Wednesday, August 15, 2012

I’m in the wrong 1%

I attended the American Brain tumor Association’s “Patient & Family Conference” which was held here in Illinois July 27th through 29th

One of the breakout sessions I attended was “Meningiomas, Pituitary and Other Benign Tumors: Update in Treatment, Care and “”Watch and Wait.”
The presenter was Mark Johnson, MD, PhD; Harvard Medical School/Brigham & Women’s Hospital (phew, I get tired just typing all that).

In his presentation, which was as eloquent as it was grounded, my notes, I have this memory of Mr. Johnson stating that 1% of all Americans* have a benign brain tumor.

Now my notes and memory have a reputation for being not always being 100% accurate, so don’t panic. But, then again, I’m panicked; this seems more like an epidemic than a rare yet devastating disease. If the incident rate is 1%, even if much of that 1% is so small and unobtrusive that folks don’t know that they have them, it seems like we as a nation should know more about meningiomas: why we get them, how to prevent getting them and how to cure them. Actually it’d be nice to know more about all that even if it isn’t an epidemic.

I then read the synopsis of an article in the British Journal of Cancer from June 24, 2008 which stated that “In the United States, the incidence rates with similar age-standardisation estimated from figures provided by the Central Brain Tumor Registry of the United States were 1.8 for men and 4.2 per 100000 for women in 2006.”

That incident rate seems more in line with what I remembered, but I still found the discrepancy confusing and, at some level, disturbing.  So I went to the ABTA site which said that “Meningiomas account for about 20% of all primary brain tumors…”

I then checked my notes from Mr. Johnson’s presentation. Yep, I wrote down that he said that meningiomas represent 34.7% of all brain tumors. And, of course, that 34.7% seems awfully close to what I remember it being.

Arghh, I gave up.

In either case, the odds of getting meningioma are a bit like winning the lottery, only it’s a lottery you don’t want to win.

*His statement was probably couched in some smart way, e.g. “it is now believed…” or “we now estimate…” or even “John, please pay closer attention.”

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