University experts weigh pros and cons of double mastectomy

Tuesday, July 19, 2016 - 4:09pm

When it comes to a patient’s decision on how to treat a health threat, knowledge is key to navigate through a myriad of treatment options.

Each year, more than 230,000 women are diagnosed with breast cancer, and more than 40,000 will die from the disease. It is considered a common medical condition in women; one in eight women will be diagnosed with breast cancer sometime in their life.

Steven Katz, University of Michigan professor of internal medicine, explained that the treatment process can be stressful, since there are different options for patients, including surgery, radiation, chemotherapy and pills. Information for treatment recommendations has become increasingly complicated, as it now includes stages of cancer, its spread and the biological characteristics of the cancer.

“All women have the decision about surgery, and it’s not that easy to do because they have to consider the choices they have for surgery and all of the other treatments that go into the management of breast cancer,” Katz said.

One possible breast cancer treatment is bilateral, or double, mastectomy, which removes both breasts to prevent cancer. The number of women who underwent double mastectomies performed has tripled in the past 10 years. In 1998, 3.6 percent of women younger than 40 had the procedure, but, in 2011, the percentage jumped to 33 percent. In spite of this increase, double mastectomies do not necessarily improve chances of survival, Katz said.

Michael Sabel, University chief of surgical oncology, wrote in an e-mail to the Daily that some double mastectomies can be warranted. Genetic testing looks for changes in a patient’s genes, proteins or chromosomes. For breast cancer, mutations in genes called BRCA1 and BRCA2 put patients at a higher risk for breast cancer. Younger women who have the cancer or are at a higher risk for developing breast cancer in the future may choose to undergo double mastectomies to prevent a second or first incident of breast cancer, respectively.

“In 2002, genetic testing became available for decision making prior to surgery and so younger women with breast cancer, or women with very strong family histories, could undergo genetic testing, and, if they harbored a genetic mutation, they stood a high chance of developing a (second) cancer and thus opted for bilateral mastectomy to not only treat the known cancer but also prevent a second cancer in the future,” Sabel wrote. “However, genetic testing is (im)perfect — there are young women or women with very strong family histories who test negative for a genetic mutation, and we don't know every gene responsible for breast cancer, so many women who are considered high-risk may also opt for bilateral mastectomies.”

Sabel said, in addition to genetic testing, other factors — such as imaging from MRIs or improved reconstruction surgery — could be involved in the decision to have a double mastectomy.  

However, Sabel wrote there is still misinformation on the benefits of a double mastectomy that can mislead women in their decisions. Sabel cited media coverages of celebrities who have had double mastectomies, and other social media outlets as possible sources that spread misinformation.

“While doing the more drastic surgery may reduce risk of a (second) cancer, for most breast cancer patients that risk is not that high and it is important to note that bilateral mastectomy does not improve survival over other options, such as breast conservation,” Sabel wrote. “These ideas likely come from multiple sources.  We just wrote an article studying the possible impact of celebrity news reporting on perpetuating this. There are more blogs, support groups, websites, etc. about breast cancer that may propagate this.  There is also likely word of mouth from family or friends who have gone through breast cancer treatment.”

Katz explained that the pressure of the situation tends to make patients react quickly — going with their guts and the recommendations of their doctors. Sometimes these decisions are made after one visit.

“In that context, people, men or women can prefer or favor an extensive treatment regiment — more extensive than it's necessary,” Katz said. “For years, we’ve been talking about overtreatment of cancer, or overtreatment of anything and often blaming the doctors and characterizing the doctor being too aggressive. In one thing I have researched and learned was that patient’s partner often would have the preference to treat more extensive than it’s clinically indicated.”

Katz believes patients who think more extensive treatment is better contributes to the rising rates of double mastectomies. He warned that extensive surgery, not just mastectomies, can lead to such side effects as life-long swelling of the arms.

Katz believes there is a more general problem: working with patients to counter the immediate reaction to a health threat.

There is an enormous need for clinicians to help navigate patients in their cancer treatment since the decision is much more complex than before, Katz stated. Though the tests for breast cancer usually can identify which patient can benefit from which treatment, in some situations, it is uncertain what the best course of action is. For such situations, he said, patients want to go for the more extensive treatment to go back to their normal routine or to assure themselves that they did everything they could.

“It is the kind of psychological factor that drive people to prefer the most aggressive treatment when in fact the most aggressive treatment will not improve their health, life expectancy or survival,” Katz said.

Katz believes doctors are trying to encourage less-intensive treatments to prevent harm. Physicians recognize that treatment can harm and even kill patients, he said.

Sabel wrote that double mastectomies may, nevertheless, be the right decision in uncertain situations.

“The peace of mind (the psychological benefit) of bilateral mastectomies might be a sound decision for them.  It is hard to say if it is ‘the best one’ and my job as a doctor isn't to make those decisions for the patient, but to (educate) and advise them,” he wrote. “Clearly I try to steer patients away from poor decisions, but when two treatments have equal survivals, even if one is more 'drastic' it is hard to say it is a wrong decision.”

Sabel added that the key is to learn why a patient wishes to have a double mastectomy, while informing what will or will not work.

“So women who think they will live longer because they have this operation need more education,” Sabel wrote. “But many women are frightful of a (second) cancer, even if the risk is low, and the idea of yearly mammograms can be stressful, particularly if they get a call-back or need a biopsy.”

Ruth Freedman, chief administrator of the University's Molecular and Behavioral Neuroscience Institute, is an advocate who leads the University Breast Cancer Advocacy and Advisory Committee. The committee has monthly meetings to provide the best information for breast cancer patients and survivors, helping them with their decisions.

The committee aims to clarify facts so that patients understand their best course of action and become knowledgeable advocates. The committee also communicates regularly with researchers from organizations, such as the American Cancer Society, to give them feedback on their work and clinical trials on how it would affect their patients.

While acknowledging that the chance cancer can spread from one breast to the other breast is little and thus a double mastectomy may be unnecessary, Freedman emphasized the decision is ultimately left to the patient.

“For them, given their situation, (double mastectomy) may be the best course of treatment if they are young women or single moms,” she said. “Or if their own emotional status is one that they can’t live with the possibility of cancer in the other breast, even if it could go elsewhere as well, it’s not necessarily a guard against any other breast cancer.”

When it comes to decision making, Katz recommended patients not make rushed decisions. He stated that, being diagnosed with breast cancer is not a medical emergency, so patients should take the time to think, gather information and make careful decisions with their physicians. Patients should also find out rationales for recommendations, he emphasized, and be satisfied with them.

Along with the cognizant patients, doctors should be mindful of the patients and keep themselves updated on their patients, he added.