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12132 Background: Sexual health is a prevalent and distressing toxicity in women after cancer treatment. Sexual health needs and treatment require multidisciplinary management and despite the existence of guidelines on the management of sexual health, are often overlooked in the clinical setting. Methods: An anonymous online survey regarding sexual health for people with a current or prior breast cancer diagnosis was distributed through a social media platform (Instagram) and e-mail. Questions included demographics, breast cancer history and treatment, sexual health symptoms, and experience with medical care for sexual health symptoms. Results: Out of 1775 respondents, 1462 answered the question of whether or not sexual health changed after breast cancer diagnosis or treatment & were included in this analysis. Mean age: 47.7 years. 87.3% of respondents identified as white and 1.6% as Black. Stage: 0 (8.5%), 1 (38.4%), 2 (34.2%), 3 (14.8%) & 4 (2.9%). Estrogen receptor positive (81.5%), HER2 positive (27%), triple negative (12.9%). Breast cancer diagnosis or treatments caused a moderate to great deal of change to sexual health in 89.5% of respondents and a moderate to great deal of distress in 85%. The sexual health concerns are summarized in the table. 73% of participants did not receive information about sexual health from their healthcare team. Among participants who reported a change to sexual health, only 12% were satisfied with how their sexual health concerns were addressed. Treatment was not offered for sexual health concerns to 39% of respondents and 63% had not been referred to any specialists for sexual health concerns. 46% of participants had not been offered non-hormonal treatments for genitourinary concerns, 55% were told vaginal hormones were not an option, and 83% were not offered treatment for low libido despite lower sexual desire. 80% of respondents received information about sexual health from social media. Of those, 62% stated that their primary source of information on social media were health care professional accounts. Conclusions: In this online survey, sexual health concerns were highly prevalent and distressing after breast cancer diagnosis. There was a very low level of discussion with medical professionals and treatments were infrequently offered to patients, despite the existence of medical guidelines on sexual health care for women after cancer. Patients are turning to social media, & specifically to medical professional accounts, for information. Future efforts to address sexual needs for breast cancer survivors and thrivers are warranted. Table: see text
Agrawal et al. (Sat,) studied this question.