Long-Term Young Adult Cancer Survivors with Ovarian Cancer: Subgroup Analysis of the Study "Expression VI-Carolin Meets HANNA-Holistic Analysis of Long-Term Survival with Ovarian Cancer": The International NOGGO, ENGOT, and GCIG Survey.
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BACKGROUND/OBJECTIVES: Ovarian cancer is typically diagnosed in postmenopausal women, so there are limited data available for young adult cancer survivors (YACS). The aim was to assess the patient perspective of YACS. METHODS: In this international and multicenter cross-sectional survey study, patient history, long-term side effects, and patient perspective were assessed. Long-term survival was defined as survival of at least five years after cancer diagnosis. Two groups were defined: (1) 18-40 years and (2) ≥41 years. RESULTS: Altogether, 1833 long-term survivors (LTS) have been recruited, with 1771 patients ≥41 years and 62 patients 18-40 years at recruitment. FIGO stages were similar; among the patients, 99.0% had received primary surgery followed by chemotherapy in 90.3%. Almost 50% still experienced long-term side effects. Patients ≤ 40 years reported more frequently not only gastrointestinal symptoms such as nausea/vomiting (44.4%, p = 0.01), bloating (59.3%, p = 0.038), and constipation (60%, p = 0.015) but also depression (31.4%, p = 0.02), lymphedema (45.3%, p = 0.026), and concentration difficulties (30.6%, p = 0.002). Distress levels were also higher in YACS, especially concerning insurance/finances, work/school, child care, worries, and sadness. Polyneuropathy and secondary cancer were the only side effects that were more frequent in the elder cohort (polyneuropathy: 20.3% vs. 4.3%, p = 0.002, and secondary cancer: 8.4% vs. 0%, p = 0.014). YACS were more physically active (p = 0.003) and interested in studies about long-term cancer survivorship in 87.2%. CONCLUSIONS: Long-term side effects are equally common in YACS after ovarian cancer, but with a focus on practical problems, mental health, gastrointestinal problems, and sexuality. This knowledge should be incorporated into follow-up care of ovarian cancer patients in order to improve quality of life.