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]
>

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