Thursday, March 25, 2010

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.


  1. Steph- Regardless you made the right choice. No one wants to be faced with cancer even though I have and I am scheduled to have a bilateral mastectomy on Tuesday 3/30/10 to prevent it from ever coming back to invade my life. I know I am making the right decision. I love your blog and you have truly helped me through this horrible challenge I have ahead of me in the days to come. Your an inspiration for me.

  2. With no BRCA mutations myself (tho my mother has breast cancer so there may still be an as yet unknown genetic link) understandably as I go through chemo now I wish I'd had ANY means by which to discover cancer was a possibility so I could have tried to prevent it. Yet I am also one of those women who chose not to have a bilateral mastectomy, and I even fought VERY hard to do nipple sparing despite several docs being against it. I wanted to preserve as much of my "natural" breast as possible for purely psycological reasons, knowing myself and feeling that was what was best. I know I made the right decision for me at that time. Had I been BRCA positive I'm not sure what I would have done. After learning from so many brave young previvors like you I'd like to think that when I was finished breast feeding my now 3 yo son I would have chosen a PBM. But would I have found the blogs and websites of savvy young women like you, Steph, to help educate me? I don't know. Will I go back later and have a second mastectomy now that I see things a little that I've experienced both the hell of cancer treatment AND of reconstruction probs? Maybe.

    I guess it's hard to know what we'd do or feel if we'd chosen a different path. I think we do the best we can with what info and instincts we have at a given time. I think ultimately we all make the right choices based on what we know of ourselves and our health.

    But I do know that by sharing your journey you have, one way or the other, contributed to helping so many women of different paths find their way to making their own best choices. You always are so sensitive and yet ultimately directly honest that you blow me away :)

    Great post as always!

  3. I think the good news is that yes, we can survive whether we choose surgery or surveilance. And I think it is great that we can make our own choices and that there is so much information at our disposal now. I am happy to say that no one in my family has died from breast cancer. 2 did end up dying from other cancers but 2 are still kicking it (10 and 30 year survivors). I am leaning towards the pbm so I can avoid harsh chemicals and other side effects of the disease.

  4. I think you are absolutely right, Janine. It's all about choices. And nothing illustrates that better than Stephanie and Kayleigh's comments. Stephanie is choosing a double mastectomy (she would be among those women described in the NYT's article) while Kayleigh chose only to remove the affected breast (and to keep her nipple too). And that's what's so great about sharing stories -- they tell us so much more than the statistical models can. Those tools might tell us what we *should* do, but they can't dissuade us from what we *want* to do. And when it comes down to it, these choices are deeply personal and individual. Each woman must make a decision she is comfortable with because in the end, she's the one who has to live with the consequences. I'm happy with the choice I made, just as Stephanie and Kayliegh and Janine are (or will be) too. Viva la difference!

  5. I think this just goes to show that everyone makes different choices based on her own circumstances, and on decision or another is not decidedly right -- it's only right for the individual. I don't want cancer and I will probably get surgery in the next few years, but I don't feel in a hurry to do so. Surveillance is working well for me now, and I know that if I do get cancer before getting surgery, I will have a very high chance of survival. Even though the earliest diagnosis in my family was at age 31, I have much more tools at my disposal than my aunt had at her diagnosis, which was at a later stage. Not everyone can deal with surveillance, and that's okay. Not everyone can deal with surgery, either, and that's okay, too. Honestly, I think it's a really positive thing that this study has shown comparable survival rates, because it's telling women that whatever they choose to do regarding their breasts is a-okay, which is not a message that women often get. 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.

  6. 文章是心情的反應~~祝妳天天寫的都是讓人開心的好文章哦!! ........................................

  7. "Because, again, the study doesn't consider the likelihood of getting cancer -- just our likelihood of surviving it."

    "Each woman must make a decision she is comfortable with because in the end, she's the one who has to live with the consequences."

    That says it all for me. We made the right decision because it was what we felt we had to do to prevent cancer as much as we could. Rest easy, babe. I got your back.

  8. Thanks for this post! On a daily basis I counsel and listen to women who are undergoing treatment for breast cancer. As their health provider I can advise them to take certain medications to prevent nausea, tell them to ask for help at home, encourage them to drink fluid, wash their hands, but it is the emotional journey that these women go on that brings me to tears at times, and has guided me in my own decisions about my own health.

    I do not want breast cancer!! These women, especially young ones, struggle with their own identity, balancing family and self, work, friends, intimacy, self confidence, body image issues, anxiety, depression, I can go on...

    Yes, they get breast cancer and they live until they are 70 or more, but they have the battle scars to show it. Now, my own mother had breast cancer and is a healthy 62 year old, who has been lucky to continue to live a good life. But she is affected by her breast cancer, she continues to hate her follow up exams and scans, she suffers from anxiety, but that may be related to a lot of things, she also grew up without a mom because she died of breast cancer at 38 years old.

    So you are right, I would rather live until I'm 70 without experiencing breast cancer than the alternative. I would rather be able to give my kids the best guarantee that I know to remain healthy for them so they do not have to grow up without me, so I can go about my life without the feelings of being my own worst enemy!

    I certainly know the fears will always remain, but I will have done what is the best option at this point in time.

    Thanks so much for this post!

  9. I think you pretty much summed it up perfectly for me - I did understand from the jump that strictly speaking, I could have the oophorectomy and keep the boobs and live just as long. But living wasn't enough from me - I never wanted the experience of HAVING BREAST CANCER, even if I would, most likely "survive it". Forget the possibility of chemo, rads and the rest, I just didn't want to check the "cancer" box every time I went to a new doctor or to a new massuese, for that matter. Want to get life insurance? Sorry, CANCER. And on and on. Once you've had cancer, your life is never the same.