In my last post, in which I discussed new studies that show surveillance and surgery yield pretty much the same survival rates, I wrote, in reference to a trend piece in the NYT which reported more (non-BRCA) women are choosing bilateral mastectomies: "the benefits of bilateral mastectomy for us mutants are well documented." Well, a new study that's attracting a fair amount of attention this week suggests otherwise.
The headline over at MSNBC reads: "Losing breast little help after cancer." The article goes on to say:
Researchers said that in women with breast cancer who also have genetic mutations that make them more susceptible to the disease, women appear to live just as long whether they choose treatment that preserves their breast or have a breast removal, or mastectomy.
Dr. Lori Pierce, a professor of radiation oncology at the University of Michigan, and her colleagues observed 655 breast cancer patients in Australia, Israel, Spain and the United States, all of whom had genetic mutations that gave them a much higher chance of getting the disease. After 15 years, women who had a breast removed had about a 6 percent chance of a cancer relapse, compared with 24 percent of women who kept their breasts. If the latter group added chemotherapy, their risk dropped to about 12 percent.
But when it came to survival, there was almost no difference whether the cancer patients had decided to keep their breast or have it removed. Women who kept their breasts had a survival rate of 87 percent after 15 years, and women who had mastectomies had a survival rate of 89 percent.
The implication is that, even if 1 in 4 women who chose to conserve their breast (or 1 in 8 who chose chemo) experience a relapse, they don't die of it. So, all things considered, even in us mutants, a lumpectomy and chemo is as effective as mastectomy. Surgery, the research suggests, isn't always the best option.
This study arrives at an interesting moment. There has been fascinating discussion on several of the BRCA blogs I follow about our previvor community and its seemingly pro-surgery/anti-surveillance tilt. As the blogger who writes "The Secret Life of a BRCA1 Mutant" commented on my last post: "I really feel like the general public says that surgery is crazy, and the BRCA community says that surveillance is crazy, which puts women in a situation to be criticized whatever they do." And Dee, with her admirable wit and cynicism, wrote on her blog: "I firmly believe, and I will go on believing, that it isn't "crazy" or "irrational" to reject prophylactic surgery in favor of screening....[O]n a philosophical level, I don't want to get to a place where we, as a community of mutant previvors, as it were, accept prophylactic surgery as the "solution" to the BRCA conundrum. " (And this is coming from a woman who's a veteran of the ol' boob chop chop and the nether ladypart removal.) Today, Teri even pondered her pro-surgery stance in a thoughtful blog post: "It may seem to the casual observer that I’m pro-surgery, since I have had a preventative hysterectomy & oopherectomy and a preventative double mastectomy, since learning of my high ovarian and breast cancer risk. Does that make me anti-surveillance? In a way, yes, it does, FOR ME, for my own circumstances – based on my age, my viewpoints, where I stand in life, things I’ve learned about BRCA related cancer and my tendencies to over-think, over-analyze and worry constantly. Do I think increased surveillance is a viable option for other BRCA mutants? Yes I do."
All of this chatter in the blogosphere and the critical mass of studies has me wondering about my own position. Am I pro-surgery? I suppose, by nature of the fact that I've had it, I am. Am I anti-surveillance? Absolutely not. In fact, I admire women who are brave enough to go that route. Surveillance, in many ways, simply wasn't an option for me. I suffer from an anxiety disorder, and I couldn't subject myself a lifetime of quarterly testing and waiting and the crushing fear and panic that attend it. I think surveillance is a fantastic option for the right kind of person. I'm just not the right person.
Which leads me to why I started this blog. When I first learned there was a BRCA mutation in my family and my cousin, 26 at the time, had tested positive for it and was pursuing mastectomies, I thought she was nuts. Cut off your healthy breasts? You've got to be kidding me! Disfigure your body? No thank you! It turns out, six months later, I'd be in a position to make a similar choice. And when it came time to decide what to do -- when it was my body and my future -- her choice didn't seem so radical after all; in fact, it made a lot of sense. But when I began to consider surgery, my cousin M was the only person I knew going down that road. I didn't realize there were support organizations. I didn't know there'd been books written. I felt pretty alone. But I also knew I could be an example. So I started writing here, and I chose to write about surgery because that was my choice, and I hoped my journey and experience could bring solace to others in my position. I've been honest all the way through: I've written about my ambivalence, my fear, my lows, and my highs. But my journey is whole (though still not complete ... I still have a few more years with my overalls before they get the yank) and this blog represents my experience with testing, getting my results, dabbling in surveillance, choosing surgery, having surgery, recovering from surgery, and thriving after surgery. So is this a pro-surgery blog? No. This blog is my story, and I chose surgery. But if I'm not pro-surgery, I'm simply anti-being scared of it. I'd like not to encourage surgery so much as assure you that if that's the road you chose, it's not as bad as you think. If I'm the worst case scenario (a fake-boobed 31 year old), I'm doing OK. And I think that's something that needs to be said. Yes our choices are shitty. Yes surgery is serious. But, if you choose surgery, it doesn't have to be a dark moment; it can be a positive experience.
Surgery isn't the only answer, and research is making the compelling case that there are other equally "good" options (good is in quotation marks because we're talking cancer and treatment here, so none of this is actually good). Sure, some of these studies make me pause and wonder if I've made the right choice. But that's part of the journey, too. Just because I have pretty round fake boobs doesn't mean I wouldn't rather have my old ones back. And I'll probably always miss them and wish there was some way for me to have kept them. But, for me, there wasn't an option. And so I write what I know -- and I hope I don't put any one off who's considering surveillance. I just write the blog I wish I could have read when I first embarked on this expedition into terra incognita. My greatest hope is that my experience can be someone else's map.