More on Mastectomy, Accurate Information and Treatment Choices

I’ve been camping since last Saturday, so wasn’t here when my story on contralateral mastectomy was published in the New York Times.  In its aftermath, I’ve gotten positive feedback from researchers, physicians and advocates, including Karuna Jagger of Breast Cancer Action, who wrote this follow-up; Gayle Sulik, author of Pink Ribbon Blues and founder of the Breast Cancer Consortium; and Susan Love, author of Susan Love’s Breast Book (bible for the newly diagnosed) and medical director of Dr. Susan Love Research Foundation. The blogger who goes by The Risky Body also wrote two really thoughtful responses  aimed at–though not exclusively for–the community of women with a known BRCA mutation.

I’ve  received email from individual women in the throes of making their initial treatment decisions; from women who chose CPM and later were diagnosed with metastatic disease; and from those for whom the decision to remove the healthy breast went horribly, painfully awry (reminding me that we tend to underplay the risks and potential complications of surgery.

I’ve also read online the articles in response to the piece by those who chose CPM and are happy with that decision or who want to explain their point of view. Like this one on Slate, and this one on Forbes. So for them, in particular, there are some things that I’d like to clarify. First of all, I want to reiterate that the data on survival does not apply to those who carry a genetic predisposition to breast cancer (such as a BRCA mutation) or those with a strong family history of the disease. It applies to women who were at average risk of contracting breast cancer and are at average risk of contracting a second cancer. The vast majority of women choosing CPM fall into this category, by the way.

There were so many things I couldn’t fit into a 1200 word article–had I been able to write something longer I could’ve been far more comprehensive and nuanced. That said, I made the points that were most important to me to make. Two interesting facts I couldn’t fit in: one, this trend towards CPM has happened even as treatment reduces the likelihood of contracting a second cancer. I find that interesting. Also, this is an American phenomenon: according to Todd Tuttle, chief of surgical oncology at the University of Minnesota (Ski-U-Mah!) there was not a similar uptick of CPM in Europe over the time period studied. It’s worth noting that there is also no greater incidence of contralateral cancer or death from the disease there over that time period. Nor do European women seem to choose CPM for cosmetic or other reasons cited by American women.

Why the difference? One reason, according to researchers, is the rise in use of MRIs, which have an inordinate rate of false positives, subjecting women to the physical and psychological stress of unnecessary biopsies. According to researchers at Sloan-Kettering:

Women who had a breast MRI as part of their preoperative evaluation were three times more likely to choose CPM,” she says. MRIs may detect additional areas of breast cancer that are missed by mammography, but the rate of false positives is quite high. “If the MRI finds something that looks suspicious, many women say, ‘I would rather just have a double mastectomy than go through the process of having biopsies on my other breast.’

Another reason, is that choices are not made in a vacuum. They are made in a cultural, political and economic context.  As I wrote in my New York Times Magazine piece last year (and Karuna Jaggar wrote this week, in the piece linked above), pink ribbon culture has inadvertently stoked a fear of breast cancer so that women consistently over-estimate their risk of disease. In the end, I believe, that over-estimation comes at the expense of effective advocacy.

My goal with the CPM piece, as with all my pieces on breast cancer, was to report solid information that has not been adequately reported in mainstream media, information that can reduce harm—such as over-screening and over-diagnosis—and tremind people of what is important about breast cancer advocacy: reducing the number of women who are harmed by and especially who die of breast cancer. To my mind that means focusing on potential environmental factors involved in the disease; focusing on prevention; focusing on less toxic and more effective treatment; understanding DCIS and, in particular, understanding the mechanisms of metastatic disease. One concern I had about the rise of CPM–and the statistics showing the rise was due to over-estimation of its benefits and over-estimation of the risk of a second cancer– was that by giving women a false sense of security, misleading them into thinking they were improving their odds at survival, it would detract attention and resources from where they need to go. I can’t imagine that anyone, including those who chose CPM for some other reason, would think that was a good idea. I can’t believe anyone, including those who chose CPM for other reasons, would want women to choose it because they are misunderstanding risk and benefit. I can’t imagine anyone including those who chose CPM for other reasons, would want women choosing CPM because they think it will save their lives when multiple studies–and this new one in particular–have shown that it won’t.

The research on CPM is clear, in multiple studies, that many women pursue it both because they over-estimate their risk of a second primary and because they believe CPM will be life-saving (I’ll put some links at the end of this post). Again, I would think that regardless of why you personally chose CPM you would believe it is important that newly diagnosed women make their decisions based on accurate information. In Todd Tuttle’s research, cited in my New York Times Magazine story, women estimated their chances of contralateral cancer to be 30% over 10 years when it was actually less than 5%. Maybe the women who have written in response to my piece that they chose CPM for other reasons already knew that, but obviously many women do not. Do you really want them making decisions about surgery based on such misinformation? That scares me. And it’s wrong from a public health perspective.

