Oral Presentation 2025 Joint Meeting of the COSA ASM and IPOS Congress

Radiotherapy for treatment of granulosa cell tumour of the ovary: working with an international team of consumers to build a database of treatment experiences. (126386)

Victoria White 1 , Linda Langdale 2 , Kim Eroh 2 , M K Ackermann 2 , Susan Rogers 2 , Tasha Amour 3 , Maria Alexiadis 4 , Tom Jobling 5 , Peter J Fuller 4 , Simon Chu 4
  1. Deakin University, Burwood, VIC, Australia
  2. GCT Survivor Sisters Facebook Group, Statesville,, North Carolina, USA
  3. Rare Ovarian Cancer Inc, Shellharbour,, New South Wales, , Australia
  4. Hudson Institute of Medical Research, Clayton, Victoria, Australia
  5. Monash Health, Melbourne, Victoria, Australia

Background/Rationale: Granulosa cell tumours (GCT) are a rare subtype of ovarian cancer. Optimal treatment is uncertain due to a lack of evidence from randomized trials. The role of radiotherapy is particularly unclear and recommendations differ between countries. Treatment decisions are complicated and women with GCT report looking for data to help. Through an ongoing collaboration with the multinational closed GCT Survivor Sisters (GCT-SS) Facebook group we responded to their call to provide a better understanding of radiotherapy in management of GCT.

Aim: To work with the GCT-SS group to develop and implement a survey to understand members experiences of radiotherapy. 

Methods: A cross-sectional survey study developed in collaboration with GCT-SS management team. GCT-SS members (≥18+ years, n=1800) were invited to complete an online survey assessing: i) diagnosis and treatment, ii) radiotherapy experiences, and iii) radiotherapy impact. Two open-ended questions allowed free-text responses about radiotherapy experiences.

Results: 1017 GCT members participated with most from the USA (62%) (UK:12%; EU: 12%; Canada: 5%; Aus/NZ: 5%). 67% were diagnosed post-2015 and 44% had recurrent disease. Radiotherapy was more common for recurrent (24%) than primary (3%) disease. Radiotherapy for recurrent disease differed by country (p=.015) (Canada (12%), UK (14%), EU (14%), Aus/NZ (36%), USA (26%)) and age (p=.02) (≥50: 29%; ≤50:19%). Of those who had completed radiotherapy and knew their tumour response, 84% reported tumour reduction. Five themes emerged from text responses: four positive (‘it worked’; ‘more tolerable’; ‘gave me back my life’; ‘gives hope’) and one negative reflecting severe side-effects.

Impact on Practice: Differential usage patterns suggest there may be opportunities for increased use of radiotherapy for recurrent GCT for some women.

Conclusions: As women mostly reported positive experiences, studies are needed to develop an evidence-base regarding the utility of modern radiotherapy technologies in managing primary and recurrent GCT.