'Taking Back Control': The Growth in Prophylactic Mastectomy

Liam Davenport


January 10, 2019

Why would a woman recently diagnosed with early-stage breast cancer in one breast choose to face the risks and uncertainties associated with major surgery, such as contralateral prophylactic mastectomy, when there is no survival benefit compared with less invasive approaches?

And yet, that is the reality. In North America, recent studies estimate the number of contralateral prophylactic mastectomies is increasing by more than 14% year on year, despite official recommendations to the contrary and the best efforts of clinicians to dissuade patients.

In the second of a two-part series, we look at the stresses facing women when they are diagnosed with breast cancer and the bewildering amount of information they have to take in when making this life-changing decision, as well as the sometimes conflicting messages that they receive from healthcare providers.

Contralateral Prophylactic Mastectomy Is on the Increase

As discussed in part 1, several studies in recent years have underlined the anecdotal impression gained by clinicians that there is a trend toward more and more contralateral prophylactic mastectomies in women with breast cancer.

This runs contrary to guideline recommendations from the National Comprehensive Cancer Network[1] and the American Society of Breast Surgeons,[2] which state that whereas women at high risk of developing breast cancer (such as those with BRCA1/2 mutations or a family history of the disease) can be considered for prophylactic double mastectomy to remove both breasts, women with cancer in one breast should be discouraged from having the procedure.

Such recommendations reflect the evidence gained from numerous studies showing that the risk for breast cancer is reduced by at least 90% in women with BRCA1/2 mutations or a family history of the disease who have both breasts removed.[3,4,5,6]

However, a large-scale study of more than 19,000 women reported by Medscape showed that women who already have breast cancer in one breast derive no survival benefit compared with breast-conserving surgery plus radiation.

In the fact sheet Surgery to Reduce the Risk of Breast Cancer the National Cancer Institute says that women who have been diagnosed with cancer in one breast "may consider" contralateral breast removal, even if there is no sign of cancer in the other breast, but they emphasize that this is often discouraged in women who are not at high risk for cancer in the opposite breast. Women who "remain concerned" may want to "consider options other than surgery" to reduce their level of risk.

Patients With Breast Cancer Are Afraid...

Several studies in recent years have looked at the factors associated with contralateral prophylactic mastectomy among women with early-stage breast cancer. A study of more than 3600 women indicated that women who were younger and white, those with a higher educational level and a family history of breast cancer, and those who had private medical insurance were more likely to choose the procedure.[7]

Of note, the study also suggested that among lower-risk women, less than 2% of those whose surgeon had recommended against contralateral prophylactic mastectomy went ahead with the procedure. Among women whose surgeon did not make a recommendation for or against the surgery, almost 20% went on to have it, suggesting that lack of information plays a significant role in women's choices.

Hawley and colleagues[8] found in their study of almost 1500 women that greater worry about recurrence was associated with contralateral prophylactic mastectomy, alongside undergoing genetic testing, regardless of the result.

This is supported by the findings of a focus group study of young patients with early-stage breast cancer, which revealed that women who chose contralateral prophylactic mastectomy were often worried about a future breast event, even though they had a low risk.[9]

Steven A. Narod, MD, Women's College Research Institute, Women's College Hospital, Toronto, Ontario, Canada, suggested that anxiety plays an important role in women's choices. He said that although genetic testing and the increasing acceptance of bilateral mastectomy as a procedure have both fueled its growth, he feels the reason that has had "the most profound impact is that we've scared women so much."

"There's this high level of baseline anxiety, and they're so concerned about daily living under the stress of anxiety that mastectomy is the best way to relieve it," Narod said.

...So They Turn to Their Peers for Advice

On their webpage Is Prophylactic Mastectomy Right for You?, Breastcancer.org, a commonly accessed site for patients with breast cancer, closely follows the guidelines stating that women who have not yet been diagnosed with breast cancer should not be candidates for the procedure, saying that it is reserved for high-risk women.

