Factors Affecting Informed Decision-Making in Women with Increased Breast Cancer Risk or DCIS Pursuing Contralateral Prophylactic Mastectomy

Abstract

Abstract Despite lack of survival benefit, an increasing number of women diagnosed with ductal carcinoma in situ (DCIS) opt for removal of the unaffected breast in addition to the breast with known pathology, i.e. contralateral prophylactic mastectomy (CPM). Little is known about women's decision-making processes that contribute to this rising trend, particularly for DCIS. Further obscuring the decision is the highly variable terminology used to discuss breast cancer pathologies and treatments. The purpose of this study was to investigate factors impacting risk comprehension and decision-making related to increased risk for breast cancer or DCIS. We conducted a retrospective and prospective pilot study to evaluate women's perceived contralateral breast cancer risk, health literacy, numeracy, and comprehension of terms used in genetics and breast cancer. Clinical data such as breast MRI, genetic testing, family history, and breast cancer risk derived from predictive models were also collected. Women with DCIS and those high-risk for development of invasive breast cancer were eligible, and 68 patients participated. Of the cohort, 33 (48.5%) women considered pursuing CPM and 11 (16.2%) underwent CPM. Anxiety about cancer recurrence was the top reason for considering CPM. Undergoing CPM was significantly associated with plastic surgery consultation, increased 10-year breast cancer risk, genetic counseling, and genetic testing. The consideration of CPM was also associated with higher incomes. Numeracy, health and genetic literacy, and terminology scores were not significant predictors of CPM. Lastly, 83.8% of respondents stated DCIS qualified as breast cancer, but only 39.7% of patients correctly defined DCIS. When asked to interpret the phrase “indolent lesion of epithelial origin” (new terminology advocated to replace “DCIS”), 27.9% of respondents believed it referred to cancer, 47.1% did not, and 23.5% were unsure. Patients commonly thought “lesion” meant “skin wound” or “sore”. Decision-making related to DCIS remains complex. Although CPM has not shown a survival advantage and can have significant complications, CPM rates continue to rise. Recognizing patients' knowledge of risk communication and terminology is vital to support shared and informed surgical decisions.