Monday, March 29, 2010

Extra! Extra! Studies Suggest Surgery Not Always the Best Option, Young Boobless Woman Thinks She May Need to Lay Off the Studies


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.

6 comments:

  1. Excellent Post! I have also chosen surgery and am in the reconstruction stage right now. (Tissue expanders are NOT fun!) Like you, I am a cerebral type and undergoing surveillance for the rest of my life would have meant too much worry and dwelling on my status. I know what kind of person I am and couldn't NOT think about it. I'm 46 and finished having babies so that wasn't a concern. I'm in the middle of the toughest year of my life (testing, deciding, oopherectomy, bilateral mastectomy, reconstruction) but I'm trading it off for the rest of my life with brca1+ put on the back burner.

    My soon to be 21 year old daughter has not yet been tested and naturally I'm praying for a negative status for her but should she test positive I will support her decisions regardless of what they are. Due to her young age, surveillance will definitely be part of her journey for a number of years, I'm sure.

    So, while I chose surgery, I still stand firm in proclaiming that there are options for all women and it's a personal choice. I admire and support women regardless of what their choice may be. Surgery was the right choice for ME.

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  2. Excellent Post! I have also chosen surgery and am in the reconstruction stage right now. (Tissue expanders are NOT fun!) Like you, I am a cerebral type and undergoing surveillance for the rest of my life would have meant too much worry and dwelling on my status. I know what kind of person I am and couldn't NOT think about it. I'm 46 and finished having babies so that wasn't a concern. I'm in the middle of the toughest year of my life (testing, deciding, oopherectomy, bilateral mastectomy, reconstruction) but I'm trading it off for the rest of my life with brca1+ put on the back burner.

    My soon to be 21 year old daughter has not yet been tested and naturally I'm praying for a negative status for her but should she test positive I will support her decisions regardless of what they are. Due to her young age, surveillance will definitely be part of her journey for a number of years, I'm sure.

    So, while I chose surgery, I still stand firm in proclaiming that there are options for all women and it's a personal choice. I admire and support women regardless of what their choice may be. Surgery was the right choice for ME.

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  3. Hi Steph,

    I would first of all like to say thank you. I am BRCA1+ and have my PBM scheduled for April 23. I have recently started reading your blog...I have visited the FORCE site often and saw your postings with your blog address added. I cannot tell you how immensely helpful your blog is. I am so sorry that you have to be in this position, however, sharing your story for others to have a better understanding of the whole journey is amazing.

    It is so difficult when it comes to the what is "right" decision for BRCA+ carriers. Each individual has to understand what choice they can live with. I just started a blog out of encouragement from my husband and sister...hopefully others can gain insight from my experiences/choices as well. Surgery is my choice. But on the other side of things, my sister who is also BRCA1+ has chosen surveillance and I support her decision 110%. As you have stated, none of our choices are "good", they're all shitty. So we each do the best we can with the information we have about ourselves, our families and the research.

    Sorry for rambling. I just admire you so much and have really appreciated your postings. Would it be alright with you if I put a link to your blog on my blog page? If you would like to see mine it is whenthegenesdontfit.blogspot.com. You are an amazing woman - thank you!

    Tracy

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  4. Hey Steph - it sure does seem to be something on a lot of our minds lately, doesn't it? It's like I said yesterday, it's not so much that I'm pro-surgery, as it is that I'm anti breast & ovarian cancer. Our options right now are so limited that for it didn't feel like much of a choice, but a better alternative than waiting around for cancer to strike. We all have a different path to walk though, and both can be 'right' or 'wrong' depending on who we are, and our own viewpoints and circumstances..

    Teri

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  5. Thanks so much for your comments and kind sentiments, guys. Reading that my words have helped you makes it all worth it. I think it's true that, within the BRCA+ community there is a pro-surgery slant, and I think it's true that in the real world, surgery is considered radical and reactionary. I began writing this blog because I was so ensconced in that hostile anti-surgery world that I wanted a forum to express myself and my reasons for pursuing surgery; I wanted to write about choosing to do the thing I initially feared the most. So as this blog became the story of my journey to surgery, it also became a place where women facing the same tough decisions could find comfort. Thanks for reading, and I'm so glad to hear that my posts have meant as much to you reading them as they have to me writing them. Much love to all.

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  6. Okay, first -- survival after 15 years is NOT enough time if we're considering long-term survival. I'm sure you realize that, I'm just surprised that they really think this is relevant when we're talking about people who get breast cancer in their 30s and 40s. Of course, more time is needed before studies on long-term survival can be conducted (though one simulation, which you mentioned in your last post, did show similar rates of long-term survival if oophorectomy was included -- but this wasn't the study in the article!), but obviously news organizations suck at headlines.

    Thank you for sharing your story here. I don't think it really matters so much if we are "pro" or "anti" anything. I'm "pro-knowledge" and "anti-cancer." Nothing more, nothing less. The most important thing is that our individual stories are told. The greater diversity of voices in the community, the better of we are at showing that we are a group of people making the most out of a crappy situation.

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