I remind myself that it
wasn't
> my fault either but it is so frustrating. I knew something wasn't right. One
> doctor actually scolded me two weeks before her diagnosis. I took her to ER
for
> constipation. The x-ray showed constipation and he wanted to know why I didn't
> know when she had had her last bowel movement. She is eight years old she
> doesn't exactly need me holding her hand. I just look back at the whole
> nightmare. But I kept my faith in God! And miracles do happen. We are fifteen
> now!
>
> Marybeth
>
> --- On Wed, 8/6/08, stamplifter@... <stamplifter@...> wrote:
>
> From: stamplifter@... <stamplifter@...>
> Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> To: ewingssarcoma@yahoogroups.com
> Date: Wednesday, August 6, 2008, 9:25 PM
>
>
>
>
>
>
> Marybeth,
>
> I think alot of the ER diagnosis depends on what kind of doctor they are, we
> just weren't lucky enough to get an orthopedic oncology doctor. JT ended up
with
> almost a gallon of fluid on his lungs and found out it was Ewings from there.
I
> wish I'd known to ask for a CAT scan (had no idea), but everyone I know has
> heard my story and if it gets someone to a doctor with a CAT scan or MRI
sooner
> than later will help the guilt that I feel about it going on for so long. I
know
> it wasn't my fault but I still find myself saying he might still have his leg
if
> this was caught sooner.
>
> I'm so angry it was mistreated for so long. Where were you diagnosed? We
> actually had it while stationed in Mississippi but weren't diagnosed until we
> moved to Delaware.
>
> Expecting Miracles,
>
> Shauna
>
> ------------ -- Original message ------------ --------- -
> From: marybeth adkins <jazzmbm@yahoo. com>
> >
> > Hi Shauna,
> >
> > I too am interested in the clusters. I can completely associate with you on
> the
> > growing pains. That is all I heard for two years on my daughter. Her pains
> were
> > in her but. I'm telling you, I felt like an idiot for so long taking her in
> with
> > but pain. But we finally hit the er with a more aggressive doctor who did a
> cat
> > scan. It wasn't growing pains. It was Ewings Pnet with a tumor the size of a
> > football in an 8 year old little girl.
> > Marybeth
> > --- On Wed, 8/6/08, stamplifter@ comcast.net <stamplifter@ comcast.net>
wrote:
> >
> > From: stamplifter@ comcast.net <stamplifter@ comcast.net>
> > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > To: ewingssarcoma@ yahoogroups. com
> > Date: Wednesday, August 6, 2008, 6:06 PM
> >
> >
> >
> >
> >
> >
> > I have been reading all of this and I'd like to add my 2 cents. JT broke his
> leg
> > Dec.31,04 wasn't diagnosed with Ewings until Nov. 15,07. For at least two
> years
> > we had him in and out of the ER and were told growing pains. He was not an
> > athlete and not really active, being 6'1" he always complained that his legs
> > hurt from the time he was five or six years old. I really think the
> environment
> > has alot to do with him getting it. I was told most Ewings patients find out
> > because of a broken bone. I am very interested in the clusters and more
info.
> >
> > Thanks for sharing,
> >
> > Shauna Mom to JT
> >
> > ------------ -- Original message ------------ --------- -
> > From: Sharon Kory <sharonlkory@ yahoo.com>
> > > Bernie,
> > >
> > > My son was diagnosed during his first semester at Michigan, my daughter
will
> > be
> > > a sophmore there this fall. Interesting to hear your're an alumni. Haven't
> > yet,
> > > but plan to look at the links you sent and do a little research myself. I,
> > too,
> > > am quite miffed by the fact that no one ever questioned his medical
history
> to
> > > try and trace back to something, if only for the sake of research. The
other
> > > boys who were diagnosed were athletes as well. I have also questioned the
> > injury
> > > aspect. My son broke his wrist while wrestling in high school, although
his
> > > tumour was on his spine; don't know if theres any correlation.
> > >
> > > Sharon
> > >
> > >
> > > Sharon Kory
> > >
> > > Sharon Kory Interiors Inc
> > > 29000 Inkster Rd. Suite 120
> > > Southfield, MI 48034
> > > phone: 248.357.3600 ext 203
> > > fax: 248.357.3646
> > >
> > > --- On Tue, 8/5/08, bjyoung716 <no_reply@yahoogrou p s.com> wrote:
> > >
> > > From: bjyoung716 <no_reply@yahoogrou p s.com>
> > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > To: ewingssarcoma@ yahoogroups. com
> > > Date: Tuesday, August 5, 2008, 9:27 PM
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > Sharon & Fawad
> > >
> > > This site had been dormant for a month and all of sudden it's a
> > > whirlwind.
> > >
> > > If you follow the same message I left with Patricia and read the files I
> > > posted, you will get an idea as to how these clusters are studied and
> > > denied through faulty research. I have been working on a list of
> > > exposures which might be factors in Ewing's or any other suspected
> > > cancer excess. I shouldn't have to do this. There are agencies which
> > > ought to be at the task. What we see though is a systematic approach at
> > > denying community cancer clusters.
> > >
> > > I also blog with the National Disease Clusters Alliance. It is a group
> > > of activists, families, victims, doctors, nurses, scientists, and
> > > epidemiologists who have become dissatisfied with the status quo and
> > > feel we ought to be able to find causes for these cancer clusters.
> > > Check out:
> > >
> > > http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/
> > > <http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/ >
> > >
> > > If you go to the "search" window and enter keywords "Cape
> > > Cod" or "Ewing's" you will retrieve all the relevant
> > > messages. I'm going to alert them of the activity on this blog.
> > >
> > > What blows my mind is that three and a half years after my daughter's
> > > diagnosis, no one has even asked for her medical history, let alone
> > > investigate lifestyle factors or potential environmental exposures! If
> > > you don't ask the questions, you don't get the answers.
> > >
> > > Tonight I did a yahoo search on "Hockey" & "Ewing's
> > > sarcoma." You ought to try it. Try it with any sport. My
> > > daughter's sports were volleyball and track, but a football
> > > player/wannabee shot putter uncorked a wild shot and smashed her ankle.
> > > The conventional wisdom, probably 75years old, is that injuries
> > > don't lead to Ewing's. But I've seen so much bad research
> > > recently, and see so many associations between sports injuries and
> > > Ewing's that I think the source of that doctrine should be flushed
> > > out of the literature and re-examined.
> > >
> > > I know Bloomfield Hills as a haven for Michigan grads like me ('68 &
> > > '71). I also used to sail out of Bayview Yacht Club. My first ski
> > > adventure was at Mt. Holly. That was my daughter's name.
> > >
> > > Bernie
> > >
> > > --- In ewingssarcoma@ yahoogroups. com, Sharon Kory <sharonlkory@ ...>
> > > wrote:
> > > >
> > > > My son, now 26 years old, was diagnosed at age 18 with Ewings Sarcoma.
> > > We live in a suburb of Detroit, called Bloomfield Hills. There were at
> > > least three other boys in our general area diagnosed around the same
> > > time with either Ewings Sarcoma or Osteosarcoma, one of them attended
> > > the same high school. I have always found this to be quite peculiar, due
> > > to the rarity. The possibility of some environmental factor
> > > contributing to this disease seems to make sense. My son received 10
> > > months of chemo, radiation and surgery in a wonderful hospital in our
> > > area. We are very fortuneate that he is a healthy survivor. He too was
> > > an athlete, hockey player, wrestler, golfer and was a very active teen.
> > > > I would be interested in anything that would shed some light on why an
> > > otherwise healthy young man, with no family history of cancer could
> > > contract this horrible disease.
> > > > Best to all of you still struggling and or mourning the loss of a
> > > loved one. Our hearts will always be with you.
> > > >
> > > > Sharon Kory
> > > >
> > > > I am very curious
> > > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com wrote:
> > > >
> > > > From: bjyoung716 no_reply@yahoogroup s.com
> > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > To: ewingssarcoma@ yahoogroups. com
> > > > Date: Tuesday, August 5, 2008, 7:56 PM
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > Patricia
> > > >
> > > > Maine West High School in DesPlaines, Illinois, had cases of Ewing's
> > > > sarcoma in 2003 and 2004 (the latter being a recent graduate). It's a
> > > > big school (5000 or so) just north of O'hare International Airport.
> > > > That community has perceived an excess of cancer, and I have seen
> > > > contours of incidence that diminish the further you get from the
> > > > airport. To have two cases of such a rare disease so close together
> > > > gets your attention, no matter what the epidemiologists say. Your
> > > > information is interesting.
> > > >
> > > > I belong to several yahoo groups, and all are organized differently.
> > > It
> > > > seems members of this group receive new messages automatically, so you
> > > > don't have to visit the home page (unless you want to download files
> > > or
> > > > search for old messages. If you follow this link:
> > > >
> > > > http://health. groups.yahoo. com/group/ ewingssarcoma/
> > > > <http://health. groups.yahoo. com/group/ ewingssarcoma/ >
> > > >
> > > > and click on the word "Files" you can download the files I have
> > > posted.
> > > >
> > > > My sympathies to you on the loss of your daughter. I too lost a
> > > > daughter in January just after her 22 birthday. She battled 3 years,
> > > > and enjoyed much support as she was an active athlete and played on
> > > many
> > > > teams.
> > > >
> > > > If you read my posts, there is an association on Cape Cod between a
> > > > unique electromagnetic radiation exposure and Ewing's. But I think
> > > > there are statistical confounders, and one (on a worldwide basis) is
> > > > contact sports (hockey, football, soccer). I am also suspicious of
> > > > osteochondroma; there seems to be a excess of that disease which
> > > > parallels the Cape Cod Ewing's cluster. After revealing my concerns to
> > > > the state health department, a mother with a son who had Ewing's said
> > > > she had another son with osteochondroma!
> > > >
> > > > Most of our professional epidemiologists are inclined to discredit
> > > talk
> > > > of clusters. But this is the 21st century, and with a better educated
> > > > population, the ability to instantaneously communicate with one
> > > another,
> > > > massive information storage and retrieval technology, and the help of
> > > > some friendly epidemiologists, I beleive we may be able to identify
> > > risk
> > > > factors for Ewing's where none now exist.
> > > >
> > > > Do you have any idea if the is a common exposure to some environmental
> > > > factor in your community or school? Even though I live on this side of
> > > > "the pond," I have seen several stories of Ewing's cases in the same
> > > > geographic area you describe. I'd like to know more about your
> > > > concerns. I don't want to bias your thinking before revealing some of
> > > > the confounding factors that have caught my attention.
> > > >
> > > > Hope to we hear more from you.
> > > >
> > > > Bernie
> > > >
> > > > --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
> > > > <patriciasmith@ ...> wrote:
> > > > >
> > > > > Hi
> > > > >
> > > > > I wonder could you post the information, I live in the republic of
> > > > ireland and we have a population of 3500,000million
> > > > > yet where I live and near by three teenagers at the same time were
> > > > diagnosed with ewings sarcoma.
> > > > > two sat beside one another in the same school.
> > > > > my daughter Krystle died of ewings sarcoma at aged 18 years we live
> > > 10
> > > > miles away.
> > > > > I am interested in clusters and I am a member of The bone cancer
> > > > research trust www.bonecancerresea rch.org.uk
> > > > > I got a lot of data from ireland england scotland and wales and we
> > > > seem to have a lot for a small population.
> > > > > there is very little research in this area.
> > > > >
> > > > > regards
> > > > > patricia
> > > > > ireland
> > > > >
> > > > >
> > > > > ----- Original Message -----
> > > > > From: bjyoung716
> > > > > To: ewingssarcoma@ yahoogroups. com
> > > > > Sent: Tuesday, August 05, 2008 9:13 AM
> > > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > >
> > > > >
> > > > >
> > > > > Scott
> > > > >
> > > > > Thank you for your comments. I have just posted three files on this
> > > > > blog (which I think are visible only to members) which answer most
> > > of
> > > > > the points you raise. They are dated and are best read in
> > > > chronological
> > > > > order; they seem to be listed with most recent on top.
> > > > >
> > > > > I would only add that diagnosis is often delayed, which is of
> > > > particular
> > > > > concern for athletes who are used to playing through pain. Our
> > > medical
> > > > > institutions are world class when it comes to confirming a diagnosis
> > > > and
> > > > > treating the disease. At the local level things are more ordinary.
> > > > >
> > > > > This cluster is unique to Cape Cod. There does not seem to be a
> > > > > dramatic elevation in Ewing's anywhere else in New England. It is
> > > 67%
> > > > > more severe than the Woburn Leukemia cluster documented the movie "A
> > > > > Civil Action."
> > > > >
> > > > > I don't know if EMR from our high powered radar station is the
> > > cause,
> > > > > but there are enough reasons to be concerned, and the research
> > > > > surrounding it has been pathetically poor. If anyone is still
> > > > > interested after reading these files, I have a 23 page letter of
> > > > > comments on a recent Environmental Impact Statement I can post.
> > > > >
> > > > > Bernie
> > > > >
> > > > > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice Alcott
> > > > > scottbernice@ wrote:
> > > > > >
> > > > > >
> > > > > > Hi Bernie,
> > > > > >
> > > > > > I'm a Ewing's patient and an American living in Belgium (just 10
> > > > > million people) and have been anecdotally surprised at the number of
> > > > > cases just known to me arising in this small country. Turns out the
> > > > > nephew of a close work colleague also has ewing's, odd. So I started
> > > > > wondering about "clusters" too. After looking into it all, now I'm
> > > not
> > > > > so sure about the anecdotal math I was doing.
> > > > > >
> > > > > > In your case, Ewing's should appear much more often in the cape
> > > > anyway
> > > > > versus the general poulation. Are you controlling for that? Ewing's
> > > is
> > > > a
> > > > > white person's disease (it shows up 9x more often in white people)
> > > and
> > > > > the cape has 80% fewer "non-whites" then the general population.
> > > > Ewing's
> > > > > overwhelmingly clusters in teens 15-19. I don't know if the
> > > incidents
> > > > > you count on the cape include the summer/second home population
> > > which
> > > > > may statistically over-index heavily on families with kids versus
> > > the
> > > > > general population? Last, I've read that Ewing's is often discovered
> > > > > "more" in places with access to top teaching hospitals and places
> > > that
> > > > > do great pathology while other locations fail to accurately
> > > > subclassify
> > > > > tumors as Ewings (they think they are just general sarcomas or
> > > > > osteo-sarcoma, etc.). The cape has access to some of the finest
> > > > doctors,
> > > > > institutions and teaching hospitals in the world. Maybe kids who get
> > > > > painful lumps on the cape get to Boston and correctly diagnosed in
> > > > that
> > > > > area more than kids in other places? I don't know. I just think it's
> > > > > hard to control for all of this and accurately assess things.
> > > Ewing's
> > > > is
> > > > > so small and has so many correlations (age, race, diagnostic
> > > variance)
> > > > > that there is huge statistical "standard error" in the data. Given
> > > all
> > > > > that, I lost confidence in my ability to extrapolate the meaning of
> > > > > variance from 10 cases when there should have 4. Numbers are just
> > > too
> > > > > small. In my case, Belgium is VERY white and it's a world leader in
> > > > > analysis and pathology. I'm not so sure about anything any more!
> > > > > >
> > > > > > Scott
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
> > > > > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > > Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with
> > > a
> > > > > standardized incidence ratio of 3.84 (Massachusetts Department of
> > > > Public
> > > > > Health figure)or 6.67 (my figure). We should see one case every 6.7
> > > > > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and
> > > one
> > > > in
> > > > > 2005. There are cses in 1996 and 1996. There are also adult cases. A
> > > > > pair were diagnosed the same day; the 2 in 2004 the same month. A
> > > pair
> > > > > are 1.75 miles apart; another pair 1/4 mile apart. There is an
> > > > ensemble
> > > > > of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
> > > > > THere is a 13 mile gap between these two ensembles.I am suspicious
> > > of
> > > > a
> > > > > particularly high incidence in athletes or athletically active
> > > > > individuals, although I recognize we are becoming a more active
> > > > > society.Anyone have any observations or concerns to offer to this
> > > > > discussion?Bernie
> > > > > >
> > > > > >
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> > > > > >
> > > > > >
> > > > > >
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> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > __________ Information from ESET NOD32 Antivirus, version of virus
> > > > signature database 3329 (20080805) __________
> > > > >
> > > > > The message was checked by ESET NOD32 Antivirus.
> > > > >
> > > > > http://www.eset. com
> > > > >
> > > > >
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[Non-text portions of this message have been removed]

Hi
I was just thinking about something Krystle was left handed
and I go to a meeting of Bone Cancer research trust in the Uk every 10 weeks and
I was asking the other parents at the meeting and was surprised to learn that
90% of the
their teenagers who got   bone cancer were left-handed, when you go through
everything was it this? was it that.?
and so little research being done into the simple things.
what was the common factor ?

regards
patricia



   ----- Original Message -----
   From: marybeth adkins
   To: ewingssarcoma@yahoogroups.com
   Sent: Thursday, August 07, 2008 5:34 AM
   Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster


   Hi Shauna,

   We were diagnosed at St. Jude Childrens Research Hospital after our local ER
found the tumor, we were sent there immediately. I remind myself that it wasn't
my fault either but it is so frustrating. I knew something wasn't right. One
doctor actually scolded me two weeks before her diagnosis. I took her to ER for
constipation. The x-ray showed constipation and he wanted to know why I didn't
know when she had had her last bowel movement. She is eight years old she
doesn't exactly need me holding her hand. I just look back at the whole
nightmare. But I kept my faith in God! And miracles do happen. We are fifteen
now!

   Marybeth

   --- On Wed, 8/6/08, stamplifter@... <stamplifter@...> wrote:

   From: stamplifter@... <stamplifter@...>
   Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   To: ewingssarcoma@yahoogroups.com
   Date: Wednesday, August 6, 2008, 9:25 PM

   Marybeth,

   I think alot of the ER diagnosis depends on what kind of doctor they are, we
just weren't lucky enough to get an orthopedic oncology doctor. JT ended up with
almost a gallon of fluid on his lungs and found out it was Ewings from there. I
wish I'd known to ask for a CAT scan (had no idea), but everyone I know has
heard my story and if it gets someone to a doctor with a CAT scan or MRI sooner
than later will help the guilt that I feel about it going on for so long. I know
it wasn't my fault but I still find myself saying he might still have his leg if
this was caught sooner.

   I'm so angry it was mistreated for so long. Where were you diagnosed? We
actually had it while stationed in Mississippi but weren't diagnosed until we
moved to Delaware.

   Expecting Miracles,

   Shauna

   ------------ -- Original message ------------ --------- -
   From: marybeth adkins <jazzmbm@yahoo. com>
   >
   > Hi Shauna,
   >
   > I too am interested in the clusters. I can completely associate with you on
the
   > growing pains. That is all I heard for two years on my daughter. Her pains
were
   > in her but. I'm telling you, I felt like an idiot for so long taking her in
with
   > but pain. But we finally hit the er with a more aggressive doctor who did a
cat
   > scan. It wasn't growing pains. It was Ewings Pnet with a tumor the size of a
   > football in an 8 year old little girl.
   > Marybeth
   > --- On Wed, 8/6/08, stamplifter@ comcast.net <stamplifter@ comcast.net>
wrote:
   >
   > From: stamplifter@ comcast.net <stamplifter@ comcast.net>
   > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   > To: ewingssarcoma@ yahoogroups. com
   > Date: Wednesday, August 6, 2008, 6:06 PM
   >
   >
   >
   >
   >
   >
   > I have been reading all of this and I'd like to add my 2 cents. JT broke his
leg
   > Dec.31,04 wasn't diagnosed with Ewings until Nov. 15,07. For at least two
years
   > we had him in and out of the ER and were told growing pains. He was not an
   > athlete and not really active, being 6'1" he always complained that his legs
   > hurt from the time he was five or six years old. I really think the
environment
   > has alot to do with him getting it. I was told most Ewings patients find out
   > because of a broken bone. I am very interested in the clusters and more
info.
   >
   > Thanks for sharing,
   >
   > Shauna Mom to JT
   >
   > ------------ -- Original message ------------ --------- -
   > From: Sharon Kory <sharonlkory@ yahoo.com>
   > > Bernie,
   > >
   > > My son was diagnosed during his first semester at Michigan, my daughter
will
   > be
   > > a sophmore there this fall. Interesting to hear your're an alumni. Haven't
   > yet,
   > > but plan to look at the links you sent and do a little research myself. I,
   > too,
   > > am quite miffed by the fact that no one ever questioned his medical
history to
   > > try and trace back to something, if only for the sake of research. The
other
   > > boys who were diagnosed were athletes as well. I have also questioned the
   > injury
   > > aspect. My son broke his wrist while wrestling in high school, although
his
   > > tumour was on his spine; don't know if theres any correlation.
   > >
   > > Sharon
   > >
   > >
   > > Sharon Kory
   > >
   > > Sharon Kory Interiors Inc
   > > 29000 Inkster Rd. Suite 120
   > > Southfield, MI 48034
   > > phone: 248.357.3600 ext 203
   > > fax: 248.357.3646
   > >
   > > --- On Tue, 8/5/08, bjyoung716 <no_reply@yahoogrou p s.com> wrote:
   > >
   > > From: bjyoung716 <no_reply@yahoogrou p s.com>
   > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   > > To: ewingssarcoma@ yahoogroups. com
   > > Date: Tuesday, August 5, 2008, 9:27 PM
   > >
   > >
   > >
   > >
   > >
   > >
   > >
   > > Sharon & Fawad
   > >
   > > This site had been dormant for a month and all of sudden it's a
   > > whirlwind.
   > >
   > > If you follow the same message I left with Patricia and read the files I
   > > posted, you will get an idea as to how these clusters are studied and
   > > denied through faulty research. I have been working on a list of
   > > exposures which might be factors in Ewing's or any other suspected
   > > cancer excess. I shouldn't have to do this. There are agencies which
   > > ought to be at the task. What we see though is a systematic approach at
   > > denying community cancer clusters.
   > >
   > > I also blog with the National Disease Clusters Alliance. It is a group
   > > of activists, families, victims, doctors, nurses, scientists, and
   > > epidemiologists who have become dissatisfied with the status quo and
   > > feel we ought to be able to find causes for these cancer clusters.
   > > Check out:
   > >
   > > http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/
   > > <http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/ >
   > >
   > > If you go to the "search" window and enter keywords "Cape
   > > Cod" or "Ewing's" you will retrieve all the relevant
   > > messages. I'm going to alert them of the activity on this blog.
   > >
   > > What blows my mind is that three and a half years after my daughter's
   > > diagnosis, no one has even asked for her medical history, let alone
   > > investigate lifestyle factors or potential environmental exposures! If
   > > you don't ask the questions, you don't get the answers.
   > >
   > > Tonight I did a yahoo search on "Hockey" & "Ewing's
   > > sarcoma." You ought to try it. Try it with any sport. My
   > > daughter's sports were volleyball and track, but a football
   > > player/wannabee shot putter uncorked a wild shot and smashed her ankle.
   > > The conventional wisdom, probably 75years old, is that injuries
   > > don't lead to Ewing's. But I've seen so much bad research
   > > recently, and see so many associations between sports injuries and
   > > Ewing's that I think the source of that doctrine should be flushed
   > > out of the literature and re-examined.
   > >
   > > I know Bloomfield Hills as a haven for Michigan grads like me ('68 &
   > > '71). I also used to sail out of Bayview Yacht Club. My first ski
   > > adventure was at Mt. Holly. That was my daughter's name.
   > >
   > > Bernie
   > >
   > > --- In ewingssarcoma@ yahoogroups. com, Sharon Kory <sharonlkory@ ...>
   > > wrote:
   > > >
   > > > My son, now 26 years old, was diagnosed at age 18 with Ewings Sarcoma.
   > > We live in a suburb of Detroit, called Bloomfield Hills. There were at
   > > least three other boys in our general area diagnosed around the same
   > > time with either Ewings Sarcoma or Osteosarcoma, one of them attended
   > > the same high school. I have always found this to be quite peculiar, due
   > > to the rarity. The possibility of some environmental factor
   > > contributing to this disease seems to make sense. My son received 10
   > > months of chemo, radiation and surgery in a wonderful hospital in our
   > > area. We are very fortuneate that he is a healthy survivor. He too was
   > > an athlete, hockey player, wrestler, golfer and was a very active teen.
   > > > I would be interested in anything that would shed some light on why an
   > > otherwise healthy young man, with no family history of cancer could
   > > contract this horrible disease.
   > > > Best to all of you still struggling and or mourning the loss of a
   > > loved one. Our hearts will always be with you.
   > > >
   > > > Sharon Kory
   > > >
   > > > I am very curious
   > > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com wrote:
   > > >
   > > > From: bjyoung716 no_reply@yahoogroup s.com
   > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   > > > To: ewingssarcoma@ yahoogroups. com
   > > > Date: Tuesday, August 5, 2008, 7:56 PM
   > > >
   > > >
   > > >
   > > >
   > > >
   > > >
   > > >
   > > > Patricia
   > > >
   > > > Maine West High School in DesPlaines, Illinois, had cases of Ewing's
   > > > sarcoma in 2003 and 2004 (the latter being a recent graduate). It's a
   > > > big school (5000 or so) just north of O'hare International Airport.
   > > > That community has perceived an excess of cancer, and I have seen
   > > > contours of incidence that diminish the further you get from the
   > > > airport. To have two cases of such a rare disease so close together
   > > > gets your attention, no matter what the epidemiologists say. Your
   > > > information is interesting.
   > > >
   > > > I belong to several yahoo groups, and all are organized differently.
   > > It
   > > > seems members of this group receive new messages automatically, so you
   > > > don't have to visit the home page (unless you want to download files
   > > or
   > > > search for old messages. If you follow this link:
   > > >
   > > > http://health. groups.yahoo. com/group/ ewingssarcoma/
   > > > <http://health. groups.yahoo. com/group/ ewingssarcoma/ >
   > > >
   > > > and click on the word "Files" you can download the files I have
   > > posted.
   > > >
   > > > My sympathies to you on the loss of your daughter. I too lost a
   > > > daughter in January just after her 22 birthday. She battled 3 years,
   > > > and enjoyed much support as she was an active athlete and played on
   > > many
   > > > teams.
   > > >
   > > > If you read my posts, there is an association on Cape Cod between a
   > > > unique electromagnetic radiation exposure and Ewing's. But I think
   > > > there are statistical confounders, and one (on a worldwide basis) is
   > > > contact sports (hockey, football, soccer). I am also suspicious of
   > > > osteochondroma; there seems to be a excess of that disease which
   > > > parallels the Cape Cod Ewing's cluster. After revealing my concerns to
   > > > the state health department, a mother with a son who had Ewing's said
   > > > she had another son with osteochondroma!
   > > >
   > > > Most of our professional epidemiologists are inclined to discredit
   > > talk
   > > > of clusters. But this is the 21st century, and with a better educated
   > > > population, the ability to instantaneously communicate with one
   > > another,
   > > > massive information storage and retrieval technology, and the help of
   > > > some friendly epidemiologists, I beleive we may be able to identify
   > > risk
   > > > factors for Ewing's where none now exist.
   > > >
   > > > Do you have any idea if the is a common exposure to some environmental
   > > > factor in your community or school? Even though I live on this side of
   > > > "the pond," I have seen several stories of Ewing's cases in the same
   > > > geographic area you describe. I'd like to know more about your
   > > > concerns. I don't want to bias your thinking before revealing some of
   > > > the confounding factors that have caught my attention.
   > > >
   > > > Hope to we hear more from you.
   > > >
   > > > Bernie
   > > >
   > > > --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
   > > > <patriciasmith@ ...> wrote:
   > > > >
   > > > > Hi
   > > > >
   > > > > I wonder could you post the information, I live in the republic of
   > > > ireland and we have a population of 3500,000million
   > > > > yet where I live and near by three teenagers at the same time were
   > > > diagnosed with ewings sarcoma.
   > > > > two sat beside one another in the same school.
   > > > > my daughter Krystle died of ewings sarcoma at aged 18 years we live
   > > 10
   > > > miles away.
   > > > > I am interested in clusters and I am a member of The bone cancer
   > > > research trust www.bonecancerresea rch.org.uk
   > > > > I got a lot of data from ireland england scotland and wales and we
   > > > seem to have a lot for a small population.
   > > > > there is very little research in this area.
   > > > >
   > > > > regards
   > > > > patricia
   > > > > ireland
   > > > >
   > > > >
   > > > > ----- Original Message -----
   > > > > From: bjyoung716
   > > > > To: ewingssarcoma@ yahoogroups. com
   > > > > Sent: Tuesday, August 05, 2008 9:13 AM
   > > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   > > > >
   > > > >
   > > > >
   > > > > Scott
   > > > >
   > > > > Thank you for your comments. I have just posted three files on this
   > > > > blog (which I think are visible only to members) which answer most
   > > of
   > > > > the points you raise. They are dated and are best read in
   > > > chronological
   > > > > order; they seem to be listed with most recent on top.
   > > > >
   > > > > I would only add that diagnosis is often delayed, which is of
   > > > particular
   > > > > concern for athletes who are used to playing through pain. Our
   > > medical
   > > > > institutions are world class when it comes to confirming a diagnosis
   > > > and
   > > > > treating the disease. At the local level things are more ordinary.
   > > > >
   > > > > This cluster is unique to Cape Cod. There does not seem to be a
   > > > > dramatic elevation in Ewing's anywhere else in New England. It is
   > > 67%
   > > > > more severe than the Woburn Leukemia cluster documented the movie "A
   > > > > Civil Action."
   > > > >
   > > > > I don't know if EMR from our high powered radar station is the
   > > cause,
   > > > > but there are enough reasons to be concerned, and the research
   > > > > surrounding it has been pathetically poor. If anyone is still
   > > > > interested after reading these files, I have a 23 page letter of
   > > > > comments on a recent Environmental Impact Statement I can post.
   > > > >
   > > > > Bernie
   > > > >
   > > > > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice Alcott
   > > > > scottbernice@ wrote:
   > > > > >
   > > > > >
   > > > > > Hi Bernie,
   > > > > >
   > > > > > I'm a Ewing's patient and an American living in Belgium (just 10
   > > > > million people) and have been anecdotally surprised at the number of
   > > > > cases just known to me arising in this small country. Turns out the
   > > > > nephew of a close work colleague also has ewing's, odd. So I started
   > > > > wondering about "clusters" too. After looking into it all, now I'm
   > > not
   > > > > so sure about the anecdotal math I was doing.
   > > > > >
   > > > > > In your case, Ewing's should appear much more often in the cape
   > > > anyway
   > > > > versus the general poulation. Are you controlling for that? Ewing's
   > > is
   > > > a
   > > > > white person's disease (it shows up 9x more often in white people)
   > > and
   > > > > the cape has 80% fewer "non-whites" then the general population.
   > > > Ewing's
   > > > > overwhelmingly clusters in teens 15-19. I don't know if the
   > > incidents
   > > > > you count on the cape include the summer/second home population
   > > which
   > > > > may statistically over-index heavily on families with kids versus
   > > the
   > > > > general population? Last, I've read that Ewing's is often discovered
   > > > > "more" in places with access to top teaching hospitals and places
   > > that
   > > > > do great pathology while other locations fail to accurately
   > > > subclassify
   > > > > tumors as Ewings (they think they are just general sarcomas or
   > > > > osteo-sarcoma, etc.). The cape has access to some of the finest
   > > > doctors,
   > > > > institutions and teaching hospitals in the world. Maybe kids who get
   > > > > painful lumps on the cape get to Boston and correctly diagnosed in
   > > > that
   > > > > area more than kids in other places? I don't know. I just think it's
   > > > > hard to control for all of this and accurately assess things.
   > > Ewing's
   > > > is
   > > > > so small and has so many correlations (age, race, diagnostic
   > > variance)
   > > > > that there is huge statistical "standard error" in the data. Given
   > > all
   > > > > that, I lost confidence in my ability to extrapolate the meaning of
   > > > > variance from 10 cases when there should have 4. Numbers are just
   > > too
   > > > > small. In my case, Belgium is VERY white and it's a world leader in
   > > > > analysis and pathology. I'm not so sure about anything any more!
   > > > > >
   > > > > > Scott
   > > > > >
   > > > > >
   > > > > >
   > > > > >
   > > > > >
   > > > > >
   > > > > >
   > > > > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
   > > > > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   > > > > >
   > > > > >
   > > > > >
   > > > > >
   > > > > > Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with
   > > a
   > > > > standardized incidence ratio of 3.84 (Massachusetts Department of
   > > > Public
   > > > > Health figure)or 6.67 (my figure). We should see one case every 6.7
   > > > > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and
   > > one
   > > > in
   > > > > 2005. There are cses in 1996 and 1996. There are also adult cases. A
   > > > > pair were diagnosed the same day; the 2 in 2004 the same month. A
   > > pair
   > > > > are 1.75 miles apart; another pair 1/4 mile apart. There is an
   > > > ensemble
   > > > > of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
   > > > > THere is a 13 mile gap between these two ensembles.I am suspicious
   > > of
   > > > a
   > > > > particularly high incidence in athletes or athletically active
   > > > > individuals, although I recognize we are becoming a more active
   > > > > society.Anyone have any observations or concerns to offer to this
   > > > > discussion?Bernie
   > > > > >
   > > > > >
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   > > > > >
   > > > > > [Non-text portions of this message have been removed]
   > > > > >
   > > > >
   > > > >
   > > > >
   > > > >
   > > > >
   > > > > __________ Information from ESET NOD32 Antivirus, version of virus
   > > > signature database 3329 (20080805) __________
   > > > >
   > > > > The message was checked by ESET NOD32 Antivirus.
   > > > >
   > > > > http://www.eset. com
   > > > >
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   __________ Information from ESET NOD32 Antivirus, version of virus signature
database 3336 (20080807) __________

