Abstract P1-12-05: A qualitative exploration of self-developed and peer-recommended techniques used by women with breast cancer to improve sexual functioning during and after treatment
Authors: von Hippel CD , Rosenberg SM , Jenkins MB , Weiss MC , Partridge AH 
Published: May 2019

Background: Coping with sexual dysfunction during and after breast cancer treatment is a persistent challenge for many women, even if clinicians offer standard sexual rehabilitative therapies (e.g. lubricants, counseling). This study sought to explore how women with breast cancer supplement clinician recommendations with self-developed and peer-recommended techniques for improving sexual function, what those techniques are, and how well they work.

Methods: We conducted a cross-sectional, online survey of 501 adult women with stage I-IV breast cancer who were members of the Breastcancer.org community. Open-ended survey items asked women to describe any techniques used to improve sexual function during and after breast cancer treatment beyond those recommended by clinicians. Closed-ended items asked women to assess the source and perceived efficacy of their techniques. We used qualitative content analysis to extract themes that described women's techniques and calculated frequencies in StataMP 15 to quantify sources and efficacy levels.

Results: Participants were, on average, age 53 (range 30-79) and 10 years from diagnosis. Most were partnered (90%), heterosexual (96%), with stage I/II disease (73%). 174/501 (35%) women reported using a sexual self-management technique they developed themselves or that was recommended by someone other than a clinician. Emergent themes in techniques included: 1) pain reduction: trial-and-error to find an effective lubricant or moisturizer (e.g. coconut oil), changing sex positions, choosing oral sex over intercourse 2) intimacy enhancement: open partner communication, planning sex 3) arousal enhancement: masturbation, erotica, vibrator use 4) emotional coping: adopting an attitude of persistence vs. acceptance of loss of sex life, encouraging partners to use sexual surrogates. 77 women developed the technique themselves, 54 with partners, 37 heard about it from survivors, 36 read about it online. 45% of women rated their techniques as moderately or more effective when used in addition to or instead of standard therapies offered by clinicians.

Conclusion: In a survey of an Internet-based community of women treated for breast cancer, women reported a variety of successful techniques for increasing intimacy and arousal, reducing vaginal pain, and coping emotionally with changes in sexual life after breast cancer. More women reported developing these techniques on their own or with partners vs. learning them from others. Given that standard therapies are often insufficient to manage sexual dysfunction during and after breast cancer treatment, clinicians should address sexual function during follow-up care and encourage women's safe experimentation with techniques for improving sexual function. Clinicians can refer patients to platforms like Breastcancer.org for peer-to-peer support and information exchange. Existing self-developed and peer-recommended techniques should be evaluated for safety, quality, and generalizability. Future research can then assess the effectiveness of particularly novel techniques as a complement to standard, clinician-developed therapies for the broader population of women with breast cancer experiencing sexual dysfunction.

Citation Format: von Hippel CD, Rosenberg SM, Jenkins MB, Weiss MC, Partridge AH. A qualitative exploration of self-developed and peer-recommended techniques used by women with breast cancer to improve sexual functioning during and after treatment [abstract]. In: Proceedings of the 2018 San Antonio Breast Cancer Symposium; 2018 Dec 4-8; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2019;79(4 Suppl):Abstract nr P1-12-05.