The Susan G. Komen Breast Cancer Foundation agrees, emphasizing in its fact sheet that the procedure is to be considered in women at high risk for breast cancer, such as those with certain gene mutations.

Although both organizations weigh the pros and cons of mastectomy versus lumpectomy, neither have a page dedicated to discussing contralateral prophylactic mastectomy in women already diagnosed with breast cancer. Yet the public message boards of patient advocacy groups underscore how much of a concern this is for women.

In one forum hosted by Breastcancer.org, a woman recently diagnosed with breast cancer presented her medical and family history and asked people for their thoughts on whether she should have a double mastectomy, or "bilat."

Many were in favor of her having the more radical surgery, with one poster saying that her mother "wishes she'd have been 'allowed' to have a bilat, but 'back then' it wasn't even discussed at all."

Another said, "I don't regret my decision for a bilat—I had recon[struction] and symmetry was important to me. I achieved that, and in clothes, no one can tell."

One woman recounted her conversation with a friend when she was deciding about bilateral mastectomy. "I said to my friend, 'I would like to be able to breastfeed my children one day.' To which my friend said, 'Your children would rather have a mother in the long run than be breastfed.'"

She added, "It is hard to let go of your breasts. But my sister said, 'It would be harder to let go of your life.'"

Twelve days after her original post, the woman who started the thread said, "Thanks everyone! I had a double mastectomy on Thursday. Went great! My lymph nodes were all clean!!! At home now taking it easy. Thanks for all your love, support, and prayers!"

In a similar thread on the MedHelp forums, a woman with stage I breast cancer asked for suggestions on whether to go for double mastectomy. All four responses were in favor, suggesting that the surgery would offer peace of mind.

One woman said, "It's a great weight off my chest (pun fully intended) to be rid of the constant worry I would have wondering what was lurking unseen in my breasts."

The media also has an impact. Catherine Priestley, clinical nurse specialist at Breast Cancer Care, London, United Kingdom, noted that the charity "can predict the types of calls that come through to the helpline by the stories that are covered in the media."

She told Medscape that when Angelina Jolie announced that she had had a risk-reducing double mastectomy, "the amount of calls that we took about the risk for inheriting a faulty BRCA gene and family history increased markedly."

Making a Personal Decision

Nevertheless, Susan Brown, director of education and patient support at Susan G. Komen, said that a woman's decision on whether to opt for contralateral prophylactic mastectomy or not is a personal one that rests on several factors.

"One is ensuring that the patient has accurate information about the risks and benefits of every treatment option that is offered, and that usually includes asking a lot of questions, having a good understanding about the type of breast cancer, and understanding why one treatment is being suggested or recommended," she said.

"Then she, or he, considers personal factors, such as her or his value system; her tolerance for risk [and also] lifestyle can enter into it," Brown added.

Asked what Susan G. Komen as an organization thinks about the increasing trend toward contralateral prophylactic mastectomy, Brown said, "We don't really take a stance on it, aside from really having a strong feeling that it's imperative for those patients to understand the risks and benefits."

However, Priestley questioned how women interpret the information they have received about having contralateral prophylactic mastectomy, particularly with regard to risks. She said that when discussing their options, "patients tend to focus on the benefits, but they don't really think about the risks."

Priestley added that she finds it "quite challenging as a nurse" to talk to a caller who is thinking of requesting a contralateral risk-reducing mastectomy because "when they're diagnosed, their focus is on survival, and what can they do to survive. So their automatic knee-jerk reaction is, 'Well, take it off, and take the other one off, too.'"

Do Patients Perceive Risk Differently?

One factor that may explain why women feel so anxious about their contralateral breast, and so increasingly opt for its removal, is that when they are told about their risk for cancer in the opposite breast, they perceive that risk differently from how their doctor sees it.