   The message was checked by ESET NOD32 Antivirus.

   http://www.eset.com


[Non-text portions of this message have been removed]

My son Mike was a high school athlete who played football. When he was a senior
he began having pain in his foot-he thought it was related with his running and
football. When he graduated he continued to work out and began college. Within 2
months his foot began to swell and was diagnosed with ewings at Doernbacher
Hospital in Portland Oregon. Mike went to general physican for the pain and
swelling for about 2 months before they gave him a CAT scan where they found the
ewings. By this time it had moved to his lungs.I am also interested in studies
on clusters
 
Teresa Alvarez
Klamath Falls Oregon

--- On Thu, 8/7/08, marybeth adkins <jazzmbm@...> wrote:

From: marybeth adkins <jazzmbm@...>
Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
To: ewingssarcoma@yahoogroups.com
Date: Thursday, August 7, 2008, 5:34 AM






Hi Shauna,
 
We were diagnosed at St. Jude Childrens Research Hospital after our local ER
found the tumor, we were sent there immediately. I remind myself that it wasn't
my fault either but it is so frustrating. I knew something wasn't right. One
doctor actually scolded me two weeks before her diagnosis. I took her to ER for
constipation. The x-ray showed constipation and he wanted to know why I didn't
know when she had had her last bowel movement. She is eight years old she
doesn't exactly need me holding her hand. I just look back at the whole
nightmare. But I kept my faith in God! And miracles do happen. We are fifteen
now!
 
Marybeth

--- On Wed, 8/6/08, stamplifter@ comcast.net <stamplifter@ comcast.net> wrote:

From: stamplifter@ comcast.net <stamplifter@ comcast.net>
Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
To: ewingssarcoma@ yahoogroups. com
Date: Wednesday, August 6, 2008, 9:25 PM

Marybeth,

I think alot of the ER diagnosis depends on what kind of doctor they are, we
just weren't lucky enough to get an orthopedic oncology doctor. JT ended up with
almost a gallon of fluid on his lungs and found out it was Ewings from there. I
wish I'd known to ask for a CAT scan (had no idea), but everyone I know has
heard my story and if it gets someone to a doctor with a CAT scan or MRI sooner
than later will help the guilt that I feel about it going on for so long. I know
it wasn't my fault but I still find myself saying he might still have his leg if
this was caught sooner.

I'm so angry it was mistreated for so long. Where were you diagnosed? We
actually had it while stationed in Mississippi but weren't diagnosed until we
moved to Delaware.

Expecting Miracles,

Shauna

------------ -- Original message ------------ --------- -
From: marybeth adkins <jazzmbm@yahoo. com>
>
> Hi Shauna,
>
> I too am interested in the clusters. I can completely associate with you on
the
> growing pains. That is all I heard for two years on my daughter. Her pains
were
> in her but. I'm telling you, I felt like an idiot for so long taking her in
with
> but pain. But we finally hit the er with a more aggressive doctor who did a
cat
> scan. It wasn't growing pains. It was Ewings Pnet with a tumor the size of a
> football in an 8 year old little girl.
> Marybeth
> --- On Wed, 8/6/08, stamplifter@ comcast.net <stamplifter@ comcast.net> wrote:
>
> From: stamplifter@ comcast.net <stamplifter@ comcast.net>
> Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> To: ewingssarcoma@ yahoogroups. com
> Date: Wednesday, August 6, 2008, 6:06 PM
>
>
>
>
>
>
> I have been reading all of this and I'd like to add my 2 cents. JT broke his
leg
> Dec.31,04 wasn't diagnosed with Ewings until Nov. 15,07. For at least two
years
> we had him in and out of the ER and were told growing pains. He was not an
> athlete and not really active, being 6'1" he always complained that his legs
> hurt from the time he was five or six years old. I really think the
environment
> has alot to do with him getting it. I was told most Ewings patients find out
> because of a broken bone. I am very interested in the clusters and more info.
>
> Thanks for sharing,
>
> Shauna Mom to JT
>
> ------------ -- Original message ------------ --------- -
> From: Sharon Kory <sharonlkory@ yahoo.com>
> > Bernie,
> >
> > My son was diagnosed during his first semester at Michigan, my daughter will
> be
> > a sophmore there this fall. Interesting to hear your're an alumni. Haven't
> yet,
> > but plan to look at the links you sent and do a little research myself. I,
> too,
> > am quite miffed by the fact that no one ever questioned his medical history
to
> > try and trace back to something, if only for the sake of research. The other
> > boys who were diagnosed were athletes as well. I have also questioned the
> injury
> > aspect. My son broke his wrist while wrestling in high school, although his
> > tumour was on his spine; don't know if theres any correlation.
> >
> > Sharon
> >
> >
> > Sharon Kory
> >
> > Sharon Kory Interiors Inc
> > 29000 Inkster Rd. Suite 120
> > Southfield, MI 48034
> > phone: 248.357.3600 ext 203
> > fax: 248.357.3646
> >
> > --- On Tue, 8/5/08, bjyoung716 <no_reply@yahoogrou p s.com> wrote:
> >
> > From: bjyoung716 <no_reply@yahoogrou p s.com>
> > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > To: ewingssarcoma@ yahoogroups. com
> > Date: Tuesday, August 5, 2008, 9:27 PM
> >
> >
> >
> >
> >
> >
> >
> > Sharon & Fawad
> >
> > This site had been dormant for a month and all of sudden it's a
> > whirlwind.
> >
> > If you follow the same message I left with Patricia and read the files I
> > posted, you will get an idea as to how these clusters are studied and
> > denied through faulty research. I have been working on a list of
> > exposures which might be factors in Ewing's or any other suspected
> > cancer excess. I shouldn't have to do this. There are agencies which
> > ought to be at the task. What we see though is a systematic approach at
> > denying community cancer clusters.
> >
> > I also blog with the National Disease Clusters Alliance. It is a group
> > of activists, families, victims, doctors, nurses, scientists, and
> > epidemiologists who have become dissatisfied with the status quo and
> > feel we ought to be able to find causes for these cancer clusters.
> > Check out:
> >
> > http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/
> > <http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/ >
> >
> > If you go to the "search" window and enter keywords "Cape
> > Cod" or "Ewing's" you will retrieve all the relevant
> > messages. I'm going to alert them of the activity on this blog.
> >
> > What blows my mind is that three and a half years after my daughter's
> > diagnosis, no one has even asked for her medical history, let alone
> > investigate lifestyle factors or potential environmental exposures! If
> > you don't ask the questions, you don't get the answers.
> >
> > Tonight I did a yahoo search on "Hockey" & "Ewing's
> > sarcoma." You ought to try it. Try it with any sport. My
> > daughter's sports were volleyball and track, but a football
> > player/wannabee shot putter uncorked a wild shot and smashed her ankle.
> > The conventional wisdom, probably 75years old, is that injuries
> > don't lead to Ewing's. But I've seen so much bad research
> > recently, and see so many associations between sports injuries and
> > Ewing's that I think the source of that doctrine should be flushed
> > out of the literature and re-examined.
> >
> > I know Bloomfield Hills as a haven for Michigan grads like me ('68 &
> > '71). I also used to sail out of Bayview Yacht Club. My first ski
> > adventure was at Mt. Holly. That was my daughter's name.
> >
> > Bernie
> >
> > --- In ewingssarcoma@ yahoogroups. com, Sharon Kory <sharonlkory@ ...>
> > wrote:
> > >
> > > My son, now 26 years old, was diagnosed at age 18 with Ewings Sarcoma.
> > We live in a suburb of Detroit, called Bloomfield Hills. There were at
> > least three other boys in our general area diagnosed around the same
> > time with either Ewings Sarcoma or Osteosarcoma, one of them attended
> > the same high school. I have always found this to be quite peculiar, due
> > to the rarity. The possibility of some environmental factor
> > contributing to this disease seems to make sense. My son received 10
> > months of chemo, radiation and surgery in a wonderful hospital in our
> > area. We are very fortuneate that he is a healthy survivor. He too was
> > an athlete, hockey player, wrestler, golfer and was a very active teen.
> > > I would be interested in anything that would shed some light on why an
> > otherwise healthy young man, with no family history of cancer could
> > contract this horrible disease.
> > > Best to all of you still struggling and or mourning the loss of a
> > loved one. Our hearts will always be with you.
> > >
> > > Sharon Kory
> > >
> > > I am very curious
> > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com wrote:
> > >
> > > From: bjyoung716 no_reply@yahoogroup s.com
> > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > To: ewingssarcoma@ yahoogroups. com
> > > Date: Tuesday, August 5, 2008, 7:56 PM
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > Patricia
> > >
> > > Maine West High School in DesPlaines, Illinois, had cases of Ewing's
> > > sarcoma in 2003 and 2004 (the latter being a recent graduate). It's a
> > > big school (5000 or so) just north of O'hare International Airport.
> > > That community has perceived an excess of cancer, and I have seen
> > > contours of incidence that diminish the further you get from the
> > > airport. To have two cases of such a rare disease so close together
> > > gets your attention, no matter what the epidemiologists say. Your
> > > information is interesting.
> > >
> > > I belong to several yahoo groups, and all are organized differently.
> > It
> > > seems members of this group receive new messages automatically, so you
> > > don't have to visit the home page (unless you want to download files
> > or
> > > search for old messages. If you follow this link:
> > >
> > > http://health. groups.yahoo. com/group/ ewingssarcoma/
> > > <http://health. groups.yahoo. com/group/ ewingssarcoma/ >
> > >
> > > and click on the word "Files" you can download the files I have
> > posted.
> > >
> > > My sympathies to you on the loss of your daughter. I too lost a
> > > daughter in January just after her 22 birthday. She battled 3 years,
> > > and enjoyed much support as she was an active athlete and played on
> > many
> > > teams.
> > >
> > > If you read my posts, there is an association on Cape Cod between a
> > > unique electromagnetic radiation exposure and Ewing's. But I think
> > > there are statistical confounders, and one (on a worldwide basis) is
> > > contact sports (hockey, football, soccer). I am also suspicious of
> > > osteochondroma; there seems to be a excess of that disease which
> > > parallels the Cape Cod Ewing's cluster. After revealing my concerns to
> > > the state health department, a mother with a son who had Ewing's said
> > > she had another son with osteochondroma!
> > >
> > > Most of our professional epidemiologists are inclined to discredit
> > talk
> > > of clusters. But this is the 21st century, and with a better educated
> > > population, the ability to instantaneously communicate with one
> > another,
> > > massive information storage and retrieval technology, and the help of
> > > some friendly epidemiologists, I beleive we may be able to identify
> > risk
> > > factors for Ewing's where none now exist.
> > >
> > > Do you have any idea if the is a common exposure to some environmental
> > > factor in your community or school? Even though I live on this side of
> > > "the pond," I have seen several stories of Ewing's cases in the same
> > > geographic area you describe. I'd like to know more about your
> > > concerns. I don't want to bias your thinking before revealing some of
> > > the confounding factors that have caught my attention.
> > >
> > > Hope to we hear more from you.
> > >
> > > Bernie
> > >
> > > --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
> > > <patriciasmith@ ...> wrote:
> > > >
> > > > Hi
> > > >
> > > > I wonder could you post the information, I live in the republic of
> > > ireland and we have a population of 3500,000million
> > > > yet where I live and near by three teenagers at the same time were
> > > diagnosed with ewings sarcoma.
> > > > two sat beside one another in the same school.
> > > > my daughter Krystle died of ewings sarcoma at aged 18 years we live
> > 10
> > > miles away.
> > > > I am interested in clusters and I am a member of The bone cancer
> > > research trust www.bonecancerresea rch.org.uk
> > > > I got a lot of data from ireland england scotland and wales and we
> > > seem to have a lot for a small population.
> > > > there is very little research in this area.
> > > >
> > > > regards
> > > > patricia
> > > > ireland
> > > >
> > > >
> > > > ----- Original Message -----
> > > > From: bjyoung716
> > > > To: ewingssarcoma@ yahoogroups. com
> > > > Sent: Tuesday, August 05, 2008 9:13 AM
> > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > >
> > > >
> > > >
> > > > Scott
> > > >
> > > > Thank you for your comments. I have just posted three files on this
> > > > blog (which I think are visible only to members) which answer most
> > of
> > > > the points you raise. They are dated and are best read in
> > > chronological
> > > > order; they seem to be listed with most recent on top.
> > > >
> > > > I would only add that diagnosis is often delayed, which is of
> > > particular
> > > > concern for athletes who are used to playing through pain. Our
> > medical
> > > > institutions are world class when it comes to confirming a diagnosis
> > > and
> > > > treating the disease. At the local level things are more ordinary.
> > > >
> > > > This cluster is unique to Cape Cod. There does not seem to be a
> > > > dramatic elevation in Ewing's anywhere else in New England. It is
> > 67%
> > > > more severe than the Woburn Leukemia cluster documented the movie "A
> > > > Civil Action."
> > > >
> > > > I don't know if EMR from our high powered radar station is the
> > cause,
> > > > but there are enough reasons to be concerned, and the research
> > > > surrounding it has been pathetically poor. If anyone is still
> > > > interested after reading these files, I have a 23 page letter of
> > > > comments on a recent Environmental Impact Statement I can post.
> > > >
> > > > Bernie
> > > >
> > > > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice Alcott
> > > > scottbernice@ wrote:
> > > > >
> > > > >
> > > > > Hi Bernie,
> > > > >
> > > > > I'm a Ewing's patient and an American living in Belgium (just 10
> > > > million people) and have been anecdotally surprised at the number of
> > > > cases just known to me arising in this small country. Turns out the
> > > > nephew of a close work colleague also has ewing's, odd. So I started
> > > > wondering about "clusters" too. After looking into it all, now I'm
> > not
> > > > so sure about the anecdotal math I was doing.
> > > > >
> > > > > In your case, Ewing's should appear much more often in the cape
> > > anyway
> > > > versus the general poulation. Are you controlling for that? Ewing's
> > is
> > > a
> > > > white person's disease (it shows up 9x more often in white people)
> > and
> > > > the cape has 80% fewer "non-whites" then the general population.
> > > Ewing's
> > > > overwhelmingly clusters in teens 15-19. I don't know if the
> > incidents
> > > > you count on the cape include the summer/second home population
> > which
> > > > may statistically over-index heavily on families with kids versus
> > the
> > > > general population? Last, I've read that Ewing's is often discovered
> > > > "more" in places with access to top teaching hospitals and places
> > that
> > > > do great pathology while other locations fail to accurately
> > > subclassify
> > > > tumors as Ewings (they think they are just general sarcomas or
> > > > osteo-sarcoma, etc.). The cape has access to some of the finest
> > > doctors,
> > > > institutions and teaching hospitals in the world. Maybe kids who get
> > > > painful lumps on the cape get to Boston and correctly diagnosed in
> > > that
> > > > area more than kids in other places? I don't know. I just think it's
> > > > hard to control for all of this and accurately assess things.
> > Ewing's
> > > is
> > > > so small and has so many correlations (age, race, diagnostic
> > variance)
> > > > that there is huge statistical "standard error" in the data. Given
> > all
> > > > that, I lost confidence in my ability to extrapolate the meaning of
> > > > variance from 10 cases when there should have 4. Numbers are just
> > too
> > > > small. In my case, Belgium is VERY white and it's a world leader in
> > > > analysis and pathology. I'm not so sure about anything any more!
> > > > >
> > > > > Scott
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
> > > > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with
> > a
> > > > standardized incidence ratio of 3.84 (Massachusetts Department of
> > > Public
> > > > Health figure)or 6.67 (my figure). We should see one case every 6.7
> > > > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and
> > one
> > > in
> > > > 2005. There are cses in 1996 and 1996. There are also adult cases. A
> > > > pair were diagnosed the same day; the 2 in 2004 the same month. A
> > pair
> > > > are 1.75 miles apart; another pair 1/4 mile apart. There is an
> > > ensemble
> > > > of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
> > > > THere is a 13 mile gap between these two ensembles.I am suspicious
> > of
> > > a
> > > > particularly high incidence in athletes or athletically active
> > > > individuals, although I recognize we are becoming a more active
> > > > society.Anyone have any observations or concerns to offer to this
> > > > discussion?Bernie
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > [Non-text portions of this message have been removed]
> > > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > __________ Information from ESET NOD32 Antivirus, version of virus
> > > signature database 3329 (20080805) __________
> > > >
> > > > The message was checked by ESET NOD32 Antivirus.
> > > >
> > > > http://www.eset. com
> > > >
> > > >
> > > > [Non-text portions of this message have been removed]
> > > >
> > >
> > > [Non-text portions of this message have been removed]
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> > >
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----- Original Message -----
   From: marybeth adkins
   To: ewingssarcoma@yahoogroups.com
   Sent: Thursday, August 07, 2008 5:34 AM
   Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster


   Hi Shauna,

   We were diagnosed at St. Jude Childrens Research Hospital after our local ER
found the tumor, we were sent there immediately. I remind myself that it wasn't
my fault either but it is so frustrating. I knew something wasn't right. One
doctor actually scolded me two weeks before her diagnosis. I took her to ER for
constipation. The x-ray showed constipation and he wanted to know why I didn't
know when she had had her last bowel movement. She is eight years old she
doesn't exactly need me holding her hand. I just look back at the whole
nightmare. But I kept my faith in God! And miracles do happen. We are fifteen
now!

   Marybeth

   --- On Wed, 8/6/08, stamplifter@... <stamplifter@...> wrote:

   From: stamplifter@... <stamplifter@...>
   Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   To: ewingssarcoma@yahoogroups.com
   Date: Wednesday, August 6, 2008, 9:25 PM

   Marybeth,

   I think alot of the ER diagnosis depends on what kind of doctor they are, we
just weren't lucky enough to get an orthopedic oncology doctor. JT ended up with
almost a gallon of fluid on his lungs and found out it was Ewings from there. I
wish I'd known to ask for a CAT scan (had no idea), but everyone I know has
heard my story and if it gets someone to a doctor with a CAT scan or MRI sooner
than later will help the guilt that I feel about it going on for so long. I know
it wasn't my fault but I still find myself saying he might still have his leg if
this was caught sooner.

   I'm so angry it was mistreated for so long. Where were you diagnosed? We
actually had it while stationed in Mississippi but weren't diagnosed until we
moved to Delaware.

   Expecting Miracles,

   Shauna

   ------------ -- Original message ------------ --------- -
   From: marybeth adkins <jazzmbm@yahoo. com>
   >
   > Hi Shauna,
   >
   > I too am interested in the clusters. I can completely associate with you on
the
   > growing pains. That is all I heard for two years on my daughter. Her pains
were
   > in her but. I'm telling you, I felt like an idiot for so long taking her in
with
   > but pain. But we finally hit the er with a more aggressive doctor who did a
cat
   > scan. It wasn't growing pains. It was Ewings Pnet with a tumor the size of a
   > football in an 8 year old little girl.
   > Marybeth
   > --- On Wed, 8/6/08, stamplifter@ comcast.net <stamplifter@ comcast.net>
wrote:
   >
   > From: stamplifter@ comcast.net <stamplifter@ comcast.net>
   > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   > To: ewingssarcoma@ yahoogroups. com
   > Date: Wednesday, August 6, 2008, 6:06 PM
   >
   >
   >
   >
   >
   >
   > I have been reading all of this and I'd like to add my 2 cents. JT broke his
leg
   > Dec.31,04 wasn't diagnosed with Ewings until Nov. 15,07. For at least two
years
   > we had him in and out of the ER and were told growing pains. He was not an
   > athlete and not really active, being 6'1" he always complained that his legs
   > hurt from the time he was five or six years old. I really think the
environment
   > has alot to do with him getting it. I was told most Ewings patients find out
   > because of a broken bone. I am very interested in the clusters and more
info.
   >
   > Thanks for sharing,
   >
   > Shauna Mom to JT
   >
   > ------------ -- Original message ------------ --------- -
   > From: Sharon Kory <sharonlkory@ yahoo.com>
   > > Bernie,
   > >
   > > My son was diagnosed during his first semester at Michigan, my daughter
will
   > be
   > > a sophmore there this fall. Interesting to hear your're an alumni. Haven't
   > yet,
   > > but plan to look at the links you sent and do a little research myself. I,
   > too,
   > > am quite miffed by the fact that no one ever questioned his medical
history to
   > > try and trace back to something, if only for the sake of research. The
other
   > > boys who were diagnosed were athletes as well. I have also questioned the
   > injury
   > > aspect. My son broke his wrist while wrestling in high school, although
his
   > > tumour was on his spine; don't know if theres any correlation.
   > >
   > > Sharon
   > >
   > >
   > > Sharon Kory
   > >
   > > Sharon Kory Interiors Inc
   > > 29000 Inkster Rd. Suite 120
   > > Southfield, MI 48034
   > > phone: 248.357.3600 ext 203
   > > fax: 248.357.3646
   > >
   > > --- On Tue, 8/5/08, bjyoung716 <no_reply@yahoogrou p s.com> wrote:
   > >
   > > From: bjyoung716 <no_reply@yahoogrou p s.com>
   > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   > > To: ewingssarcoma@ yahoogroups. com
   > > Date: Tuesday, August 5, 2008, 9:27 PM
   > >
   > >
   > >
   > >
   > >
   > >
   > >
   > > Sharon & Fawad
   > >
   > > This site had been dormant for a month and all of sudden it's a
   > > whirlwind.
   > >
   > > If you follow the same message I left with Patricia and read the files I
   > > posted, you will get an idea as to how these clusters are studied and
   > > denied through faulty research. I have been working on a list of
   > > exposures which might be factors in Ewing's or any other suspected
   > > cancer excess. I shouldn't have to do this. There are agencies which
   > > ought to be at the task. What we see though is a systematic approach at
   > > denying community cancer clusters.
   > >
   > > I also blog with the National Disease Clusters Alliance. It is a group
   > > of activists, families, victims, doctors, nurses, scientists, and
   > > epidemiologists who have become dissatisfied with the status quo and
   > > feel we ought to be able to find causes for these cancer clusters.
   > > Check out:
   > >
   > > http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/
   > > <http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/ >
   > >
   > > If you go to the "search" window and enter keywords "Cape
   > > Cod" or "Ewing's" you will retrieve all the relevant
   > > messages. I'm going to alert them of the activity on this blog.
   > >
   > > What blows my mind is that three and a half years after my daughter's
   > > diagnosis, no one has even asked for her medical history, let alone
   > > investigate lifestyle factors or potential environmental exposures! If
   > > you don't ask the questions, you don't get the answers.
   > >
   > > Tonight I did a yahoo search on "Hockey" & "Ewing's
   > > sarcoma." You ought to try it. Try it with any sport. My
   > > daughter's sports were volleyball and track, but a football
   > > player/wannabee shot putter uncorked a wild shot and smashed her ankle.
   > > The conventional wisdom, probably 75years old, is that injuries
   > > don't lead to Ewing's. But I've seen so much bad research
   > > recently, and see so many associations between sports injuries and
   > > Ewing's that I think the source of that doctrine should be flushed
   > > out of the literature and re-examined.
   > >
   > > I know Bloomfield Hills as a haven for Michigan grads like me ('68 &
   > > '71). I also used to sail out of Bayview Yacht Club. My first ski
   > > adventure was at Mt. Holly. That was my daughter's name.
   > >
   > > Bernie
   > >
   > > --- In ewingssarcoma@ yahoogroups. com, Sharon Kory <sharonlkory@ ...>
   > > wrote:
   > > >
   > > > My son, now 26 years old, was diagnosed at age 18 with Ewings Sarcoma.
   > > We live in a suburb of Detroit, called Bloomfield Hills. There were at
   > > least three other boys in our general area diagnosed around the same
   > > time with either Ewings Sarcoma or Osteosarcoma, one of them attended
   > > the same high school. I have always found this to be quite peculiar, due
   > > to the rarity. The possibility of some environmental factor
   > > contributing to this disease seems to make sense. My son received 10
   > > months of chemo, radiation and surgery in a wonderful hospital in our
   > > area. We are very fortuneate that he is a healthy survivor. He too was
   > > an athlete, hockey player, wrestler, golfer and was a very active teen.
   > > > I would be interested in anything that would shed some light on why an
   > > otherwise healthy young man, with no family history of cancer could
   > > contract this horrible disease.
   > > > Best to all of you still struggling and or mourning the loss of a
   > > loved one. Our hearts will always be with you.
   > > >
   > > > Sharon Kory
   > > >
   > > > I am very curious
   > > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com wrote:
   > > >
   > > > From: bjyoung716 no_reply@yahoogroup s.com
   > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   > > > To: ewingssarcoma@ yahoogroups. com
   > > > Date: Tuesday, August 5, 2008, 7:56 PM
   > > >
   > > >
   > > >
   > > >
   > > >
   > > >
   > > >
   > > > Patricia
   > > >
   > > > Maine West High School in DesPlaines, Illinois, had cases of Ewing's
   > > > sarcoma in 2003 and 2004 (the latter being a recent graduate). It's a
   > > > big school (5000 or so) just north of O'hare International Airport.
   > > > That community has perceived an excess of cancer, and I have seen
   > > > contours of incidence that diminish the further you get from the
   > > > airport. To have two cases of such a rare disease so close together
   > > > gets your attention, no matter what the epidemiologists say. Your
   > > > information is interesting.
   > > >
   > > > I belong to several yahoo groups, and all are organized differently.
   > > It
   > > > seems members of this group receive new messages automatically, so you
   > > > don't have to visit the home page (unless you want to download files
   > > or
   > > > search for old messages. If you follow this link:
   > > >
   > > > http://health. groups.yahoo. com/group/ ewingssarcoma/
   > > > <http://health. groups.yahoo. com/group/ ewingssarcoma/ >
   > > >
   > > > and click on the word "Files" you can download the files I have
   > > posted.
   > > >
   > > > My sympathies to you on the loss of your daughter. I too lost a
   > > > daughter in January just after her 22 birthday. She battled 3 years,
   > > > and enjoyed much support as she was an active athlete and played on
   > > many
   > > > teams.
   > > >
   > > > If you read my posts, there is an association on Cape Cod between a
   > > > unique electromagnetic radiation exposure and Ewing's. But I think
   > > > there are statistical confounders, and one (on a worldwide basis) is
   > > > contact sports (hockey, football, soccer). I am also suspicious of
   > > > osteochondroma; there seems to be a excess of that disease which
   > > > parallels the Cape Cod Ewing's cluster. After revealing my concerns to
   > > > the state health department, a mother with a son who had Ewing's said
   > > > she had another son with osteochondroma!
   > > >
   > > > Most of our professional epidemiologists are inclined to discredit
   > > talk
   > > > of clusters. But this is the 21st century, and with a better educated
   > > > population, the ability to instantaneously communicate with one
   > > another,
   > > > massive information storage and retrieval technology, and the help of
   > > > some friendly epidemiologists, I beleive we may be able to identify
   > > risk
   > > > factors for Ewing's where none now exist.
   > > >
   > > > Do you have any idea if the is a common exposure to some environmental
   > > > factor in your community or school? Even though I live on this side of
   > > > "the pond," I have seen several stories of Ewing's cases in the same
   > > > geographic area you describe. I'd like to know more about your
   > > > concerns. I don't want to bias your thinking before revealing some of
   > > > the confounding factors that have caught my attention.
   > > >
   > > > Hope to we hear more from you.
   > > >
   > > > Bernie
   > > >
   > > > --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
   > > > <patriciasmith@ ...> wrote:
   > > > >
   > > > > Hi
   > > > >
   > > > > I wonder could you post the information, I live in the republic of
   > > > ireland and we have a population of 3500,000million
   > > > > yet where I live and near by three teenagers at the same time were
   > > > diagnosed with ewings sarcoma.
   > > > > two sat beside one another in the same school.
   > > > > my daughter Krystle died of ewings sarcoma at aged 18 years we live
   > > 10
   > > > miles away.
   > > > > I am interested in clusters and I am a member of The bone cancer
   > > > research trust www.bonecancerresea rch.org.uk
   > > > > I got a lot of data from ireland england scotland and wales and we
   > > > seem to have a lot for a small population.
   > > > > there is very little research in this area.
   > > > >
   > > > > regards
   > > > > patricia
   > > > > ireland
   > > > >
   > > > >
   > > > > ----- Original Message -----
   > > > > From: bjyoung716
   > > > > To: ewingssarcoma@ yahoogroups. com
   > > > > Sent: Tuesday, August 05, 2008 9:13 AM
   > > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   > > > >
   > > > >
   > > > >
   > > > > Scott
   > > > >
   > > > > Thank you for your comments. I have just posted three files on this
   > > > > blog (which I think are visible only to members) which answer most
   > > of
   > > > > the points you raise. They are dated and are best read in
   > > > chronological
   > > > > order; they seem to be listed with most recent on top.
   > > > >
   > > > > I would only add that diagnosis is often delayed, which is of
   > > > particular
   > > > > concern for athletes who are used to playing through pain. Our
   > > medical
   > > > > institutions are world class when it comes to confirming a diagnosis
   > > > and
   > > > > treating the disease. At the local level things are more ordinary.
   > > > >
   > > > > This cluster is unique to Cape Cod. There does not seem to be a
   > > > > dramatic elevation in Ewing's anywhere else in New England. It is
   > > 67%
   > > > > more severe than the Woburn Leukemia cluster documented the movie "A
   > > > > Civil Action."
   > > > >
   > > > > I don't know if EMR from our high powered radar station is the
   > > cause,
   > > > > but there are enough reasons to be concerned, and the research
   > > > > surrounding it has been pathetically poor. If anyone is still
   > > > > interested after reading these files, I have a 23 page letter of
   > > > > comments on a recent Environmental Impact Statement I can post.
   > > > >
   > > > > Bernie
   > > > >
   > > > > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice Alcott
   > > > > scottbernice@ wrote:
   > > > > >
   > > > > >
   > > > > > Hi Bernie,
   > > > > >
   > > > > > I'm a Ewing's patient and an American living in Belgium (just 10
   > > > > million people) and have been anecdotally surprised at the number of
   > > > > cases just known to me arising in this small country. Turns out the
   > > > > nephew of a close work colleague also has ewing's, odd. So I started
   > > > > wondering about "clusters" too. After looking into it all, now I'm
   > > not
   > > > > so sure about the anecdotal math I was doing.
   > > > > >
   > > > > > In your case, Ewing's should appear much more often in the cape
   > > > anyway
   > > > > versus the general poulation. Are you controlling for that? Ewing's
   > > is
   > > > a
   > > > > white person's disease (it shows up 9x more often in white people)
   > > and
   > > > > the cape has 80% fewer "non-whites" then the general population.
   > > > Ewing's
   > > > > overwhelmingly clusters in teens 15-19. I don't know if the
   > > incidents
   > > > > you count on the cape include the summer/second home population
   > > which
   > > > > may statistically over-index heavily on families with kids versus
   > > the
   > > > > general population? Last, I've read that Ewing's is often discovered
   > > > > "more" in places with access to top teaching hospitals and places
   > > that
   > > > > do great pathology while other locations fail to accurately
   > > > subclassify
   > > > > tumors as Ewings (they think they are just general sarcomas or
   > > > > osteo-sarcoma, etc.). The cape has access to some of the finest
   > > > doctors,
   > > > > institutions and teaching hospitals in the world. Maybe kids who get
   > > > > painful lumps on the cape get to Boston and correctly diagnosed in
   > > > that
   > > > > area more than kids in other places? I don't know. I just think it's
   > > > > hard to control for all of this and accurately assess things.
   > > Ewing's
   > > > is
   > > > > so small and has so many correlations (age, race, diagnostic
   > > variance)
   > > > > that there is huge statistical "standard error" in the data. Given
   > > all
   > > > > that, I lost confidence in my ability to extrapolate the meaning of
   > > > > variance from 10 cases when there should have 4. Numbers are just
   > > too
   > > > > small. In my case, Belgium is VERY white and it's a world leader in
   > > > > analysis and pathology. I'm not so sure about anything any more!
   > > > > >
   > > > > > Scott
   > > > > >
   > > > > >
   > > > > >
   > > > > >
   > > > > >
   > > > > >
   > > > > >
   > > > > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
   > > > > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   > > > > >
   > > > > >
   > > > > >
   > > > > >
   > > > > > Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with
   > > a
   > > > > standardized incidence ratio of 3.84 (Massachusetts Department of
   > > > Public
   > > > > Health figure)or 6.67 (my figure). We should see one case every 6.7
   > > > > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and
   > > one
   > > > in
   > > > > 2005. There are cses in 1996 and 1996. There are also adult cases. A
   > > > > pair were diagnosed the same day; the 2 in 2004 the same month. A
   > > pair
   > > > > are 1.75 miles apart; another pair 1/4 mile apart. There is an
   > > > ensemble
   > > > > of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
   > > > > THere is a 13 mile gap between these two ensembles.I am suspicious
   > > of
   > > > a
   > > > > particularly high incidence in athletes or athletically active
   > > > > individuals, although I recognize we are becoming a more active
   > > > > society.Anyone have any observations or concerns to offer to this
   > > > > discussion?Bernie
   > > > > >
   > > > > >
   > > > > >
   > > > > >
   > > > > >
   > > > > >
   > > > > > [Non-text portions of this message have been removed]
   > > > > >
   > > > >
   > > > >
   > > > >
   > > > >
   > > > >
   > > > > __________ Information from ESET NOD32 Antivirus, version of virus
   > > > signature database 3329 (20080805) __________
   > > > >
   > > > > The message was checked by ESET NOD32 Antivirus.
   > > > >
   > > > > http://www.eset. com
   > > > >
   > > > >
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   __________ Information from ESET NOD32 Antivirus, version of virus signature
database 3336 (20080807) __________

