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Lack of patient knowledge may contribute to overuse of contralateral prophylactic mastectomy

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January 25, 2017

Many women decide to undergo contralateral prophylactic mastectomy despite having limited knowledge about the procedure and before completing discussions and evaluations with surgeons, according to results of a population-based study.

However, the use of contralateral prophylactic mastectomy among women without clinical indications appeared lower if a surgeon recommended against it.

Reshma Jagsi

“The study shows that many patients are considering contralateral prophylactic mastectomy after diagnosis of early-stage cancer in one breast, but many of these women have deficits in knowledge about the actual impact of the procedure and believe that it improves survival,” Reshma Jagsi, MD, DPhil, deputy chair of radiation oncology, University of Michigan School of Medicine, told HemOnc Today. “Very few patients received contralateral prophylactic mastectomy if they perceived their surgeons to have recommended against it, suggesting that improved communication between surgeons and patients may provide a mechanism to reduce overtreatment in this setting.”

One in six patients with breast cancer choose bilateral mastectomy despite the fact this “aggressive procedure” is not going to extend survival, Jagsi said. However, she understands how a patient might believe they are doing everything to avoid cancer by undergoing this procedure.

“At a time when emotions are running high, it’s not surprising that newly diagnosed breast cancer patients might find it difficult to absorb this complex information,” Jagsi said. “It seems logical that more aggressive surgery should be better at fighting disease — but that’s not how breast cancer works. It highlights the communication challenge that surgeons and patients face every day in the exam room.”

To determine what motivates a patient to make these surgical decisions and evaluate patient knowledge of the surgery overall, Jagsi and colleagues used the SEER registries of Los Angeles County and Georgia to administer surveys to 3,631 women diagnosed with early-stage breast cancer in one breast between July 2013 and September 2014. The survey included questions regarding their surgeon’s recommendation — or lack of one — and how this affected their decision on whether to remove the healthy breast.

Of the women, 2,402 (mean age, 61.8 years) who did not have bilateral disease and for whom surgery type was known were included in the final analysis.

Overall, 1,303 women considered contralateral prophylactic mastectomy, of whom 601 (24.8%) considered it very strongly. Of these women who considered the procedure, only 395 (38.1%) knew that the surgery does not improve survival for all women with breast cancer.

In total, 1,466 women (61.6%) underwent breast-conserving surgery, 508 (21.2%) underwent unilateral mastectomy and 428 (17.3%) underwent contralateral prophylactic mastectomy.

Sixty-five percent of patients did not have a high genetic risk or identified mutation; among these women, 598 (39.3%) reported their surgeon recommended against contralateral prophylactic mastectomy. Only 12 (1.9%) of these women still underwent contralateral prophylactic mastectomy.

However, 148 (19%) of 746 women who received no recommendation regarding contralateral prophylactic mastectomy underwent the surgery.

“When [the patients] do not perceive a surgeon’s recommendation against it, even patients without a high genetic risk for a second primary breast cancer choose contralateral prophylactic mastectomy at an alarming rate,” the researchers wrote, adding that this occurs in one in five patients.

Multivariate analysis showed younger age (OR per 5-year increase = 0.71; 95% CI, 0.65-0.77) and white race (black vs. white, OR = 0.5; 95% CI, 0.34-0.74) were associated with lower likelihood of undergoing contralateral prophylactic mastectomy, whereas high education level (OR = 1.69; 95% CI, 1.2-2.4), family history (OR = 1.63; 95% CI, 1.22-2.17) and private insurance (Medicaid vs. private insurance, OR = 0.47; 95% CI, 0.28-0.79) increased the likelihood.

“Our findings should motivate surgeons to broach these difficult conversations with their patients, to make their recommendations clear and to promote patients’ peace of mind by emphasizing how other treatments complement surgery to reduce the risk of both tumor recurrence and subsequent cancer development,” the researchers wrote.

The association between education level and condition-specific knowledge of contralateral prophylactic mastectomy is complex and should be adjusted per the input of the surgeon, although it may be difficult for a surgeon to decipher what role to play in the process, Oluwadamilola M. Fayanju, MD, MA, MPHS, and E. Shelley Hwang, MD, MPH, both from the department of surgery at Duke University Medical Center, wrote in an accompanying editorial.

“What is the surgeon’s responsibility, and how does he or she educate without condescension and empower with misdirection?” the researchers wrote, adding that a patient shouldn’t be discouraged from contralateral prophylactic mastectomy. However, surgeons must be involved in their patients’ decision-making and always provide the most accurate information about the benefits and risks, they added. – by Melinda Stevens

For more information:

Reshma Jagsi , MD, DPhil, can be reached at University of Michigan, UHB2C490, SPC 5010, 1500 E Medical Center Dr, Ann Arbor, MI 48109; email: rjagsi@med.umich.edu.

Disclosures: Jagsi reports no relevant financial disclosures. One researcher reports research funding from Ambry Genetics, Invitae, GeneDx, Genomic Health and Myriad Genetics. Fayanju and Hwange report no disclosures.

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PERSPECTIVE

Isabelle Bedrosian

With the increased use of bilateral mastectomy among women with unilateral breast cancer now well documented, and studies showing no OS benefit for this procedure also well documented, attention has now turned to investigating the factors that impact the decision to proceed with this aggressive operative strategy. Jagsi and colleagues confirm objectively what many surgeons recognize to be true from their practice: Women are well informed about the availability of bilateral mastectomy, with nearly half of women surveyed considering this option, but they are poorly informed about the risks and the oncologic outcomes of this choice.

