Beyond Survival

On Monday night, I spoke on a panel at an event for women at high risk for breast and ovarian cancer. During the discussion that followed, a certified genetic counselor made a startling claim: she said survival rates for women with BRCA mutations are pretty much the same (in the 90-95% range) whether you chose surgery or surveillance. Upon hearing this, my first thought was to slap my forehead and reprimand myself for making such a stupid stupid stupid choice to remove my breasts. But then I though about it a second and realized I'd still made the right decision. Why? Because survival rates are very different than not-getting-cancer rates. And that's a key difference. I've noticed this fundamental disconnect in a lot of studies and discussion recently, and I think it's worth looking at closer.

First, about that claim. This was the study she was getting her data from. The salient findings are this:

For those BRCA1+
- With no intervention, survival probability by age 70 is 53%
- The most effective single intervention for BRCA1 mutation carriers is prophylactic oopherectomy at age 40, yielding a 15% absolute survival gain
- The combination of prophylactic mastectomy and prophylactic oopherectomy at age 40 improves survival more than any single intervention, yielding 24% survival gain

For those BRCA2+
- With no intervention, survival probability by age 70 is 71%
- The most effective single intervention is prophylactic mastectomy, yielding a 7% survival gain if performed at age 40 years.
- The combination of prophylactic mastectomy and prophylactic oopherectomy at age 40 improves survival more than any single intervention, yielding 11% survival gain

For both
- Prophylactic mastectomy at age 25 instead of age 40 offers minimal incremental benefit (1% to 2%)
- Substituting screening for prophylactic mastectomy yields a similarly minimal decrement in survival (2% to 3%)

Their conclusion was this: "Although prophylactic mastectomy at age 25 plus prophylactic oopherectomy at age 40 years maximizes survival probability, substituting mammography plus MRI screening for PM seems to offer comparable survival."

So that's where she's getting this idea that survival rates are similar. But in order for that to be true, women still need to have an oopherectomy at age 40. So, it's misleading to say no surgery is required because in order to have at least a 90% chance of making it to 70, your ovaries have got to go.

But, if it is true that you can survive until 70 even if you keep your breasts, why am I still sure I've made the right choice (at least for myself)? Because, again, the study doesn't consider the likelihood of getting cancer -- just our likelihood of surviving it. Which is a big difference. Most of the time, having cancer means time-consuming, treacherous treatment. (Recently, however, I've met two young BRCA+ mutation carriers who were diagnosed with DCIS -- essentially stage 0 breast cancer -- through close surveillance, and they did not require chemotherapy. They both, however, chose double mastectomies after their cancer diagnosis. These are cases of close surveillance working; there are many other stories I've heard about women whose cancers were missed, despite assiduous screening.) In most cases, cancer disrupts your life and can have profound effects on career, relationships, and self image. And that's what bothers me about these cold, statistical models (the study I've been discussing is a decision analysis study rather than one based on empiric data): it doesn't take into account issues like quality of life. Sure, from a purely mathematical perspective, I have as much likelihood as someone diagnosed with early stage breast cancer as making it to 70, but will our quality of lives be similar? It's an important question, especially given that the event I spoke at (and where this information was discussed) was called "Survive and Thrive." It's not just about evading death. It's about enjoying life. And I know I'll enjoy mine a lot more knowing that I won't have to face breast cancer.

This issue came up in a different way over on the Well blog of the New York Times. Tara Parker-Pope recently wrote about the trend among women diagnosed with breast cancer to remove both breasts, despite the fact that "cutting off a healthy breast does not improve the odds of survival." (Those are TPP's words, and I'm leaving them as such, because certain people complained that the phrase "cutting off a healthy breast" was misleading, conveying a draconian technique that in no way resembles modern mastectomy and reconstruction. I don't have a problem with the phrase; I write all the time here about chopping and cutting and hacking and everything else.) She writes:

The percentage of women asking to remove both breasts after a cancer diagnosis has more than doubled in recent years. Over all, about 6 percent of women undergoing surgery for breast cancer in 2006 opted for the procedure, formally known as contralateral prophylactic mastectomy. Among women in their 40s who underwent breast cancer surgery, one in 10 opted to have both breasts removed, according to a University of Minnesota study presented last week in St. Louis at the annual meeting of the Society of Surgical Oncology.

So, if it doesn't add any benefit, why are women removing healthy breasts? (It should be noted here that the women discussed in this article are assumed to be non-mutation carriers; benefits of bilateral mastectomy for us mutants are well documented.) Do these women just want to drive up premiums for the rest of us (which was suggested, naturally, by the very sensitive comment trolls that crawl out from under their bridges to make unsubstantiated claims and accusations)? Are they crazy? No. They just don't want to worry about breast cancer. They don't care that it may not improve long term survival rates because they know it definitely does improve long term peace of mind.

And this is something I can relate to. These women felt betrayed by their breasts and opted to remove them altogether; when they got cancer in one breast, both were, pardon the pun, dead to them. And I felt the same way. When I learned I carried the mutation, my breasts ceased being decorative sex organs and became time bombs. I knew I'd rather remove them before I got cancer rather than wait around to remove them after. And I don't think you can quantify that. I feel my quality of life has improved dramatically even since my mastectomy. (I wrote about being happy here.) When I first learned I was a mutation carrier, I heard a medical profession describe BRCA previvors as the equivalent of cancer survivors in remission: both groups of women spend their lives in fear of the cancer either returning or finally catching up to them in the first place. That stuck with me, and it confirmed that surgery was the right choice because I no longer have to crouch in perpetual horror, waiting for their other metaphorical shoe to drop. I'm not sure you can convey that in a statistic. That's why our personal stories and our choices are so important to share.