   The message was checked by ESET NOD32 Antivirus.

   http://www.eset.com


[Non-text portions of this message have been removed]

Hi Shauna,
 
We were diagnosed at St. Jude Childrens Research Hospital after our local ER
found the tumor, we were sent there immediately. I remind myself that it wasn't
my fault either but it is so frustrating. I knew something wasn't right. One
doctor actually scolded me two weeks before her diagnosis. I took her to ER for
constipation. The x-ray showed constipation and he wanted to know why I didn't
know when she had had her last bowel movement. She is eight years old she
doesn't exactly need me holding her hand. I just look back at the whole
nightmare. But I kept my faith in God! And miracles do happen. We are fifteen
now!
 
Marybeth

--- On Wed, 8/6/08, stamplifter@... <stamplifter@...> wrote:

From: stamplifter@... <stamplifter@...>
Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
To: ewingssarcoma@yahoogroups.com
Date: Wednesday, August 6, 2008, 9:25 PM






Marybeth,

I think alot of the ER diagnosis depends on what kind of doctor they are, we
just weren't lucky enough to get an orthopedic oncology doctor. JT ended up with
almost a gallon of fluid on his lungs and found out it was Ewings from there. I
wish I'd known to ask for a CAT scan (had no idea), but everyone I know has
heard my story and if it gets someone to a doctor with a CAT scan or MRI sooner
than later will help the guilt that I feel about it going on for so long. I know
it wasn't my fault but I still find myself saying he might still have his leg if
this was caught sooner.

I'm so angry it was mistreated for so long. Where were you diagnosed? We
actually had it while stationed in Mississippi but weren't diagnosed until we
moved to Delaware.

Expecting Miracles,

Shauna

------------ -- Original message ------------ --------- -
From: marybeth adkins <jazzmbm@yahoo. com>
>
> Hi Shauna,
>
> I too am interested in the clusters. I can completely associate with you on
the
> growing pains. That is all I heard for two years on my daughter. Her pains
were
> in her but. I'm telling you, I felt like an idiot for so long taking her in
with
> but pain. But we finally hit the er with a more aggressive doctor who did a
cat
> scan. It wasn't growing pains. It was Ewings Pnet with a tumor the size of a
> football in an 8 year old little girl.
> Marybeth
> --- On Wed, 8/6/08, stamplifter@ comcast.net <stamplifter@ comcast.net> wrote:
>
> From: stamplifter@ comcast.net <stamplifter@ comcast.net>
> Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> To: ewingssarcoma@ yahoogroups. com
> Date: Wednesday, August 6, 2008, 6:06 PM
>
>
>
>
>
>
> I have been reading all of this and I'd like to add my 2 cents. JT broke his
leg
> Dec.31,04 wasn't diagnosed with Ewings until Nov. 15,07. For at least two
years
> we had him in and out of the ER and were told growing pains. He was not an
> athlete and not really active, being 6'1" he always complained that his legs
> hurt from the time he was five or six years old. I really think the
environment
> has alot to do with him getting it. I was told most Ewings patients find out
> because of a broken bone. I am very interested in the clusters and more info.
>
> Thanks for sharing,
>
> Shauna Mom to JT
>
> ------------ -- Original message ------------ --------- -
> From: Sharon Kory <sharonlkory@ yahoo.com>
> > Bernie,
> >
> > My son was diagnosed during his first semester at Michigan, my daughter will
> be
> > a sophmore there this fall. Interesting to hear your're an alumni. Haven't
> yet,
> > but plan to look at the links you sent and do a little research myself. I,
> too,
> > am quite miffed by the fact that no one ever questioned his medical history
to
> > try and trace back to something, if only for the sake of research. The other
> > boys who were diagnosed were athletes as well. I have also questioned the
> injury
> > aspect. My son broke his wrist while wrestling in high school, although his
> > tumour was on his spine; don't know if theres any correlation.
> >
> > Sharon
> >
> >
> > Sharon Kory
> >
> > Sharon Kory Interiors Inc
> > 29000 Inkster Rd. Suite 120
> > Southfield, MI 48034
> > phone: 248.357.3600 ext 203
> > fax: 248.357.3646
> >
> > --- On Tue, 8/5/08, bjyoung716 <no_reply@yahoogrou p s.com> wrote:
> >
> > From: bjyoung716 <no_reply@yahoogrou p s.com>
> > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > To: ewingssarcoma@ yahoogroups. com
> > Date: Tuesday, August 5, 2008, 9:27 PM
> >
> >
> >
> >
> >
> >
> >
> > Sharon & Fawad
> >
> > This site had been dormant for a month and all of sudden it's a
> > whirlwind.
> >
> > If you follow the same message I left with Patricia and read the files I
> > posted, you will get an idea as to how these clusters are studied and
> > denied through faulty research. I have been working on a list of
> > exposures which might be factors in Ewing's or any other suspected
> > cancer excess. I shouldn't have to do this. There are agencies which
> > ought to be at the task. What we see though is a systematic approach at
> > denying community cancer clusters.
> >
> > I also blog with the National Disease Clusters Alliance. It is a group
> > of activists, families, victims, doctors, nurses, scientists, and
> > epidemiologists who have become dissatisfied with the status quo and
> > feel we ought to be able to find causes for these cancer clusters.
> > Check out:
> >
> > http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/
> > <http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/ >
> >
> > If you go to the "search" window and enter keywords "Cape
> > Cod" or "Ewing's" you will retrieve all the relevant
> > messages. I'm going to alert them of the activity on this blog.
> >
> > What blows my mind is that three and a half years after my daughter's
> > diagnosis, no one has even asked for her medical history, let alone
> > investigate lifestyle factors or potential environmental exposures! If
> > you don't ask the questions, you don't get the answers.
> >
> > Tonight I did a yahoo search on "Hockey" & "Ewing's
> > sarcoma." You ought to try it. Try it with any sport. My
> > daughter's sports were volleyball and track, but a football
> > player/wannabee shot putter uncorked a wild shot and smashed her ankle.
> > The conventional wisdom, probably 75years old, is that injuries
> > don't lead to Ewing's. But I've seen so much bad research
> > recently, and see so many associations between sports injuries and
> > Ewing's that I think the source of that doctrine should be flushed
> > out of the literature and re-examined.
> >
> > I know Bloomfield Hills as a haven for Michigan grads like me ('68 &
> > '71). I also used to sail out of Bayview Yacht Club. My first ski
> > adventure was at Mt. Holly. That was my daughter's name.
> >
> > Bernie
> >
> > --- In ewingssarcoma@ yahoogroups. com, Sharon Kory <sharonlkory@ ...>
> > wrote:
> > >
> > > My son, now 26 years old, was diagnosed at age 18 with Ewings Sarcoma.
> > We live in a suburb of Detroit, called Bloomfield Hills. There were at
> > least three other boys in our general area diagnosed around the same
> > time with either Ewings Sarcoma or Osteosarcoma, one of them attended
> > the same high school. I have always found this to be quite peculiar, due
> > to the rarity. The possibility of some environmental factor
> > contributing to this disease seems to make sense. My son received 10
> > months of chemo, radiation and surgery in a wonderful hospital in our
> > area. We are very fortuneate that he is a healthy survivor. He too was
> > an athlete, hockey player, wrestler, golfer and was a very active teen.
> > > I would be interested in anything that would shed some light on why an
> > otherwise healthy young man, with no family history of cancer could
> > contract this horrible disease.
> > > Best to all of you still struggling and or mourning the loss of a
> > loved one. Our hearts will always be with you.
> > >
> > > Sharon Kory
> > >
> > > I am very curious
> > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com wrote:
> > >
> > > From: bjyoung716 no_reply@yahoogroup s.com
> > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > To: ewingssarcoma@ yahoogroups. com
> > > Date: Tuesday, August 5, 2008, 7:56 PM
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > Patricia
> > >
> > > Maine West High School in DesPlaines, Illinois, had cases of Ewing's
> > > sarcoma in 2003 and 2004 (the latter being a recent graduate). It's a
> > > big school (5000 or so) just north of O'hare International Airport.
> > > That community has perceived an excess of cancer, and I have seen
> > > contours of incidence that diminish the further you get from the
> > > airport. To have two cases of such a rare disease so close together
> > > gets your attention, no matter what the epidemiologists say. Your
> > > information is interesting.
> > >
> > > I belong to several yahoo groups, and all are organized differently.
> > It
> > > seems members of this group receive new messages automatically, so you
> > > don't have to visit the home page (unless you want to download files
> > or
> > > search for old messages. If you follow this link:
> > >
> > > http://health. groups.yahoo. com/group/ ewingssarcoma/
> > > <http://health. groups.yahoo. com/group/ ewingssarcoma/ >
> > >
> > > and click on the word "Files" you can download the files I have
> > posted.
> > >
> > > My sympathies to you on the loss of your daughter. I too lost a
> > > daughter in January just after her 22 birthday. She battled 3 years,
> > > and enjoyed much support as she was an active athlete and played on
> > many
> > > teams.
> > >
> > > If you read my posts, there is an association on Cape Cod between a
> > > unique electromagnetic radiation exposure and Ewing's. But I think
> > > there are statistical confounders, and one (on a worldwide basis) is
> > > contact sports (hockey, football, soccer). I am also suspicious of
> > > osteochondroma; there seems to be a excess of that disease which
> > > parallels the Cape Cod Ewing's cluster. After revealing my concerns to
> > > the state health department, a mother with a son who had Ewing's said
> > > she had another son with osteochondroma!
> > >
> > > Most of our professional epidemiologists are inclined to discredit
> > talk
> > > of clusters. But this is the 21st century, and with a better educated
> > > population, the ability to instantaneously communicate with one
> > another,
> > > massive information storage and retrieval technology, and the help of
> > > some friendly epidemiologists, I beleive we may be able to identify
> > risk
> > > factors for Ewing's where none now exist.
> > >
> > > Do you have any idea if the is a common exposure to some environmental
> > > factor in your community or school? Even though I live on this side of
> > > "the pond," I have seen several stories of Ewing's cases in the same
> > > geographic area you describe. I'd like to know more about your
> > > concerns. I don't want to bias your thinking before revealing some of
> > > the confounding factors that have caught my attention.
> > >
> > > Hope to we hear more from you.
> > >
> > > Bernie
> > >
> > > --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
> > > <patriciasmith@ ...> wrote:
> > > >
> > > > Hi
> > > >
> > > > I wonder could you post the information, I live in the republic of
> > > ireland and we have a population of 3500,000million
> > > > yet where I live and near by three teenagers at the same time were
> > > diagnosed with ewings sarcoma.
> > > > two sat beside one another in the same school.
> > > > my daughter Krystle died of ewings sarcoma at aged 18 years we live
> > 10
> > > miles away.
> > > > I am interested in clusters and I am a member of The bone cancer
> > > research trust www.bonecancerresea rch.org.uk
> > > > I got a lot of data from ireland england scotland and wales and we
> > > seem to have a lot for a small population.
> > > > there is very little research in this area.
> > > >
> > > > regards
> > > > patricia
> > > > ireland
> > > >
> > > >
> > > > ----- Original Message -----
> > > > From: bjyoung716
> > > > To: ewingssarcoma@ yahoogroups. com
> > > > Sent: Tuesday, August 05, 2008 9:13 AM
> > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > >
> > > >
> > > >
> > > > Scott
> > > >
> > > > Thank you for your comments. I have just posted three files on this
> > > > blog (which I think are visible only to members) which answer most
> > of
> > > > the points you raise. They are dated and are best read in
> > > chronological
> > > > order; they seem to be listed with most recent on top.
> > > >
> > > > I would only add that diagnosis is often delayed, which is of
> > > particular
> > > > concern for athletes who are used to playing through pain. Our
> > medical
> > > > institutions are world class when it comes to confirming a diagnosis
> > > and
> > > > treating the disease. At the local level things are more ordinary.
> > > >
> > > > This cluster is unique to Cape Cod. There does not seem to be a
> > > > dramatic elevation in Ewing's anywhere else in New England. It is
> > 67%
> > > > more severe than the Woburn Leukemia cluster documented the movie "A
> > > > Civil Action."
> > > >
> > > > I don't know if EMR from our high powered radar station is the
> > cause,
> > > > but there are enough reasons to be concerned, and the research
> > > > surrounding it has been pathetically poor. If anyone is still
> > > > interested after reading these files, I have a 23 page letter of
> > > > comments on a recent Environmental Impact Statement I can post.
> > > >
> > > > Bernie
> > > >
> > > > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice Alcott
> > > > scottbernice@ wrote:
> > > > >
> > > > >
> > > > > Hi Bernie,
> > > > >
> > > > > I'm a Ewing's patient and an American living in Belgium (just 10
> > > > million people) and have been anecdotally surprised at the number of
> > > > cases just known to me arising in this small country. Turns out the
> > > > nephew of a close work colleague also has ewing's, odd. So I started
> > > > wondering about "clusters" too. After looking into it all, now I'm
> > not
> > > > so sure about the anecdotal math I was doing.
> > > > >
> > > > > In your case, Ewing's should appear much more often in the cape
> > > anyway
> > > > versus the general poulation. Are you controlling for that? Ewing's
> > is
> > > a
> > > > white person's disease (it shows up 9x more often in white people)
> > and
> > > > the cape has 80% fewer "non-whites" then the general population.
> > > Ewing's
> > > > overwhelmingly clusters in teens 15-19. I don't know if the
> > incidents
> > > > you count on the cape include the summer/second home population
> > which
> > > > may statistically over-index heavily on families with kids versus
> > the
> > > > general population? Last, I've read that Ewing's is often discovered
> > > > "more" in places with access to top teaching hospitals and places
> > that
> > > > do great pathology while other locations fail to accurately
> > > subclassify
> > > > tumors as Ewings (they think they are just general sarcomas or
> > > > osteo-sarcoma, etc.). The cape has access to some of the finest
> > > doctors,
> > > > institutions and teaching hospitals in the world. Maybe kids who get
> > > > painful lumps on the cape get to Boston and correctly diagnosed in
> > > that
> > > > area more than kids in other places? I don't know. I just think it's
> > > > hard to control for all of this and accurately assess things.
> > Ewing's
> > > is
> > > > so small and has so many correlations (age, race, diagnostic
> > variance)
> > > > that there is huge statistical "standard error" in the data. Given
> > all
> > > > that, I lost confidence in my ability to extrapolate the meaning of
> > > > variance from 10 cases when there should have 4. Numbers are just
> > too
> > > > small. In my case, Belgium is VERY white and it's a world leader in
> > > > analysis and pathology. I'm not so sure about anything any more!
> > > > >
> > > > > Scott
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
> > > > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with
> > a
> > > > standardized incidence ratio of 3.84 (Massachusetts Department of
> > > Public
> > > > Health figure)or 6.67 (my figure). We should see one case every 6.7
> > > > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and
> > one
> > > in
> > > > 2005. There are cses in 1996 and 1996. There are also adult cases. A
> > > > pair were diagnosed the same day; the 2 in 2004 the same month. A
> > pair
> > > > are 1.75 miles apart; another pair 1/4 mile apart. There is an
> > > ensemble
> > > > of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
> > > > THere is a 13 mile gap between these two ensembles.I am suspicious
> > of
> > > a
> > > > particularly high incidence in athletes or athletically active
> > > > individuals, although I recognize we are becoming a more active
> > > > society.Anyone have any observations or concerns to offer to this
> > > > discussion?Bernie
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > [Non-text portions of this message have been removed]
> > > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > __________ Information from ESET NOD32 Antivirus, version of virus
> > > signature database 3329 (20080805) __________
> > > >
> > > > The message was checked by ESET NOD32 Antivirus.
> > > >
> > > > http://www.eset. com
> > > >
> > > >
> > > > [Non-text portions of this message have been removed]
> > > >
> > >
> > > [Non-text portions of this message have been removed]
> > >
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Hi

my daughter Krystle in the February 2001 was playing rackettball in the local
leisure centre she was a tall young girl of 17 years old she tripped and fell
against the wall
and gave her back a terrible bang, at the end of april 2001 a large soft
swelling appeared and we were told it was nothing
in the next ten weeks it got bigger and harder, it had been xrayed the first
week of may and we were told there was nothing there
by someone in the xray dept we had no idea that a consultant radiologist had to
read an xray not some-one taking the xray.
I had been rubbing creams on it thinking it was going to go away then I
investigated further and all hell broke loose. the swelling became as hard a
rock and as large as a lemon it was unreal.it was on the 9th rib the exact spot
she had hit her back of that
wall. having said that the january before march she had been suffering from
chest infections and flu, something in her life she never
had. she was a fine healthy baby, and never had to visit the doctor in her life
before this.
the tumour was 8 cm long but it had spread to the bone marrow and there was no
treatment in ireland for it.

I asked the girl she was playing racketball with after she died, what exactly
happened she said it was a bad fall.

I feel that was the start of it, the bang triggered it off.

so in a short space of time from I would say 8 weeks from the bang to the
swelling on the rib the exact spot it developed.

regards

patricia


   ----- Original Message -----
   From: bjyoung716
   To: ewingssarcoma@yahoogroups.com
   Sent: Wednesday, August 06, 2008 8:28 PM
   Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster



   Shauna, and other friends out there in the blogosphere:

   This has been a busy 24 hours. I'd like to offer some observations of
   what's on people's minds.

   1) There are confirmed and suspected clusters of Ewing's out there, and
   there is little documention in the medical or epidemiologic literature
   about them.

   2)There are associations between environmental factors and Ewing's, and
   between athletic activity and Ewing's, and between skeletal injuries and
   Ewing's. The latter two go hand in hand.

   3)It is incomprehensible that these rare events are not met with enough
   concern to warrant a documention of medical history, lifestyle history,
   suspected environmental factors, etc. which may lead to identification
   of risk factors or even a cause. Even a solitary case in a remote or an
   unpopulated area should be documented for further investigation.

   Shauna, there are personal and epidemiologic issues surrounding your
   concerns. There is a cause for each of these cases. We will never know
   what that cause is in each case, but the enemy is not ourselves. As
   Holly's surgeon told her at the initial appointment, this did not
   happen because you didn't take the garbage out, and it did not happen
   because your parents asked you to take the garbage out. And you didn't
   miss the daignosis. Holly was given Bextra for tendonitis until the
   pain was so great she couldn't sleep. She named her Ewing's
   "tumoritis."

   There is another potential problem for athletes. They are used to
   playing through pain, and often ignore pain too long. This is important
   for athletic directors, coaches, trainors, and the athletes themselves.
   There is a considerable body of literature on discriminating between
   injury and illness. Everyone in sports needs to pay attention to it.

   Even if statisticians tell us these are random events, that does not
   mean that there is not a cause for every case, or that there are not
   common factors among some cases. Once you identify any common factor,
   the next step is one of measurement. If an increase in exposure to a
   factor leads to an increase in the effect, then that factor is a cause.
   This works well in the laboratory where you can control the factors and
   measure them as you do in an experiment. We cannot ethically experiment
   on human beings. Life is a natural experiment with many factors not
   under our control. It would help if each of the 250 or so cases
   diagnosed each year just in the States had a medical, lifestyle, and
   environmental history to analyze. With the information technology,
   communications, and computer power available in the 21st century, we
   should be doing better.

   A lot of people note skeletal injuries occurred before the onset of
   Ewing's. This is discounted by the medical community; it's a doctrine.
   However, experience shows that many medical doctrines are reversed, and
   even re-reversed and reversed again. There are ample examples of
   associations that have been missed in research studies, and ample
   examples of bias. Someday I'd like to see the research behind this
   doctrine, and see it re-evaluated with contemporary data.

   Shauna, you said you were stationed in Mississippi. Coast Guard, Air
   Force, Corps of Engineers?