Large majorities of women in this study who were considering contralateral prophylactic mastectomy did not know the impact of bilateral mastectomy on survival or were under the impression that survival was improved. Similarly, less than half the women considering contralateral prophylactic mastectomy understood correctly that this procedure had no bearing on their risk for recurrent disease.

This sizeable disconnect between patient knowledge and scientific data should be of great concern to the medical community. Many of our patients are making a potentially life-altering choice without being fully informed. There is great urgency, therefore, in addressing this chasm.

The good news — as Jagsi and colleagues report — is that active surgeon engagement can make a difference. Among the subset of women who reported that their surgeon recommended against contralateral prophylactic mastectomy, only 2% received this operation. In contrast, when the surgeon made no recommendation, one in five women opted for contralateral prophylactic mastectomy. Nearly half of the study subjects reported that their surgeon made no recommendation for or against this procedure. This, therefore, represents a sizeable opportunity for surgeons to make a positive impact in reducing use of contralateral prophylactic mastectomy by engaging and educating their patients.

It needs to also be acknowledged, however, that education and ensuring informed consent around the topic of contralateral prophylactic mastectomy is not straightforward — there are many oncologic considerations that need to be reviewed and discussed, such as contralateral prophylactic mastectomy and recurrence rates, risk for contralateral breast cancer, and contralateral prophylactic mastectomy and DFS and OS. These are complex topics, and effective communication of this information is likely to be facilitated with established communication tools, such as decision aids. Development of such tools, coupled with more active surgeon engagement on this topic may, as the data from Jagsi and colleagues suggest, provide a road map for the clinical community to reduce the current trends in contralateral prophylactic mastectomy use around the country.


Isabelle Bedrosian, MD, FACS
Nellie B. Connally Breast Center

The University of Texas MD Anderson Cancer Center

 Disclosure: Bedrosian reports no relevant financial disclosures.


PERSPECTIVE
Charles L. Shapiro

Charles L. Shapiro

Women with unilateral breast cancer, and without an inherited genetic predisposition (eg, BRCA mutation), are increasing opting for contralateral prophylactic mastectomy. As contralateral prophylactic mastectomy does not improve survival, the question, is why are these women subjecting themselves to an unnecessary surgery and overtreatment?

Jagsi and colleagues surveyed over 3,800 women between 2013 and 2014 who were diagnosed with early-stage unilateral breast cancer and underwent breast surgery reported to the SEER registry. The women were queried about their decisions to opt for contralateral prophylactic mastectomy, as well as the treating surgeon's recommendation.As a survey, it has built-in biases, such as who responds to survey and who does not; although, there was a relatively high rate of respondents (70%). Despite overwhelming evidence that contralateral prophylactic mastectomy does not improve survival, only about one-third of women were aware of this. In the end analysis, only 17% received contralateral prophylactic mastectomy, with the majority (61%) having breast-conserving surgery (BCS) and the rest (22%) a mastectomy. Younger age, family history, white race, private insurance and higher educational level all were statistically significant independent predictors of having contralateral prophylactic mastectomy. The rates of contralateral prophylactic mastectomy were higher if the surgeon made no recommendations.

What are the takeaway points from this survey? The majority of women received BCS, and the mastectomy rate was only one-third the BCS rate. The relative high BCS and lower mastectomy rate is following national guideline recommendations, and is good news. For those who received contralateral prophylactic mastectomy, there was a lack of education of women as to risks and benefits of contralateral prophylactic mastectomy (or the lack thereof regarding survival), but even more important was surgeons making a definite recommendation. The rate of contralateral prophylactic mastectomy was 2% if surgeons made a recommendation regarding contralateral prophylactic mastectomy, compared with 19% if they did not.

Although the optimal course is “shared” decision-making, physicians must make recommendations rather than leave it up to patients to decide. The lack of making a recommendation is, in my view, shirking one’s responsibility and often leads to suboptimal patient care.


Charles L. Shapiro, MD
HemOnc Today Editorial Board member

Dubin Breast Center

Tisch Cancer InstituteMount Sinai

Disclosure: Shapiro reports no relevant financial disclosures.


PERSPECTIVE

Alastair M. Thompson

The issue of who influences patient choice and decision-making in breast cancer and, particularly for prophylactic contralateral mastectomy (CPM) in women with early-stage breast cancer, remains contentious. In a retrospective survey approach to a selected population relying on each woman’s self-reporting of her treatment, the high response rate (70%) yielded what might be considered worrisome information.

Although clearly some surgeons provide information, which reduces the level of CPM to just 1.9%, for other women, the lack of information provided or their assimilation of such information led to a 10 times higher CPM rate — one in five women. Potential confounding factors, such as patient physique (size, shape, ptosis of the breasts) and surgical variables (expertise, clinical setting, demographics of the surgeons), were not captured by this study design.

However, the potential role for surgeons and the teams they work with to inform and influence patient decision-making regarding the extent and type of surgery at a vulnerable time is clear. Media portrayals and opinions abound, and not all are well informed. Exploring an individual woman’s options further through more than one consultation with surgical team members and providing information in a format that is appropriate for individual patients will likely lead to patient-centered choices. Such a choice may still be for CPM, but evidence from the published study suggests that well-informed women may choose differently.


Alastair M. Thompson, ALCM, BSc (Hons), MB ChB, MD, FRCSEd (Gen)

The University of Texas MD Anderson Cancer Center

Disclosure: Thompson reports no relevant financial disclosures.