In medicine, the care that’s available — even when it seems like it should help — doesn’t always turn out to have any real benefit.
From early-and-often mammograms to DES for preventing miscarriages, the history of women’s health is full of interventions for preventing or detecting disease that sometimes didn’t help, and sometimes led to real harm.
Peggy Orenstein, author, most recently, of “Cinderella Ate My Daughter,” recently brought attention to another intervention that may not do many women any good — contralateral prophylactic mastectomy, or “CPM.”
The procedure refers to when a woman with cancer in one breast chooses to remove the healthy breast as well, hoping this may prevent future cancer in that breast. Orenstein considered doing so after a recurrence of breast cancer in 2012.
In a recent New York Times op-ed, “The Wrong Approach to Breast Cancer,” Orenstein notes the increasing rates of CPM, and the misinformation surrounding the risk of contracting cancer in the other breast:
After a decades-long trend toward less invasive surgery, patients’ interest in removing the unaffected breast through a procedure called contralateral prophylactic mastectomy (or C.P.M., as it’s known in the trade) is skyrocketing, and not just among women like me who have been through treatment before.
According to a study published in the Journal of Clinical Oncology in 2009, among those with ductal carcinoma in situ — a non-life-threatening, “stage 0” cancer — the rates of mastectomy with C.P.M. jumped 188 percent between 1998 and 2005. Among those with early-stage invasive disease, the rates went up 150 percent between 1998 and 2003. Most of these women did not carry a genetic mutation, like the actress Angelina Jolie, that predisposes them to the disease.
Researchers I’ve spoken with have called the spike an “epidemic” and “alarming,” driven by patients’ overestimation of their actual chances of contracting a second cancer. In a 2013 study conducted by the Dana-Farber Cancer Institute in Boston, for instance, women under 40 with no increased genetic risk and disease in one breast believed that within five years, 10 out of 100 of them would develop it in the other; the actual risk is about 2 to 4 percent.
Despite the increase in surgeries, CPM is unlikely to help most women prevent further breast cancer or to live longer. Orenstein mentions a recently published study that used existing cancer data to create mathematical models of what would happen if a patient chose CPM, and what would happen if they didn’t.
According to their model, the life expectancy gained from CPM ranged from just 0.13 to 0.59 years for women with Stage I breast cancer, and from 0.08 to 0.29 years for those with stage II breast cancer. The authors also looked at 20-year survival, and concluded: “The absolute 20-year survival benefit from CPM was less than 1 percent among all age, ER status, and cancer stage groups.”
In other words, CPM appeared to do very little to increase a woman’s life expectancy or survival over 20 years.
The study Orenstein cites is not the only one to question the benefit of CPM. Another group of researchers, looking at data from patients who had breast cancer in the years 1998-2002, concluded that “CPM’s effect on overall survival is minimal at best and [the data] do not reliably identify a subgroup that would benefit from CPM.”
In a related opinion piece, one of the authors of that study writes:
These tools/models need to adequately inform patients about the risk of contralateral cancer, the fact that surgical choices do not influence the risk of distant relapse and overall survival, and the risks associated with CPM, such as operative complications, negative effects on body appearance, and longer recovery. They will need to integrate a breadth of factors, including patient age, comorbidities, tumor stage and phenotype, number and degree of affected relatives, and opportunities for nonsurgical risk reduction, with the ultimate goal of providing much greater accuracy of potential survival benefit for CPM for each individual breast cancer patient.
Most importantly, these tools/models need to align patient goals with objective data so that patients can make truly informed decisions that provide the most decisional satisfaction and lessen anxiety and stress for patients. Such efforts to reduce CPM where it is not warranted, coupled with attempts at identifying the small subsets at highest risk for contralateral breast cancer and who thus might potentially benefit from surgical prophylaxis, are important next steps to move the field forward.
Similarly, others have pointed out that “in women at substantially higher risk (based either on family history or genetics), the benefit of CPM might be far greater, and CPM might be a good choice for the patient or for society.”
Women with BRCA mutations or strong family histories of breast cancer might get more benefit out of removing the healthy breast than women with less risk. For example, a 2013 research paper reported greater survival at 10 years for women with BRCA1/2 mutations who chose CPM compared to those who didn’t; however, there is not yet a lot of research on this issue.
Despite the lack of apparent evidence to support CPM for saving normal-risk women’s lives, Orenstein’s opinion piece seemingly generated a lot of controversy. At Slate, Catherine Guthrie writes that while she knew the surgery wasn’t likely to have health benefits, she had other reasons for having it anyway:
In my case, I didn’t want reconstruction, and I couldn’t picture having only one breast. I tried to imagine my singleton, and it looked as forlorn as the lone survivor of identical twins. And I knew it would be on probation: My remaining breast would require biannual mammograms. Each screening would drum up anxiety and cancer treatment flashbacks. At that cost, I wasn’t sure what I would gain by keeping it. Certainly, my breasts had once conveyed great physical and emotional pleasure. But, post-cancer, I feared the remaining breast would only offer a painful reminder of how much I’d lost.
Beth Gainer, also a breast cancer survivor, frames it as a choice issue:
And, yes, I know that I can still have a recurrence in either or both breasts and that a prophylactic bilateral mastectomy is not a cancer panacea. But I opted for this procedure, hoping it could tilt the odds a bit more in my favor. Another patient in my circumstances might have opted to keep his or her breasts. And that’s fine.
Orenstein herself has responded to the discussion her piece generated, reminding readers that she was only addressing patients at average risk of a second cancer, and writing:
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.
Also in response to this discussion, Breast Cancer Action Director Karuna Jaggar notes the confusion that exists around breast cancer, calling it a “bizarre truth that many women in the U.S. overestimate their risk of this disease ‘thanks’ to the pervasive breast cancer awareness movement.”
Women who are 40, for example, estimate that their breast cancer risk is more than 20 times the actual likelihood that they will develop breast cancer over the next decade. And women who have cancer in one breast overestimate their risk of cancer in the other breast by sixfold. The result of this culture of fear of breast cancer can lead women to do anything and everything to treat breast cancer, whether or not the evidence shows it impacts survival rates. In this culture of fear, “peace of mind” for women (and their doctors) becomes the key objective—even if that peace isn’t backed by sound evidence.
So where does that leave women making this choice in the face of a breast cancer diagnosis? Perhaps the best advice on CPM and breast cancer decision-making comes from AnneMarie Ciccarella at Chemobrain:
Our doctors have an obligation. Those who have big voices have a responsibility. It’s up to all of us to start the conversation by sharing: Here’s the evidence, backed by a ton of science. Sift through it. Do lots of talking, reflect, think about every aspect and then, and ONLY THEN, make your best decision based upon the information available at the time.