Only 34.0% of surveyed Japanese BRCA1/2 carriers received information on post-RRBSO sex life, and cultural taboos hinder direct discussion with healthcare providers, highlighting the value of pamphlets and digital resources for couples.
Only 34.0% of participants received information about post-RRBSO sex life from healthcare providers.
Three themes emerged from thematic analysis of participant experiences communicating with healthcare providers about sex life after RRBSO.
Cultural taboos in Japan hinder direct discussion of sexual health between patients and healthcare providers, leading to a preference for indirect sources of information.
Digital pamphlets and paper materials were identified as preferred tools for delivering information about post-RRBSO sexual health.
Partners of BRCA1/2 carriers were identified as also needing information about post-RRBSO sexual health.
Research on sexual health communication after RRBSO in Asian populations is limited, and this study is among the first to address this gap in Japan.
This research suggests that the large majority of Japanese women who carry BRCA1/2 gene mutations — which raise their risk of breast and ovarian cancer — are not receiving information from their doctors or nurses about how their sex lives may change after a preventive surgery to remove the ovaries and fallopian tubes (called RRBSO). In this study, only about one-third of the 50 participants said they had been given any such information, even though this surgery causes immediate surgical menopause and can significantly affect sexual function and intimacy. The study found that cultural norms in Japan make it difficult for patients to bring up sexual topics directly with healthcare providers. Patients described feeling hesitant to ask questions about sex, and some felt that explanations from providers who had not personally experienced the surgery were unhelpful. Importantly, participants said that their partners also needed to receive information about these changes, not just the patients themselves, suggesting that sexual health after RRBSO is a couple-level concern. This research suggests that written materials — both printed pamphlets and digital formats — may be more effective than direct conversations for delivering sensitive sexual health information in this cultural context. The authors created a pamphlet based on patient experiences, and participants responded positively to it. These findings point to a gap in standard pre-surgical counseling in Japan and suggest that healthcare systems serving BRCA1/2 carriers should consider providing accessible, culturally appropriate educational resources about sexual health to patients and their partners before surgery takes place.
Matsukawa M, Habano E, Torishima M, Dazai M, Hirata M, Kosugi S. (2025). Communication Between Japanese Patients With Hereditary Breast and Ovarian Cancer and Healthcare Providers on Sexual Health After Risk-Reducing Bilateral Salpingo-Oophorectomy.. Psycho-oncology. https://doi.org/10.1002/pon.70212