Wednesday, January 27, 2010

Risk

I've been thinking a lot about how weird I am... I am a statistical anomaly, bigtime. A minority within a minority within a minority. I don't have a math brain, so forgive the inaccuracies of the proportions of these graphics... but you get the general idea:









See, it was highly unlikely that I'd have cancer...
...but I do.
It was highly unlikely that that cancer would be mucinous...
...but it is.
It's highly unlikely that with mucinous cancer, I'd be so young...
...but I am.

I am that tiny, tiny purple dot up there, so unlikely to even exist. Can you even see it?

Sometimes this makes me throw up my hands and laugh. Because since when have I EVER been "normal"?!? I am the lesbian pagan feminist circus freak diagnosed with the old lady cancer at the age of 30! OF COURSE!

Other times, it scares me, because I have absolutely no faith in predictions and statistics anymore. They are meaningless to me. Like when K said, moments before surgery as I was signing the consent form, "There is a 5% chance of lymphedema as a result of surgery," that doesn't reassure me...I am not thinking, "Whew, there's a 95% chance I won't get lymphedema," not when that surgeon that biopsied me was like "I'm 99% sure you don't have cancer!" Now every time I feel the slightest twinge in my arm, I'm thinking OMG HELP IT'S LYMPHEDEMA!

This is why making decisions about which treatments to do next (e.g. mastectomy or 6 weeks radiation??) feels so impossible to me - what do I base my decisions ON?? Doctors' guesses and meaningless predictions? "By doing X, you'll reduce your absolute risk by Y%, and your relative risk by Z%..." SO WHAT?? Are those figures based upon studies done on 30-year-old women with mucinous breast cancer? No! BECAUSE I AM THE WEIRDO WHO DOES NOT EVER FIT IN THE NORMAL BOXES. I'm actually surprised the hospital hasn't tried to study me yet, considering they are a teaching/research hospital....

5 comments:

  1. Aside from the fact that you have ongoing conversations about all that you've written ... I have to comment with a smile that your graphs look remarkably like breasts!!! ;-)
    xoxoxoxoxoxoMom

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  2. Um, I meant graphics. !!

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  3. And Happy Birthday, my love! xoxoxoxoxoxo

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  4. Ugh! Usually, I would say weird if wonderful. NOT now! All my love to you.

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  5. i love these images (and your sense of humor in them :)). and it's so true. when you're already a statistical anomaly, what do the statistics even mean anymore? anything could happen. in cases like these, western medicine and medical research seems so disconnected from our real, personal experiences. at the same time, they ARE based on a lot of data and research. i want to believe these kinds of numbers can be of some use to us as we make hard decisions. other thank making us feel like freaks ;).

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