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]
> >
>
>
>
>
>
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