Understanding patient priorities: Sexual health and hereditary ovarian cancer syndromes

Patients with hereditary breast and ovarian cancer syndromes are frequently recommended risk-reducing salpingo-oophorectomy years before natural menopause. While effective in reducing cancer-related morbidity and mortality, salpingo-oophorectomy increases the risk of sexual dysfunction. This study explores patient experiences and perspectives on integrating sexual health support within hereditary cancer syndrome care.

From 02/2023-11/2023, we conducted a cross-sectional survey study at a gynecologic oncology clinic. Patients at increased genetic risk for breast and ovarian cancer completed a 26-question survey adapted from previous literature. Descriptive and univariate analyses were performed.

Of 81 patients approached, 75 (93 %) participated. Median age was 42 years (IQR 13.5); 46 (61 %) had prior risk-reducing surgery, and 22 (29 %) had history of breast cancer. Sixty-six (88 %) reported that sexuality and intimacy were important and 57 (76 %) felt these issues should be addressed by the healthcare team. Sixty (80 %) preferred discussing sexual health with a physician. Patients welcomed discussions at multiple timepoints, including before risk-reducing surgery (46, 61 %) and during follow-up (67, 89 %). Twenty-six (35 %) felt it was too overwhelming to address sexual health at the time of pathogenic variant diagnosis. Key interests included consequences of risk-reducing treatments (58, 77 %) and strategies for maintaining sexuality and intimacy (49, 65 %).

Sexual health is a significant concern for patients with hereditary breast and ovarian cancer risk. Most prefer physician-led conversations throughout different stages of care. These findings underscore the importance of a proactive, patient-centered approach to sexual health communication in this population.