Wednesday, October 7, 2009

the math is broken

I love math. It was my favorite class in high school. Maybe the only class I really liked and usually the only class I consistently did the homework for. I like to read but I hate nonfiction so I usually did not open the textbooks I would drag home every night. Although I have not been able to relax with a novel since June. All I read now are cancer books, brca blogs, message boards and research articles. I bring magazines with me to my appts but I can only glance through the pics. My mind is on hyper drive and can't settle down on trivial matters.

Anyway, back to math. This brca stuff is full of statistics. If I take tamoxifen I could reduce my risk of second bc by 50%. Likewise if I took out my ovaries. But if you do both it will not add up to 100%. I had somewhere between 50-80% chance of getting bc but as my genetic counselor pointed out, I have 100% chance since I did get it. Men with brca2+ have 6% chance of bc and 20% chance of prostate cancer. This is where the math starts messing with me. Only 6%, yet both my father and grandfather got it. And my gf got prostate as well. I have a 12% chance of a second bc within the next 5 years and 30% over my life. My aunt had a second bc within months of finding her first. It was in the opposite breast so not a recurrence of the first bc. I just can't put any faith in the stats. Look at the Boston Red Sox. If one put their faith in stats, they never would have beaten the Yankees that one glorious fall. Not that I am a Red Sox fan, just hate the Yanks! Go A's.

So if I can't trust the math or my angel, then how do I decide? Everyone keeps telling me to go with my gut. But I don't like what my gut tells me. I have been trying to silence the gut for the last few weeks. My brain agrees with my gut but my heart is pleading its case. The heart says flee this place. Leave Utah. Go somewhere else and maybe the gut and brain won't find you. It worked before. I fled to NY for two weeks after my last surgery and it only took a couple of days for sleep to find me. But that was before I gained all my knowledge. My fear is still very strong but my brain is pushing its way to the top. There are a lot of things I don't want. Like lymphedema, countless biopsys (turns out I have dense breasts which can cause confusion), waiting and waiting for yet another test result. And I don't want more cancer. I asked tod, would my second cancer just be another baby cancer and she said usually it will be aggressive. That's not something I look forward to. I asked if something better was in the works. This is something I have asked each tod. No one has said yes yet. Maybe in the future. Maybe in 15 years they won't need surgery. That's good news for the kids. That makes me happy and hopeful for them. But I can't wait that long. I couldn't face myself in the mirror if something bad happened to me because I was too scared to face it.

I am going to cut the bitches off. I will start the ball rolling. It will take some work with the insurance and logistics but I am moving forward. I don't feel relief just yet. I am sad. But I will be happy.


  1. I love you, Sissie (as Maddie would say).

  2. let's flee together when all is said and done. feel free in your decision..I am happy now for you, I don't want you to have any more cancer either. I love and miss you Janine.

  3. We love you!
    Katie Brian Em and Maddie

  4. I agree with the math stuff. I've always said 'never trust statistics' - it's so true. My Myriad test brca1 test results spelled it out for me that I have an 87% change of breast cancer and 44% of ovarian cancer (not anymore suckers!! lol) - but I know these aren't accurate odds for MY family. It's been ovarian cancer all over the place, breast cancer didn't even present itself until my aunt (70 something) just had a preventative mastectomy and her path report came back pre-cancerous. Just shows how much more work needs to be done in the genetic cancer field..


  5. Great point about the stats, particularly the incongruity of 6% prostate cancer and its prevalance in your family. I have been madly reading about stats lately too and it's frustrating. Clearly, there are differences unique to our family, but the numbers you see (like on the Myraid reports) are so generic. I'd rather stick to the facts of my family too, knowing that genetic risk studies are still relatively new.