More than 40 percent of patients with early stage unilateral breast cancer considered having a contralateral prophylactic mastectomy and about one in six received it, including many women who were at low risk of developing a second breast malignancy, according to new research (JAMA Surgery 2016; doi: 10.1001/jamasurg.2016.4750).
Patients' reactions to their disease and the prospects for treatment are very influential on the decisions they make, said senior study author Steven J. Katz, MD, MPH, Professor in the Departments of Medicine and Health Management and Policy at the University of Michigan. “If patients are told they have a life-threatening illness and that we're going to make them sick from the treatment to make them better, that puts them on their heels.”
Many patients want to pursue every treatment they can as quickly as possible to free themselves of the threat of cancer and return to their families and their work, explained Katz. This can lead women to desire treatments that are more extensive than may be clinically indicated to improve survival or quality of life.
With that said, “I would never question a decision that a patient makes about this,” said Katz. “The only person who can question it is the person who lives it. We have to respect with some humility the decisions patients make that are in alignment with their perspectives and values.”
Katz and his colleagues surveyed 2,578 women, ages 20-79 years, who had surgery for unilateral stage 0, I, or II breast cancer diagnosed between July 2013 and September 2014. Researchers used the Surveillance Epidemiology and End Results registries in Georgia and Los Angeles to identify participants.
Overall, 43.9 percent of patients said they considered undergoing a contralateral prophylactic mastectomy. Out of a total of 1,466 women, 61.6 percent received breast-conserving surgery, 21.2 percent received a unilateral mastectomy, and 17.3 percent opted for a contralateral prophylactic mastectomy.
Researchers grouped patients based on their genetic risk of developing cancer in the unaffected breast and found that of the higher-risk patients, 26.4 percent underwent contralateral prophylactic mastectomy, while 14.2 percent of those at average risk opted for the procedure.
Among patients who considered contralateral prophylactic mastectomy, only 38.1 percent knew it does not improve survival for all women with breast cancer. Almost all patients, 96.3 percent, said peace of mind motivated them to choose double mastectomy.
Thirty-seven percent of patients perceived that their surgeons recommended strongly against contralateral prophylactic mastectomy. Only 2.1 percent of these women went on to choose the procedure. Of the 46.3 percent of women who reported receiving no surgeon recommendation regarding contralateral prophylactic mastectomy, 20.9 percent chose the procedure, even if they were at average risk of a genetic mutation.
The findings of this paper were consistent “with my view as a clinician and a research scientist in this area,” said Katz, adding they were also in line with previous literature.
Women may choose contralateral prophylactic mastectomy when the procedure is not needed because “there's a lot of misinformation out there,” said Anne M. Wallace, MD, FACS, Director of Comprehensive Breast Health Center at UC San Diego Moores Cancer Center, Professor of Clinical Surgery, Surgical Oncology and Plastic Surgery at UC San Diego. “I've been speaking out against [contralateral prophylactic mastectomy] for quite a while.”
Typically, highly specialized breast surgeons take the time to talk with patients about the procedure's limitations and when it should and should not be indicated, said Wallace. However, general surgeons sometimes “don't know the data,” she said.
Wallace thoroughly discusses the benefits and drawbacks of contralateral prophylactic mastectomy and its indications because the risk of complications increases with the more surgery performed.
“There's never been a survival benefit for doing mastectomies,” added Wallace. The procedure may reduce the occurrence of cancer, but this is different than improving survival, she added. “Even for BRCA patients, the data does not support that there's any survival benefit.”
Most women who receive contralateral prophylactic mastectomy do not experience any benefit in disease-free or overall survival, and that's important information for patients to have considering complications that may be associated with the procedure, including infection and seroma, commented Oluwadamilola “Lola” M. Fayanju, MD, MA, MPHS, Assistant Professor of Surgery, Duke University Medical Center, Durham, N.C.
Additionally, if women experience a surgical complication, this may delay treatment for the breast that contains cancer, said Fayanju, who wrote an editorial accompanying the survey.
Either doctors aren't reinforcing the message about lack of benefit or patients aren't hearing it, said Katz, adding that “it may be the latter.” Surgeons generally agree women with an average risk for a second cancer are not going to gain in survival from contralateral prophylactic mastectomy, he noted.
Patients need to understand “breast cancer is only limitedly cured with surgery,” said Wallace, adding that surgical oncologists, radiation oncologists, and medical oncologists work together as a group to manage the disease. “Women like to think that if we cut the cancer out they won't see it again, but there's a whole realm of cancer care. [For example], just because you have a contralateral mastectomy doesn't mean you get to skip tamoxifen.”
Contralateral prophylactic mastectomy, however, may be indicated in women with triple negative breast cancer to help with risk reduction of developing another malignancy, said Wallace, adding that these patients are not candidates for antiestrogens.
One of the contributing factors to an increase in women's consideration of contralateral prophylactic mastectomy is the excellent reconstructive options being provided by plastic surgeons, said Fayanju. “Women now know they can have cosmetically pleasing results following a mastectomy,” she said.
Plastic surgeons should be “commended as a profession for providing good options for our patients,” added Fayanju. Improved techniques have especially helped young women contend with postmastectomy body image concerns, she said.
Overall, oncologists are getting better at diagnosing breast cancer at an early stage and younger age, and patients have many more years ahead of them and want their external body image to coincide with their internal image of themselves, said Fayanju. “We're better at catching breast cancer at a stage where it's curable and offering women help with their appearance,” she said.
However, surgeons need to manage patient expectations about reconstruction, noted Wallace. “It's a long process and complications can occur,” said Wallace. “If patients don't understand this, they can be very disappointed.”
Considering Patients' State of Mind
Doctors also need to consider a patient's state of mind when talking to them about surgery. Patients' reactions to their diagnosis and treatment may divert their focus away from the trade-offs of the procedure, said Katz. A strong emotional reaction may contribute to patients thinking that more treatment is better, while “less is more” has become a growing mantra among surgeons, he said. “Less burdensome surgery can yield the same survival benefit with less harm.”
Whether women decide to have a contralateral prophylactic mastectomy based upon the full amount of information they need is not entirely clear, said Katz. Most women who undergo surgery are not fully attentive to the procedure's benefits and potential harms.
Women may also choose more treatment because of anticipated regret, said Katz. This means women want to receive all therapies available today so they can avoid feeling regret about not getting enough treatment—if, at a later date—they are diagnosed with breast cancer again. “This focuses patients on the total threat of the disease, not on the net benefit of any given therapy.”
To help address patient emotions, physicians need “to embrace the science of cognitive and emotional psychology, and they aren't trained enough in these areas,” said Katz.
Consequently, he and his colleagues are determining how to better train doctors and are building tools for physicians and patients to use to slow the deliberation period down so they can both assess how emotional reactions are influencing decision-making. “We're seeking to re-engineer the training of medical oncologists and surgical oncologists in patient-centered communication,” Katz concluded, adding that this can ultimately help patients make more informed decisions.
Heather Lindsey is a contributing writer.