I’m in the wrong 1%

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

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 100 000 for women in 2006.” http://www.nature.com/bjc/journal/v99/n1/full/6604438a.html#bib5

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.”