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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