Women diagnosed with breast cancer who chose contralateral prophylactic mastectomy reported improvement in psychosocial well-being and breast satisfaction, but “the magnitude of the effect may be too small to be clinically meaningful,” according to a study in the Journal of Clinical Oncology.1 “What this shows is removing a healthy organ doesn’t improve quality of life as much as women think that it might,” the study’s lead author E. Shelley Hwang, MD, MPH, was quoted in The Washington Post,2 one of several major publications covering the study. Dr. Hwang is Chief of Breast Surgery at Duke University Comprehensive Cancer Center, Durham, North Carolina.
Most women in the study who chose contralateral prophylactic mastectomy also opted for breast reconstruction, and these women reported higher breast satisfaction but “at the cost of lower physical and psychosocial well-being,” the authors reported. “If a patient chooses to remove both breasts and have reconstruction by taking tissue from one part of the body and using it to reconstruct another, there may be consequences from that, including long-term pain, numbness, or discomfort,” Dr. Hwang said in an interview with The ASCO Post. Although it is the patients’ responsibility to be informed of these issues, “as providers, we need to do our best to convey that there are trade-offs to the decision for contralateral prophylactic mastectomy and no significant benefit in terms of cancer outcomes. Their greatest risk still is from the cancer that they have, not the one that they may have in the future.”
Little Potential Cancer-Related Gain
“The 10-year risk of contralateral breast cancer is as low as 1% for some patients,” Dr. Hwang stated. Taking endocrine therapy as part of treatment for known breast cancer also “helps to reduce the likelihood of getting a contralateral breast cancer,” she noted. Despite the low risk of contralateral breast cancer, rates of contralateral prophylactic mastectomy have increased from 1.9% in all women undergoing mastectomy in 1998 to 11.2% in 2011.3
“Now that we are doing all these interventions for potentially very little cancer-related gain, in terms of mortality and morbidity from cancer itself, we have to start asking ourselves a lot more critically about the potential trade-offs, the potential downside in terms of quality of life,” Dr. Hwang stated. This study was designed to assess postoperative quality-of-life measures and determine whether they were affected by contralateral prophylactic mastectomy.
Army of Volunteers
The study involved 3,977 women with breast cancer who underwent mastectomy; 1,598 patients who had contralateral prophylactic mastectomy and 2,379 patients who did not. Among women for whom information on timing of contralateral prophylactic mastectomy was available, most had contralateral prophylactic mastectomy at the time of initial diagnosis and treatment, but “10.5% had contralateral prophylactic mastectomy at the time of recurrence or secondary diagnosis, defined as any report of new primary breast cancer diagnosis.” Analyses of data both including and excluding the 364 patients who chose contralateral prophylactic mastectomy after recurrence found no differences, showing the results are “generalizable to women who choose to have contralateral prophylactic mastectomy at a later date,” Dr. Hwang asserted. “Not all women choose to have a contralateral prophylactic mastectomy at the time they have their initial cancer treatment,” she remarked. “Some people think about it and then they have their contralateral prophylactic mastectomy at some other point in time. It can happen in many different settings at many different timing intervals.”
The study participants were recruited from the Army of Women, described by the authors as “a group of volunteers organized by the Dr. Susan Love Research Foundation to promote stakeholder participation in breast cancer research.” The authors pointed out that the women who participate in Army of Women are relatively affluent and well educated; “thus, it is not certain that these results would apply to a nonwhite, less-advantaged population.”
Most Probably Not BRCA Mutation Carriers
The mean age of patients was 57 years, but on univariate analysis, the women who chose contralateral prophylactic mastectomy were younger, 53.7 vs 59.2 years for those who did not choose contralateral prophylactic mastectomy. “On multivariate logistic regression, older age remained significantly associated with a lower likelihood of undergoing contralateral prophylactic mastectomy,” the authors noted.
The study did not differentiate between women who had and did not have BRCA mutations. “Most of them were probably not BRCA mutation carriers,” Dr. Hwang revealed, “because in national samples, less than 10% of women who choose to undergo contralateral prophylactic mastectomy are actually known to be BRCA mutation carriers.”
The median time between surgery and survey completion was 4.6 years, although it was shorter among women having than not having contralateral prophylactic mastectomy (3.8 years vs 5.5 years). Therefore, all study participants underwent their surgical procedures before Angelina Jolie’s decision to have contralateral prophylactic mastectomy based on her known genetic mutations and family history of breast cancer. As a result of the widespread reporting of that decision, the proportion of women choosing to have contralateral prophylactic mastectomy “is even greater,” Dr. Hwang said, “which is why it is important to put these data out there.”
Higher Scores With Reconstruction
The women “took an electronically administered survey, which included the BREAST-Q, a well-validated breast surgery outcomes patient-reporting tool, and demographic and treatment-related questions,” the authors explained. The survey measured four domains to BREAST-Q outcomes: psychological well-being, physical well-being, sexual well-being, and breast satisfaction. The breast satisfaction domain “poses questions related to satisfaction with breast symmetry, appearance, feel, fit in a bra, and look in and out of clothing.”
