We commend the American Society of Breast Surgeons (ASBrS) for addressing the complex issue of contralateral prophylactic mastectomy (CPM) with a thorough review of the data and a well-balanced consensus statement.1 We are concerned, however, that the discussion guide for shared decision making does not achieve the authors’ stated goal of considering “the patient’s preferences and values and an informed discussion of the risks and benefits of CPM.”2 None of the talking points guide the provider in eliciting a patient’s preferences and values. Also, only one talking point includes a potential benefit of CPM (that women who undergo CPM will not need mammograms or routine breast imaging for cancer screening after surgery), whereas the remaining talking points focus on the harms and limitations. Overall, the selection and framing of many of the discussion points are intended to discourage CPM (a stated goal) rather than provide a neutral overview of the individualized potential risks and benefits of CPM.

Shared decision making has been defined as a collaborative process that allows patients and their health care providers to make well-informed decisions together with the goal of achieving outcomes that matter most to the patient.3 Well-designed patient decision aids have been shown to enhance patient knowledge and improve the quality of these decisions, including decisions about breast cancer surgery.4,5 A systematic Cochrane Review found that compared with standard care, patient decision aids can enhance patient understanding, including substantial improvement of perceived personal risk, and lead to a better match between values and choices, with no or minimal effect on anxiety, depression, regret, consultation length, or health-related quality of life.6

The International Patient Decision Aids Standards (IPDAS) Collaboration has established a framework for improving the content, development, implementation, and evaluation of patient decision aids, including checklists, tools for evaluation, and minimal standards.7,8 Their framework calls for a systematic development process using up-to-date evidence, balancing presentation of information and options, clarifying values and preferences, and measuring effectiveness.

We encourage the ASBrS to facilitate shared decision making by engaging a multidisciplinary group of experts and applying the IPDAS framework to strengthen and evaluate their discussion guide. We also suggest specific ways to improve several points in the ASBrS discussion guide, presented in Table 1. For example, it would be helpful to include information about absolute risk9 for surgical complications and for contralateral breast cancer after CPM, as well as more recent data on quality of life after CPM.10 – 12 In addition, women should be provided with information about breast reconstruction options13 and should be encouraged to consult with a reconstructive surgeon1 to ensure that they are better informed about the potential benefits and risks of reconstructive procedures before making a final decision. Recent studies that collected patient-reported outcomes (PROs) using a well-validated, breast surgery-specific instrument (BREAST-Q)14 demonstrate that breast reconstruction can improve women’s satisfaction as well as their psychosocial, physical, and sexual well-being after mastectomy.15 – 17

Table 1 Suggested modifications to the ASBrS discussion guide for contralateral prophylactic mastectomy (CPM)
Full size table

In summary, we agree with the consensus statement that CPM should not be routinely performed in the absence of evidence for a survival benefit. But mortality is not the only oncologic outcome that concerns women.18,19 Imaging surveillance has limitations and can be very stressful. Furthermore, a diagnosis of contralateral breast cancer may trigger a new round of treatment with all the associated short- and long-term effects on health and quality of life, including renewed anxiety about additional recurrences. A pilot test of one decision aid for CPM showed significantly increased patient knowledge but not a reduction in the rate of CPM.20 For some women (e.g., a young healthy woman with early-stage cancer who has experienced significant difficulties with breast cancer screening due to dense tissue or other factors), the risk-benefit tradeoff for CPM may align well with their personal goals, values, and preferences. When making life-altering treatment decisions, those preferences should factor into a well-informed decision-making process.21