   Bernie

   --- In ewingssarcoma@yahoogroups.com, stamplifter@... wrote:
   >
   > Marybeth,
   >
   > I think alot of the ER diagnosis depends on what kind of doctor they
   are, we just weren't lucky enough to get an orthopedic oncology doctor.
   JT ended up with almost a gallon of fluid on his lungs and found out it
   was Ewings from there. I wish I'd known to ask for a CAT scan (had no
   idea), but everyone I know has heard my story and if it gets someone to
   a doctor with a CAT scan or MRI sooner than later will help the guilt
   that I feel about it going on for so long. I know it wasn't my fault but
   I still find myself saying he might still have his leg if this was
   caught sooner.
   >
   > I'm so angry it was mistreated for so long. Where were you diagnosed?
   We actually had it while stationed in Mississippi but weren't diagnosed
   until we moved to Delaware.
   >
   > Expecting Miracles,
   >
   > Shauna
   >
   > -------------- Original message ----------------------
   > From: marybeth adkins jazzmbm@...
   > >
   > > Hi Shauna,
   > >
   > > I too am interested in the clusters. I can completely associate with
   you on the
   > > growing pains. That is all I heard for two years on my daughter. Her
   pains were
   > > in her but. I'm telling you, I felt like an idiot for so long taking
   her in with
   > > but pain. But we finally hit the er with a more aggressive doctor
   who did a cat
   > > scan. It wasn't growing pains. It was Ewings Pnet with a tumor the
   size of a
   > > football in an 8 year old little girl.
   > > Marybeth
   > > --- On Wed, 8/6/08, stamplifter@... stamplifter@... wrote:
   > >
   > > From: stamplifter@... stamplifter@...
   > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   > > To: ewingssarcoma@yahoogroups.com
   > > Date: Wednesday, August 6, 2008, 6:06 PM
   > >
   > >
   > >
   > >
   > >
   > >
   > > I have been reading all of this and I'd like to add my 2 cents. JT
   broke his leg
   > > Dec.31,04 wasn't diagnosed with Ewings until Nov. 15,07. For at
   least two years
   > > we had him in and out of the ER and were told growing pains. He was
   not an
   > > athlete and not really active, being 6'1" he always complained that
   his legs
   > > hurt from the time he was five or six years old. I really think the
   environment
   > > has alot to do with him getting it. I was told most Ewings patients
   find out
   > > because of a broken bone. I am very interested in the clusters and
   more info.
   > >
   > > Thanks for sharing,
   > >
   > > Shauna Mom to JT
   > >
   > > ------------ -- Original message ------------ --------- -
   > > From: Sharon Kory <sharonlkory@ yahoo.com>
   > > > Bernie,
   > > >
   > > > My son was diagnosed during his first semester at Michigan, my
   daughter will
   > > be
   > > > a sophmore there this fall. Interesting to hear your're an alumni.
   Haven't
   > > yet,
   > > > but plan to look at the links you sent and do a little research
   myself. I,
   > > too,
   > > > am quite miffed by the fact that no one ever questioned his
   medical history to
   > > > try and trace back to something, if only for the sake of research.
   The other
   > > > boys who were diagnosed were athletes as well. I have also
   questioned the
   > > injury
   > > > aspect. My son broke his wrist while wrestling in high school,
   although his
   > > > tumour was on his spine; don't know if theres any correlation.
   > > >
   > > > Sharon
   > > >
   > > >
   > > > Sharon Kory
   > > >
   > > > Sharon Kory Interiors Inc
   > > > 29000 Inkster Rd. Suite 120
   > > > Southfield, MI 48034
   > > > phone: 248.357.3600 ext 203
   > > > fax: 248.357.3646
   > > >
   > > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com> wrote:
   > > >
   > > > From: bjyoung716 no_reply@yahoogroup s.com>
   > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   > > > To: ewingssarcoma@ yahoogroups. com
   > > > Date: Tuesday, August 5, 2008, 9:27 PM
   > > >
   > > >
   > > >
   > > >
   > > >
   > > >
   > > >
   > > > Sharon & Fawad
   > > >
   > > > This site had been dormant for a month and all of sudden it's a
   > > > whirlwind.
   > > >
   > > > If you follow the same message I left with Patricia and read the
   files I
   > > > posted, you will get an idea as to how these clusters are studied
   and
   > > > denied through faulty research. I have been working on a list of
   > > > exposures which might be factors in Ewing's or any other suspected
   > > > cancer excess. I shouldn't have to do this. There are agencies
   which
   > > > ought to be at the task. What we see though is a systematic
   approach at
   > > > denying community cancer clusters.
   > > >
   > > > I also blog with the National Disease Clusters Alliance. It is a
   group
   > > > of activists, families, victims, doctors, nurses, scientists, and
   > > > epidemiologists who have become dissatisfied with the status quo
   and
   > > > feel we ought to be able to find causes for these cancer clusters.
   > > > Check out:
   > > >
   > > > http://tech. groups.yahoo. com/group/ NationalDiseaseC
   lustersAlliance/
   > > > <http://tech. groups.yahoo. com/group/ NationalDiseaseC
   lustersAlliance/ >
   > > >
   > > > If you go to the "search" window and enter keywords "Cape
   > > > Cod" or "Ewing's" you will retrieve all the relevant
   > > > messages. I'm going to alert them of the activity on this blog.
   > > >
   > > > What blows my mind is that three and a half years after my
   daughter's
   > > > diagnosis, no one has even asked for her medical history, let
   alone
   > > > investigate lifestyle factors or potential environmental
   exposures! If
   > > > you don't ask the questions, you don't get the answers.
   > > >
   > > > Tonight I did a yahoo search on "Hockey" & "Ewing's
   > > > sarcoma." You ought to try it. Try it with any sport. My
   > > > daughter's sports were volleyball and track, but a football
   > > > player/wannabee shot putter uncorked a wild shot and smashed her
   ankle.
   > > > The conventional wisdom, probably 75years old, is that injuries
   > > > don't lead to Ewing's. But I've seen so much bad research
   > > > recently, and see so many associations between sports injuries and
   > > > Ewing's that I think the source of that doctrine should be flushed
   > > > out of the literature and re-examined.
   > > >
   > > > I know Bloomfield Hills as a haven for Michigan grads like me ('68
   &
   > > > '71). I also used to sail out of Bayview Yacht Club. My first ski
   > > > adventure was at Mt. Holly. That was my daughter's name.
   > > >
   > > > Bernie
   > > >
   > > > --- In ewingssarcoma@ yahoogroups. com, Sharon Kory <sharonlkory@
   ...>
   > > > wrote:
   > > > >
   > > > > My son, now 26 years old, was diagnosed at age 18 with Ewings
   Sarcoma.
   > > > We live in a suburb of Detroit, called Bloomfield Hills. There
   were at
   > > > least three other boys in our general area diagnosed around the
   same
   > > > time with either Ewings Sarcoma or Osteosarcoma, one of them
   attended
   > > > the same high school. I have always found this to be quite
   peculiar, due
   > > > to the rarity. The possibility of some environmental factor
   > > > contributing to this disease seems to make sense. My son received
   10
   > > > months of chemo, radiation and surgery in a wonderful hospital in
   our
   > > > area. We are very fortuneate that he is a healthy survivor. He too
   was
   > > > an athlete, hockey player, wrestler, golfer and was a very active
   teen.
   > > > > I would be interested in anything that would shed some light on
   why an
   > > > otherwise healthy young man, with no family history of cancer
   could
   > > > contract this horrible disease.
   > > > > Best to all of you still struggling and or mourning the loss of
   a
   > > > loved one. Our hearts will always be with you.
   > > > >
   > > > > Sharon Kory
   > > > >
   > > > > I am very curious
   > > > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com wrote:
   > > > >
   > > > > From: bjyoung716 no_reply@yahoogroup s.com
   > > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   > > > > To: ewingssarcoma@ yahoogroups. com
   > > > > Date: Tuesday, August 5, 2008, 7:56 PM
   > > > >
   > > > >
   > > > >
   > > > >
   > > > >
   > > > >
   > > > >
   > > > > Patricia
   > > > >
   > > > > Maine West High School in DesPlaines, Illinois, had cases of
   Ewing's
   > > > > sarcoma in 2003 and 2004 (the latter being a recent graduate).
   It's a
   > > > > big school (5000 or so) just north of O'hare International
   Airport.
   > > > > That community has perceived an excess of cancer, and I have
   seen
   > > > > contours of incidence that diminish the further you get from the
   > > > > airport. To have two cases of such a rare disease so close
   together
   > > > > gets your attention, no matter what the epidemiologists say.
   Your
   > > > > information is interesting.
   > > > >
   > > > > I belong to several yahoo groups, and all are organized
   differently.
   > > > It
   > > > > seems members of this group receive new messages automatically,
   so you
   > > > > don't have to visit the home page (unless you want to download
   files
   > > > or
   > > > > search for old messages. If you follow this link:
   > > > >
   > > > > http://health. groups.yahoo. com/group/ ewingssarcoma/
   > > > > <http://health. groups.yahoo. com/group/ ewingssarcoma/ >
   > > > >
   > > > > and click on the word "Files" you can download the files I have
   > > > posted.
   > > > >
   > > > > My sympathies to you on the loss of your daughter. I too lost a
   > > > > daughter in January just after her 22 birthday. She battled 3
   years,
   > > > > and enjoyed much support as she was an active athlete and played
   on
   > > > many
   > > > > teams.
   > > > >
   > > > > If you read my posts, there is an association on Cape Cod
   between a
   > > > > unique electromagnetic radiation exposure and Ewing's. But I
   think
   > > > > there are statistical confounders, and one (on a worldwide
   basis) is
   > > > > contact sports (hockey, football, soccer). I am also suspicious
   of
   > > > > osteochondroma; there seems to be a excess of that disease which
   > > > > parallels the Cape Cod Ewing's cluster. After revealing my
   concerns to
   > > > > the state health department, a mother with a son who had Ewing's
   said
   > > > > she had another son with osteochondroma!
   > > > >
   > > > > Most of our professional epidemiologists are inclined to
   discredit
   > > > talk
   > > > > of clusters. But this is the 21st century, and with a better
   educated
   > > > > population, the ability to instantaneously communicate with one
   > > > another,
   > > > > massive information storage and retrieval technology, and the
   help of
   > > > > some friendly epidemiologists, I beleive we may be able to
   identify
   > > > risk
   > > > > factors for Ewing's where none now exist.
   > > > >
   > > > > Do you have any idea if the is a common exposure to some
   environmental
   > > > > factor in your community or school? Even though I live on this
   side of
   > > > > "the pond," I have seen several stories of Ewing's cases in the
   same
   > > > > geographic area you describe. I'd like to know more about your
   > > > > concerns. I don't want to bias your thinking before revealing
   some of
   > > > > the confounding factors that have caught my attention.
   > > > >
   > > > > Hope to we hear more from you.
   > > > >
   > > > > Bernie
   > > > >
   > > > > --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
   > > > > <patriciasmith@ ...> wrote:
   > > > > >
   > > > > > Hi
   > > > > >
   > > > > > I wonder could you post the information, I live in the
   republic of
   > > > > ireland and we have a population of 3500,000million
   > > > > > yet where I live and near by three teenagers at the same time
   were
   > > > > diagnosed with ewings sarcoma.
   > > > > > two sat beside one another in the same school.
   > > > > > my daughter Krystle died of ewings sarcoma at aged 18 years we
   live
   > > > 10
   > > > > miles away.
   > > > > > I am interested in clusters and I am a member of The bone
   cancer
   > > > > research trust www.bonecancerresea rch.org.uk
   > > > > > I got a lot of data from ireland england scotland and wales
   and we
   > > > > seem to have a lot for a small population.
   > > > > > there is very little research in this area.
   > > > > >
   > > > > > regards
   > > > > > patricia
   > > > > > ireland
   > > > > >
   > > > > >
   > > > > > ----- Original Message -----
   > > > > > From: bjyoung716
   > > > > > To: ewingssarcoma@ yahoogroups. com
   > > > > > Sent: Tuesday, August 05, 2008 9:13 AM
   > > > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   > > > > >
   > > > > >
   > > > > >
   > > > > > Scott
   > > > > >
   > > > > > Thank you for your comments. I have just posted three files on
   this
   > > > > > blog (which I think are visible only to members) which answer
   most
   > > > of
   > > > > > the points you raise. They are dated and are best read in
   > > > > chronological
   > > > > > order; they seem to be listed with most recent on top.
   > > > > >
   > > > > > I would only add that diagnosis is often delayed, which is of
   > > > > particular
   > > > > > concern for athletes who are used to playing through pain. Our
   > > > medical
   > > > > > institutions are world class when it comes to confirming a
   diagnosis
   > > > > and
   > > > > > treating the disease. At the local level things are more
   ordinary.
   > > > > >
   > > > > > This cluster is unique to Cape Cod. There does not seem to be
   a
   > > > > > dramatic elevation in Ewing's anywhere else in New England. It
   is
   > > > 67%
   > > > > > more severe than the Woburn Leukemia cluster documented the
   movie "A
   > > > > > Civil Action."
   > > > > >
   > > > > > I don't know if EMR from our high powered radar station is the
   > > > cause,
   > > > > > but there are enough reasons to be concerned, and the research
   > > > > > surrounding it has been pathetically poor. If anyone is still
   > > > > > interested after reading these files, I have a 23 page letter
   of
   > > > > > comments on a recent Environmental Impact Statement I can
   post.
   > > > > >
   > > > > > Bernie
   > > > > >
   > > > > > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice
   Alcott
   > > > > > scottbernice@ wrote:
   > > > > > >
   > > > > > >
   > > > > > > Hi Bernie,
   > > > > > >
   > > > > > > I'm a Ewing's patient and an American living in Belgium
   (just 10
   > > > > > million people) and have been anecdotally surprised at the
   number of
   > > > > > cases just known to me arising in this small country. Turns
   out the
   > > > > > nephew of a close work colleague also has ewing's, odd. So I
   started
   > > > > > wondering about "clusters" too. After looking into it all, now
   I'm
   > > > not
   > > > > > so sure about the anecdotal math I was doing.
   > > > > > >
   > > > > > > In your case, Ewing's should appear much more often in the
   cape
   > > > > anyway
   > > > > > versus the general poulation. Are you controlling for that?
   Ewing's
   > > > is
   > > > > a
   > > > > > white person's disease (it shows up 9x more often in white
   people)
   > > > and
   > > > > > the cape has 80% fewer "non-whites" then the general
   population.
   > > > > Ewing's
   > > > > > overwhelmingly clusters in teens 15-19. I don't know if the
   > > > incidents
   > > > > > you count on the cape include the summer/second home
   population
   > > > which
   > > > > > may statistically over-index heavily on families with kids
   versus
   > > > the
   > > > > > general population? Last, I've read that Ewing's is often
   discovered
   > > > > > "more" in places with access to top teaching hospitals and
   places
   > > > that
   > > > > > do great pathology while other locations fail to accurately
   > > > > subclassify
   > > > > > tumors as Ewings (they think they are just general sarcomas or
   > > > > > osteo-sarcoma, etc.). The cape has access to some of the
   finest
   > > > > doctors,
   > > > > > institutions and teaching hospitals in the world. Maybe kids
   who get
   > > > > > painful lumps on the cape get to Boston and correctly
   diagnosed in
   > > > > that
   > > > > > area more than kids in other places? I don't know. I just
   think it's
   > > > > > hard to control for all of this and accurately assess things.
   > > > Ewing's
   > > > > is
   > > > > > so small and has so many correlations (age, race, diagnostic
   > > > variance)
   > > > > > that there is huge statistical "standard error" in the data.
   Given
   > > > all
   > > > > > that, I lost confidence in my ability to extrapolate the
   meaning of
   > > > > > variance from 10 cases when there should have 4. Numbers are
   just
   > > > too
   > > > > > small. In my case, Belgium is VERY white and it's a world
   leader in
   > > > > > analysis and pathology. I'm not so sure about anything any
   more!
   > > > > > >
   > > > > > > Scott
   > > > > > >
   > > > > > >
   > > > > > >
   > > > > > >
   > > > > > >
   > > > > > >
   > > > > > >
   > > > > > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
   > > > > > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma
   Cluster
   > > > > > >
   > > > > > >
   > > > > > >
   > > > > > >
   > > > > > > Friends:Here on Cape Cod we have a cluster of Ewing's
   sarcoma with
   > > > a
   > > > > > standardized incidence ratio of 3.84 (Massachusetts Department
   of
   > > > > Public
   > > > > > Health figure)or 6.67 (my figure). We should see one case
   every 6.7
   > > > > > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004,
   and
   > > > one
   > > > > in
   > > > > > 2005. There are cses in 1996 and 1996. There are also adult
   cases. A
   > > > > > pair were diagnosed the same day; the 2 in 2004 the same
   month. A
   > > > pair
   > > > > > are 1.75 miles apart; another pair 1/4 mile apart. There is an
   > > > > ensemble
   > > > > > of 3 cases in the Mid-Cape, but most cases are from the Upper
   Cape.
   > > > > > THere is a 13 mile gap between these two ensembles.I am
   suspicious
   > > > of
   > > > > a
   > > > > > particularly high incidence in athletes or athletically active
   > > > > > individuals, although I recognize we are becoming a more
   active
   > > > > > society.Anyone have any observations or concerns to offer to
   this
   > > > > > discussion?Bernie
   > > > > > >
   > > > > > >
   > > > > > >
   > > > > > >
   > > > > > >
   > > > > > >
   > > > > > > [Non-text portions of this message have been removed]
   > > > > > >
   > > > > >
   > > > > >
   > > > > >
   > > > > >
   > > > > >
   > > > > > __________ Information from ESET NOD32 Antivirus, version of
   virus
   > > > > signature database 3329 (20080805) __________
   > > > > >
   > > > > > The message was checked by ESET NOD32 Antivirus.
   > > > > >
   > > > > > http://www.eset. com
   > > > > >
   > > > > >
   > > > > > [Non-text portions of this message have been removed]
   > > > > >
   > > > >
   > > > > [Non-text portions of this message have been removed]
   > > > >
   > > > >
   > > > >
   > > > >
   > > > >
   > > > >
   > > > >
   > > > >
   > > > >
   > > > >
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   > > > >
   > > > >
   > > > >
   > > > >
   > > > >
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[Non-text portions of this message have been removed]

Shauna, and other friends out there in the blogosphere:

This has been a busy 24 hours.  I'd like to offer some observations of
what's on people's minds.

1) There are confirmed and suspected clusters of Ewing's out there, and
there is little documention in the medical or epidemiologic literature
about them.

2)There are associations between environmental factors and Ewing's, and
between athletic activity and Ewing's, and between skeletal injuries and
Ewing's.  The latter two go hand in hand.

3)It is incomprehensible that these rare events are not met with enough
concern to warrant a documention of medical history, lifestyle history,
suspected environmental factors, etc. which may lead to identification
of risk factors or even a cause.  Even a solitary case in a remote or an
unpopulated area should be documented for further investigation.

Shauna, there are personal and epidemiologic issues surrounding your
concerns.  There is a cause for each of these cases.  We will never know
what that cause is in each case, but the enemy is not ourselves.  As
Holly's surgeon told her at the initial appointment, this did  not
happen because you didn't take the garbage out, and it did not happen
because your parents asked you to take the garbage out.  And you didn't
miss the daignosis.  Holly was given Bextra for tendonitis until the
pain was so great she couldn't sleep.  She named her Ewing's
"tumoritis."

There is another potential problem for athletes.  They are used to
playing through pain, and often ignore pain too long.  This is important
for athletic directors, coaches, trainors, and the athletes themselves.
There is a considerable body of literature on discriminating between
injury and illness.  Everyone in sports needs to pay attention to it.

Even if statisticians tell us these are random events, that does not
mean that there is not a cause for every case, or that there are not
common factors among some cases.  Once you identify any common factor,
the next step is one of measurement.  If an increase in exposure to a
factor leads to an increase in the effect, then that factor is a cause.
This works well in the laboratory where you can control the factors and
measure them as you do in an experiment.  We cannot ethically experiment
on human beings.  Life is a natural experiment with many factors not
under our control.  It would help if each of the 250 or so cases
diagnosed each year just in the States had a medical, lifestyle, and
environmental history to analyze.  With the information technology,
communications, and computer power available in the 21st century, we
should be doing better.

A lot of people note skeletal injuries occurred before the onset of
Ewing's.  This is discounted by the medical community; it's a doctrine.
However, experience shows that many medical doctrines are reversed, and
even re-reversed and reversed again.  There are ample examples of
associations that have been missed in research studies, and ample
examples of bias.  Someday I'd like to see the research behind this
doctrine, and see it re-evaluated with contemporary data.

Shauna, you said you were stationed in Mississippi.  Coast Guard, Air
Force, Corps of Engineers?

Bernie


--- In ewingssarcoma@yahoogroups.com, stamplifter@... wrote:
>
> Marybeth,
>
> I think alot of the ER diagnosis depends on what kind of doctor they
are, we just weren't lucky enough to get an orthopedic oncology doctor.
JT ended up with almost a gallon of fluid on his lungs and found out it
was Ewings from there. I wish I'd known to ask for a CAT scan (had no
idea), but everyone I know has heard my story and if it gets someone to
a doctor with a CAT scan or MRI sooner than later will help the guilt
that I feel about it going on for so long. I know it wasn't my fault but
I still find myself saying he might still have his leg if this was
caught sooner.
>
> I'm so angry it was mistreated for so long. Where were you diagnosed?
We actually had it while stationed in Mississippi but weren't diagnosed
until we moved to Delaware.
>
> Expecting Miracles,
>
> Shauna
>
> -------------- Original message ----------------------
> From: marybeth adkins jazzmbm@...
> >
> > Hi Shauna,
> >
> > I too am interested in the clusters. I can completely associate with
you on the
> > growing pains. That is all I heard for two years on my daughter. Her
pains were
> > in her but. I'm telling you, I felt like an idiot for so long taking
her in with
> > but pain. But we finally hit the er with a more aggressive doctor
who did a cat
> > scan. It wasn't growing pains. It was Ewings Pnet with a tumor the
size of a
> > football in an 8 year old little girl.
> > Marybeth
> > --- On Wed, 8/6/08, stamplifter@... stamplifter@... wrote:
> >
> > From: stamplifter@... stamplifter@...
> > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > To: ewingssarcoma@yahoogroups.com
> > Date: Wednesday, August 6, 2008, 6:06 PM
> >
> >
> >
> >
> >
> >
> > I have been reading all of this and I'd like to add my 2 cents. JT
broke his leg
> > Dec.31,04 wasn't diagnosed with Ewings until Nov. 15,07. For at
least two years
> > we had him in and out of the ER and were told growing pains. He was
not an
> > athlete and not really active, being 6'1" he always complained that
his legs
> > hurt from the time he was five or six years old. I really think the
environment
> > has alot to do with him getting it. I was told most Ewings patients
find out
> > because of a broken bone. I am very interested in the clusters and
more info.
> >
> > Thanks for sharing,
> >
> > Shauna Mom to JT
> >
> > ------------ -- Original message ------------ --------- -
> > From: Sharon Kory <sharonlkory@ yahoo.com>
> > > Bernie,
> > >
> > > My son was diagnosed during his first semester at Michigan, my
daughter will
> > be
> > > a sophmore there this fall. Interesting to hear your're an alumni.
Haven't
> > yet,
> > > but plan to look at the links you sent and do a little research
myself. I,
> > too,
> > > am quite miffed by the fact that no one ever questioned his
medical history to
> > > try and trace back to something, if only for the sake of research.
The other
> > > boys who were diagnosed were athletes as well. I have also
questioned the
> > injury
> > > aspect. My son broke his wrist while wrestling in high school,
although his
> > > tumour was on his spine; don't know if theres any correlation.
> > >
> > > Sharon
> > >
> > >
> > > Sharon Kory
> > >
> > > Sharon Kory Interiors Inc
> > > 29000 Inkster Rd. Suite 120
> > > Southfield, MI 48034
> > > phone: 248.357.3600 ext 203
> > > fax: 248.357.3646
> > >
> > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com> wrote:
> > >
> > > From: bjyoung716 no_reply@yahoogroup s.com>
> > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > To: ewingssarcoma@ yahoogroups. com
> > > Date: Tuesday, August 5, 2008, 9:27 PM
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > Sharon & Fawad
> > >
> > > This site had been dormant for a month and all of sudden it's a
> > > whirlwind.
> > >
> > > If you follow the same message I left with Patricia and read the
files I
> > > posted, you will get an idea as to how these clusters are studied
and
> > > denied through faulty research. I have been working on a list of
> > > exposures which might be factors in Ewing's or any other suspected
> > > cancer excess. I shouldn't have to do this. There are agencies
which
> > > ought to be at the task. What we see though is a systematic
approach at
> > > denying community cancer clusters.
> > >
> > > I also blog with the National Disease Clusters Alliance. It is a
group
> > > of activists, families, victims, doctors, nurses, scientists, and
> > > epidemiologists who have become dissatisfied with the status quo
and
> > > feel we ought to be able to find causes for these cancer clusters.
> > > Check out:
> > >
> > > http://tech. groups.yahoo. com/group/ NationalDiseaseC
lustersAlliance/
> > > <http://tech. groups.yahoo. com/group/ NationalDiseaseC
lustersAlliance/ >
> > >
> > > If you go to the "search" window and enter keywords "Cape
> > > Cod" or "Ewing's" you will retrieve all the relevant
> > > messages. I'm going to alert them of the activity on this blog.
> > >
> > > What blows my mind is that three and a half years after my
daughter's
> > > diagnosis, no one has even asked for her medical history, let
alone
> > > investigate lifestyle factors or potential environmental
exposures! If
> > > you don't ask the questions, you don't get the answers.
> > >
> > > Tonight I did a yahoo search on "Hockey" & "Ewing's
> > > sarcoma." You ought to try it. Try it with any sport. My
> > > daughter's sports were volleyball and track, but a football
> > > player/wannabee shot putter uncorked a wild shot and smashed her
ankle.
> > > The conventional wisdom, probably 75years old, is that injuries
> > > don't lead to Ewing's. But I've seen so much bad research
> > > recently, and see so many associations between sports injuries and
> > > Ewing's that I think the source of that doctrine should be flushed
> > > out of the literature and re-examined.
> > >
> > > I know Bloomfield Hills as a haven for Michigan grads like me ('68
&
> > > '71). I also used to sail out of Bayview Yacht Club. My first ski
> > > adventure was at Mt. Holly. That was my daughter's name.
> > >
> > > Bernie
> > >
> > > --- In ewingssarcoma@ yahoogroups. com, Sharon Kory <sharonlkory@
...>
> > > wrote:
> > > >
> > > > My son, now 26 years old, was diagnosed at age 18 with Ewings
Sarcoma.
> > > We live in a suburb of Detroit, called Bloomfield Hills. There
were at
> > > least three other boys in our general area diagnosed around the
same
> > > time with either Ewings Sarcoma or Osteosarcoma, one of them
attended
> > > the same high school. I have always found this to be quite
peculiar, due
> > > to the rarity. The possibility of some environmental factor
> > > contributing to this disease seems to make sense. My son received
10
> > > months of chemo, radiation and surgery in a wonderful hospital in
our
> > > area. We are very fortuneate that he is a healthy survivor. He too
was
> > > an athlete, hockey player, wrestler, golfer and was a very active
teen.
> > > > I would be interested in anything that would shed some light on
why an
> > > otherwise healthy young man, with no family history of cancer
could
> > > contract this horrible disease.
> > > > Best to all of you still struggling and or mourning the loss of
a
> > > loved one. Our hearts will always be with you.
> > > >
> > > > Sharon Kory
> > > >
> > > > I am very curious
> > > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com wrote:
> > > >
> > > > From: bjyoung716 no_reply@yahoogroup s.com
> > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > To: ewingssarcoma@ yahoogroups. com
> > > > Date: Tuesday, August 5, 2008, 7:56 PM
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > Patricia
> > > >
> > > > Maine West High School in DesPlaines, Illinois, had cases of
Ewing's
> > > > sarcoma in 2003 and 2004 (the latter being a recent graduate).
It's a
> > > > big school (5000 or so) just north of O'hare International
Airport.
> > > > That community has perceived an excess of cancer, and I have
seen
> > > > contours of incidence that diminish the further you get from the
> > > > airport. To have two cases of such a rare disease so close
together
> > > > gets your attention, no matter what the epidemiologists say.
Your
> > > > information is interesting.
> > > >
> > > > I belong to several yahoo groups, and all are organized
differently.
> > > It
> > > > seems members of this group receive new messages automatically,
so you
> > > > don't have to visit the home page (unless you want to download
files
> > > or
> > > > search for old messages. If you follow this link:
> > > >
> > > > http://health. groups.yahoo. com/group/ ewingssarcoma/
> > > > <http://health. groups.yahoo. com/group/ ewingssarcoma/ >
> > > >
> > > > and click on the word "Files" you can download the files I have
> > > posted.
> > > >
> > > > My sympathies to you on the loss of your daughter. I too lost a
> > > > daughter in January just after her 22 birthday. She battled 3
years,
> > > > and enjoyed much support as she was an active athlete and played
on
> > > many
> > > > teams.
> > > >
> > > > If you read my posts, there is an association on Cape Cod
between a
> > > > unique electromagnetic radiation exposure and Ewing's. But I
think
> > > > there are statistical confounders, and one (on a worldwide
basis) is
> > > > contact sports (hockey, football, soccer). I am also suspicious
of
> > > > osteochondroma; there seems to be a excess of that disease which
> > > > parallels the Cape Cod Ewing's cluster. After revealing my
concerns to
> > > > the state health department, a mother with a son who had Ewing's
said
> > > > she had another son with osteochondroma!
> > > >
> > > > Most of our professional epidemiologists are inclined to
discredit
> > > talk
> > > > of clusters. But this is the 21st century, and with a better
educated
> > > > population, the ability to instantaneously communicate with one
> > > another,
> > > > massive information storage and retrieval technology, and the
help of
> > > > some friendly epidemiologists, I beleive we may be able to
identify
> > > risk
> > > > factors for Ewing's where none now exist.
> > > >
> > > > Do you have any idea if the is a common exposure to some
environmental
> > > > factor in your community or school? Even though I live on this
side of
> > > > "the pond," I have seen several stories of Ewing's cases in the
same
> > > > geographic area you describe. I'd like to know more about your
> > > > concerns. I don't want to bias your thinking before revealing
some of
> > > > the confounding factors that have caught my attention.
> > > >
> > > > Hope to we hear more from you.
> > > >
> > > > Bernie
> > > >
> > > > --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
> > > > <patriciasmith@ ...> wrote:
> > > > >
> > > > > Hi
> > > > >
> > > > > I wonder could you post the information, I live in the
republic of
> > > > ireland and we have a population of 3500,000million
> > > > > yet where I live and near by three teenagers at the same time
were
> > > > diagnosed with ewings sarcoma.
> > > > > two sat beside one another in the same school.
> > > > > my daughter Krystle died of ewings sarcoma at aged 18 years we
live
> > > 10
> > > > miles away.
> > > > > I am interested in clusters and I am a member of The bone
cancer
> > > > research trust www.bonecancerresea rch.org.uk
> > > > > I got a lot of data from ireland england scotland and wales
and we
> > > > seem to have a lot for a small population.
> > > > > there is very little research in this area.
> > > > >
> > > > > regards
> > > > > patricia
> > > > > ireland
> > > > >
> > > > >
> > > > > ----- Original Message -----
> > > > > From: bjyoung716
> > > > > To: ewingssarcoma@ yahoogroups. com
> > > > > Sent: Tuesday, August 05, 2008 9:13 AM
> > > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > >
> > > > >
> > > > >
> > > > > Scott
> > > > >
> > > > > Thank you for your comments. I have just posted three files on
this
> > > > > blog (which I think are visible only to members) which answer
most
> > > of
> > > > > the points you raise. They are dated and are best read in
> > > > chronological
> > > > > order; they seem to be listed with most recent on top.
> > > > >
> > > > > I would only add that diagnosis is often delayed, which is of
> > > > particular
> > > > > concern for athletes who are used to playing through pain. Our
> > > medical
> > > > > institutions are world class when it comes to confirming a
diagnosis
> > > > and
> > > > > treating the disease. At the local level things are more
ordinary.
> > > > >
> > > > > This cluster is unique to Cape Cod. There does not seem to be
a
> > > > > dramatic elevation in Ewing's anywhere else in New England. It
is
> > > 67%
> > > > > more severe than the Woburn Leukemia cluster documented the
movie "A
> > > > > Civil Action."
> > > > >
> > > > > I don't know if EMR from our high powered radar station is the
> > > cause,
> > > > > but there are enough reasons to be concerned, and the research
> > > > > surrounding it has been pathetically poor. If anyone is still
> > > > > interested after reading these files, I have a 23 page letter
of
> > > > > comments on a recent Environmental Impact Statement I can
post.
> > > > >
> > > > > Bernie
> > > > >
> > > > > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice
Alcott
> > > > > scottbernice@ wrote:
> > > > > >
> > > > > >
> > > > > > Hi Bernie,
> > > > > >
> > > > > > I'm a Ewing's patient and an American living in Belgium
(just 10
> > > > > million people) and have been anecdotally surprised at the
number of
> > > > > cases just known to me arising in this small country. Turns
out the
> > > > > nephew of a close work colleague also has ewing's, odd. So I
started
> > > > > wondering about "clusters" too. After looking into it all, now
I'm
> > > not
> > > > > so sure about the anecdotal math I was doing.
> > > > > >
> > > > > > In your case, Ewing's should appear much more often in the
cape
> > > > anyway
> > > > > versus the general poulation. Are you controlling for that?
Ewing's
> > > is
> > > > a
> > > > > white person's disease (it shows up 9x more often in white
people)
> > > and
> > > > > the cape has 80% fewer "non-whites" then the general
population.
> > > > Ewing's
> > > > > overwhelmingly clusters in teens 15-19. I don't know if the
> > > incidents
> > > > > you count on the cape include the summer/second home
population
> > > which
> > > > > may statistically over-index heavily on families with kids
versus
> > > the
> > > > > general population? Last, I've read that Ewing's is often
discovered
> > > > > "more" in places with access to top teaching hospitals and
places
> > > that
> > > > > do great pathology while other locations fail to accurately
> > > > subclassify
> > > > > tumors as Ewings (they think they are just general sarcomas or
> > > > > osteo-sarcoma, etc.). The cape has access to some of the
finest
> > > > doctors,
> > > > > institutions and teaching hospitals in the world. Maybe kids
who get
> > > > > painful lumps on the cape get to Boston and correctly
diagnosed in
> > > > that
> > > > > area more than kids in other places? I don't know. I just
think it's
> > > > > hard to control for all of this and accurately assess things.
> > > Ewing's
> > > > is
> > > > > so small and has so many correlations (age, race, diagnostic
> > > variance)
> > > > > that there is huge statistical "standard error" in the data.
Given
> > > all
> > > > > that, I lost confidence in my ability to extrapolate the
meaning of
> > > > > variance from 10 cases when there should have 4. Numbers are
just
> > > too
> > > > > small. In my case, Belgium is VERY white and it's a world
leader in
> > > > > analysis and pathology. I'm not so sure about anything any
more!
> > > > > >
> > > > > > Scott
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
> > > > > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma
Cluster
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > > Friends:Here on Cape Cod we have a cluster of Ewing's
sarcoma with
> > > a
> > > > > standardized incidence ratio of 3.84 (Massachusetts Department
of
> > > > Public
> > > > > Health figure)or 6.67 (my figure). We should see one case
every 6.7
> > > > > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004,
and
> > > one
> > > > in
> > > > > 2005. There are cses in 1996 and 1996. There are also adult
cases. A
> > > > > pair were diagnosed the same day; the 2 in 2004 the same
month. A
> > > pair
> > > > > are 1.75 miles apart; another pair 1/4 mile apart. There is an
> > > > ensemble
> > > > > of 3 cases in the Mid-Cape, but most cases are from the Upper
Cape.
> > > > > THere is a 13 mile gap between these two ensembles.I am
suspicious
> > > of
> > > > a
> > > > > particularly high incidence in athletes or athletically active
> > > > > individuals, although I recognize we are becoming a more
active
> > > > > society.Anyone have any observations or concerns to offer to
this
> > > > > discussion?Bernie
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > > > [Non-text portions of this message have been removed]
> > > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > __________ Information from ESET NOD32 Antivirus, version of
virus
> > > > signature database 3329 (20080805) __________
> > > > >
> > > > > The message was checked by ESET NOD32 Antivirus.
> > > > >
> > > > > http://www.eset. com
> > > > >
> > > > >
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> > > > >
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>

Marybeth,

I think alot of the ER diagnosis depends on what kind of doctor they are, we
just weren't lucky enough to get an orthopedic oncology doctor.  JT ended up
with almost a gallon of fluid on his lungs and found out it was Ewings from
there.  I wish I'd known to ask for a CAT scan (had no idea), but everyone I
know has heard my story and if it gets someone to a doctor with a CAT scan or
MRI sooner than later will help the guilt that I feel about it going on for so
long.  I know it wasn't my fault but I still find myself saying he might still
have his leg if this was caught sooner.

