Long-term quality of life in non-epithelial ovarian cancer survivors: TMRG-GINECO-Vivrovaire rare tumors case–control study

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BACKGROUND: Patients treated for rare ovarian germ cell tumors (GCT) and sex cord stromal tumors (SCST) often experience long-term survival. Treatments include surgery with or without chemotherapy (CT), which can cause late side effects that negatively impact quality of life (QoL). This study assessed long-term QoL among GCT and SCST survivors compared to age-matched healthy women (HW), focusing on patients treated with CT. METHODS: Cancer-free GCT and SCST survivors (≥ 2 years post-treatment) were recruited from the INCa French Network TMRG. HW were recruited via the "Seintinelles" platform. Participants completed validated questionnaires assessing QoL (FACT-G/FACT-O), fatigue (MFI), anxiety/depression (HADS), insomnia (ISI), neurotoxicity (FACT/GOG-NTX), cognition (FACT-COG), and sexuality (FACT-O OCS). Clinically relevant differences were defined as ≥ 5% between groups. RESULTS: A total of 144 survivors (99 GCT and 45 SCST) were included and compared with 284 matched HW (median age: 35.2 years). The median time from the end of treatment was 6 years [Q1 3.5-Q3 9.3]. At inclusion, 42% of patients were menopausal compared to 17% of HW (p < 0.001), with reduced sexual QoL. Survivors reported more cognitive impairment (32% vs. 21%, p = 0.025) and severe neurotoxicity (23% vs. 8%, p < 0.001). QoL, fatigue, anxiety/depression, and insomnia scores were similar for patients and HW. CONCLUSIONS: With a median of 6 years after CT, most GCT and SCST survivors reported similar overall QoL compared to HW but faced premature menopause, reduced sexual QoL, and persistent cognitive and neurotoxic effects. TRIAL REGISTRATION NUMBER: NCT03418844.

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