Thursday, May 14, 2009

Florida-bound

I’m high above the clouds somewhere over Georgia, on my way to Orlando for the FORCE conference. Before we took off, I heard some women a few rows behind me talking about boob MRIs; I know eavesdropping is impolite, but I was heartened to know there are others of my kind on this flight. And that’s what this weekend is about: coming together with people who TOTALLY GET IT. Who don’t look at you like you have a third nipple on your forehead when you talk about wanting to chop of your breasts. Who know what it feels like to be afraid of your own body. And who are so relieved that you understand, too.

It was in this spirit that I read Jessica Queller’s BRCA memoir, Pretty Is What Changes, this week. On the surface, Jessica and I don’t have much in common. She grew up in Manhattan, I grew up in the suburbs off 1-95 somewhere between New York and Washington. She is Jewish, I’m a goy. She has larger knockers, I have ample boobs. She lost her mother to ovarian cancer, my mother is alive and well. She is rich, I am po’. She is a Hollywood screenwriter, I’m a blogger with few readers. She is friends with Calista Flockhart, the most famous guy I know plays guitar with Hanson. She is single, I’m married. She desperately wants to have children, I’m still waiting for my maternal instinct to kick in. And most importantly, she has a different mutation than I do: she is BRCA1+ and I’m BRCA2+.

But despite all of these differences, I was rapt by Jessica’s story because, in the end, it’s mine, too. Despite everything else, Jessica and I are part of a sisterhood, who, due to circumstance, timing, and genetics, have an opportunity to evade our fates; we each got a missive from the future that said one day you will get cancer, and we both decided to cheat our destiny. Jessica differs from me in another major way: she was initially anti-PBM (that’s prophylactic bilateral mastectomy, for all my non-BRCA readers) whereas from the first I was sold on surgery. But we ended up in the same place. What’s remarkable about technology and medicine, and how fast both move, is that Jessica, who went under the knife less than three years ago, was advised to have her nipples removed; every doctor I’ve met with now considers nipple-sparing surgeries the standard procedure. Who know what doctors will be advising three years from my surgery date? Will I wish I had waited? No. To paraphrase a horrible person, you go into surgery with the technology available now, not the technology that you want.

Jessica’s book raised an interesting question that I hadn't spent much time considering: what if people don’t want to learn their genetic fate? With this in mind, the BRCA process then involves two rather controversial choices: deciding to get tested and then deciding what to do with the knowledge those tests produce. I never considered the first decision much of a decision at all: I got an email from my father (on which he copied my soon-to-be-husband) last summer saying that the BRCA mutation had been found in the family and that he would hound me (and would enlist G to pester me, too) until I took the test. But even if my father hadn’t presented it as such a non-choice, I would have definitely taken the test. Unlike Jessica, who was so unconcerned about learning her status that she put the test off for years and then, when she finally took it, waited two months to get the results, my anxiety levels skyrocketed the moment I read my father’s message about our cancer history; many people say their lives changed when they learned their status, but mine changed with that email.

At one point, Jessica described awareness of your BRCA status as a “burden of knowledge.” This nearly caused me to fling the book into the trash (the offensive phrase appears on page 12, so I would have missed a lot, including her eventual change of heart about this). I was enraged to think that anyone could consider this gift (the forewarning, not the mutation) as anything but providential. Knowing your BRCA status allows you to make informed choices about your future, a future that otherwise could be stolen from you by cancer. But there are many people out there, I realize, that find the concept of crystal ball-gazing unethical, irreligious, and irresponsible. And there are even more people out there who think elective prophylactic surgery is just as reprehensible. They are entitled to their opinion, just as I’m entitled to mine. But to me, BRCA isn’t a burden, nor is it a blessing. It’s an opportunity. Statistically, I may have a very rare condition, but I’m in the majority when it comes to my approach to risk management: 70% of BRCA carriers opt for surgery. When I think about that number, I feel less alone. And when I read Jessica’s story, I felt like I was reading my own thoughts.

We should be on the ground soon. Signing off from 30,000 feet.

6 comments:

  1. In regard to that 70% stat you posted... that represents the number of BRCA+ women who believe PBM gives the greatest risk reduction, not the number of BRCA+ women who have chosen to have the surgery. There is a very long, torturous journey between those points for some people, and knowing something intellectually and acting on it are two very different things.

    ReplyDelete
  2. Thanks for clarifying that. I stand corrected. Are there any reliable statistics that calculate the number of BRCA+ women who undergo risk reduction surgeries?

    ReplyDelete
  3. I haven't seen anything official, but anecdotally I've heard less than 50%.

    ReplyDelete
  4. P.S. that was re: PBM. I think the number of women who have RRSO (ooph) is higher, definitely above 50%.

    ReplyDelete
  5. (sorry to spam your comments... )

    If you read that article further, it says 81% of that 70% went on to have PBM, and 80% of 70% is 56%.

    So there you have it. A little over 50%, not under.

    ReplyDelete
  6. It's a fascinating discussion, and I appreciate your feedback. I wonder how much that number changes over time. As a young previvor, I could chose surveillance now but opt for surgery in, say, ten years. This is such a new situation to find ourselves in (ie: the test for the mutation is less than 15 years old) that it will be very interesting to see how certain approaches to risk reduction become more or less standard. Thanks again for your comments!

    ReplyDelete