I'm so angry it was mistreated for so long.  Where were you diagnosed?  We
actually had it while stationed in Mississippi but weren't diagnosed until we
moved to Delaware.

Expecting Miracles,

Shauna

  -------------- Original message ----------------------
From: marybeth adkins <jazzmbm@...>
>
> Hi Shauna,
>
> I too am interested in the clusters. I can completely associate with you on
the
> growing pains. That is all I heard for two years on my daughter. Her pains
were
> in her but. I'm telling you, I felt like an idiot for so long taking her in
with
> but pain. But we finally hit the er with a more aggressive doctor who did a
cat
> scan. It wasn't growing pains. It was Ewings Pnet with a tumor the size of a
> football in an 8 year old little girl.
> Marybeth
> --- On Wed, 8/6/08, stamplifter@... <stamplifter@...> wrote:
>
> From: stamplifter@... <stamplifter@...>
> Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> To: ewingssarcoma@yahoogroups.com
> Date: Wednesday, August 6, 2008, 6:06 PM
>
>
>
>
>
>
> I have been reading all of this and I'd like to add my 2 cents. JT broke his
leg
> Dec.31,04 wasn't diagnosed with Ewings until Nov. 15,07. For at least two
years
> we had him in and out of the ER and were told growing pains. He was not an
> athlete and not really active, being 6'1" he always complained that his legs
> hurt from the time he was five or six years old. I really think the
environment
> has alot to do with him getting it. I was told most Ewings patients find out
> because of a broken bone. I am very interested in the clusters and more info.
>
> Thanks for sharing,
>
> Shauna Mom to JT
>
> ------------ -- Original message ------------ --------- -
> From: Sharon Kory <sharonlkory@ yahoo.com>
> > Bernie,
> >
> > My son was diagnosed during his first semester at Michigan, my daughter will
> be
> > a sophmore there this fall. Interesting to hear your're an alumni. Haven't
> yet,
> > but plan to look at the links you sent and do a little research myself. I,
> too,
> > am quite miffed by the fact that no one ever questioned his medical history
to
> > try and trace back to something, if only for the sake of research. The other
> > boys who were diagnosed were athletes as well. I have also questioned the
> injury
> > aspect. My son broke his wrist while wrestling in high school, although his
> > tumour was on his spine; don't know if theres any correlation.
> >
> > Sharon
> >
> >
> > Sharon Kory
> >
> > Sharon Kory Interiors Inc
> > 29000 Inkster Rd. Suite 120
> > Southfield, MI 48034
> > phone: 248.357.3600 ext 203
> > fax: 248.357.3646
> >
> > --- On Tue, 8/5/08, bjyoung716 <no_reply@yahoogroup s.com> wrote:
> >
> > From: bjyoung716 <no_reply@yahoogroup s.com>
> > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > To: ewingssarcoma@ yahoogroups. com
> > Date: Tuesday, August 5, 2008, 9:27 PM
> >
> >
> >
> >
> >
> >
> >
> > Sharon & Fawad
> >
> > This site had been dormant for a month and all of sudden it's a
> > whirlwind.
> >
> > If you follow the same message I left with Patricia and read the files I
> > posted, you will get an idea as to how these clusters are studied and
> > denied through faulty research. I have been working on a list of
> > exposures which might be factors in Ewing's or any other suspected
> > cancer excess. I shouldn't have to do this. There are agencies which
> > ought to be at the task. What we see though is a systematic approach at
> > denying community cancer clusters.
> >
> > I also blog with the National Disease Clusters Alliance. It is a group
> > of activists, families, victims, doctors, nurses, scientists, and
> > epidemiologists who have become dissatisfied with the status quo and
> > feel we ought to be able to find causes for these cancer clusters.
> > Check out:
> >
> > http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/
> > <http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/ >
> >
> > If you go to the "search" window and enter keywords "Cape
> > Cod" or "Ewing's" you will retrieve all the relevant
> > messages. I'm going to alert them of the activity on this blog.
> >
> > What blows my mind is that three and a half years after my daughter's
> > diagnosis, no one has even asked for her medical history, let alone
> > investigate lifestyle factors or potential environmental exposures! If
> > you don't ask the questions, you don't get the answers.
> >
> > Tonight I did a yahoo search on "Hockey" & "Ewing's
> > sarcoma." You ought to try it. Try it with any sport. My
> > daughter's sports were volleyball and track, but a football
> > player/wannabee shot putter uncorked a wild shot and smashed her ankle.
> > The conventional wisdom, probably 75years old, is that injuries
> > don't lead to Ewing's. But I've seen so much bad research
> > recently, and see so many associations between sports injuries and
> > Ewing's that I think the source of that doctrine should be flushed
> > out of the literature and re-examined.
> >
> > I know Bloomfield Hills as a haven for Michigan grads like me ('68 &
> > '71). I also used to sail out of Bayview Yacht Club. My first ski
> > adventure was at Mt. Holly. That was my daughter's name.
> >
> > Bernie
> >
> > --- In ewingssarcoma@ yahoogroups. com, Sharon Kory <sharonlkory@ ...>
> > wrote:
> > >
> > > My son, now 26 years old, was diagnosed at age 18 with Ewings Sarcoma.
> > We live in a suburb of Detroit, called Bloomfield Hills. There were at
> > least three other boys in our general area diagnosed around the same
> > time with either Ewings Sarcoma or Osteosarcoma, one of them attended
> > the same high school. I have always found this to be quite peculiar, due
> > to the rarity. The possibility of some environmental factor
> > contributing to this disease seems to make sense. My son received 10
> > months of chemo, radiation and surgery in a wonderful hospital in our
> > area. We are very fortuneate that he is a healthy survivor. He too was
> > an athlete, hockey player, wrestler, golfer and was a very active teen.
> > > I would be interested in anything that would shed some light on why an
> > otherwise healthy young man, with no family history of cancer could
> > contract this horrible disease.
> > > Best to all of you still struggling and or mourning the loss of a
> > loved one. Our hearts will always be with you.
> > >
> > > Sharon Kory
> > >
> > > I am very curious
> > > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com wrote:
> > >
> > > From: bjyoung716 no_reply@yahoogroup s.com
> > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > To: ewingssarcoma@ yahoogroups. com
> > > Date: Tuesday, August 5, 2008, 7:56 PM
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > Patricia
> > >
> > > Maine West High School in DesPlaines, Illinois, had cases of Ewing's
> > > sarcoma in 2003 and 2004 (the latter being a recent graduate). It's a
> > > big school (5000 or so) just north of O'hare International Airport.
> > > That community has perceived an excess of cancer, and I have seen
> > > contours of incidence that diminish the further you get from the
> > > airport. To have two cases of such a rare disease so close together
> > > gets your attention, no matter what the epidemiologists say. Your
> > > information is interesting.
> > >
> > > I belong to several yahoo groups, and all are organized differently.
> > It
> > > seems members of this group receive new messages automatically, so you
> > > don't have to visit the home page (unless you want to download files
> > or
> > > search for old messages. If you follow this link:
> > >
> > > http://health. groups.yahoo. com/group/ ewingssarcoma/
> > > <http://health. groups.yahoo. com/group/ ewingssarcoma/ >
> > >
> > > and click on the word "Files" you can download the files I have
> > posted.
> > >
> > > My sympathies to you on the loss of your daughter. I too lost a
> > > daughter in January just after her 22 birthday. She battled 3 years,
> > > and enjoyed much support as she was an active athlete and played on
> > many
> > > teams.
> > >
> > > If you read my posts, there is an association on Cape Cod between a
> > > unique electromagnetic radiation exposure and Ewing's. But I think
> > > there are statistical confounders, and one (on a worldwide basis) is
> > > contact sports (hockey, football, soccer). I am also suspicious of
> > > osteochondroma; there seems to be a excess of that disease which
> > > parallels the Cape Cod Ewing's cluster. After revealing my concerns to
> > > the state health department, a mother with a son who had Ewing's said
> > > she had another son with osteochondroma!
> > >
> > > Most of our professional epidemiologists are inclined to discredit
> > talk
> > > of clusters. But this is the 21st century, and with a better educated
> > > population, the ability to instantaneously communicate with one
> > another,
> > > massive information storage and retrieval technology, and the help of
> > > some friendly epidemiologists, I beleive we may be able to identify
> > risk
> > > factors for Ewing's where none now exist.
> > >
> > > Do you have any idea if the is a common exposure to some environmental
> > > factor in your community or school? Even though I live on this side of
> > > "the pond," I have seen several stories of Ewing's cases in the same
> > > geographic area you describe. I'd like to know more about your
> > > concerns. I don't want to bias your thinking before revealing some of
> > > the confounding factors that have caught my attention.
> > >
> > > Hope to we hear more from you.
> > >
> > > Bernie
> > >
> > > --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
> > > <patriciasmith@ ...> wrote:
> > > >
> > > > Hi
> > > >
> > > > I wonder could you post the information, I live in the republic of
> > > ireland and we have a population of 3500,000million
> > > > yet where I live and near by three teenagers at the same time were
> > > diagnosed with ewings sarcoma.
> > > > two sat beside one another in the same school.
> > > > my daughter Krystle died of ewings sarcoma at aged 18 years we live
> > 10
> > > miles away.
> > > > I am interested in clusters and I am a member of The bone cancer
> > > research trust www.bonecancerresea rch.org.uk
> > > > I got a lot of data from ireland england scotland and wales and we
> > > seem to have a lot for a small population.
> > > > there is very little research in this area.
> > > >
> > > > regards
> > > > patricia
> > > > ireland
> > > >
> > > >
> > > > ----- Original Message -----
> > > > From: bjyoung716
> > > > To: ewingssarcoma@ yahoogroups. com
> > > > Sent: Tuesday, August 05, 2008 9:13 AM
> > > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > >
> > > >
> > > >
> > > > Scott
> > > >
> > > > Thank you for your comments. I have just posted three files on this
> > > > blog (which I think are visible only to members) which answer most
> > of
> > > > the points you raise. They are dated and are best read in
> > > chronological
> > > > order; they seem to be listed with most recent on top.
> > > >
> > > > I would only add that diagnosis is often delayed, which is of
> > > particular
> > > > concern for athletes who are used to playing through pain. Our
> > medical
> > > > institutions are world class when it comes to confirming a diagnosis
> > > and
> > > > treating the disease. At the local level things are more ordinary.
> > > >
> > > > This cluster is unique to Cape Cod. There does not seem to be a
> > > > dramatic elevation in Ewing's anywhere else in New England. It is
> > 67%
> > > > more severe than the Woburn Leukemia cluster documented the movie "A
> > > > Civil Action."
> > > >
> > > > I don't know if EMR from our high powered radar station is the
> > cause,
> > > > but there are enough reasons to be concerned, and the research
> > > > surrounding it has been pathetically poor. If anyone is still
> > > > interested after reading these files, I have a 23 page letter of
> > > > comments on a recent Environmental Impact Statement I can post.
> > > >
> > > > Bernie
> > > >
> > > > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice Alcott
> > > > scottbernice@ wrote:
> > > > >
> > > > >
> > > > > Hi Bernie,
> > > > >
> > > > > I'm a Ewing's patient and an American living in Belgium (just 10
> > > > million people) and have been anecdotally surprised at the number of
> > > > cases just known to me arising in this small country. Turns out the
> > > > nephew of a close work colleague also has ewing's, odd. So I started
> > > > wondering about "clusters" too. After looking into it all, now I'm
> > not
> > > > so sure about the anecdotal math I was doing.
> > > > >
> > > > > In your case, Ewing's should appear much more often in the cape
> > > anyway
> > > > versus the general poulation. Are you controlling for that? Ewing's
> > is
> > > a
> > > > white person's disease (it shows up 9x more often in white people)
> > and
> > > > the cape has 80% fewer "non-whites" then the general population.
> > > Ewing's
> > > > overwhelmingly clusters in teens 15-19. I don't know if the
> > incidents
> > > > you count on the cape include the summer/second home population
> > which
> > > > may statistically over-index heavily on families with kids versus
> > the
> > > > general population? Last, I've read that Ewing's is often discovered
> > > > "more" in places with access to top teaching hospitals and places
> > that
> > > > do great pathology while other locations fail to accurately
> > > subclassify
> > > > tumors as Ewings (they think they are just general sarcomas or
> > > > osteo-sarcoma, etc.). The cape has access to some of the finest
> > > doctors,
> > > > institutions and teaching hospitals in the world. Maybe kids who get
> > > > painful lumps on the cape get to Boston and correctly diagnosed in
> > > that
> > > > area more than kids in other places? I don't know. I just think it's
> > > > hard to control for all of this and accurately assess things.
> > Ewing's
> > > is
> > > > so small and has so many correlations (age, race, diagnostic
> > variance)
> > > > that there is huge statistical "standard error" in the data. Given
> > all
> > > > that, I lost confidence in my ability to extrapolate the meaning of
> > > > variance from 10 cases when there should have 4. Numbers are just
> > too
> > > > small. In my case, Belgium is VERY white and it's a world leader in
> > > > analysis and pathology. I'm not so sure about anything any more!
> > > > >
> > > > > Scott
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
> > > > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with
> > a
> > > > standardized incidence ratio of 3.84 (Massachusetts Department of
> > > Public
> > > > Health figure)or 6.67 (my figure). We should see one case every 6.7
> > > > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and
> > one
> > > in
> > > > 2005. There are cses in 1996 and 1996. There are also adult cases. A
> > > > pair were diagnosed the same day; the 2 in 2004 the same month. A
> > pair
> > > > are 1.75 miles apart; another pair 1/4 mile apart. There is an
> > > ensemble
> > > > of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
> > > > THere is a 13 mile gap between these two ensembles.I am suspicious
> > of
> > > a
> > > > particularly high incidence in athletes or athletically active
> > > > individuals, although I recognize we are becoming a more active
> > > > society.Anyone have any observations or concerns to offer to this
> > > > discussion?Bernie
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > [Non-text portions of this message have been removed]
> > > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > __________ Information from ESET NOD32 Antivirus, version of virus
> > > signature database 3329 (20080805) __________
> > > >
> > > > The message was checked by ESET NOD32 Antivirus.
> > > >
> > > > http://www.eset. com
> > > >
> > > >
> > > > [Non-text portions of this message have been removed]
> > > >
> > >
> > > [Non-text portions of this message have been removed]
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > [Non-text portions of this message have been removed]
> > >
> >
> > [Non-text portions of this message have been removed]
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > [Non-text portions of this message have been removed]
> >
> >
>
> [Non-text portions of this message have been removed]
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>
>




[Non-text portions of this message have been removed]

Hi Shauna,
 
I too am interested in the clusters. I can completely associate with you on the
growing pains. That is all I heard for two years on my daughter. Her pains were
in her but. I'm telling you, I felt like an idiot for so long taking her in with
but pain. But we finally hit the er with a more aggressive doctor who did a cat
scan. It wasn't growing pains. It was Ewings Pnet with a tumor the size of a
football in an 8 year old little girl.
Marybeth
--- On Wed, 8/6/08, stamplifter@... <stamplifter@...> wrote:

From: stamplifter@... <stamplifter@...>
Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
To: ewingssarcoma@yahoogroups.com
Date: Wednesday, August 6, 2008, 6:06 PM






I have been reading all of this and I'd like to add my 2 cents. JT broke his leg
Dec.31,04 wasn't diagnosed with Ewings until Nov. 15,07. For at least two years
we had him in and out of the ER and were told growing pains. He was not an
athlete and not really active, being 6'1" he always complained that his legs
hurt from the time he was five or six years old. I really think the environment
has alot to do with him getting it. I was told most Ewings patients find out
because of a broken bone. I am very interested in the clusters and more info.

Thanks for sharing,

Shauna Mom to JT

------------ -- Original message ------------ --------- -
From: Sharon Kory <sharonlkory@ yahoo.com>
> Bernie,
>
> My son was diagnosed during his first semester at Michigan, my daughter will
be
> a sophmore there this fall. Interesting to hear your're an alumni. Haven't
yet,
> but plan to look at the links you sent and do a little research myself. I,
too,
> am quite miffed by the fact that no one ever questioned his medical history to
> try and trace back to something, if only for the sake of research. The other
> boys who were diagnosed were athletes as well. I have also questioned the
injury
> aspect. My son broke his wrist while wrestling in high school, although his
> tumour was on his spine; don't know if theres any correlation.
>
> Sharon
>
>
> Sharon Kory
>
> Sharon Kory Interiors Inc
> 29000 Inkster Rd. Suite 120
> Southfield, MI 48034
> phone: 248.357.3600 ext 203
> fax: 248.357.3646
>
> --- On Tue, 8/5/08, bjyoung716 <no_reply@yahoogroup s.com> wrote:
>
> From: bjyoung716 <no_reply@yahoogroup s.com>
> Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> To: ewingssarcoma@ yahoogroups. com
> Date: Tuesday, August 5, 2008, 9:27 PM
>
>
>
>
>
>
>
> Sharon & Fawad
>
> This site had been dormant for a month and all of sudden it's a
> whirlwind.
>
> If you follow the same message I left with Patricia and read the files I
> posted, you will get an idea as to how these clusters are studied and
> denied through faulty research. I have been working on a list of
> exposures which might be factors in Ewing's or any other suspected
> cancer excess. I shouldn't have to do this. There are agencies which
> ought to be at the task. What we see though is a systematic approach at
> denying community cancer clusters.
>
> I also blog with the National Disease Clusters Alliance. It is a group
> of activists, families, victims, doctors, nurses, scientists, and
> epidemiologists who have become dissatisfied with the status quo and
> feel we ought to be able to find causes for these cancer clusters.
> Check out:
>
> http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/
> <http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/ >
>
> If you go to the "search" window and enter keywords "Cape
> Cod" or "Ewing's" you will retrieve all the relevant
> messages. I'm going to alert them of the activity on this blog.
>
> What blows my mind is that three and a half years after my daughter's
> diagnosis, no one has even asked for her medical history, let alone
> investigate lifestyle factors or potential environmental exposures! If
> you don't ask the questions, you don't get the answers.
>
> Tonight I did a yahoo search on "Hockey" & "Ewing's
> sarcoma." You ought to try it. Try it with any sport. My
> daughter's sports were volleyball and track, but a football
> player/wannabee shot putter uncorked a wild shot and smashed her ankle.
> The conventional wisdom, probably 75years old, is that injuries
> don't lead to Ewing's. But I've seen so much bad research
> recently, and see so many associations between sports injuries and
> Ewing's that I think the source of that doctrine should be flushed
> out of the literature and re-examined.
>
> I know Bloomfield Hills as a haven for Michigan grads like me ('68 &
> '71). I also used to sail out of Bayview Yacht Club. My first ski
> adventure was at Mt. Holly. That was my daughter's name.
>
> Bernie
>
> --- In ewingssarcoma@ yahoogroups. com, Sharon Kory <sharonlkory@ ...>
> wrote:
> >
> > My son, now 26 years old, was diagnosed at age 18 with Ewings Sarcoma.
> We live in a suburb of Detroit, called Bloomfield Hills. There were at
> least three other boys in our general area diagnosed around the same
> time with either Ewings Sarcoma or Osteosarcoma, one of them attended
> the same high school. I have always found this to be quite peculiar, due
> to the rarity. The possibility of some environmental factor
> contributing to this disease seems to make sense. My son received 10
> months of chemo, radiation and surgery in a wonderful hospital in our
> area. We are very fortuneate that he is a healthy survivor. He too was
> an athlete, hockey player, wrestler, golfer and was a very active teen.
> > I would be interested in anything that would shed some light on why an
> otherwise healthy young man, with no family history of cancer could
> contract this horrible disease.
> > Best to all of you still struggling and or mourning the loss of a
> loved one. Our hearts will always be with you.
> >
> > Sharon Kory
> >
> > I am very curious
> > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com wrote:
> >
> > From: bjyoung716 no_reply@yahoogroup s.com
> > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > To: ewingssarcoma@ yahoogroups. com
> > Date: Tuesday, August 5, 2008, 7:56 PM
> >
> >
> >
> >
> >
> >
> >
> > Patricia
> >
> > Maine West High School in DesPlaines, Illinois, had cases of Ewing's
> > sarcoma in 2003 and 2004 (the latter being a recent graduate). It's a
> > big school (5000 or so) just north of O'hare International Airport.
> > That community has perceived an excess of cancer, and I have seen
> > contours of incidence that diminish the further you get from the
> > airport. To have two cases of such a rare disease so close together
> > gets your attention, no matter what the epidemiologists say. Your
> > information is interesting.
> >
> > I belong to several yahoo groups, and all are organized differently.
> It
> > seems members of this group receive new messages automatically, so you
> > don't have to visit the home page (unless you want to download files
> or
> > search for old messages. If you follow this link:
> >
> > http://health. groups.yahoo. com/group/ ewingssarcoma/
> > <http://health. groups.yahoo. com/group/ ewingssarcoma/ >
> >
> > and click on the word "Files" you can download the files I have
> posted.
> >
> > My sympathies to you on the loss of your daughter. I too lost a
> > daughter in January just after her 22 birthday. She battled 3 years,
> > and enjoyed much support as she was an active athlete and played on
> many
> > teams.
> >
> > If you read my posts, there is an association on Cape Cod between a
> > unique electromagnetic radiation exposure and Ewing's. But I think
> > there are statistical confounders, and one (on a worldwide basis) is
> > contact sports (hockey, football, soccer). I am also suspicious of
> > osteochondroma; there seems to be a excess of that disease which
> > parallels the Cape Cod Ewing's cluster. After revealing my concerns to
> > the state health department, a mother with a son who had Ewing's said
> > she had another son with osteochondroma!
> >
> > Most of our professional epidemiologists are inclined to discredit
> talk
> > of clusters. But this is the 21st century, and with a better educated
> > population, the ability to instantaneously communicate with one
> another,
> > massive information storage and retrieval technology, and the help of
> > some friendly epidemiologists, I beleive we may be able to identify
> risk
> > factors for Ewing's where none now exist.
> >
> > Do you have any idea if the is a common exposure to some environmental
> > factor in your community or school? Even though I live on this side of
> > "the pond," I have seen several stories of Ewing's cases in the same
> > geographic area you describe. I'd like to know more about your
> > concerns. I don't want to bias your thinking before revealing some of
> > the confounding factors that have caught my attention.
> >
> > Hope to we hear more from you.
> >
> > Bernie
> >
> > --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
> > <patriciasmith@ ...> wrote:
> > >
> > > Hi
> > >
> > > I wonder could you post the information, I live in the republic of
> > ireland and we have a population of 3500,000million
> > > yet where I live and near by three teenagers at the same time were
> > diagnosed with ewings sarcoma.
> > > two sat beside one another in the same school.
> > > my daughter Krystle died of ewings sarcoma at aged 18 years we live
> 10
> > miles away.
> > > I am interested in clusters and I am a member of The bone cancer
> > research trust www.bonecancerresea rch.org.uk
> > > I got a lot of data from ireland england scotland and wales and we
> > seem to have a lot for a small population.
> > > there is very little research in this area.
> > >
> > > regards
> > > patricia
> > > ireland
> > >
> > >
> > > ----- Original Message -----
> > > From: bjyoung716
> > > To: ewingssarcoma@ yahoogroups. com
> > > Sent: Tuesday, August 05, 2008 9:13 AM
> > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > >
> > >
> > >
> > > Scott
> > >
> > > Thank you for your comments. I have just posted three files on this
> > > blog (which I think are visible only to members) which answer most
> of
> > > the points you raise. They are dated and are best read in
> > chronological
> > > order; they seem to be listed with most recent on top.
> > >
> > > I would only add that diagnosis is often delayed, which is of
> > particular
> > > concern for athletes who are used to playing through pain. Our
> medical
> > > institutions are world class when it comes to confirming a diagnosis
> > and
> > > treating the disease. At the local level things are more ordinary.
> > >
> > > This cluster is unique to Cape Cod. There does not seem to be a
> > > dramatic elevation in Ewing's anywhere else in New England. It is
> 67%
> > > more severe than the Woburn Leukemia cluster documented the movie "A
> > > Civil Action."
> > >
> > > I don't know if EMR from our high powered radar station is the
> cause,
> > > but there are enough reasons to be concerned, and the research
> > > surrounding it has been pathetically poor. If anyone is still
> > > interested after reading these files, I have a 23 page letter of
> > > comments on a recent Environmental Impact Statement I can post.
> > >
> > > Bernie
> > >
> > > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice Alcott
> > > scottbernice@ wrote:
> > > >
> > > >
> > > > Hi Bernie,
> > > >
> > > > I'm a Ewing's patient and an American living in Belgium (just 10
> > > million people) and have been anecdotally surprised at the number of
> > > cases just known to me arising in this small country. Turns out the
> > > nephew of a close work colleague also has ewing's, odd. So I started
> > > wondering about "clusters" too. After looking into it all, now I'm
> not
> > > so sure about the anecdotal math I was doing.
> > > >
> > > > In your case, Ewing's should appear much more often in the cape
> > anyway
> > > versus the general poulation. Are you controlling for that? Ewing's
> is
> > a
> > > white person's disease (it shows up 9x more often in white people)
> and
> > > the cape has 80% fewer "non-whites" then the general population.
> > Ewing's
> > > overwhelmingly clusters in teens 15-19. I don't know if the
> incidents
> > > you count on the cape include the summer/second home population
> which
> > > may statistically over-index heavily on families with kids versus
> the
> > > general population? Last, I've read that Ewing's is often discovered
> > > "more" in places with access to top teaching hospitals and places
> that
> > > do great pathology while other locations fail to accurately
> > subclassify
> > > tumors as Ewings (they think they are just general sarcomas or
> > > osteo-sarcoma, etc.). The cape has access to some of the finest
> > doctors,
> > > institutions and teaching hospitals in the world. Maybe kids who get
> > > painful lumps on the cape get to Boston and correctly diagnosed in
> > that
> > > area more than kids in other places? I don't know. I just think it's
> > > hard to control for all of this and accurately assess things.
> Ewing's
> > is
> > > so small and has so many correlations (age, race, diagnostic
> variance)
> > > that there is huge statistical "standard error" in the data. Given
> all
> > > that, I lost confidence in my ability to extrapolate the meaning of
> > > variance from 10 cases when there should have 4. Numbers are just
> too
> > > small. In my case, Belgium is VERY white and it's a world leader in
> > > analysis and pathology. I'm not so sure about anything any more!
> > > >
> > > > Scott
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
> > > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > >
> > > >
> > > >
> > > >
> > > > Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with
> a
> > > standardized incidence ratio of 3.84 (Massachusetts Department of
> > Public
> > > Health figure)or 6.67 (my figure). We should see one case every 6.7
> > > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and
> one
> > in
> > > 2005. There are cses in 1996 and 1996. There are also adult cases. A
> > > pair were diagnosed the same day; the 2 in 2004 the same month. A
> pair
> > > are 1.75 miles apart; another pair 1/4 mile apart. There is an
> > ensemble
> > > of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
> > > THere is a 13 mile gap between these two ensembles.I am suspicious
> of
> > a
> > > particularly high incidence in athletes or athletically active
> > > individuals, although I recognize we are becoming a more active
> > > society.Anyone have any observations or concerns to offer to this
> > > discussion?Bernie
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > [Non-text portions of this message have been removed]
> > > >
> > >
> > >
> > >
> > >
> > >
> > > __________ Information from ESET NOD32 Antivirus, version of virus
> > signature database 3329 (20080805) __________
> > >
> > > The message was checked by ESET NOD32 Antivirus.
> > >
> > > http://www.eset. com
> > >
> > >
> > > [Non-text portions of this message have been removed]
> > >
> >
> > [Non-text portions of this message have been removed]
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > [Non-text portions of this message have been removed]
> >
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>
>

[Non-text portions of this message have been removed]


















[Non-text portions of this message have been removed]

I have been reading all of this and I'd like to add my 2 cents.  JT broke his
leg Dec.31,04 wasn't diagnosed with Ewings until Nov. 15,07.  For at least two
years we had him in and out of the ER and were told growing pains.  He was not
an athlete and not really active, being  6'1" he always complained that his legs
hurt from the time he was five or six years old.  I really think the environment
has alot to do with him getting it.  I was told most Ewings patients find out
because of a broken bone.  I am very interested in the clusters and more info.

