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The physician’s role in prophylactic mastectomy
As the procedure’s popularity increases among patients, physicians find themselves in a delicate position in the decision-making process.
During the last 40 years, researchers have demonstrated that prophylactic mastectomy — whether contralateral or bilateral — can reduce the risk for breast cancer occurrence in women at high risk by nearly 95%.
“Having a prophylactic mastectomy will significantly reduce the risk of getting breast cancer,” Todd M. Tuttle, MD, MPH, chief in the division of surgical oncology at the Masonic Cancer Center at the University of Minnesota, told HemOnc Today. “A lot of women will choose to have the procedure for that reason.”
The benefits of prophylactic mastectomy for women with BRCA1/2 mutations and those without are well documented, and patients today are more knowledgeable and optimistic about the procedure. However, the data on risk reduction, along with patient knowledge and satisfaction have led to an increase in the prevalence of the procedure. Consequently, such an increase may cause physicians to re-examine their role in the decision-making process.
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Photo courtesy of the Women’s College Research Institute |
HemOnc Today spoke with experts in the field of health care administration and health policy, surgical oncology and women’s cancers to better understand the issues affecting physicians.
In 1999, researchers from the Mayo Clinic reported that bilateral prophylactic mastectomy reduced the risk for developing breast cancer by 90% in women with a strong family history. Data from the retrospective study were published in The New England Journal of Medicine.
The study included 639 women with a family history of breast cancer that underwent bilateral prophylactic mastectomy. The women were stratified by moderate (n=425) or high risk (n=214). The researchers compared women at high risk with a control group of sisters (n=403) and used the Gail model to predict their incidence of breast cancer in the moderate risk group.
According to the model, with a median follow-up of 14 years, the predicted incidence for moderate-risk women was 37.4 breast cancers; however, four breast cancers actually occurred, resulting in an 89.5% risk reduction after prophylactic mastectomy (P<.001).
Breast cancer incidence among women at high risk was compared to controls: 38.7% of controls were diagnosed with breast cancer compared with 1.4% of high-risk women. Prophylactic mastectomy was associated with a 90% reduction in breast cancer incidence.
Although bilateral and contralateral prophylactic mastectomies are similar, the numbers and statistics are slightly different, Beth Virnig, PhD, associate professor and director of the Masters of Public Health Program in Healthcare Administration and Policy at the University of Minnesota, told HemOnc Today.
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In 2001, the same group of researchers analyzed the efficacy of contralateral prophylactic mastectomy in women with both a personal and family history of breast cancer. The study included premenopausal (n=388) and postmenopausal (n=357) women with a first breast cancer and a family history of breast and/or ovarian cancer. Participants had undergone contralateral prophylactic mastectomy at the Mayo Clinic between 1960 and 1993.
Using life tables for contralateral breast cancers, the researchers estimated the number of cancers expected in the cohort had they not undergone prophylactic mastectomy.
Among premenopausal women, six events were observed compared with an estimated 106.2, resulting in a 94.4% risk reduction (95% CI, 87.7%-97.9%). Similar results were observed among postmenopausal women: two contralateral breast cancers were reported compared with 50.3 predicted, resulting in a 96.0% risk reduction (95% CI, 85.6%-99.5%).
The risk reduction afforded by prophylactic mastectomy is similar for carriers of the BRCA1 and BRCA2 gene mutations.
Steven A. Narod, MD, FRCP, director of the Familial Breast Cancer Research Unit at the Women’s College Research Institute in Ontario, and colleagues conducted a historical cohort study to determine the efficacy of bilateral prophylactic mastectomy among women with BRCA1 and BRCA2 mutations.
The study, published in The Journal of Clinical Oncology in 2004, compared women who underwent bilateral prophylactic mastectomy (n=105) to matched controls (n=378). The researchers compared breast cancer incidence between the two groups.
At a mean follow-up of 6.4 years, two women with the gene mutations who underwent bilateral prophylactic mastectomy developed breast cancer compared with 184 controls. The procedure was associated with a 95% reduction in risk among women with prior or concurrent bilateral prophylactic oophorectomy and a 90% risk reduction in women whose ovaries were intact.
Prophylactic mastectomy prevalence
Although other options such as surveillance, tamoxifen and raloxifene are available to women at high risk for breast cancer, the prevalence of prophylactic mastectomies — both contralateral and bilateral — is increasing.
Virnig and Tuttle studied the prevalence of contralateral prophylactic mastectomy in a paper published in The Journal of Clinical Oncology in 2007. Using the SEER database, the researchers identified 152,755 women with stage I, II or III breast cancer. The rate of contralateral prophylactic mastectomy was determined as a proportion of all surgically treated patients and mastectomies between 1998 and 2003.
