Experiences of radiotherapy for treatment of Granulosa Cell Tumor of the ovary: insights from the GCT-survivor sisters

BACKGROUND: Optimal treatment of ovarian Granulosa Cell Tumors (GCT) is uncertain due to a lack of evidence from randomized trials. The role of radiotherapy is unclear and recommendations differ between countries. Through an ongoing collaboration with the multinational closed GCT Survivor Sisters (GCT-SS) Facebook™ group (membership n = 1800) we developed a survey to understand members' experiences of radiotherapy. METHODS: GCT-SS members (≥18+ years) were invited to complete the survey assessing i) diagnosis and treatment, ii) radiotherapy experiences and iii) radiotherapy impact. Two questions allowed free-text responses about radiotherapy experiences. Country of residence was assessed (USA, Canada, United Kingdom (UK), European Union (EU), Australia/New Zealand (Aus/NZ); Other). Logistic regression examined factors associated with radiotherapy. RESULT: Surveys from 1017 members (96 % Adult-GCT) are analysed. Respondents were mostly from the USA (62 %), diagnosed post-2015 (67 %), and 44 % had recurrent disease. Overall, 12 % of respondents reported radiotherapy (9 % received, 3 % planned), mostly for recurrent (23 %) disease. In univariate analyses, radiotherapy for recurrent disease differed by country (p = .019) (Canada (12 %), UK (14 %), EU (14 %), Aus/NZ (36 %), USA (25 %)); age (p = .02) (≥50 (26 %) ≤50 (17 %)) having chemotherapy (p = .019) and hormonal therapy (p < .001). Analyses of open-ended questions found five themes: four positive (it worked; easier than other treatments, gave me back my life, gives hope) and one negative reflecting severe side-effects. CONCLUSIONS: Radiotherapy for GCT is not common and reflects treatment recommendations in different countries. As women mostly report positive experiences, studies are needed to develop an evidence-base regarding its optimal timing and sequencing in managing GCT.