Thanks for sharing,

Shauna Mom to JT

  -------------- Original message ----------------------
From: Sharon Kory <sharonlkory@...>
> Bernie,
>
> My son was diagnosed during his first semester at Michigan, my daughter will
be
> a sophmore there this fall. Interesting to hear your're an alumni.  Haven't
yet,
> but plan to look at the links you sent and do a little research myself. I,
too,
> am quite miffed by the fact that no one ever questioned his medical history 
to
> try and trace back to something, if only for the sake of research. The other
> boys who were diagnosed were athletes as well. I have also questioned the
injury
> aspect. My son broke his wrist while wrestling in high school, although his
> tumour was on his spine; don't know if theres any correlation.
>
> Sharon
>
>
> Sharon Kory
>
> Sharon Kory Interiors Inc
> 29000 Inkster Rd. Suite 120
> Southfield, MI 48034
> phone:    248.357.3600 ext 203
> fax:         248.357.3646
>
> --- On Tue, 8/5/08, bjyoung716 <no_reply@yahoogroups.com> wrote:
>
> From: bjyoung716 <no_reply@yahoogroups.com>
> Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> To: ewingssarcoma@yahoogroups.com
> Date: Tuesday, August 5, 2008, 9:27 PM
>
>
>
>
>
>
>
> Sharon & Fawad
>
> This site had been dormant for a month and all of sudden it's a
> whirlwind.
>
> If you follow the same message I left with Patricia and read the files I
> posted, you will get an idea as to how these clusters are studied and
> denied through faulty research. I have been working on a list of
> exposures which might be factors in Ewing's or any other suspected
> cancer excess. I shouldn't have to do this. There are agencies which
> ought to be at the task. What we see though is a systematic approach at
> denying community cancer clusters.
>
> I also blog with the National Disease Clusters Alliance. It is a group
> of activists, families, victims, doctors, nurses, scientists, and
> epidemiologists who have become dissatisfied with the status quo and
> feel we ought to be able to find causes for these cancer clusters.
> Check out:
>
> http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/
> <http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/>
>
> If you go to the "search" window and enter keywords "Cape
> Cod" or "Ewing's" you will retrieve all the relevant
> messages. I'm going to alert them of the activity on this blog.
>
> What blows my mind is that three and a half years after my daughter's
> diagnosis, no one has even asked for her medical history, let alone
> investigate lifestyle factors or potential environmental exposures! If
> you don't ask the questions, you don't get the answers.
>
> Tonight I did a yahoo search on "Hockey" & "Ewing's
> sarcoma." You ought to try it. Try it with any sport. My
> daughter's sports were volleyball and track, but a football
> player/wannabee shot putter uncorked a wild shot and smashed her ankle.
> The conventional wisdom, probably 75years old, is that injuries
> don't lead to Ewing's. But I've seen so much bad research
> recently, and see so many associations between sports injuries and
> Ewing's that I think the source of that doctrine should be flushed
> out of the literature and re-examined.
>
> I know Bloomfield Hills as a haven for Michigan grads like me ('68 &
> '71). I also used to sail out of Bayview Yacht Club. My first ski
> adventure was at Mt. Holly. That was my daughter's name.
>
> Bernie
>
> --- In ewingssarcoma@ yahoogroups. com, Sharon Kory <sharonlkory@ ...>
> wrote:
> >
> > My son, now 26 years old, was diagnosed at age 18 with Ewings Sarcoma.
> We live in a suburb of Detroit, called Bloomfield Hills. There were at
> least three other boys in our general area diagnosed around the same
> time with either Ewings Sarcoma or Osteosarcoma, one of them attended
> the same high school. I have always found this to be quite peculiar, due
> to the rarity. The possibility of some environmental factor
> contributing to this disease seems to make sense. My son received 10
> months of chemo, radiation and surgery in a wonderful hospital in our
> area. We are very fortuneate that he is a healthy survivor. He too was
> an athlete, hockey player, wrestler, golfer and was a very active teen.
> > I would be interested in anything that would shed some light on why an
> otherwise healthy young man, with no family history of cancer could
> contract this horrible disease.
> > Best to all of you still struggling and or mourning the loss of a
> loved one. Our hearts will always be with you.
> >
> > Sharon Kory
> >
> > I am very curious
> > --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com wrote:
> >
> > From: bjyoung716 no_reply@yahoogroup s.com
> > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > To: ewingssarcoma@ yahoogroups. com
> > Date: Tuesday, August 5, 2008, 7:56 PM
> >
> >
> >
> >
> >
> >
> >
> > Patricia
> >
> > Maine West High School in DesPlaines, Illinois, had cases of Ewing's
> > sarcoma in 2003 and 2004 (the latter being a recent graduate). It's a
> > big school (5000 or so) just north of O'hare International Airport.
> > That community has perceived an excess of cancer, and I have seen
> > contours of incidence that diminish the further you get from the
> > airport. To have two cases of such a rare disease so close together
> > gets your attention, no matter what the epidemiologists say. Your
> > information is interesting.
> >
> > I belong to several yahoo groups, and all are organized differently.
> It
> > seems members of this group receive new messages automatically, so you
> > don't have to visit the home page (unless you want to download files
> or
> > search for old messages. If you follow this link:
> >
> > http://health. groups.yahoo. com/group/ ewingssarcoma/
> > <http://health. groups.yahoo. com/group/ ewingssarcoma/ >
> >
> > and click on the word "Files" you can download the files I have
> posted.
> >
> > My sympathies to you on the loss of your daughter. I too lost a
> > daughter in January just after her 22 birthday. She battled 3 years,
> > and enjoyed much support as she was an active athlete and played on
> many
> > teams.
> >
> > If you read my posts, there is an association on Cape Cod between a
> > unique electromagnetic radiation exposure and Ewing's. But I think
> > there are statistical confounders, and one (on a worldwide basis) is
> > contact sports (hockey, football, soccer). I am also suspicious of
> > osteochondroma; there seems to be a excess of that disease which
> > parallels the Cape Cod Ewing's cluster. After revealing my concerns to
> > the state health department, a mother with a son who had Ewing's said
> > she had another son with osteochondroma!
> >
> > Most of our professional epidemiologists are inclined to discredit
> talk
> > of clusters. But this is the 21st century, and with a better educated
> > population, the ability to instantaneously communicate with one
> another,
> > massive information storage and retrieval technology, and the help of
> > some friendly epidemiologists, I beleive we may be able to identify
> risk
> > factors for Ewing's where none now exist.
> >
> > Do you have any idea if the is a common exposure to some environmental
> > factor in your community or school? Even though I live on this side of
> > "the pond," I have seen several stories of Ewing's cases in the same
> > geographic area you describe. I'd like to know more about your
> > concerns. I don't want to bias your thinking before revealing some of
> > the confounding factors that have caught my attention.
> >
> > Hope to we hear more from you.
> >
> > Bernie
> >
> > --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
> > <patriciasmith@ ...> wrote:
> > >
> > > Hi
> > >
> > > I wonder could you post the information, I live in the republic of
> > ireland and we have a population of 3500,000million
> > > yet where I live and near by three teenagers at the same time were
> > diagnosed with ewings sarcoma.
> > > two sat beside one another in the same school.
> > > my daughter Krystle died of ewings sarcoma at aged 18 years we live
> 10
> > miles away.
> > > I am interested in clusters and I am a member of The bone cancer
> > research trust www.bonecancerresea rch.org.uk
> > > I got a lot of data from ireland england scotland and wales and we
> > seem to have a lot for a small population.
> > > there is very little research in this area.
> > >
> > > regards
> > > patricia
> > > ireland
> > >
> > >
> > > ----- Original Message -----
> > > From: bjyoung716
> > > To: ewingssarcoma@ yahoogroups. com
> > > Sent: Tuesday, August 05, 2008 9:13 AM
> > > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > >
> > >
> > >
> > > Scott
> > >
> > > Thank you for your comments. I have just posted three files on this
> > > blog (which I think are visible only to members) which answer most
> of
> > > the points you raise. They are dated and are best read in
> > chronological
> > > order; they seem to be listed with most recent on top.
> > >
> > > I would only add that diagnosis is often delayed, which is of
> > particular
> > > concern for athletes who are used to playing through pain. Our
> medical
> > > institutions are world class when it comes to confirming a diagnosis
> > and
> > > treating the disease. At the local level things are more ordinary.
> > >
> > > This cluster is unique to Cape Cod. There does not seem to be a
> > > dramatic elevation in Ewing's anywhere else in New England. It is
> 67%
> > > more severe than the Woburn Leukemia cluster documented the movie "A
> > > Civil Action."
> > >
> > > I don't know if EMR from our high powered radar station is the
> cause,
> > > but there are enough reasons to be concerned, and the research
> > > surrounding it has been pathetically poor. If anyone is still
> > > interested after reading these files, I have a 23 page letter of
> > > comments on a recent Environmental Impact Statement I can post.
> > >
> > > Bernie
> > >
> > > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice Alcott
> > > scottbernice@ wrote:
> > > >
> > > >
> > > > Hi Bernie,
> > > >
> > > > I'm a Ewing's patient and an American living in Belgium (just 10
> > > million people) and have been anecdotally surprised at the number of
> > > cases just known to me arising in this small country. Turns out the
> > > nephew of a close work colleague also has ewing's, odd. So I started
> > > wondering about "clusters" too. After looking into it all, now I'm
> not
> > > so sure about the anecdotal math I was doing.
> > > >
> > > > In your case, Ewing's should appear much more often in the cape
> > anyway
> > > versus the general poulation. Are you controlling for that? Ewing's
> is
> > a
> > > white person's disease (it shows up 9x more often in white people)
> and
> > > the cape has 80% fewer "non-whites" then the general population.
> > Ewing's
> > > overwhelmingly clusters in teens 15-19. I don't know if the
> incidents
> > > you count on the cape include the summer/second home population
> which
> > > may statistically over-index heavily on families with kids versus
> the
> > > general population? Last, I've read that Ewing's is often discovered
> > > "more" in places with access to top teaching hospitals and places
> that
> > > do great pathology while other locations fail to accurately
> > subclassify
> > > tumors as Ewings (they think they are just general sarcomas or
> > > osteo-sarcoma, etc.). The cape has access to some of the finest
> > doctors,
> > > institutions and teaching hospitals in the world. Maybe kids who get
> > > painful lumps on the cape get to Boston and correctly diagnosed in
> > that
> > > area more than kids in other places? I don't know. I just think it's
> > > hard to control for all of this and accurately assess things.
> Ewing's
> > is
> > > so small and has so many correlations (age, race, diagnostic
> variance)
> > > that there is huge statistical "standard error" in the data. Given
> all
> > > that, I lost confidence in my ability to extrapolate the meaning of
> > > variance from 10 cases when there should have 4. Numbers are just
> too
> > > small. In my case, Belgium is VERY white and it's a world leader in
> > > analysis and pathology. I'm not so sure about anything any more!
> > > >
> > > > Scott
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
> > > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > > >
> > > >
> > > >
> > > >
> > > > Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with
> a
> > > standardized incidence ratio of 3.84 (Massachusetts Department of
> > Public
> > > Health figure)or 6.67 (my figure). We should see one case every 6.7
> > > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and
> one
> > in
> > > 2005. There are cses in 1996 and 1996. There are also adult cases. A
> > > pair were diagnosed the same day; the 2 in 2004 the same month. A
> pair
> > > are 1.75 miles apart; another pair 1/4 mile apart. There is an
> > ensemble
> > > of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
> > > THere is a 13 mile gap between these two ensembles.I am suspicious
> of
> > a
> > > particularly high incidence in athletes or athletically active
> > > individuals, although I recognize we are becoming a more active
> > > society.Anyone have any observations or concerns to offer to this
> > > discussion?Bernie
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > [Non-text portions of this message have been removed]
> > > >
> > >
> > >
> > >
> > >
> > >
> > > __________ Information from ESET NOD32 Antivirus, version of virus
> > signature database 3329 (20080805) __________
> > >
> > > The message was checked by ESET NOD32 Antivirus.
> > >
> > > http://www.eset. com
> > >
> > >
> > > [Non-text portions of this message have been removed]
> > >
> >
> > [Non-text portions of this message have been removed]
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > [Non-text portions of this message have been removed]
> >
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>
>




[Non-text portions of this message have been removed]

My daughter was diagnosed in 2002 at age eight, she was involved in some sports,
but not much at that age. However, another child at the same school was
diagnosed with Ewings also a year later. Our population is 3800 in our town.
Interesting also that six months prior to my daughter's diagnosis, a one year
old child was diagnosed with Neuroblastoma, and apparantly there is some
relation and similarities between Ewings and Neuroblastoma.
I live in Virginia.
 
Marybeth

--- On Wed, 8/6/08, Sharon Kory <sharonlkory@...> wrote:

From: Sharon Kory <sharonlkory@...>
Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
To: ewingssarcoma@yahoogroups.com
Date: Wednesday, August 6, 2008, 11:21 AM






Bernie,
 
My son was diagnosed during his first semester at Michigan, my daughter will be
a sophmore there this fall. Interesting to hear your're an alumni.  Haven't yet,
but plan to look at the links you sent and do a little research myself. I, too,
am quite miffed by the fact that no one ever questioned his medical history  to
try and trace back to something, if only for the sake of research. The other
boys who were diagnosed were athletes as well. I have also questioned the injury
aspect. My son broke his wrist while wrestling in high school, although his
tumour was on his spine; don't know if theres any correlation.
 
Sharon

Sharon Kory
 
Sharon Kory Interiors Inc
29000 Inkster Rd. Suite 120
Southfield, MI 48034
phone:    248.357.3600 ext 203
fax:         248.357.3646

--- On Tue, 8/5/08, bjyoung716 <no_reply@yahoogroup s.com> wrote:

From: bjyoung716 <no_reply@yahoogroup s.com>
Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
To: ewingssarcoma@ yahoogroups. com
Date: Tuesday, August 5, 2008, 9:27 PM

Sharon & Fawad

This site had been dormant for a month and all of sudden it's a
whirlwind.

If you follow the same message I left with Patricia and read the files I
posted, you will get an idea as to how these clusters are studied and
denied through faulty research. I have been working on a list of
exposures which might be factors in Ewing's or any other suspected
cancer excess. I shouldn't have to do this. There are agencies which
ought to be at the task. What we see though is a systematic approach at
denying community cancer clusters.

I also blog with the National Disease Clusters Alliance. It is a group
of activists, families, victims, doctors, nurses, scientists, and
epidemiologists who have become dissatisfied with the status quo and
feel we ought to be able to find causes for these cancer clusters.
Check out:

http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/
<http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/ >

If you go to the "search" window and enter keywords "Cape
Cod" or "Ewing's" you will retrieve all the relevant
messages. I'm going to alert them of the activity on this blog.

What blows my mind is that three and a half years after my daughter's
diagnosis, no one has even asked for her medical history, let alone
investigate lifestyle factors or potential environmental exposures! If
you don't ask the questions, you don't get the answers.

Tonight I did a yahoo search on "Hockey" & "Ewing's
sarcoma." You ought to try it. Try it with any sport. My
daughter's sports were volleyball and track, but a football
player/wannabee shot putter uncorked a wild shot and smashed her ankle.
The conventional wisdom, probably 75years old, is that injuries
don't lead to Ewing's. But I've seen so much bad research
recently, and see so many associations between sports injuries and
Ewing's that I think the source of that doctrine should be flushed
out of the literature and re-examined.

I know Bloomfield Hills as a haven for Michigan grads like me ('68 &
'71). I also used to sail out of Bayview Yacht Club. My first ski
adventure was at Mt. Holly. That was my daughter's name.

Bernie

--- In ewingssarcoma@ yahoogroups. com, Sharon Kory <sharonlkory@ ...>
wrote:
>
> My son, now 26 years old, was diagnosed at age 18 with Ewings Sarcoma.
We live in a suburb of Detroit, called Bloomfield Hills. There were at
least three other boys in our general area diagnosed around the same
time with either Ewings Sarcoma or Osteosarcoma, one of them attended
the same high school. I have always found this to be quite peculiar, due
to the rarity. The possibility of some environmental factor
contributing to this disease seems to make sense. My son received 10
months of chemo, radiation and surgery in a wonderful hospital in our
area. We are very fortuneate that he is a healthy survivor. He too was
an athlete, hockey player, wrestler, golfer and was a very active teen.
> I would be interested in anything that would shed some light on why an
otherwise healthy young man, with no family history of cancer could
contract this horrible disease.
> Best to all of you still struggling and or mourning the loss of a
loved one. Our hearts will always be with you.
>
> Sharon Kory
>
> I am very curious
> --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com wrote:
>
> From: bjyoung716 no_reply@yahoogroup s.com
> Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> To: ewingssarcoma@ yahoogroups. com
> Date: Tuesday, August 5, 2008, 7:56 PM
>
>
>
>
>
>
>
> Patricia
>
> Maine West High School in DesPlaines, Illinois, had cases of Ewing's
> sarcoma in 2003 and 2004 (the latter being a recent graduate). It's a
> big school (5000 or so) just north of O'hare International Airport.
> That community has perceived an excess of cancer, and I have seen
> contours of incidence that diminish the further you get from the
> airport. To have two cases of such a rare disease so close together
> gets your attention, no matter what the epidemiologists say. Your
> information is interesting.
>
> I belong to several yahoo groups, and all are organized differently.
It
> seems members of this group receive new messages automatically, so you
> don't have to visit the home page (unless you want to download files
or
> search for old messages. If you follow this link:
>
> http://health. groups.yahoo. com/group/ ewingssarcoma/
> <http://health. groups.yahoo. com/group/ ewingssarcoma/ >
>
> and click on the word "Files" you can download the files I have
posted.
>
> My sympathies to you on the loss of your daughter. I too lost a
> daughter in January just after her 22 birthday. She battled 3 years,
> and enjoyed much support as she was an active athlete and played on
many
> teams.
>
> If you read my posts, there is an association on Cape Cod between a
> unique electromagnetic radiation exposure and Ewing's. But I think
> there are statistical confounders, and one (on a worldwide basis) is
> contact sports (hockey, football, soccer). I am also suspicious of
> osteochondroma; there seems to be a excess of that disease which
> parallels the Cape Cod Ewing's cluster. After revealing my concerns to
> the state health department, a mother with a son who had Ewing's said
> she had another son with osteochondroma!
>
> Most of our professional epidemiologists are inclined to discredit
talk
> of clusters. But this is the 21st century, and with a better educated
> population, the ability to instantaneously communicate with one
another,
> massive information storage and retrieval technology, and the help of
> some friendly epidemiologists, I beleive we may be able to identify
risk
> factors for Ewing's where none now exist.
>
> Do you have any idea if the is a common exposure to some environmental
> factor in your community or school? Even though I live on this side of
> "the pond," I have seen several stories of Ewing's cases in the same
> geographic area you describe. I'd like to know more about your
> concerns. I don't want to bias your thinking before revealing some of
> the confounding factors that have caught my attention.
>
> Hope to we hear more from you.
>
> Bernie
>
> --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
> <patriciasmith@ ...> wrote:
> >
> > Hi
> >
> > I wonder could you post the information, I live in the republic of
> ireland and we have a population of 3500,000million
> > yet where I live and near by three teenagers at the same time were
> diagnosed with ewings sarcoma.
> > two sat beside one another in the same school.
> > my daughter Krystle died of ewings sarcoma at aged 18 years we live
10
> miles away.
> > I am interested in clusters and I am a member of The bone cancer
> research trust www.bonecancerresea rch.org.uk
> > I got a lot of data from ireland england scotland and wales and we
> seem to have a lot for a small population.
> > there is very little research in this area.
> >
> > regards
> > patricia
> > ireland
> >
> >
> > ----- Original Message -----
> > From: bjyoung716
> > To: ewingssarcoma@ yahoogroups. com
> > Sent: Tuesday, August 05, 2008 9:13 AM
> > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> >
> >
> >
> > Scott
> >
> > Thank you for your comments. I have just posted three files on this
> > blog (which I think are visible only to members) which answer most
of
> > the points you raise. They are dated and are best read in
> chronological
> > order; they seem to be listed with most recent on top.
> >
> > I would only add that diagnosis is often delayed, which is of
> particular
> > concern for athletes who are used to playing through pain. Our
medical
> > institutions are world class when it comes to confirming a diagnosis
> and
> > treating the disease. At the local level things are more ordinary.
> >
> > This cluster is unique to Cape Cod. There does not seem to be a
> > dramatic elevation in Ewing's anywhere else in New England. It is
67%
> > more severe than the Woburn Leukemia cluster documented the movie "A
> > Civil Action."
> >
> > I don't know if EMR from our high powered radar station is the
cause,
> > but there are enough reasons to be concerned, and the research
> > surrounding it has been pathetically poor. If anyone is still
> > interested after reading these files, I have a 23 page letter of
> > comments on a recent Environmental Impact Statement I can post.
> >
> > Bernie
> >
> > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice Alcott
> > scottbernice@ wrote:
> > >
> > >
> > > Hi Bernie,
> > >
> > > I'm a Ewing's patient and an American living in Belgium (just 10
> > million people) and have been anecdotally surprised at the number of
> > cases just known to me arising in this small country. Turns out the
> > nephew of a close work colleague also has ewing's, odd. So I started
> > wondering about "clusters" too. After looking into it all, now I'm
not
> > so sure about the anecdotal math I was doing.
> > >
> > > In your case, Ewing's should appear much more often in the cape
> anyway
> > versus the general poulation. Are you controlling for that? Ewing's
is
> a
> > white person's disease (it shows up 9x more often in white people)
and
> > the cape has 80% fewer "non-whites" then the general population.
> Ewing's
> > overwhelmingly clusters in teens 15-19. I don't know if the
incidents
> > you count on the cape include the summer/second home population
which
> > may statistically over-index heavily on families with kids versus
the
> > general population? Last, I've read that Ewing's is often discovered
> > "more" in places with access to top teaching hospitals and places
that
> > do great pathology while other locations fail to accurately
> subclassify
> > tumors as Ewings (they think they are just general sarcomas or
> > osteo-sarcoma, etc.). The cape has access to some of the finest
> doctors,
> > institutions and teaching hospitals in the world. Maybe kids who get
> > painful lumps on the cape get to Boston and correctly diagnosed in
> that
> > area more than kids in other places? I don't know. I just think it's
> > hard to control for all of this and accurately assess things.
Ewing's
> is
> > so small and has so many correlations (age, race, diagnostic
variance)
> > that there is huge statistical "standard error" in the data. Given
all
> > that, I lost confidence in my ability to extrapolate the meaning of
> > variance from 10 cases when there should have 4. Numbers are just
too
> > small. In my case, Belgium is VERY white and it's a world leader in
> > analysis and pathology. I'm not so sure about anything any more!
> > >
> > > Scott
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
> > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > >
> > >
> > >
> > >
> > > Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with
a
> > standardized incidence ratio of 3.84 (Massachusetts Department of
> Public
> > Health figure)or 6.67 (my figure). We should see one case every 6.7
> > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and
one
> in
> > 2005. There are cses in 1996 and 1996. There are also adult cases. A
> > pair were diagnosed the same day; the 2 in 2004 the same month. A
pair
> > are 1.75 miles apart; another pair 1/4 mile apart. There is an
> ensemble
> > of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
> > THere is a 13 mile gap between these two ensembles.I am suspicious
of
> a
> > particularly high incidence in athletes or athletically active
> > individuals, although I recognize we are becoming a more active
> > society.Anyone have any observations or concerns to offer to this
> > discussion?Bernie
> > >
> > >
> > >
> > >
> > >
> > >
> > > [Non-text portions of this message have been removed]
> > >
> >
> >
> >
> >
> >
> > __________ Information from ESET NOD32 Antivirus, version of virus
> signature database 3329 (20080805) __________
> >
> > The message was checked by ESET NOD32 Antivirus.
> >
> > http://www.eset. com
> >
> >
> > [Non-text portions of this message have been removed]
> >
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]


















[Non-text portions of this message have been removed]

Bernie,
 
My son was diagnosed during his first semester at Michigan, my daughter will be
a sophmore there this fall. Interesting to hear your're an alumni.  Haven't yet,
but plan to look at the links you sent and do a little research myself. I, too,
am quite miffed by the fact that no one ever questioned his medical history  to
try and trace back to something, if only for the sake of research. The other
boys who were diagnosed were athletes as well. I have also questioned the injury
aspect. My son broke his wrist while wrestling in high school, although his
tumour was on his spine; don't know if theres any correlation.
 
Sharon


Sharon Kory
 
Sharon Kory Interiors Inc
29000 Inkster Rd. Suite 120
Southfield, MI 48034
phone:    248.357.3600 ext 203
fax:         248.357.3646

--- On Tue, 8/5/08, bjyoung716 <no_reply@yahoogroups.com> wrote:

From: bjyoung716 <no_reply@yahoogroups.com>
Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
To: ewingssarcoma@yahoogroups.com
Date: Tuesday, August 5, 2008, 9:27 PM







Sharon & Fawad

This site had been dormant for a month and all of sudden it's a
whirlwind.

If you follow the same message I left with Patricia and read the files I
posted, you will get an idea as to how these clusters are studied and
denied through faulty research. I have been working on a list of
exposures which might be factors in Ewing's or any other suspected
cancer excess. I shouldn't have to do this. There are agencies which
ought to be at the task. What we see though is a systematic approach at
denying community cancer clusters.

I also blog with the National Disease Clusters Alliance. It is a group
of activists, families, victims, doctors, nurses, scientists, and
epidemiologists who have become dissatisfied with the status quo and
feel we ought to be able to find causes for these cancer clusters.
Check out:

http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/
<http://tech. groups.yahoo. com/group/ NationalDiseaseC lustersAlliance/>

If you go to the "search" window and enter keywords "Cape
Cod" or "Ewing's" you will retrieve all the relevant
messages. I'm going to alert them of the activity on this blog.

What blows my mind is that three and a half years after my daughter's
diagnosis, no one has even asked for her medical history, let alone
investigate lifestyle factors or potential environmental exposures! If
you don't ask the questions, you don't get the answers.

Tonight I did a yahoo search on "Hockey" & "Ewing's
sarcoma." You ought to try it. Try it with any sport. My
daughter's sports were volleyball and track, but a football
player/wannabee shot putter uncorked a wild shot and smashed her ankle.
The conventional wisdom, probably 75years old, is that injuries
don't lead to Ewing's. But I've seen so much bad research
recently, and see so many associations between sports injuries and
Ewing's that I think the source of that doctrine should be flushed
out of the literature and re-examined.

I know Bloomfield Hills as a haven for Michigan grads like me ('68 &
'71). I also used to sail out of Bayview Yacht Club. My first ski
adventure was at Mt. Holly. That was my daughter's name.

