Genitourinary syndrome of menopause after breast cancer: women's perception in ITAC, a French web-based survey

Objective: To describe frequency, intensity and impact of genito-urinary syndrome of menopause (GUSM) in breast cancer (BC) survivors receiving hormonotherapy (HT). Methods: Web-based survey hosted on the Seintinelles website (database of patients and caregivers). Specific questionnaire of 43 questions, including sociodemographic characteristics, history of BC, characteristics of HT, side effects other than GUSM, symptoms of GUSM (frequency, intensity, treatment, and impact) and overall expectations regarding treatment. Results: Among 1,157 participants, 96.4 % had at least one GUSM symptom. Percentages with at least one urinary, gynecological, or sexual symptom were 56.0 %, 85.6 % and 86.1 % respectively while 70.3 % and 10 % declared at least 5 and 10 symptoms respectively. Mean (SD) and median (range) numbers of symptoms were 5.9 (2.8) and 6 (0-14) respectively. Most frequently reported symptoms were decreased desire (77.8 %), decreased arousal (71.4 %), and vaginal dryness 68.4 %). On a scale from 0 (no impact) to 10 (maximal impact), the most important impact was reported for sexual life (mean: 6.6 ± 3.5) followed by psychological condition/self-image (mean 5.4 ± 3.1), and relations with partners (mean: 5.1 ± 3.4). Only 13.6 % of participants had received information on GUSM prior to the survey. Conclusions: GUSM remains underdiagnosed and underestimated in BC survivors who receive HT, although it is among most frequent and disabling side effects of HT. Awareness should be increased among physicians, along with information to women. Early detection and treatment of symptoms and prophylaxis of GUSM in at-risk women should be implemented.