Patient-reported disease-specific concerns relating to sexuality in multiple myeloma

Abstract Background: Cancer has been increasingly recognized as having lasting effects on sexuality. Sexual function in breast and reproductive cancer survivors is better characterized, but the experiences of hematological cancer survivors remain understudied. Only one previous study acknowledges the existence of sexuality concerns among multiple myeloma (MM) survivors. This study explored MM patients' experiences of sexual expression and examined patient-provider communication about sexuality. Methods: Participants with MM ( N = 65) were recruited internationally for an online survey about sexual experiences. Open-ended questions queried MM disease–specific experiences that may affect engagement in sexual activity, methods used to adapt to sexual changes, and communication with health care providers. Responses were analyzed using thematic content analysis. Results: Participants identified several barriers to sexual activity associated with MM, including concerns about bone health, infections, and vaginal bleeding and bruising. They also described adapting to sexual challenges by trying sexual medicines/aids, changing their mode of sexual expression, and managing treatment risks related to sexuality. Half of the participants reported sexuality discussions with providers, with a minority receiving sexual health-related recommendations. Conclusions: To date, the results of sexuality studies focus largely on hematological cancers as a group, without exploring specific disease experiences. Participants reported sexual difficulties common to other cancers but also some which may be unique to MM. Sexuality concerns were underaddressed by health care providers. Given that some sexuality concerns are related specifically to disease risk, discussions with oncology providers are of particular importance; therefore, specific suggestions for improving patient-provider communication and care are offered.