Bernie

--- In ewingssarcoma@ yahoogroups. com, Sharon Kory <sharonlkory@ ...>
wrote:
>
> My son, now 26 years old, was diagnosed at age 18 with Ewings Sarcoma.
We live in a suburb of Detroit, called Bloomfield Hills. There were at
least three other boys in our general area diagnosed around the same
time with either Ewings Sarcoma or Osteosarcoma, one of them attended
the same high school. I have always found this to be quite peculiar, due
to the rarity. The possibility of some environmental factor
contributing to this disease seems to make sense. My son received 10
months of chemo, radiation and surgery in a wonderful hospital in our
area. We are very fortuneate that he is a healthy survivor. He too was
an athlete, hockey player, wrestler, golfer and was a very active teen.
> I would be interested in anything that would shed some light on why an
otherwise healthy young man, with no family history of cancer could
contract this horrible disease.
> Best to all of you still struggling and or mourning the loss of a
loved one. Our hearts will always be with you.
>
> Sharon Kory
>
> I am very curious
> --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroup s.com wrote:
>
> From: bjyoung716 no_reply@yahoogroup s.com
> Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> To: ewingssarcoma@ yahoogroups. com
> Date: Tuesday, August 5, 2008, 7:56 PM
>
>
>
>
>
>
>
> Patricia
>
> Maine West High School in DesPlaines, Illinois, had cases of Ewing's
> sarcoma in 2003 and 2004 (the latter being a recent graduate). It's a
> big school (5000 or so) just north of O'hare International Airport.
> That community has perceived an excess of cancer, and I have seen
> contours of incidence that diminish the further you get from the
> airport. To have two cases of such a rare disease so close together
> gets your attention, no matter what the epidemiologists say. Your
> information is interesting.
>
> I belong to several yahoo groups, and all are organized differently.
It
> seems members of this group receive new messages automatically, so you
> don't have to visit the home page (unless you want to download files
or
> search for old messages. If you follow this link:
>
> http://health. groups.yahoo. com/group/ ewingssarcoma/
> <http://health. groups.yahoo. com/group/ ewingssarcoma/ >
>
> and click on the word "Files" you can download the files I have
posted.
>
> My sympathies to you on the loss of your daughter. I too lost a
> daughter in January just after her 22 birthday. She battled 3 years,
> and enjoyed much support as she was an active athlete and played on
many
> teams.
>
> If you read my posts, there is an association on Cape Cod between a
> unique electromagnetic radiation exposure and Ewing's. But I think
> there are statistical confounders, and one (on a worldwide basis) is
> contact sports (hockey, football, soccer). I am also suspicious of
> osteochondroma; there seems to be a excess of that disease which
> parallels the Cape Cod Ewing's cluster. After revealing my concerns to
> the state health department, a mother with a son who had Ewing's said
> she had another son with osteochondroma!
>
> Most of our professional epidemiologists are inclined to discredit
talk
> of clusters. But this is the 21st century, and with a better educated
> population, the ability to instantaneously communicate with one
another,
> massive information storage and retrieval technology, and the help of
> some friendly epidemiologists, I beleive we may be able to identify
risk
> factors for Ewing's where none now exist.
>
> Do you have any idea if the is a common exposure to some environmental
> factor in your community or school? Even though I live on this side of
> "the pond," I have seen several stories of Ewing's cases in the same
> geographic area you describe. I'd like to know more about your
> concerns. I don't want to bias your thinking before revealing some of
> the confounding factors that have caught my attention.
>
> Hope to we hear more from you.
>
> Bernie
>
> --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
> <patriciasmith@ ...> wrote:
> >
> > Hi
> >
> > I wonder could you post the information, I live in the republic of
> ireland and we have a population of 3500,000million
> > yet where I live and near by three teenagers at the same time were
> diagnosed with ewings sarcoma.
> > two sat beside one another in the same school.
> > my daughter Krystle died of ewings sarcoma at aged 18 years we live
10
> miles away.
> > I am interested in clusters and I am a member of The bone cancer
> research trust www.bonecancerresea rch.org.uk
> > I got a lot of data from ireland england scotland and wales and we
> seem to have a lot for a small population.
> > there is very little research in this area.
> >
> > regards
> > patricia
> > ireland
> >
> >
> > ----- Original Message -----
> > From: bjyoung716
> > To: ewingssarcoma@ yahoogroups. com
> > Sent: Tuesday, August 05, 2008 9:13 AM
> > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> >
> >
> >
> > Scott
> >
> > Thank you for your comments. I have just posted three files on this
> > blog (which I think are visible only to members) which answer most
of
> > the points you raise. They are dated and are best read in
> chronological
> > order; they seem to be listed with most recent on top.
> >
> > I would only add that diagnosis is often delayed, which is of
> particular
> > concern for athletes who are used to playing through pain. Our
medical
> > institutions are world class when it comes to confirming a diagnosis
> and
> > treating the disease. At the local level things are more ordinary.
> >
> > This cluster is unique to Cape Cod. There does not seem to be a
> > dramatic elevation in Ewing's anywhere else in New England. It is
67%
> > more severe than the Woburn Leukemia cluster documented the movie "A
> > Civil Action."
> >
> > I don't know if EMR from our high powered radar station is the
cause,
> > but there are enough reasons to be concerned, and the research
> > surrounding it has been pathetically poor. If anyone is still
> > interested after reading these files, I have a 23 page letter of
> > comments on a recent Environmental Impact Statement I can post.
> >
> > Bernie
> >
> > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice Alcott
> > scottbernice@ wrote:
> > >
> > >
> > > Hi Bernie,
> > >
> > > I'm a Ewing's patient and an American living in Belgium (just 10
> > million people) and have been anecdotally surprised at the number of
> > cases just known to me arising in this small country. Turns out the
> > nephew of a close work colleague also has ewing's, odd. So I started
> > wondering about "clusters" too. After looking into it all, now I'm
not
> > so sure about the anecdotal math I was doing.
> > >
> > > In your case, Ewing's should appear much more often in the cape
> anyway
> > versus the general poulation. Are you controlling for that? Ewing's
is
> a
> > white person's disease (it shows up 9x more often in white people)
and
> > the cape has 80% fewer "non-whites" then the general population.
> Ewing's
> > overwhelmingly clusters in teens 15-19. I don't know if the
incidents
> > you count on the cape include the summer/second home population
which
> > may statistically over-index heavily on families with kids versus
the
> > general population? Last, I've read that Ewing's is often discovered
> > "more" in places with access to top teaching hospitals and places
that
> > do great pathology while other locations fail to accurately
> subclassify
> > tumors as Ewings (they think they are just general sarcomas or
> > osteo-sarcoma, etc.). The cape has access to some of the finest
> doctors,
> > institutions and teaching hospitals in the world. Maybe kids who get
> > painful lumps on the cape get to Boston and correctly diagnosed in
> that
> > area more than kids in other places? I don't know. I just think it's
> > hard to control for all of this and accurately assess things.
Ewing's
> is
> > so small and has so many correlations (age, race, diagnostic
variance)
> > that there is huge statistical "standard error" in the data. Given
all
> > that, I lost confidence in my ability to extrapolate the meaning of
> > variance from 10 cases when there should have 4. Numbers are just
too
> > small. In my case, Belgium is VERY white and it's a world leader in
> > analysis and pathology. I'm not so sure about anything any more!
> > >
> > > Scott
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
> > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > >
> > >
> > >
> > >
> > > Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with
a
> > standardized incidence ratio of 3.84 (Massachusetts Department of
> Public
> > Health figure)or 6.67 (my figure). We should see one case every 6.7
> > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and
one
> in
> > 2005. There are cses in 1996 and 1996. There are also adult cases. A
> > pair were diagnosed the same day; the 2 in 2004 the same month. A
pair
> > are 1.75 miles apart; another pair 1/4 mile apart. There is an
> ensemble
> > of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
> > THere is a 13 mile gap between these two ensembles.I am suspicious
of
> a
> > particularly high incidence in athletes or athletically active
> > individuals, although I recognize we are becoming a more active
> > society.Anyone have any observations or concerns to offer to this
> > discussion?Bernie
> > >
> > >
> > >
> > >
> > >
> > >
> > > [Non-text portions of this message have been removed]
> > >
> >
> >
> >
> >
> >
> > __________ Information from ESET NOD32 Antivirus, version of virus
> signature database 3329 (20080805) __________
> >
> > The message was checked by ESET NOD32 Antivirus.
> >
> > http://www.eset. com
> >
> >
> > [Non-text portions of this message have been removed]
> >
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

[Non-text portions of this message have been removed]


















[Non-text portions of this message have been removed]

Hi

There have been clusters in south of england in a school, as I said it has been
something \i have been very interested in,
as I said on my own I got from all the cancers registerers in the republic of
ireland and then northern ireland,
then I went to england, wales and then scotland  I got all the ages and cases of
ewings and osteo to see if I could
see a trend I saw a spot in the north east of england with the highest amount of
bone cancers it stood out.
all the UK figures were broken down it was interesting, I do know of a cluster
that broke out either in Dorset or Cornwall
in a school. I will check it out.

I live in a small town 8,000 people and we have had two cases last year of osteo
sarcoma.

our town had a fertilizer industry for forty years in it,  there are no
epidemiologists studies either in Ireland or the UK.
in my garden some kind of electrical juction box was underneath the ground.
One of the boys with ewings  in the next town lived beside an electrical
sub-station.

regards
Patricia


   ----- Original Message -----
   From: bjyoung716
   To: ewingssarcoma@yahoogroups.com
   Sent: Tuesday, August 05, 2008 4:56 PM
   Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster



   Patricia

   Maine West High School in DesPlaines, Illinois, had cases of Ewing's
   sarcoma in 2003 and 2004 (the latter being a recent graduate). It's a
   big school (5000 or so) just north of O'hare International Airport.
   That community has perceived an excess of cancer, and I have seen
   contours of incidence that diminish the further you get from the
   airport. To have two cases of such a rare disease so close together
   gets your attention, no matter what the epidemiologists say. Your
   information is interesting.

   I belong to several yahoo groups, and all are organized differently. It
   seems members of this group receive new messages automatically, so you
   don't have to visit the home page (unless you want to download files or
   search for old messages. If you follow this link:

   http://health.groups.yahoo.com/group/ewingssarcoma/
   <http://health.groups.yahoo.com/group/ewingssarcoma/>

   and click on the word "Files" you can download the files I have posted.

   My sympathies to you on the loss of your daughter. I too lost a
   daughter in January just after her 22 birthday. She battled 3 years,
   and enjoyed much support as she was an active athlete and played on many
   teams.

   If you read my posts, there is an association on Cape Cod between a
   unique electromagnetic radiation exposure and Ewing's. But I think
   there are statistical confounders, and one (on a worldwide basis) is
   contact sports (hockey, football, soccer). I am also suspicious of
   osteochondroma; there seems to be a excess of that disease which
   parallels the Cape Cod Ewing's cluster. After revealing my concerns to
   the state health department, a mother with a son who had Ewing's said
   she had another son with osteochondroma!

   Most of our professional epidemiologists are inclined to discredit talk
   of clusters. But this is the 21st century, and with a better educated
   population, the ability to instantaneously communicate with one another,
   massive information storage and retrieval technology, and the help of
   some friendly epidemiologists, I beleive we may be able to identify risk
   factors for Ewing's where none now exist.

   Do you have any idea if the is a common exposure to some environmental
   factor in your community or school? Even though I live on this side of
   "the pond," I have seen several stories of Ewing's cases in the same
   geographic area you describe. I'd like to know more about your
   concerns. I don't want to bias your thinking before revealing some of
   the confounding factors that have caught my attention.

   Hope to we hear more from you.

   Bernie

   --- In ewingssarcoma@yahoogroups.com, "patricia smith"
   <patriciasmith@...> wrote:
   >
   > Hi
   >
   > I wonder could you post the information, I live in the republic of
   ireland and we have a population of 3500,000million
   > yet where I live and near by three teenagers at the same time were
   diagnosed with ewings sarcoma.
   > two sat beside one another in the same school.
   > my daughter Krystle died of ewings sarcoma at aged 18 years we live 10
   miles away.
   > I am interested in clusters and I am a member of The bone cancer
   research trust www.bonecancerresearch.org.uk
   > I got a lot of data from ireland england scotland and wales and we
   seem to have a lot for a small population.
   > there is very little research in this area.
   >
   > regards
   > patricia
   > ireland
   >
   >
   > ----- Original Message -----
   > From: bjyoung716
   > To: ewingssarcoma@yahoogroups.com
   > Sent: Tuesday, August 05, 2008 9:13 AM
   > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   >
   >
   >
   > Scott
   >
   > Thank you for your comments. I have just posted three files on this
   > blog (which I think are visible only to members) which answer most of
   > the points you raise. They are dated and are best read in
   chronological
   > order; they seem to be listed with most recent on top.
   >
   > I would only add that diagnosis is often delayed, which is of
   particular
   > concern for athletes who are used to playing through pain. Our medical
   > institutions are world class when it comes to confirming a diagnosis
   and
   > treating the disease. At the local level things are more ordinary.
   >
   > This cluster is unique to Cape Cod. There does not seem to be a
   > dramatic elevation in Ewing's anywhere else in New England. It is 67%
   > more severe than the Woburn Leukemia cluster documented the movie "A
   > Civil Action."
   >
   > I don't know if EMR from our high powered radar station is the cause,
   > but there are enough reasons to be concerned, and the research
   > surrounding it has been pathetically poor. If anyone is still
   > interested after reading these files, I have a 23 page letter of
   > comments on a recent Environmental Impact Statement I can post.
   >
   > Bernie
   >
   > --- In ewingssarcoma@yahoogroups.com, Scott and Bernice Alcott
   > scottbernice@ wrote:
   > >
   > >
   > > Hi Bernie,
   > >
   > > I'm a Ewing's patient and an American living in Belgium (just 10
   > million people) and have been anecdotally surprised at the number of
   > cases just known to me arising in this small country. Turns out the
   > nephew of a close work colleague also has ewing's, odd. So I started
   > wondering about "clusters" too. After looking into it all, now I'm not
   > so sure about the anecdotal math I was doing.
   > >
   > > In your case, Ewing's should appear much more often in the cape
   anyway
   > versus the general poulation. Are you controlling for that? Ewing's is
   a
   > white person's disease (it shows up 9x more often in white people) and
   > the cape has 80% fewer "non-whites" then the general population.
   Ewing's
   > overwhelmingly clusters in teens 15-19. I don't know if the incidents
   > you count on the cape include the summer/second home population which
   > may statistically over-index heavily on families with kids versus the
   > general population? Last, I've read that Ewing's is often discovered
   > "more" in places with access to top teaching hospitals and places that
   > do great pathology while other locations fail to accurately
   subclassify
   > tumors as Ewings (they think they are just general sarcomas or
   > osteo-sarcoma, etc.). The cape has access to some of the finest
   doctors,
   > institutions and teaching hospitals in the world. Maybe kids who get
   > painful lumps on the cape get to Boston and correctly diagnosed in
   that
   > area more than kids in other places? I don't know. I just think it's
   > hard to control for all of this and accurately assess things. Ewing's
   is
   > so small and has so many correlations (age, race, diagnostic variance)
   > that there is huge statistical "standard error" in the data. Given all
   > that, I lost confidence in my ability to extrapolate the meaning of
   > variance from 10 cases when there should have 4. Numbers are just too
   > small. In my case, Belgium is VERY white and it's a world leader in
   > analysis and pathology. I'm not so sure about anything any more!
   > >
   > > Scott
   > >
   > >
   > >
   > >
   > >
   > >
   > >
   > > To: ewingssarcoma@: no_reply@: Tue, 5 Aug 2008 04:39:23
   > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   > >
   > >
   > >
   > >
   > > Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with a
   > standardized incidence ratio of 3.84 (Massachusetts Department of
   Public
   > Health figure)or 6.67 (my figure). We should see one case every 6.7
   > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and one
   in
   > 2005. There are cses in 1996 and 1996. There are also adult cases. A
   > pair were diagnosed the same day; the 2 in 2004 the same month. A pair
   > are 1.75 miles apart; another pair 1/4 mile apart. There is an
   ensemble
   > of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
   > THere is a 13 mile gap between these two ensembles.I am suspicious of
   a
   > particularly high incidence in athletes or athletically active
   > individuals, although I recognize we are becoming a more active
   > society.Anyone have any observations or concerns to offer to this
   > discussion?Bernie
   > >
   > >
   > >
   > >
   > >
   > >
   > > [Non-text portions of this message have been removed]
   > >
   >
   >
   >
   >
   >
   > __________ Information from ESET NOD32 Antivirus, version of virus
   signature database 3329 (20080805) __________
   >
   > The message was checked by ESET NOD32 Antivirus.
   >
   > http://www.eset.com
   >
   >
   > [Non-text portions of this message have been removed]
   >

   [Non-text portions of this message have been removed]





   __________ Information from ESET NOD32 Antivirus, version of virus signature
database 3330 (20080805) __________

   The message was checked by ESET NOD32 Antivirus.

   http://www.eset.com


[Non-text portions of this message have been removed]

Sharon & Fawad



This site had been dormant for a month and all of sudden it's a
whirlwind.



If you follow the same message I left with Patricia and read the files I
posted, you will get an idea as to how these clusters are studied and
denied through faulty research.  I have been working on a list of
exposures which might be factors in Ewing's or any other suspected
cancer excess.  I shouldn't have to do this.  There are agencies which
ought to be at the task.  What we see though is a systematic approach at
denying community cancer clusters.



I also blog with the National Disease Clusters Alliance.  It is a group
of activists, families, victims, doctors, nurses, scientists, and
epidemiologists who have become dissatisfied with the status quo and
feel we ought to be able to find causes for these cancer clusters.
Check out:



http://tech.groups.yahoo.com/group/NationalDiseaseClustersAlliance/
<http://tech.groups.yahoo.com/group/NationalDiseaseClustersAlliance/>



If you go to the "search" window and enter keywords "Cape
Cod" or "Ewing's" you will retrieve all the relevant
messages.  I'm going to alert them of the activity on this blog.



What blows my mind is that three and a half years after my daughter's
diagnosis, no one has even asked for her medical history, let alone
investigate lifestyle factors or potential environmental exposures!  If
you don't ask the questions, you don't get the answers.



Tonight I did a yahoo search on "Hockey" & "Ewing's
sarcoma."  You ought to try it.  Try it with any sport.  My
daughter's sports were volleyball and track, but a football
player/wannabee shot putter uncorked a wild shot and smashed her ankle.
The conventional wisdom, probably 75years old, is that injuries
don't lead to Ewing's.  But I've seen so much bad research
recently, and see so many associations between sports injuries and
Ewing's that I think the source of that doctrine should be flushed
out of the literature and re-examined.



I know Bloomfield Hills as a haven for Michigan grads like me ('68 &
'71).  I also used to sail out of Bayview Yacht Club.  My first ski
adventure was at Mt. Holly.  That was my daughter's name.



Bernie

--- In ewingssarcoma@yahoogroups.com, Sharon Kory <sharonlkory@...>
wrote:
>
> My son, now 26 years old, was diagnosed at age 18 with Ewings Sarcoma.
We live in a suburb of Detroit, called Bloomfield Hills. There were at
least three other boys in our general area diagnosed around the same
time with either Ewings Sarcoma or Osteosarcoma, one of them attended
the same high school. I have always found this to be quite peculiar, due
to the rarity.   The possibility of some environmental factor
contributing to this disease seems to make sense. My son received 10
months of chemo, radiation and surgery in a wonderful hospital in our
area. We are very fortuneate that he is a healthy survivor. He too was
an athlete, hockey player, wrestler, golfer and was a very active teen.
> I would be interested in anything that would shed some light on why an
otherwise healthy young man, with no family history of cancer could
contract this horrible disease.
> Best to all of you still struggling and or mourning the loss of a
loved one. Our hearts will always be with you.
>
> Sharon Kory
>
> I am very curious
> --- On Tue, 8/5/08, bjyoung716 no_reply@yahoogroups.com wrote:
>
> From: bjyoung716 no_reply@yahoogroups.com
> Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> To: ewingssarcoma@yahoogroups.com
> Date: Tuesday, August 5, 2008, 7:56 PM
>
>
>
>
>
>
>
> Patricia
>
> Maine West High School in DesPlaines, Illinois, had cases of Ewing's
> sarcoma in 2003 and 2004 (the latter being a recent graduate). It's a
> big school (5000 or so) just north of O'hare International Airport.
> That community has perceived an excess of cancer, and I have seen
> contours of incidence that diminish the further you get from the
> airport. To have two cases of such a rare disease so close together
> gets your attention, no matter what the epidemiologists say. Your
> information is interesting.
>
> I belong to several yahoo groups, and all are organized differently.
It
> seems members of this group receive new messages automatically, so you
> don't have to visit the home page (unless you want to download files
or
> search for old messages. If you follow this link:
>
> http://health. groups.yahoo. com/group/ ewingssarcoma/
> <http://health. groups.yahoo. com/group/ ewingssarcoma/>
>
> and click on the word "Files" you can download the files I have
posted.
>
> My sympathies to you on the loss of your daughter. I too lost a
> daughter in January just after her 22 birthday. She battled 3 years,
> and enjoyed much support as she was an active athlete and played on
many
> teams.
>
> If you read my posts, there is an association on Cape Cod between a
> unique electromagnetic radiation exposure and Ewing's. But I think
> there are statistical confounders, and one (on a worldwide basis) is
> contact sports (hockey, football, soccer). I am also suspicious of
> osteochondroma; there seems to be a excess of that disease which
> parallels the Cape Cod Ewing's cluster. After revealing my concerns to
> the state health department, a mother with a son who had Ewing's said
> she had another son with osteochondroma!
>
> Most of our professional epidemiologists are inclined to discredit
talk
> of clusters. But this is the 21st century, and with a better educated
> population, the ability to instantaneously communicate with one
another,
> massive information storage and retrieval technology, and the help of
> some friendly epidemiologists, I beleive we may be able to identify
risk
> factors for Ewing's where none now exist.
>
> Do you have any idea if the is a common exposure to some environmental
> factor in your community or school? Even though I live on this side of
> "the pond," I have seen several stories of Ewing's cases in the same
> geographic area you describe. I'd like to know more about your
> concerns. I don't want to bias your thinking before revealing some of
> the confounding factors that have caught my attention.
>
> Hope to we hear more from you.
>
> Bernie
>
> --- In ewingssarcoma@ yahoogroups. com, "patricia smith"
> <patriciasmith@ ...> wrote:
> >
> > Hi
> >
> > I wonder could you post the information, I live in the republic of
> ireland and we have a population of 3500,000million
> > yet where I live and near by three teenagers at the same time were
> diagnosed with ewings sarcoma.
> > two sat beside one another in the same school.
> > my daughter Krystle died of ewings sarcoma at aged 18 years we live
10
> miles away.
> > I am interested in clusters and I am a member of The bone cancer
> research trust www.bonecancerresea rch.org.uk
> > I got a lot of data from ireland england scotland and wales and we
> seem to have a lot for a small population.
> > there is very little research in this area.
> >
> > regards
> > patricia
> > ireland
> >
> >
> > ----- Original Message -----
> > From: bjyoung716
> > To: ewingssarcoma@ yahoogroups. com
> > Sent: Tuesday, August 05, 2008 9:13 AM
> > Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> >
> >
> >
> > Scott
> >
> > Thank you for your comments. I have just posted three files on this
> > blog (which I think are visible only to members) which answer most
of
> > the points you raise. They are dated and are best read in
> chronological
> > order; they seem to be listed with most recent on top.
> >
> > I would only add that diagnosis is often delayed, which is of
> particular
> > concern for athletes who are used to playing through pain. Our
medical
> > institutions are world class when it comes to confirming a diagnosis
> and
> > treating the disease. At the local level things are more ordinary.
> >
> > This cluster is unique to Cape Cod. There does not seem to be a
> > dramatic elevation in Ewing's anywhere else in New England. It is
67%
> > more severe than the Woburn Leukemia cluster documented the movie "A
> > Civil Action."
> >
> > I don't know if EMR from our high powered radar station is the
cause,
> > but there are enough reasons to be concerned, and the research
> > surrounding it has been pathetically poor. If anyone is still
> > interested after reading these files, I have a 23 page letter of
> > comments on a recent Environmental Impact Statement I can post.
> >
> > Bernie
> >
> > --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice Alcott
> > scottbernice@ wrote:
> > >
> > >
> > > Hi Bernie,
> > >
> > > I'm a Ewing's patient and an American living in Belgium (just 10
> > million people) and have been anecdotally surprised at the number of
> > cases just known to me arising in this small country. Turns out the
> > nephew of a close work colleague also has ewing's, odd. So I started
> > wondering about "clusters" too. After looking into it all, now I'm
not
> > so sure about the anecdotal math I was doing.
> > >
> > > In your case, Ewing's should appear much more often in the cape
> anyway
> > versus the general poulation. Are you controlling for that? Ewing's
is
> a
> > white person's disease (it shows up 9x more often in white people)
and
> > the cape has 80% fewer "non-whites" then the general population.
> Ewing's
> > overwhelmingly clusters in teens 15-19. I don't know if the
incidents
> > you count on the cape include the summer/second home population
which
> > may statistically over-index heavily on families with kids versus
the
> > general population? Last, I've read that Ewing's is often discovered
> > "more" in places with access to top teaching hospitals and places
that
> > do great pathology while other locations fail to accurately
> subclassify
> > tumors as Ewings (they think they are just general sarcomas or
> > osteo-sarcoma, etc.). The cape has access to some of the finest
> doctors,
> > institutions and teaching hospitals in the world. Maybe kids who get
> > painful lumps on the cape get to Boston and correctly diagnosed in
> that
> > area more than kids in other places? I don't know. I just think it's
> > hard to control for all of this and accurately assess things.
Ewing's
> is
> > so small and has so many correlations (age, race, diagnostic
variance)
> > that there is huge statistical "standard error" in the data. Given
all
> > that, I lost confidence in my ability to extrapolate the meaning of
> > variance from 10 cases when there should have 4. Numbers are just
too
> > small. In my case, Belgium is VERY white and it's a world leader in
> > analysis and pathology. I'm not so sure about anything any more!
> > >
> > > Scott
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
> > +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> > >
> > >
> > >
> > >
> > > Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with
a
> > standardized incidence ratio of 3.84 (Massachusetts Department of
> Public
> > Health figure)or 6.67 (my figure). We should see one case every 6.7
> > years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and
one
> in
> > 2005. There are cses in 1996 and 1996. There are also adult cases. A
> > pair were diagnosed the same day; the 2 in 2004 the same month. A
pair
> > are 1.75 miles apart; another pair 1/4 mile apart. There is an
> ensemble
> > of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
> > THere is a 13 mile gap between these two ensembles.I am suspicious
of
> a
> > particularly high incidence in athletes or athletically active
> > individuals, although I recognize we are becoming a more active
> > society.Anyone have any observations or concerns to offer to this
> > discussion?Bernie
> > >
> > >
> > >
> > >
> > >
> > >
> > > [Non-text portions of this message have been removed]
> > >
> >
> >
> >
> >
> >
> > __________ Information from ESET NOD32 Antivirus, version of virus
> signature database 3329 (20080805) __________
> >
> > The message was checked by ESET NOD32 Antivirus.
> >
> > http://www.eset. com
> >
> >
> > [Non-text portions of this message have been removed]
> >
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>



[Non-text portions of this message have been removed]

My son, now 26 years old, was diagnosed at age 18 with Ewings Sarcoma.  We live
in a suburb of Detroit, called Bloomfield Hills. There were at least three other
boys in our general area diagnosed around the same time with either Ewings
Sarcoma or Osteosarcoma, one of them attended the same high school. I have
always found this to be quite peculiar, due to the rarity.   The possibility of
some environmental factor contributing to this disease seems to make sense. My
son received 10 months of chemo, radiation and surgery in a wonderful hospital
in our area. We are very fortuneate that he is a healthy survivor. He too was an
athlete, hockey player, wrestler, golfer and was a very active teen.
I would be interested in anything that would shed some light on why an otherwise
healthy young man, with no family history of cancer could contract this horrible
disease.
Best to all of you still struggling and or mourning the loss of a loved one. Our
hearts will always be with you.
 
Sharon Kory
 
I am very curious
--- On Tue, 8/5/08, bjyoung716 <no_reply@yahoogroups.com> wrote:

From: bjyoung716 <no_reply@yahoogroups.com>
Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
To: ewingssarcoma@yahoogroups.com
Date: Tuesday, August 5, 2008, 7:56 PM







Patricia

Maine West High School in DesPlaines, Illinois, had cases of Ewing's
sarcoma in 2003 and 2004 (the latter being a recent graduate). It's a
big school (5000 or so) just north of O'hare International Airport.
That community has perceived an excess of cancer, and I have seen
contours of incidence that diminish the further you get from the
airport. To have two cases of such a rare disease so close together
gets your attention, no matter what the epidemiologists say. Your
information is interesting.

I belong to several yahoo groups, and all are organized differently. It
seems members of this group receive new messages automatically, so you
don't have to visit the home page (unless you want to download files or
search for old messages. If you follow this link:

http://health. groups.yahoo. com/group/ ewingssarcoma/
<http://health. groups.yahoo. com/group/ ewingssarcoma/>

and click on the word "Files" you can download the files I have posted.

My sympathies to you on the loss of your daughter. I too lost a
daughter in January just after her 22 birthday. She battled 3 years,
and enjoyed much support as she was an active athlete and played on many
teams.

If you read my posts, there is an association on Cape Cod between a
unique electromagnetic radiation exposure and Ewing's. But I think
there are statistical confounders, and one (on a worldwide basis) is
contact sports (hockey, football, soccer). I am also suspicious of
osteochondroma; there seems to be a excess of that disease which
parallels the Cape Cod Ewing's cluster. After revealing my concerns to
the state health department, a mother with a son who had Ewing's said
she had another son with osteochondroma!

Most of our professional epidemiologists are inclined to discredit talk
of clusters. But this is the 21st century, and with a better educated
population, the ability to instantaneously communicate with one another,
massive information storage and retrieval technology, and the help of
some friendly epidemiologists, I beleive we may be able to identify risk
factors for Ewing's where none now exist.

Do you have any idea if the is a common exposure to some environmental
factor in your community or school? Even though I live on this side of
"the pond," I have seen several stories of Ewing's cases in the same
geographic area you describe. I'd like to know more about your
concerns. I don't want to bias your thinking before revealing some of
the confounding factors that have caught my attention.

Hope to we hear more from you.

Bernie

--- In ewingssarcoma@ yahoogroups. com, "patricia smith"
<patriciasmith@ ...> wrote:
>
> Hi
>
> I wonder could you post the information, I live in the republic of
ireland and we have a population of 3500,000million
> yet where I live and near by three teenagers at the same time were
diagnosed with ewings sarcoma.
> two sat beside one another in the same school.
> my daughter Krystle died of ewings sarcoma at aged 18 years we live 10
miles away.
> I am interested in clusters and I am a member of The bone cancer
research trust www.bonecancerresea rch.org.uk
> I got a lot of data from ireland england scotland and wales and we
seem to have a lot for a small population.
> there is very little research in this area.
>
> regards
> patricia
> ireland
>
>
> ----- Original Message -----
> From: bjyoung716
> To: ewingssarcoma@ yahoogroups. com
> Sent: Tuesday, August 05, 2008 9:13 AM
> Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
>
>
>
> Scott
>
> Thank you for your comments. I have just posted three files on this
> blog (which I think are visible only to members) which answer most of
> the points you raise. They are dated and are best read in
chronological
> order; they seem to be listed with most recent on top.
>
> I would only add that diagnosis is often delayed, which is of
particular
> concern for athletes who are used to playing through pain. Our medical
> institutions are world class when it comes to confirming a diagnosis
and
> treating the disease. At the local level things are more ordinary.
>
> This cluster is unique to Cape Cod. There does not seem to be a
> dramatic elevation in Ewing's anywhere else in New England. It is 67%
> more severe than the Woburn Leukemia cluster documented the movie "A
> Civil Action."
>
> I don't know if EMR from our high powered radar station is the cause,
> but there are enough reasons to be concerned, and the research
> surrounding it has been pathetically poor. If anyone is still
> interested after reading these files, I have a 23 page letter of
> comments on a recent Environmental Impact Statement I can post.
>
> Bernie
>
> --- In ewingssarcoma@ yahoogroups. com, Scott and Bernice Alcott
> scottbernice@ wrote:
> >
> >
> > Hi Bernie,
> >
> > I'm a Ewing's patient and an American living in Belgium (just 10
> million people) and have been anecdotally surprised at the number of
> cases just known to me arising in this small country. Turns out the
> nephew of a close work colleague also has ewing's, odd. So I started
> wondering about "clusters" too. After looking into it all, now I'm not
> so sure about the anecdotal math I was doing.
> >
> > In your case, Ewing's should appear much more often in the cape
anyway
> versus the general poulation. Are you controlling for that? Ewing's is
a
> white person's disease (it shows up 9x more often in white people) and
> the cape has 80% fewer "non-whites" then the general population.
Ewing's
> overwhelmingly clusters in teens 15-19. I don't know if the incidents
> you count on the cape include the summer/second home population which
> may statistically over-index heavily on families with kids versus the
> general population? Last, I've read that Ewing's is often discovered
> "more" in places with access to top teaching hospitals and places that
> do great pathology while other locations fail to accurately
subclassify
> tumors as Ewings (they think they are just general sarcomas or
> osteo-sarcoma, etc.). The cape has access to some of the finest
doctors,
> institutions and teaching hospitals in the world. Maybe kids who get
> painful lumps on the cape get to Boston and correctly diagnosed in
that
> area more than kids in other places? I don't know. I just think it's
> hard to control for all of this and accurately assess things. Ewing's
is
> so small and has so many correlations (age, race, diagnostic variance)
> that there is huge statistical "standard error" in the data. Given all
> that, I lost confidence in my ability to extrapolate the meaning of
> variance from 10 cases when there should have 4. Numbers are just too
> small. In my case, Belgium is VERY white and it's a world leader in
> analysis and pathology. I'm not so sure about anything any more!
> >
> > Scott
> >
> >
> >
> >
> >
> >
> >
> > To: ewingssarcoma@ : no_reply@: Tue, 5 Aug 2008 04:39:23
> +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> >
> >
> >
> >
> > Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with a
> standardized incidence ratio of 3.84 (Massachusetts Department of
Public
> Health figure)or 6.67 (my figure). We should see one case every 6.7
> years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and one
in
> 2005. There are cses in 1996 and 1996. There are also adult cases. A
> pair were diagnosed the same day; the 2 in 2004 the same month. A pair
> are 1.75 miles apart; another pair 1/4 mile apart. There is an
ensemble
> of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
> THere is a 13 mile gap between these two ensembles.I am suspicious of
a
> particularly high incidence in athletes or athletically active
> individuals, although I recognize we are becoming a more active
> society.Anyone have any observations or concerns to offer to this
> discussion?Bernie
> >
> >
> >
> >
> >
> >
> > [Non-text portions of this message have been removed]
> >
>
>
>
>
>
> __________ Information from ESET NOD32 Antivirus, version of virus
signature database 3329 (20080805) __________
>
> The message was checked by ESET NOD32 Antivirus.
>
> http://www.eset. com
>
>
> [Non-text portions of this message have been removed]
>

[Non-text portions of this message have been removed]


















[Non-text portions of this message have been removed]

Patricia

Maine West High School in DesPlaines, Illinois, had  cases of Ewing's
sarcoma in 2003 and 2004 (the latter being a recent graduate).  It's a
big school (5000 or so) just north of O'hare International Airport.
That community has perceived an excess of cancer, and I have seen
contours of incidence that diminish the further you get from the
airport.  To have two cases of such a rare disease so close together
gets your attention, no matter what the epidemiologists say. Your
information is interesting.