The mean scores in all BREAST-Q domains were higher for women who had breast reconstruction, whether or not they also had contralateral prophylactic mastectomy. A total of 1,217 women chose not to have reconstruction—889 who did not have contralateral prophylactic mastectomy and 328 who did. “Among women who did not elect reconstruction, contralateral prophylactic mastectomy conferred no significant differences in any of the BREAST-Q domains. However, among those who had breast reconstruction, contralateral prophylactic mastectomy was associated with a higher breast satisfaction score (62.0 vs 59.9, P = .0043) at the cost of lower physical well-being (74.5 vs 76.8, P < .001) and lower psychosocial well-being (71.7 vs 73.9, P = .0051),” the researchers reported.
Psychosocial well-being improved over time regardless of having or not having contralateral prophylactic mastectomy. “There was no evidence of increased breast satisfaction over time in either group,” the investigators stated.
Gains Mitigated With Radiation
A subset analysis of only those women who had reconstruction revealed that for women who did not have radiation, contralateral prophylactic mastectomy was associated with higher breast satisfaction but lower physical and psychosocial well-being for women, as in the overall group. “However, the advantage of contralateral prophylactic mastectomy was mitigated among women who had radiation,” the authors wrote. Those women reported lower scores in all domains.
Dr. Hwang noted that “probably about one-quarter to one-third” of patients choosing contralateral prophylactic mastectomy and reconstruction will also require radiation. Although it is sometimes possible to do the radiation therapy before reconstruction, “once the skin has been radiated, you can’t expand the chest wall or the skin, so that reduces the options you have,” Dr. Hwang said. For many patients, she added, waiting until after the radiation is completed to have reconstruction would mean “they are often not candidates for an implant reconstruction. They would need tissue reconstruction.”
Although it is not always possible for physicians to know whether a patient will need radiation following contralateral prophylactic mastectomy and reconstruction, in most cases, “we would have a pretty good idea of whether radiation was going to be recommended,” Dr. Hwang said. But it also “happens not infrequently,” she added, that a woman might have reconstruction and find out only later that she needs radiation.
Major and Minor Complications
There was a significant reduction in all quality-of-life domains when patients had either major or minor surgical complications. Dr. Hwang noted that women who undergo contralateral prophylactic mastectomy and reconstruction might report “neuropathy, pain, numbness, nonhealing wounds, or complications that they can get from just having had multiple surgeries. The pain and the paresthesia can be quite long-lasting.”
She acknowledged, however, that little is known about what women experience after contralateral prophylactic mastectomy and reconstruction, “because we haven’t had the opportunity to ask these questions to thousands of women before. It seems crazy, but it just hasn’t happened.”
“We are just starting to see these data,” she continued. “If you look critically, up to about one-third of women have chronic pain after these sorts of procedures. It is worth informing the patients that that’s the case. They may not be in that third, but I think it is still important to allow patients to have some understanding of what to expect after the surgery. It may not change the decision they make, but at least it will be a more informed decision.”
Assessing the Trade-Offs
An article in The New York Times on the study focused on a woman who, although not regretting her decision to have contralateral prophylactic mastectomy and breast reconstruction, wished she had been told ahead of time “that the process of reconstruction would drag on for 5 months and leave her forever unable to sleep on her stomach. Or that it would leave her with no sensation ‘from the front all the way to the back of the entire bra area.’”4
In this article, Dr. Hwang said, “One patient said she couldn’t feel hugs anymore when she snuggled up to her kids. That really affected me.”4
Assessing the trade-offs of contralateral prophylactic mastectomy and reconstruction is a very individual process. “For some patients, absolutely it is worth the trade-off and more. Others wish they had known that there was that trade-off before making that decision,” said Dr. Hwang. “I have to say that some of my happiest patients are those who have had mastectomy and have not had reconstruction, and it doesn’t significantly bother them. They have the fewest complications, because they haven’t had any reconstruction. It gets back to a philosophical thing, which is that anxiety or happiness aren’t things that are surgically remedied.
Breast Surgeons Are Worried
“Breast surgeons as a community are worried about women using this kind of surgery to alleviate anxiety,” Dr. Hwang stated in The Washington Post article about the study.2 “Surgery is meant to cure a biological problem, not make people feel less anxious.”
“The American Society of Breast Surgeons has been taking a leadership role” in addressing the issue of the increasing rate of contralateral prophylactic mastectomy, Dr. Hwang told The ASCO Post. “Several professional organizations are also taking a strong stance that we need to be informing our patients better about this choice and the consequences of it,” she added.
The study was funded in part by a grant from the Plastic Surgery Foundation. Asked whether that had any impact on how the findings are being perceived, Dr. Hwang replied no. She explained that the recently reported findings come from an unplanned secondary analysis of a study “looking at the patient-reported outcomes after different kinds of breast surgery, including reconstruction, which is why they were interested in the subject.” ■
Disclosure: Dr. Hwang reported no potential conflicts of interest.
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