Narod explained, "The idea of risk—for us doctors, epidemiologists, and scientists, who like to think of ourselves as quantitative—is that risk is a number that is best expressed on a continuum of 0 to 100, either as a lifetime or an annual risk, and we believe that the idea of risk can determine the idea of prevention."

In other words, "The higher the risk, the better the benefit, the more of a reduction in risk you can achieve, the more rationale there is for the intervention."

However, he continued, "I figure now, after looking at this for years, that women tend to translate risk into positive or negative: at risk or not at risk, which is 'average' or 'high.'"

The impact of a particular risk also depends on who you are talking to. Narod says that a woman diagnosed with ductal carcinoma in situ (DCIS), on being told that she has a 3% risk of dying from breast cancer, would probably choose bilateral mastectomy.

"But if I go into the general population, to the people who don't see themselves as being positive or anything, and I say, 'What do you think your chances are of dying of breast cancer?' they say 5%. And I say, 'Are you thinking about having a bilateral mastectomy?' and they'll say, 'No, that's crazy.'"

Priestley agreed, adding, "You sort of have to go back to basics with a lot of people to make them understand the purposes of the different treatments and the risk for recurrence from the cancer they've got, [and] talk through what they perceive is their risk and put them in the picture as to what their overall risk of developing breast cancer...in their unaffected breast is."

Yet discussing risk factors often amplifies women's concern, with breast cancer patients overestimating risk.

For example, Partridge and colleagues[10] surveyed 500 women diagnosed with DCIS and found that over one half saw themselves as having at least a moderate risk for DCIS recurrence in the next years. Two fifths of women thought they had at least moderate risk for invasive breast cancer over the same period, and nearly one third saw themselves as having at least moderate risk that their DCIS would spread to other parts of the body.

Crucially, the percentage absolute risks that the women assigned to such terms as "moderate" were far higher than the standard medical definition.

For example, "very unlikely" and "likely" were associated with a median perceived absolute risk of 3%-5%, whereas "moderate" was linked to a perceived absolute risk of 25%-30%. "Likely" and "very likely" were associated with a perceived risk of 60%-70%.

Understanding the Implications of a Breast Cancer Diagnosis

For women receiving a diagnosis of breast cancer, it can be "very hard" to take everything on board and put all this together, Brown said.

She continued, "It takes time. You get a little bit of information, and then you build on that little bit of information with additional information, until you hopefully get a clear understanding of your diagnosis and your treatment options."

"But it's a lot of information, and for some people, they have to learn a whole new vocabulary and learn how to deal with a healthcare system they may not have had experience in up to that time," Brown explained. "That just adds to the extreme stress that women diagnosed with breast cancer feel throughout the whole experience, but particularly before, as they're learning and trying to make decisions, and seeing different doctors and different specialists, sometimes with different opinions about the course of treatment."

In the face of all of that, the choice to undergo something as definitive as contralateral prophylactic mastectomy can feel, to some women, empowering.

"Part of it is taking back control," said Ashu Gandhi, MD, PhD, an executive member of the Association of Breast Surgery in the United Kingdom. "Even if you're told a million times that it has no effect on your prognosis, the fact that you are requesting it and then obtaining it is giving you back control over your own body, or so you think it does."

Gandhi continued, "I'm sure there's a bit of wanting to take back control, because at the point of diagnosis, of course the doctors and nurses take over. And even if they include you fully, you don't quite understand what they're saying, and you feel like they know best anyway. So there's an element of loss of control at the point of diagnosis."

The Impact of Breast Reconstructive Surgery

Women diagnosed with breast cancer can also be so focused on the decision of whether or not to have contralateral prophylactic mastectomy that they underestimate the impact of having subsequent breast reconstruction.

Nora Jaskowiak, MD, associate professor of surgery and surgical director at the Breast Center, University of Chicago Medicine, Chicago, Illinois, said that when discussing breast-conserving in one breast versus double mastectomy, "obviously we really try to stress that."