The researchers reported that 4,969 patients chose to undergo contralateral prophylactic mastectomy. The rate of contralateral prophylactic mastectomy for all surgically treated patients was 3.3%, and the rate for patients undergoing mastectomy was 7.7%. Between 1998 and 2003, the overall rate increased from 1.8% to 4.5%. The rate for contralateral prophylactic mastectomy for patients undergoing mastectomy increased from 4.2% in 1998 to 11.0% in 2003 (see chart on page 12).
In March 2008, a paper by Narod and his colleagues from the Hereditary Breast Cancer Clinical Study Group echoed Virnig and Tuttle’s findings: They reported that uptake of contralateral prophylactic mastectomy among BRCA1 or BRCA2 mutation carriers was 49.3% in the United States. The results of the multinational study were published in The Journal of Clinical Oncology.
When examining the rates of bilateral prophylactic mastectomy, however, Narod found that the procedure was not as popular in other countries as it was in the United States, despite the confirmed benefits to cancer risk reduction. The paper, published in The International Journal of Cancer in May 2008, reported that of 1,383 women without breast cancer with a BRCA1 or BRCA2 mutation, 18.0% had a prophylactic bilateral mastectomy.
“[The rates have probably] gone up a little bit; it’s edging up slowly, and the Canadian and American experience would probably show that about one-third of the women with the mutation are having a mastectomy,” Narod said.
Possible explanations for both the low rate and the climb are many, according to some experts. Provider factors, geographic variations, physician specialties, patient knowledge and anxiety are all potential aspects affecting the decision-making process, which, in turn, relate to prevalence.
“There are three kinds of women we see: those who have made up their mind and wish to have [prophylactic mastectomy], those who have made up their mind and are not going to have it, and those in between who require information, support and encouragement,” Narod said.
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Decision making: the physician’s role
Since genetic testing became available in the 1990s, physicians have had a better way of identifying those women at very high risk for breast cancer due to BRCA1 and BRCA2 genetic mutations. Though testing may not necessarily be standard of care, it is increasingly more common in community settings.
In a paper published in December 2008, Nancy L. Keating, MD, MPH, associate professor of medicine and health care policy at Harvard Medical School, and colleagues reported that BRCA1/2 testing was being successfully incorporated into community-based practices.
The researchers surveyed 1,050 physicians about what they would recommend to a 38-year-old woman who had completed child bearing and tested positive for the BRCA1 mutation. Six-hundred and eleven physicians responded and the researchers reported that about 61.4% would recommend bilateral prophylactic mastectomy.
“We wanted to understand more about who was recommending this procedure,” Keating told HemOnc Today. “We found that there was a bit of variation by specialty, with surgeons more likely and OB/GYNs and geneticists and other doctors a bit less likely to recommend prophylactic mastectomy. Medical oncologists were sort of in the middle.”
They also reported variability by geographic region: Experts in the Northeastern United States were less likely to recommend the procedure compared with their contemporaries in the South, Midwest and West.
“Some variations in care are explained by availability of doctors and availability of certain services,” Keating said. “But a lot is also explained by the way things are done where doctors had their training and the way things are done by their colleagues.”
These variations, however, play a role in not only the prevalence of prophylactic mastectomy but also the decisions made by patients. Such variations, as Keating put it, would hopefully depend more on the patient’s preferences than on the expert that patient happens to see.
A patient’s decision is also influenced by knowledge, both their own and that offered by their physician. According to some experts, tools such as the internet, which allow strangers to communicate via blogs and forums, supply patients with information about their options.
In a paper published in The Journal of the National Cancer Institute, Ann Geiger, MPH, PhD, associate professor in the department of social sciences and health policy in the division of public health sciences at Wake Forest University, and colleagues reported that almost half of women who underwent contralateral prophylactic mastectomy decided to do so on their own.
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The researchers surveyed women aged 18 to 80 years who underwent contralateral prophylactic mastectomy between 1979 and 1999 about their decision-making process. They received 562 responses, which revealed that 45% of participants made their decision on their own.
“If you think about our health care environment today, which is a little different than when these people were treated, these are the young, well-educated folks who are on the internet gathering information and showing up at their doctor’s office feeling very informed and very capable of playing an active role in their care,” Geiger told HemOnc Today.
According to some experts, like Tuttle and Virnig, there is difficulty in deciding whether to answer a patient’s questions or inform them, unprovoked, of their options.
“Should a physician initiate a discussion about whether or not [a woman with breast cancer] should have her other breast removed when she could be treated very well with just a lumpectomy? There is some controversy as to whether the physician should even present that as an option,” Tuttle said. “There is certainly a lot of stress around the time that women are diagnosed with breast cancer and to make a decision in a relatively short period of time, and that decision, if it’s a double mastectomy, is irreversible.”
