Optimizing shared decision-making for risk-reducing mastectomy in women with Li-Fraumeni syndrome using patient-reported outcome measures.

Decisions regarding risk-reducing mastectomy (RRM) in women with Li-Fraumeni Syndrome (LFS) are challenged by unclear survival benefits and potential quality of life (QOL) impacts. We evaluated QOL in LFS women and identified factors associated with QOL outcomes in those who received RRM. LFS women from a single institution cohort between 2012 and 2022 were identified and BREAST-Q surveys were administered. Scores were compared according to the choice of RRM or surveillance and factors associated with differences in QOL outcomes in patients submitted to RRM were identified. Among 90 women, 37 (41%) chose surveillance and 53 (59%) underwent RRM. Compared to surveillance, RRM women had worse satisfaction with breasts (p = 0.05) and physical well-being (p < 0.01) scores. RRM ≤ 30 years was associated with worse psychosocial well-being (p = 0.05). Women with no cancer and breast cancer only had worse sexual health than those with other malignancies (p = 0.02). Sentinel lymph node biopsy (SLNB) at RRM was associated with lower psychosocial (p = 0.05) and satisfaction (p = 0.01) scores. Implant-based was superior to autologous reconstruction in sexual well-being (p = 0.05). Surgical complications resulted in worse sexual (p = 0.05) and physical (p = 0.04) outcomes, while additional reconstructive surgery resulted in worse psychosocial (p = 0.01), sexual (p < 0.01), and physical (p < 0.01) well-being. RRM resulted in worse satisfaction with breasts and physical well-being than surveillance. Age at RRM, oncological history, financial status, SLNB, surgical complications, and additional breast reconstructive surgery were associated with differences in QOL in women with RRM. These findings add valuable insights for breast cancer risk management in LFS women.