What I wish I’d known before surgery: BRCA carriers’ perspectives after bilateral salipingo-oophorectomy

We retrospectively studied BRCA carriers with a history of prophylactic bilateral salingo-oophorectomy (PBSO) regarding: (1) their post-operative symptoms, (2) their recollection of pre-operative conversations with their health care providers regarding possible surgical side-effects and (3) what information they would have found helpful to have before surgery. Female BRCA carriers seen through the Yale Cancer Genetic Counseling Program who had PBSO were invited to participate in a questionnaire that assessed their recall of information they received pre-operatively compared with their post-operative knowledge and symptoms related to menopause, cognitive changes, loss of fertility, cancer risks, osteoporosis, heart disease, vasomotor symptoms, urogenital symptoms, sexuality and body image. The questionnaire also elicited written feedback from participants regarding their decision to have PBSO, what they wished they had known before surgery, advice for other BRCA carriers considering this surgery and advice for health care providers who counsel women about PBSO. Two hundred and ninety female BRCA carriers were invited to participate and 113 (39.0%) indicated they were interested. Of those, 99 (87.6%) returned their questionnaire and 98 (86.7%) responses were included in the analysis. The mean age at PBSO was 45.5 years (range: 32–63 years). The five most common “frequent” or “very frequent” post-surgical symptoms were: vaginal dryness (52.1%), changes in interest in sex (50.0%), sleep disturbances (46.7%), changes in sex life (43.9) and hot flashes (42.9%). The majority of women would have found it helpful to have more information regarding the impact of this surgery on their sex life (59.2%), the availability of sex counseling (57.1%) and the risk of coronary heart disease (57.1%). This study illustrates that while health care providers are discussing selected side effects of PBSO, women undergoing this surgery have other concerns that should be addressed. This information provides insights into the informational needs of BRCA carriers considering PBSO.