Patient satisfaction
A number of studies are available that demonstrate patient satisfaction with their decision to undergo the prophylactic procedure. According to Virnig, very few surgeries of other types have the high satisfaction levels reported in the prophylactic mastectomy literature.
“This might be because they had the surgery and didn’t develop breast cancer; therefore the surgery worked without really being able to understand what might have happened if they hadn’t had the surgery,” she said. “It may be the anxiety; worrying about this is a big enough problem that it doesn’t matter what the effect was.”
According to a Swedish study published in The Journal of Clinical Oncology in August 2008, bilateral prophylactic mastectomy had no negative effects on anxiety, depression or quality of life among women who underwent the procedure.
The study included 90 of 98 consecutive women who had a bilateral prophylactic mastectomy followed by reconstructive surgery between 1997 and 2005. The researchers collected information on hospital anxiety, depression, body image and sexual activity before, then six and 12 months after the procedure.
The researchers reported a decrease in anxiety over time (P=.0004) with no difference in depression or health-related quality of life, except for a number of women who reported problems with body image one year post-mastectomy (self consciousness: 48%, feeling less sexually attractive: 48%, and dissatisfaction with scars: 44%).
“There’s an emotional side to what patients perceive their risk to be, in addition to the mathematical data we give them. All we can give them are statistics. We can’t say with 100% certainty that they’re not going to develop a second breast cancer; it’s just statistics,” Marlene Frost, RN, PhD, AOCN, from the Mayo Clinic Women’s Cancer Program, told HemOnc Today.
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Sexual pleasure was also rated lower one year post-procedure compared with before the mastectomy (P=.005). However, the researchers reported no difference in habit, discomfort or activity over time.
“It may be that reconstruction techniques may be better,” Virnig said. “I have no doubt that that is probably at least a bit of the story; so the price of doing this is different. That may be part of the reason we’re seeing this uptake in the use of prophylactic mastectomy because the safety, the cosmetic results and so on are improving.”
Narod agrees. According to him, providing patients with better reconstruction options that would better suit their expectations of having their breasts intact would increase uptake.
“Largely, many physicians don’t discuss it or don’t really provide enough information about it, so the women are discouraged from having it.”
But the most important piece to remember, according to Geiger, is that the decision to undergo a prophylactic mastectomy is a serious and permanent one that requires time, knowledge and patience.
“This is not a decision to be made in one office visit on the spur of the moment,” Geiger said. “There are a number of academic medical centers across the country that have clinics that specialize in caring for women at high risk for breast cancer. And a handful [of these clinics] probably have the most sophisticated programs for counseling those women and helping them make a decision. So for women who can access those, they are a good resource.” – by Stacey L. Adams
For more information:
- Brandberg Y, Sandelin K, Erikson S, et al. Psychological reactions, quality of life, and body image after bilateral prophylactic mastectomy in women at high risk for breast cancer: A prospective 1-year follow-up study. J Clin Oncol. 2008;26:3943-3949.
- Hartmann LC, Schaid DL, Woods JE, et al. Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancer. N Engl J Med. 1999;340:77-84.
- Keating NL, Stoeckert KA, Regan MM, et al. Physicians’ experiences with BRCA1/2 testing in community settings. J Clin Oncol. 2008;26:5789-5796.
- McDonnell SK, Schaid DJ, Myers JL, et al. Efficacy of contralateral prophylactic mastectomy in women with a personal and family history of breast cancer. J Clin Oncol. 2001;19:3938-3943.
- Metcalfe KA, Birenbaum-Carmeli D, Lubinski J, et al. International variation in rates of uptake of preventive options in BRCA1 and BRCA2 mutation carriers. Int J Cancer. 2008;122:2017-2022.
- Metcalfe KA, Lubinski J, Ghadirian P et al. Predictors of contralateral prophylactic mastectomy in women with a BRCA1 or BRCA2 mutation: The Hereditary Breast Cancer Clinical Study Group. J Clin Oncol. 2008;26:1093-1097.
- Nekhlyudov L, Bower M, Herrington LJ et al. Women’s decision-making roles regarding contralateral prophylactic mastectomy. J Natl Cancer Inst Monogr. 2005;35:55-60.
- Rebbeck TR, Friebel T, Lynch HT. Bilateral prophylactic mastectomy reduces breast cancer risk in BRCA1 and BRCA2 mutation carriers: The PROSE study group. J Clin Oncol. 2004;22:1055-1062.
- Tuttle TM, Habermann EB, Grund EH et al. Increasing use of contrlateral prophylactic mastectomy for breast cancer patients: A trend toward more aggressive surgical treatment. J Clin Oncol. 2007;25:5203-5209.