Taking their wellbeing into their own hands: Self-educated and peer-recommended techniques used by women with breast cancer to improve sexual functioning during treatment and in survivorship

OBJECTIVE: Coping with sexual dysfunction during and after breast cancer treatment is a persistent challenge for many women, even with clinician-offered standard sexual rehabilitative therapies (i.e., lubricants, counseling). This study sought to explore how women with breast cancer supplement clinician recommendations with self-discovered and peer-recommended techniques for improving sexual functioning and provide insight into how well they work. METHODS: Adult women with stage I-IV breast cancer were recruited to participate in a one-time online survey via Breastcancer.org. Thematic analysis identified emergent domains and themes focused on techniques for improving sexual function during and after treatment. Frequencies were calculated to quantify technique sources and perceived efficacy levels. RESULTS: Of 501 women responding to the survey, mean age was 53 years (range 30–79). Overall, 34.7% reported using a technique they discovered themselves or that was recommended by someone other than a clinician to improve sexual functioning. Four main themes regarding techniques included: 1) pain reduction, 2) intimacy and relationship enhancement, 3) desire and arousal enhancement, and 4) emotional coping. Most women discovered coping techniques without the help of clinicians, and 45.7% of women rated their techniques as moderately or more effective when used in addition to or instead of standard techniques offered by clinicians. CONCLUSIONS: Our study provides insight into how women with breast cancer successfully cope with sexual dysfunction symptoms during and after treatment. To fully understand and share patients’ innovative techniques for coping with these symptoms, clinicians should foster open discussion about the potential for dysfuction and treatment for these symptoms, as well as avenues of peer-supported discussion to promote coping self-education and discovery.