It's very hard for anyone who has not had cancer to understand what it's like to be diagnosed with cancer. Finding a lump, having a biopsy, waiting for the news (which turns out to be bad), being transported into an alternative universe that somewhat resembles something you've seen on TV but is happening to you and never cuts for a commercial -- the whole experience is, for many, life-shaping in a way that few other events can be. And this is even before the grinding marathon of treatment. War analogies are beyond trite, but there are significant parallels between the subjective experiences of cancer patients and soldiers in battle -- fear of death, confusion, and a sense that the outcome is not entirely within one's control. Survivors don't want to go through that again. They feel like they might not survive next time and, even without that, the journey itself is one they don't want to relive. This is the backdrop for the conversations about prophylactic mastectomy that take place between women with breast cancer and their doctors.
A number of studies have found that more and more women are choosing bilateral mastectomy (removal of both breasts, including the healthy one) when they are diagnosed with breast cancer. One study, presented last week at the American Society of Clinical Oncology Quality of Care Symposium, found that about 7 percent of newly-diagnosed women have bilateral mastectomy, and the proportion is more than twice that in women who already need a mastectomy on the side with cancer.
Although this may not seem like a lot, this is a substantial increase since 1998. Breast cancer researchers have spent decades doing studies that have conclusively shown that women treated with lumpectomy and radiation are as likely to survive as women treated with mastectomy. Women who die of breast cancer most often do so because of cells that escaped from the original breast tumor before it was found, and more aggressive surgery is, unfortunately, akin to locking up the barn after the horses have left. This is why doing more extensive surgery does not improve a woman's chances of surviving her breast cancer.
In light of this research, doctors who treat breast cancer patients sometimes express puzzlement and even chagrin about the "epidemic" of prophylactic mastectomy. Many of the women undergoing this procedure have inherited genetic mutations, especially in the genes BRCA1 or BRCA2. If they don't remove their breasts, about one-fourth of them will develop a new cancer within 10 years in the initially-healthy breast. The sheer magnitude of the risk prompts many women with mutations to choose the more extensive surgery, even though it's not absolutely required.
There is near-universal agreement that this is an easily understandable and supportable decision, even without a proven survival benefit. But many, perhaps most, women who are having bilateral mastectomy do not have one of these mutations, and their risk of developing a new cancer is about 1 in 20 over 10 years. Most of these women would never develop a new breast cancer even if they did not have prophylactic surgery, and bilateral mastectomy is very unlikely to improve their survival. For these women, the more extensive surgery is often suggested to be "unnecessary." Much of the tension that arises in discussions about prophylactic mastectomy comes from differing perspectives on the word "necessary."
Why would a woman want to undergo such a procedure if it doesn't improve survival? After all, there can be significant physical and sometimes psychological consequences, and reconstruction is never perfect. One view held by some physicians is that women understandably fear the return of their breast cancer and believe, despite evidence to the contrary, that more aggressive surgery will improve their odds of being cured. The findings of the recent study from the University of Michigan appear to support that idea, in that "worry about recurrence" was a significant predictor of bilateral mastectomy. But doctors and women with breast cancer sometimes mean different things by the word "recurrence." When doctors talk about "recurrence," they are talking about return of the original breast cancer, either in the breast or in another organ as a metastasis.
Those things represent "recurrence" to women with breast cancer, too. But women with breast cancer also often describe brand new breast cancers in the other breast as "recurrences" and may not understand that the implications of a new cancer in the other breast are very different from those of a return of the original cancer as a metastasis elsewhere in the body. From their point of view, all new breast cancer diagnoses are equally mortal threats, and more extensive surgery makes complete sense.
Of course, if women are choosing to make a decision to have prophylactic surgery on the basis of a misunderstanding regarding the nature and implications of a diagnosis of breast cancer in their other breast, their doctors need to educate them more effectively regarding the difference between true, life-threatening recurrence elsewhere in the body and serious, but usually less dangerous, new cancers in the other breast. It is also important to help women more accurately understand their risk of developing a new breast cancer.
To further this goal, we are doing research, supported by the Breast Cancer Research Foundation, to look at the effect of common genetic variations (as opposed to the rare mutations in BRCA1 and BRCA2) on the chance of developing breast cancer in the opposite breast. Ultimately, we hope to be able to build a model that will accurately predict a woman's risk and help her make an more informed decision about surgery.
But it may be that education and more precise risk estimates will not impact the rate of prophylactic mastectomy as much as one might think. For some women, the fear that drives their decision to have bilateral mastectomy is not just a fear of death. These women are terribly afraid that, at some point in the future, they will have to again hear that they have breast cancer. These women believe that prophylactic surgery will relieve them from the existential threat of a second diagnosis, and that this is enough justification for the more extensive procedure.
Some physicians feel uncomfortable with this rationale. All procedures have risk, and aside from the usual surgical risks, women who have had bilateral mastectomy often have permanent loss of sensation across their chest and varying degrees of discomfort related to their reconstruction. They also may have changes in the way they feel about their bodies and in their sexuality. When physicians are trying to decide whether a procedure is "worth it," their calculation is much more straight forward when the benefit is an improvement in survival, which can be measured. When the benefit is more subjective, such as a reduction in fear, it is much more difficult for many doctors to know whether the potential upside justifies the downside. They may resist supporting the surgery out of concern that the woman may later regret her decision.
So, how to bridge this communication gap? First, women with breast cancer should be helped to clearly understand what can and cannot be achieved by prophylactic bilateral mastectomy and the potentially significant (although rarely life-threatening) risks of the procedure. Doctors, in turn, should accept that a reduction in fear is a worthwhile goal in cancer treatment, if it can be gained with a risk of toxicity that is acceptable to the patient and without a reduction the chance of survival. In my experience, most women who undergo prophylactic mastectomies after a careful and complete discussion affirm that they would do it all over again, despite the long-term consequences of the procedure. We all look forward to the day when no woman will need to make the decision.
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