I belong to several yahoo groups, and all are organized differently.  It
seems members of this group receive new messages automatically, so you
don't have to visit the home page (unless you want to download files or
search for old messages.  If you follow this link:

http://health.groups.yahoo.com/group/ewingssarcoma/
<http://health.groups.yahoo.com/group/ewingssarcoma/>

and click on the word "Files" you can download the files I have posted.

My sympathies to you on the loss of your daughter.  I too lost a
daughter in January just after her 22 birthday.  She battled 3 years,
and enjoyed much support as she was an active athlete and played on many
teams.

If you read my posts, there is an association on Cape Cod between a
unique electromagnetic radiation exposure and Ewing's.  But I think
there are statistical confounders, and one (on a worldwide basis) is
contact sports (hockey, football, soccer).   I am also suspicious of
osteochondroma; there seems to be a excess of that disease which
parallels the Cape Cod Ewing's cluster.  After revealing my concerns to
the state health department, a mother with a son who had Ewing's said
she had another son with osteochondroma!

Most of our professional epidemiologists are inclined to discredit talk
of clusters.  But this is the 21st century, and with a better educated
population, the ability to instantaneously communicate with one another,
massive information storage and retrieval technology, and the help of
some friendly epidemiologists, I beleive we may be able to identify risk
factors for Ewing's where none now exist.

Do you have any idea if the is a common exposure to some environmental
factor in your community or school?  Even though I live on this side of
"the pond," I have seen several stories of Ewing's cases in the same
geographic area you describe.  I'd like to know more about your
concerns.  I don't want to bias your thinking before revealing some of
the confounding factors that have caught my attention.

Hope to we hear more from you.

Bernie





--- In ewingssarcoma@yahoogroups.com, "patricia smith"
<patriciasmith@...> wrote:
>
> Hi
>
> I wonder could you post the information, I live in the republic of
ireland and we have a population of 3500,000million
> yet where I live and near by three teenagers at the same time were
diagnosed with ewings sarcoma.
> two sat beside one another in the same school.
> my daughter Krystle died of ewings sarcoma at aged 18 years we live 10
miles away.
> I am interested in clusters and I am a member of The bone cancer
research trust www.bonecancerresearch.org.uk
> I got a lot of data from ireland england scotland and wales and we
seem to have a lot for a small population.
> there is very little research in this area.
>
> regards
> patricia
> ireland
>
>
> ----- Original Message -----
> From: bjyoung716
> To: ewingssarcoma@yahoogroups.com
> Sent: Tuesday, August 05, 2008 9:13 AM
> Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
>
>
>
> Scott
>
> Thank you for your comments. I have just posted three files on this
> blog (which I think are visible only to members) which answer most of
> the points you raise. They are dated and are best read in
chronological
> order; they seem to be listed with most recent on top.
>
> I would only add that diagnosis is often delayed, which is of
particular
> concern for athletes who are used to playing through pain. Our medical
> institutions are world class when it comes to confirming a diagnosis
and
> treating the disease. At the local level things are more ordinary.
>
> This cluster is unique to Cape Cod. There does not seem to be a
> dramatic elevation in Ewing's anywhere else in New England. It is 67%
> more severe than the Woburn Leukemia cluster documented the movie "A
> Civil Action."
>
> I don't know if EMR from our high powered radar station is the cause,
> but there are enough reasons to be concerned, and the research
> surrounding it has been pathetically poor. If anyone is still
> interested after reading these files, I have a 23 page letter of
> comments on a recent Environmental Impact Statement I can post.
>
> Bernie
>
> --- In ewingssarcoma@yahoogroups.com, Scott and Bernice Alcott
> scottbernice@ wrote:
> >
> >
> > Hi Bernie,
> >
> > I'm a Ewing's patient and an American living in Belgium (just 10
> million people) and have been anecdotally surprised at the number of
> cases just known to me arising in this small country. Turns out the
> nephew of a close work colleague also has ewing's, odd. So I started
> wondering about "clusters" too. After looking into it all, now I'm not
> so sure about the anecdotal math I was doing.
> >
> > In your case, Ewing's should appear much more often in the cape
anyway
> versus the general poulation. Are you controlling for that? Ewing's is
a
> white person's disease (it shows up 9x more often in white people) and
> the cape has 80% fewer "non-whites" then the general population.
Ewing's
> overwhelmingly clusters in teens 15-19. I don't know if the incidents
> you count on the cape include the summer/second home population which
> may statistically over-index heavily on families with kids versus the
> general population? Last, I've read that Ewing's is often discovered
> "more" in places with access to top teaching hospitals and places that
> do great pathology while other locations fail to accurately
subclassify
> tumors as Ewings (they think they are just general sarcomas or
> osteo-sarcoma, etc.). The cape has access to some of the finest
doctors,
> institutions and teaching hospitals in the world. Maybe kids who get
> painful lumps on the cape get to Boston and correctly diagnosed in
that
> area more than kids in other places? I don't know. I just think it's
> hard to control for all of this and accurately assess things. Ewing's
is
> so small and has so many correlations (age, race, diagnostic variance)
> that there is huge statistical "standard error" in the data. Given all
> that, I lost confidence in my ability to extrapolate the meaning of
> variance from 10 cases when there should have 4. Numbers are just too
> small. In my case, Belgium is VERY white and it's a world leader in
> analysis and pathology. I'm not so sure about anything any more!
> >
> > Scott
> >
> >
> >
> >
> >
> >
> >
> > To: ewingssarcoma@: no_reply@: Tue, 5 Aug 2008 04:39:23
> +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
> >
> >
> >
> >
> > Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with a
> standardized incidence ratio of 3.84 (Massachusetts Department of
Public
> Health figure)or 6.67 (my figure). We should see one case every 6.7
> years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and one
in
> 2005. There are cses in 1996 and 1996. There are also adult cases. A
> pair were diagnosed the same day; the 2 in 2004 the same month. A pair
> are 1.75 miles apart; another pair 1/4 mile apart. There is an
ensemble
> of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
> THere is a 13 mile gap between these two ensembles.I am suspicious of
a
> particularly high incidence in athletes or athletically active
> individuals, although I recognize we are becoming a more active
> society.Anyone have any observations or concerns to offer to this
> discussion?Bernie
> >
> >
> >
> >
> >
> >
> > [Non-text portions of this message have been removed]
> >
>
>
>
>
>
> __________ Information from ESET NOD32 Antivirus, version of virus
signature database 3329 (20080805) __________
>
> The message was checked by ESET NOD32 Antivirus.
>
> http://www.eset.com
>
>
> [Non-text portions of this message have been removed]
>




[Non-text portions of this message have been removed]

Hi,
    My name is Fawad and I am a Pakistani, I lost my younger brother (Umar)
to ewings sarcoma of pelvic bone in Feb 2004. Although we don't have matching
facilities as western countries have but still i think my brother got the best
care & possible treatement that existed at that time in one of the only true
cancer research hospitals of Pakistan called Shaukat Khanum Cancer Hospital &
Research Center in Lahore (second largest city of  Pakistan).
 
I was very active member of this web site once my brother was under treatment,
of late i have been a laid back kind of a member, still i read e-mails on this
site and the latest one  about cluster of sarcoma interested me alot.  My
brother was not the only one to have had cancer in the family, one of my aunt
(from my father's side) also passed away due to tumour in 1991 (13 years before
my brother).  Her tumour type could not be diagnosed
due to limited facilities available at that time but she had some kind of cancer
above the pelvic region (gynae kind).  The surprising thing is that my aunt
(being un-married) lived in our house for a long time and even till her death
(she was rushed to the hospital by my family where she was pronounced dead). 
 
I don't know how much that is of significant to your research but i still
thought i must share whatever info I had & may contribute to combat this dreaded
disease.  I will also mention about a friends family who have had atleast 2 or
3 deaths in the family due to cancer,  The type of cancer could not be
diagnosed due to limited facilities at that time otherwise this information
could have been more helpful.
 
                                        \
                                        \
             Fawad from Pakistan

--- On Tue, 5/8/08, patricia smith <patriciasmith@...> wrote:

From: patricia smith <patriciasmith@...>
Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
To: ewingssarcoma@yahoogroups.com
Date: Tuesday, 5 August, 2008, 9:51 PM






Hi

I wonder could you post the information, I live in the republic of ireland and
we have a population of 3500,000million
yet where I live and near by three teenagers at the same time were diagnosed
with ewings sarcoma.
two sat beside one another in the same school.
my daughter Krystle died of ewings sarcoma at aged 18 years we live 10 miles
away.
I am interested in clusters and I am a member of The bone cancer research trust
www.bonecancerresea rch.org.uk
I got a lot of data from ireland england scotland and wales and we seem to have
a lot for a small population.
there is very little research in this area.

regards
patricia
ireland

----- Original Message -----
From: bjyoung716
To: ewingssarcoma@ yahoogroups. com
Sent: Tuesday, August 05, 2008 9:13 AM
Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster

Scott

Thank you for your comments. I have just posted three files on this
blog (which I think are visible only to members) which answer most of
the points you raise. They are dated and are best read in chronological
order; they seem to be listed with most recent on top.

I would only add that diagnosis is often delayed, which is of particular
concern for athletes who are used to playing through pain. Our medical
institutions are world class when it comes to confirming a diagnosis and
treating the disease. At the local level things are more ordinary.

This cluster is unique to Cape Cod. There does not seem to be a
dramatic elevation in Ewing's anywhere else in New England. It is 67%
more severe than the Woburn Leukemia cluster documented the movie "A
Civil Action."

I don't know if EMR from our high powered radar station is the cause,
but there are enough reasons to be concerned, and the research
surrounding it has been pathetically poor. If anyone is still
interested after reading these files, I have a 23 page letter of
comments on a recent Environmental Impact Statement I can post.

Bernie

--- In ewingssarcoma@ yahoogroups. com, Scott and Bernice Alcott
<scottbernice@ ...> wrote:
>
>
> Hi Bernie,
>
> I'm a Ewing's patient and an American living in Belgium (just 10
million people) and have been anecdotally surprised at the number of
cases just known to me arising in this small country. Turns out the
nephew of a close work colleague also has ewing's, odd. So I started
wondering about "clusters" too. After looking into it all, now I'm not
so sure about the anecdotal math I was doing.
>
> In your case, Ewing's should appear much more often in the cape anyway
versus the general poulation. Are you controlling for that? Ewing's is a
white person's disease (it shows up 9x more often in white people) and
the cape has 80% fewer "non-whites" then the general population. Ewing's
overwhelmingly clusters in teens 15-19. I don't know if the incidents
you count on the cape include the summer/second home population which
may statistically over-index heavily on families with kids versus the
general population? Last, I've read that Ewing's is often discovered
"more" in places with access to top teaching hospitals and places that
do great pathology while other locations fail to accurately subclassify
tumors as Ewings (they think they are just general sarcomas or
osteo-sarcoma, etc.). The cape has access to some of the finest doctors,
institutions and teaching hospitals in the world. Maybe kids who get
painful lumps on the cape get to Boston and correctly diagnosed in that
area more than kids in other places? I don't know. I just think it's
hard to control for all of this and accurately assess things. Ewing's is
so small and has so many correlations (age, race, diagnostic variance)
that there is huge statistical "standard error" in the data. Given all
that, I lost confidence in my ability to extrapolate the meaning of
variance from 10 cases when there should have 4. Numbers are just too
small. In my case, Belgium is VERY white and it's a world leader in
analysis and pathology. I'm not so sure about anything any more!
>
> Scott
>
>
>
>
>
>
>
> To: ewingssarcoma@ ...: no_reply@... : Tue, 5 Aug 2008 04:39:23
+0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
>
>
>
>
> Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with a
standardized incidence ratio of 3.84 (Massachusetts Department of Public
Health figure)or 6.67 (my figure). We should see one case every 6.7
years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and one in
2005. There are cses in 1996 and 1996. There are also adult cases. A
pair were diagnosed the same day; the 2 in 2004 the same month. A pair
are 1.75 miles apart; another pair 1/4 mile apart. There is an ensemble
of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
THere is a 13 mile gap between these two ensembles.I am suspicious of a
particularly high incidence in athletes or athletically active
individuals, although I recognize we are becoming a more active
society.Anyone have any observations or concerns to offer to this
discussion?Bernie
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

__________ Information from ESET NOD32 Antivirus, version of virus signature
database 3329 (20080805) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset. com

[Non-text portions of this message have been removed]















Send instant messages to your online friends http://uk.messenger.yahoo.com

[Non-text portions of this message have been removed]

Hi

I wonder could you post the information, I live in the republic of ireland and
we have a population of 3500,000million
yet where I live and near by three teenagers at the same time were diagnosed
with ewings sarcoma.
two sat beside one another in the same school.
my daughter Krystle died of ewings sarcoma at aged 18 years we live 10 miles
away.
I am interested in clusters and I am a member of The bone cancer research trust
www.bonecancerresearch.org.uk
I got a lot of data from ireland england scotland and wales and we seem to have
a lot for a small population.
there is very little research in this area.

regards
patricia
ireland


   ----- Original Message -----
   From: bjyoung716
   To: ewingssarcoma@yahoogroups.com
   Sent: Tuesday, August 05, 2008 9:13 AM
   Subject: Re: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster



   Scott

   Thank you for your comments. I have just posted three files on this
   blog (which I think are visible only to members) which answer most of
   the points you raise. They are dated and are best read in chronological
   order; they seem to be listed with most recent on top.

   I would only add that diagnosis is often delayed, which is of particular
   concern for athletes who are used to playing through pain. Our medical
   institutions are world class when it comes to confirming a diagnosis and
   treating the disease. At the local level things are more ordinary.

   This cluster is unique to Cape Cod. There does not seem to be a
   dramatic elevation in Ewing's anywhere else in New England. It is 67%
   more severe than the Woburn Leukemia cluster documented the movie "A
   Civil Action."

   I don't know if EMR from our high powered radar station is the cause,
   but there are enough reasons to be concerned, and the research
   surrounding it has been pathetically poor. If anyone is still
   interested after reading these files, I have a 23 page letter of
   comments on a recent Environmental Impact Statement I can post.

   Bernie

   --- In ewingssarcoma@yahoogroups.com, Scott and Bernice Alcott
   <scottbernice@...> wrote:
   >
   >
   > Hi Bernie,
   >
   > I'm a Ewing's patient and an American living in Belgium (just 10
   million people) and have been anecdotally surprised at the number of
   cases just known to me arising in this small country. Turns out the
   nephew of a close work colleague also has ewing's, odd. So I started
   wondering about "clusters" too. After looking into it all, now I'm not
   so sure about the anecdotal math I was doing.
   >
   > In your case, Ewing's should appear much more often in the cape anyway
   versus the general poulation. Are you controlling for that? Ewing's is a
   white person's disease (it shows up 9x more often in white people) and
   the cape has 80% fewer "non-whites" then the general population. Ewing's
   overwhelmingly clusters in teens 15-19. I don't know if the incidents
   you count on the cape include the summer/second home population which
   may statistically over-index heavily on families with kids versus the
   general population? Last, I've read that Ewing's is often discovered
   "more" in places with access to top teaching hospitals and places that
   do great pathology while other locations fail to accurately subclassify
   tumors as Ewings (they think they are just general sarcomas or
   osteo-sarcoma, etc.). The cape has access to some of the finest doctors,
   institutions and teaching hospitals in the world. Maybe kids who get
   painful lumps on the cape get to Boston and correctly diagnosed in that
   area more than kids in other places? I don't know. I just think it's
   hard to control for all of this and accurately assess things. Ewing's is
   so small and has so many correlations (age, race, diagnostic variance)
   that there is huge statistical "standard error" in the data. Given all
   that, I lost confidence in my ability to extrapolate the meaning of
   variance from 10 cases when there should have 4. Numbers are just too
   small. In my case, Belgium is VERY white and it's a world leader in
   analysis and pathology. I'm not so sure about anything any more!
   >
   > Scott
   >
   >
   >
   >
   >
   >
   >
   > To: ewingssarcoma@...: no_reply@...: Tue, 5 Aug 2008 04:39:23
   +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
   >
   >
   >
   >
   > Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with a
   standardized incidence ratio of 3.84 (Massachusetts Department of Public
   Health figure)or 6.67 (my figure). We should see one case every 6.7
   years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and one in
   2005. There are cses in 1996 and 1996. There are also adult cases. A
   pair were diagnosed the same day; the 2 in 2004 the same month. A pair
   are 1.75 miles apart; another pair 1/4 mile apart. There is an ensemble
   of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
   THere is a 13 mile gap between these two ensembles.I am suspicious of a
   particularly high incidence in athletes or athletically active
   individuals, although I recognize we are becoming a more active
   society.Anyone have any observations or concerns to offer to this
   discussion?Bernie
   >
   >
   >
   >
   >
   >
   > [Non-text portions of this message have been removed]
   >





   __________ Information from ESET NOD32 Antivirus, version of virus signature
database 3329 (20080805) __________

   The message was checked by ESET NOD32 Antivirus.

   http://www.eset.com


[Non-text portions of this message have been removed]

Scott

Thank you for your comments.  I have just posted three files on this
blog (which I think are visible only to members) which answer most of
the points you raise.  They are dated and are best read in chronological
order;  they seem to be listed with most recent on top.

I would only add that diagnosis is often delayed, which is of particular
concern for athletes who are used to playing through pain.  Our medical
institutions are world class when it comes to confirming a diagnosis and
treating the disease.  At the local level things are more ordinary.

This cluster is unique to Cape Cod.  There does not seem to be a
dramatic elevation in Ewing's anywhere else in New England.  It is 67%
more severe than the Woburn Leukemia cluster documented the movie "A
Civil Action."

I don't know if EMR from our high powered radar station is the cause,
but there are enough reasons to be concerned, and the research
surrounding it has been pathetically poor.  If anyone is still
interested after reading these files, I have a 23 page letter of
comments on a recent Environmental Impact Statement I can post.

Bernie


--- In ewingssarcoma@yahoogroups.com, Scott and Bernice Alcott
<scottbernice@...> wrote:
>
>
> Hi Bernie,
>
> I'm a Ewing's patient and an American living in Belgium (just 10
million people) and have been anecdotally surprised at the number of
cases just known to me arising in this small country. Turns out the
nephew of a close work colleague also has ewing's, odd. So I started
wondering about "clusters" too. After looking into it all, now I'm not
so sure about the anecdotal math I was doing.
>
> In your case, Ewing's should appear much more often in the cape anyway
versus the general poulation. Are you controlling for that? Ewing's is a
white person's disease (it shows up 9x more often in white people) and
the cape has 80% fewer "non-whites" then the general population. Ewing's
overwhelmingly clusters in teens 15-19. I don't know if the incidents
you count on the cape include the summer/second home population which
may statistically over-index heavily on families with kids versus the
general population? Last, I've read that Ewing's is often discovered
"more" in places with access to top teaching hospitals and places that
do great pathology while other locations fail to accurately subclassify
tumors as Ewings (they think they are just general sarcomas or
osteo-sarcoma, etc.). The cape has access to some of the finest doctors,
institutions and teaching hospitals in the world. Maybe kids who get
painful lumps on the cape get to Boston and correctly diagnosed in that
area more than kids in other places? I don't know. I just think it's
hard to control for all of this and accurately assess things. Ewing's is
so small and has so many correlations (age, race, diagnostic variance)
that there is huge statistical "standard error" in the data. Given all
that, I lost confidence in my ability to extrapolate the meaning of
variance from 10 cases when there should have 4. Numbers are just too
small. In my case, Belgium is VERY white and it's a world leader in
analysis and pathology. I'm not so sure about anything any more!
>
> Scott
>
>
>
>
>
>
>
> To: ewingssarcoma@...: no_reply@...: Tue, 5 Aug 2008 04:39:23
+0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster
>
>
>
>
> Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with a
standardized incidence ratio of 3.84 (Massachusetts Department of Public
Health figure)or 6.67 (my figure). We should see one case every 6.7
years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and one in
2005. There are cses in 1996 and 1996. There are also adult cases. A
pair were diagnosed the same day; the 2 in 2004 the same month. A pair
are 1.75 miles apart; another pair 1/4 mile apart. There is an ensemble
of 3 cases in the Mid-Cape, but most cases are from the Upper Cape.
THere is a 13 mile gap between these two ensembles.I am suspicious of a
particularly high incidence in athletes or athletically active
individuals, although I recognize we are becoming a more active
society.Anyone have any observations or concerns to offer to this
discussion?Bernie
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

Hi Bernie,

I'm a Ewing's patient and an American living in Belgium (just 10 million people)
and have been anecdotally surprised at the number of cases just known to me
arising in this small country. Turns out the nephew of a close work colleague
also has ewing's, odd. So I started wondering about "clusters" too. After
looking into it all, now I'm not so sure about the anecdotal math I was doing.

In your case, Ewing's should appear much more often in the cape anyway versus
the general poulation. Are you controlling for that? Ewing's is a white person's
disease (it shows up 9x more often in white people) and the cape has 80% fewer
"non-whites" then the general population. Ewing's overwhelmingly clusters in
teens 15-19. I don't know if the incidents you count on the cape include the
summer/second home population which may statistically over-index heavily on
families with kids versus the general population? Last, I've read that Ewing's
is often discovered "more" in places with access to top teaching hospitals and
places that do great pathology while other locations fail to accurately
subclassify tumors as Ewings (they think they are just general sarcomas or
osteo-sarcoma, etc.). The cape has access to some of the finest doctors,
institutions and teaching hospitals in the world. Maybe kids who get painful
lumps on the cape get to Boston and correctly diagnosed in that area more than
kids in other places? I don't know. I just think it's hard to control for all of
this and accurately assess things. Ewing's is so small and has so many
correlations (age, race, diagnostic variance) that there is huge statistical
"standard error" in the data. Given all that, I lost confidence in my ability to
extrapolate the meaning of variance from 10 cases when there should have 4.
Numbers are just too small. In my case, Belgium is VERY white and it's a world
leader in analysis and pathology. I'm not so sure about anything any more!

Scott







To: ewingssarcoma@...: no_reply@...: Tue, 5 Aug
2008 04:39:23 +0000Subject: [Ewings Sarcoma] Cape Cod Ewing's Sarcoma Cluster




Friends:Here on Cape Cod we have a cluster of Ewing's sarcoma with a
standardized incidence ratio of 3.84 (Massachusetts Department of Public Health
figure)or 6.67 (my figure). We should see one case every 6.7 years, and had (in
children) 2 in 2002. 3 in 2003, 2 in 2004, and one in 2005. There are cses in
1996 and 1996. There are also adult cases. A pair were diagnosed the same day;
the 2 in 2004 the same month. A pair are 1.75 miles apart; another pair 1/4 mile
apart. There is an ensemble of 3 cases in the Mid-Cape, but most cases are from
the Upper Cape. THere is a 13 mile gap between these two ensembles.I am
suspicious of a particularly high incidence in athletes or athletically active
individuals, although I recognize we are becoming a more active society.Anyone
have any observations or concerns to offer to this discussion?Bernie






[Non-text portions of this message have been removed]

Friends:

Here on Cape Cod we have a cluster of Ewing's sarcoma with a
standardized incidence ratio of 3.84 (Massachusetts Department of
Public Health figure)or 6.67 (my figure).  We should see one case every
6.7 years, and had (in children) 2 in 2002. 3 in 2003, 2 in 2004, and
one in 2005.  There are cses in 1996 and 1996. There are also adult
cases.  A pair were diagnosed the same day; the 2 in 2004 the same
month.  A pair are 1.75 miles apart; another pair 1/4 mile apart.
There is an ensemble of 3 cases in the Mid-Cape, but most cases are
from the Upper Cape.  THere is a 13 mile gap between these two
ensembles.

I am suspicious of a particularly high incidence in athletes or
athletically active individuals, although I recognize we are becoming a
more active society.

Anyone have any observations or concerns to offer to this discussion?

Bernie

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Rachel,

I'm glad to hear your doing well.  JT's tumor was so huge 7.2"x9"x13" we didn't
have alot of choices.  Our doctor said his muscle was so damaged if left alone
it would be dead weight and eventually would need to be amputated anyway.  I was
sad to see this happen to him but when they pathology report cames back it
confrimed the damage and also showed almost 100% tumor kill!  I guess we did the
right thing.  This group is a wonderful place to find info and hear stories of
survirors.  It helps me to know others make it out the other side.  Thank you so
much for sharing your story with us.

Shauna Scott
expecting mircles

-------------- Original message --------------
From: Rachel Hogg <hogra306@...>


Hi there,

I am 25 years old, from New Zealand and had Ewing's in my left femur at
aged 13. I had a year of chemo and 3 months of radio. My tumour did not
bulge outwards but stretched about 15cms inside my femur, so a bone
replacement wasn't an option.

I asked my oncologist recently why my leg was not amputated (the normal
treatment at that time, when bone replacement is not possible) and he said
he just took a big gamble!!

So now I have two healthy legs - my 'bad' one has a little muscle wastage
from radiotherapy and aches a little when I stand for too long, but
otherwise I can run, jump etc no problem. I have no other significant long
term effects.

All the best for your cancer journey - it will challenge and shape you,
and cancer will always be a part of your life. Personally, I'm extremely
grateful for everything I learnt through having cancer, and being involved
in CanTeen NZ (www.canteen.org.nz). Remember to laugh often!

Best wishes, Rachel.



[Non-text portions of this message have been removed]

Hi there,

I am 25 years old, from New Zealand and had Ewing's in my left femur at
aged 13. I had a year of chemo and 3 months of radio. My tumour did not
bulge outwards but stretched about 15cms inside my femur, so a bone
replacement wasn't an option.

I asked my oncologist recently why my leg was not amputated (the normal
treatment at that time, when bone replacement is not possible) and he said
he just took a big gamble!!

So now I have two healthy legs - my 'bad' one has a little muscle wastage
from radiotherapy and aches a little when I stand for too long, but
otherwise I can run, jump etc no problem. I have no other significant long
term effects.

All the best for your cancer journey - it will challenge and shape you,
and cancer will always be a part of your life. Personally, I'm extremely
grateful for everything I learnt through having cancer, and being involved
in CanTeen NZ (www.canteen.org.nz). Remember to laugh often!

Best wishes, Rachel.

Karen,

Thanks for your reply.  It's nice to know I am not alone.  We have a carepage
(JTScott2007) But I must confess I'm not very good at updating it. :(  I guess I
feel I have plenty of time to do that later.  LOL.  I did go to your daughters
site what a beautiful young lady she is!  It sure is amazing what they can
handle.  I had e-mailed a couple of the carepages sites with ewings but I have
never heard back from them.  I'm so glad to have found this group.

Shauna Scott

-------------- Original message --------------
From: "gonikki501" <gonikki501@...>
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Hi,
My 16 year old daughter just finished her treatment for Ewing's
sarcoma. Hers was located in the sacrum. They were not able to operate
due to the location and size of the mass. She had chemo and radiation.
You can find many kids with Ewing's on www.carepages.com and look in
the directory. Put in ewings sarcoma and there are 23 right now that
have a carepage. I have learned so much by talking with other parents
about treatments, side effects, and different medications for the
chemo side effects. It was a life saver!

Also sign in and visit my daughters page the name is nikkiweinberg
If you don't have a page it is easy to start and it helps keep
everyone informed with what's going on without all the phone calls.
Hope this helps and let us know what your page name is!

Karen




[Non-text portions of this message have been removed]

Hi,
My 16 year old daughter just finished her treatment for Ewing's
sarcoma. Hers was located in the sacrum. They were not able to operate
due to the location and size of the mass. She had chemo and radiation.
You can find many kids with Ewing's on www.carepages.com and look in
the directory. Put in ewings sarcoma and there are 23 right now that
have a carepage. I have learned so much by talking with other parents
about treatments, side effects, and different medications for the
chemo side effects. It was a life saver!

Also sign in and visit my daughters page the name is nikkiweinberg
If you don't have a page it is easy to start and it helps keep
everyone informed with what's going on without all the phone calls.
Hope this helps and let us know what your page name is!

Karen