From that perspective women should understand, loud and clear, that CPM is not, for a woman at average risk of cancer, a medical necessity. As Steven Katz said to me during our interview, conversations with the newly diagnosed should start with, “CPM is a futile procedure in terms of prolonging life.” Then– again from a public health perspective–we can have a discussion about whether surgery should be the frontline treatment for those with intense fear or anxiety about cancer even when that surgery has no medical basis.

A number of women have written to me and said they had CPM for cosmetic reasons. That’s a choice, certainly, as any cosmetic procedure is a choice. In making it, you certainly have to balance the risks of surgery with other factors. Personally, I’d like newly diagnosed women to know that I don’t feel at all “unbalanced” with one fake breast and one real breast. My breasts are not asymmetrical, or no more asymmetrical than the average woman’s or than they were before after 50+ years of wear and tear. With my clothes on—including scoop necks and low-cut bathing suits–you can’t tell at all. Naked, my breasts look about as good as they did before, though the reconstructed breast has more scars both from where the tumors were removed and because in the last four months I’ve had two biopsies on that side (both turned out to be–guess what?–not one but TWO rare surgical complications….). Also, again in the spirit of full disclosure, my previous radiation compromised the nipple-sparing surgery, so while I have a nipple it doesn’t look as good as it might or like the one on the other side. CPM wouldn’t have changed that. But if those things weren’t true, you’d have a hard time visually distinguishing the fake from the real. Internally (i.e., to me) they do feel different. My natural breast feel natural. My fake one feels like I’m wearing a tight bra all the time that I can’t take off. Women who are considering implants (I have a DIEP-flap because my previous radiation makes implants difficult) can certainly wait to have a second breast removed and reconstructed to see how they feel about it, even though it does mean further surgery. But, really, there’s no rush. DIEP has to be done all at once, which complicates the issue. Ultimately, I would advise a woman considering her choices who is concerned about symmetry to talk to those who have had DIEP on one side and on both sides and ask, if possible, to see their breasts. I’m happy to show mine (but only in person—not on the web!!) . You really have to see reconstruction in person to totally get it.

As for those who have decided to go flat, that too is an option and always has been. I definitely considered it. As long as it’s understood that it’s not life-prolonging for those at average risk or that what you’re doing is somehow implicitly superior (in terms of treatment or in terms of maternal sacrifice) to those who, say, have a lumpectomy and radiation.

Anyway. I’m not here to litigate anyone’s past choices, including my own. My belief is that you make the treatment decisions that you make with the information you have at the time of diagnosis understanding that such information may change, become obsolete or incorrect. And you don’t look back. When I was originally diagnosed chemo was not recommended. A few years later, all women under 40 with cancer were treated with chemo as a matter of course. Oops. A few years after that, they went back to the way it was when I was first diagnosed. Oops again. I was among the first women to have a modified sentinel node biopsy. A few months earlier, they would’ve done the big scoop. A few months later, I would have had an actual sentinel node biopsy. So it goes. I’ve been around this world a long, long time. Longer than most patients, I’d wager. I’ve seen a lot.

I think about the women who had the Halsted radical mastectomy (which, according to Robert Aronowitz, even he knew would only prevent local recurrence, not metastatic disease); I wonder how they felt when it first became clear that lumpectomy and radiation would have sufficed. Were they resistant? Angry? Sorry? Did they celebrate that other women, that their own daughters, would not have to go through what they did?

Because that is the great news, isn’t it? Women at average risk do not have to fear keeping their healthy breast when diagnosed with cancer. I’m so grateful for that for the sake of anyone diagnosed in the future. And again: shouldn’t we be making sure that newly diagnosed women know that so that they make their decisions from a perspective of the greatest knowledge?

Finally,  as promised, here are some links beyond those listed above. I would encourage anyone interested in this issue, whether or not you have chosen CPM, to actually look at the research.

Increasing rates of CPM among women with DCIS

CPM among women with sporadic breast cancer

Increasing use of CPM among Breast Cancer Patients: A Trend Towards More Aggressive Treatment

Dana-Farber study on young breast cancer patients  over-estimating the benefit of removing the second breast.

Preventative Mastectomy Does Little to Increase Life Expectency (CBS News)

Tara Parker Pope on CPM

An interview with Steven Katz

The Cost of Peace of Mind

I imagine that now I will get a lot of comments from women explaining why they personally had CPM. That’s fine, I guess. But not the point. The point is to ensure women have a realistic understanding of what the procedure can and cannot do for them. It is tragic and even cruel for someone to have CPM based on the false belief that it will prevent death. I hope we can all agree on that.