Tuesday, November 16, 2010

Epidemiology: Why You Don't Care About Broad Trends Until You're Cured

Unfortunately, if you're reading this, you're in a small subgroup of breast cancer -- lets face it -- survivors. There are hardly ANY recommendations good for the majority which are good for you, PLUS hardly any of the options have been tested in clinical trials on your risk group.

More soon, but this is part of the reason breastcancer.org, cancer.org, and even the majority of Susan Love, Susan Komen, and ... etc. uselessness. Susan Love's site does have lots of geeky research! but the search engine for it is very 1992: it is impossible to data mine with it.

If you feel moved by the knowledge you acquire and the people you meet while getting cured, by all means get involved in altering broad, worldwide trends. But I personally am going to ignore them until I'm d/d free, because the stats are misleading in my case. For example, "we always use tamoxifen on hormone-receptive cancers" and "tamoxifen has little impact on recurrence and survivability in even hormone-receptive cancers in premenopausal women, and the long term effects -- at 40-50 years survival -- simply haven't been studied" and "hormone therapies have been used for 100 years" -- oh really? Before World War I they were routinely yanking out healthy ovaries? I need to represent myself first.

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