She tells women, "You can have an operation that could take less than 2 hours, go home the same day, and have minimal pain and get back to your life really fast, or you could have a 6- to 12-hour operation and [spend] several days in the hospital [with] tubes and drains and a huge increased risk for complications."

This, she explains, is in addition to the loss of sensation in the chest wall, which affects "both intimate sensation and regular touching and hugging."

Shana Draugelis, who founded the shopping and lifestyle website The Mom Edit, set out her experiences in great detail in a blog post titled "Double Vs. Single Mastectomy? What I Wish I Knew," explaining breast reconstruction and its implications.

In it, she says that there is "so much support in the breast cancer world," but there "is also some overly enthusiastic 'HORRAH!' surrounding reconstruction after mastectomy."

Although she emphasizes that she has had, "by all accounts, a 'beautiful result'...and my perky, full breasts defy gravity," she pointed out that "they are not real."

"Up close, without the bra, they do not look real, they do not feel real, they do not act real. A beautiful result from a horrifying and monstrous surgery? You bet. But beautiful, real breasts? NOPE."

Shana's honesty has been appreciated.

One oncology nurse said: "I would like to thank you for sharing your story in such a realistic and frank manner. These are facts and realities, and when we shy away from them, we are doing ourselves and those around us a huge disservice."

Referring to a passage in which Shana explains that the breast implants go behind the muscles in the chest wall, which then contract across the implants during movement, one woman said, "No one told me about this, and it was the thing that made me cry in the shower for months, seeing my muscles contort while I washed my hair."

Finding Support

There are, however, other ways in which women can not only find out crucial information that may help their decision-making, but also receive much-needed support at a time of anxiety and distress.

For example, Brown said that Susan G. Komen has a breast care helpline staffed by specialists and oncology social workers. They are there, she said, to answer questions and "provide that psychosocial support to help callers know it's okay to take a breath and gather information," as well as help them "formulate a list of questions" to take back to their healthcare provider.

Breast Cancer Care, in the United Kingdom, has a service called Someone Like Me, in which women with breast cancer, or their friends or family, are paired with a trained volunteer who has been through the same experiences.

Priestley said that even if someone has a "great, supportive family," unless they have had breast cancer and "needed to make those decisions," it's hard for them to empathize with a patient. "So it's not unusual, when people make a decision of any description, that we would say: Do you want to talk to somebody who's had to make that decision?"

Jaskowiak said that particularly for women thinking about contralateral prophylactic mastectomy, she has a "whole spiel," based around five Ss.

"Of course, they always think that somehow it's going to help their survival...so I tell them that the evidence shows no benefit on survival."

She continued, "And then I talk about symmetry. People are very worried about symmetry and like the idea of having both breasts off and immediate reconstruction. But very often, breast reconstruction doesn't lead to perfect symmetry."

Moreover, she pointed out that even in women having breast-conserving surgery, "there's things that plastic surgeons can do just to the other breast to help symmetry."

The next S is sensation, or the loss of it following reconstruction, and the fourth is surveillance. "If they keep their breasts, of course they will have to do mammograms and sometimes other imaging studies," Jaskowiak said.

"If they have a bilateral mastectomy, then there's no imaging at all, and sometimes women like to hear that and some people are alarmed."

Jaskowiak concluded, "And then I talk about sanity, because some people are extremely, extremely anxious."

"I try to talk to them about the fact that we don't usually do surgery and remove normal parts of people's bodies because of anxiety; that surgery in general is not a treatment for anxiety, and that we have other ways that we could help patients."

Finally, Jaskowiak explains to people that "even if they do get breast cancer in the opposite breast, it could be 30 years from now, and then they would have had that breast, and the sensation and the normalcy of it, for all those years."

"And who even knows how we're going to be treating breast cancer 30 years from now, because we do things so differently now than we did 30 years ago."

"I try to bring in that idea that we're making so much progress and so it will be very different in the future. I've found that sometimes helps people put things in perspective a little bit," she said.

No conflicts of interest or funding declared.


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