Patient voices change guidance for GCT monitoring
How patient-led research contributed to new findings and changes to Granulosa Cell Tumour monitoring.
What is Granulosa Cell Tumour (GCT)?
Granulosa Cell Tumour is a rarer form of ovarian cancer. The ovaries are made up of three different types of cells: epithelial cells, covering the surface, germ cells from which ova (eggs) develop, and sex-cord stromal cells which provide supportive tissues and are responsible for producing hormones. GCT are sex-cord stromal tumours. As well as the BEAT signs and symptoms of ovarian cancer, someone diagnosed with GCT might also experience changes to their periods, or bleeding if the have already had their menopause.
Patient-led research
Knowing that diagnosis and treatment for GCT can vary greatly across the UK, we worked together with GCT Survivor Sisters UK: a patient led group based on Facebook. Together we surveyed 111 members to ask about their perspective of being diagnosed with, and monitored for, granulosa cell tumour.
Most people are diagnosed with GCT when they have a tumour contained within the ovary (stage 1) which means their cancer can be removed through surgery. If the disease is more advanced more treatment after surgery might be needed. You can read more about GCT in our rare ovarian tumours booklet .
For many with this rarer form of ovarian cancer, Inhibin A and B and AMH markers are the most effective tests. At the British Gynaecological Cancer Society’s 2024 Annual Scientific conference, we presented a poster alongside Linda Langdale and Suzanne Love, both patient advocates involved in the research from the UK GCT Survivor Sisters group.
Findings and Impact
The research found a wide variation in patient experience across the UK and delays in receiving results for Inhibin markers, which increases anxiety among many. In some instances, patients are self-advocating for, or self-funding, tests.
Our research contributed to changes in the British Gynaecological Cancer Society’s ovarian, tubal and primary peritoneal cancer guidelines: Recommendations for practice update 2024, which now includes a section on follow-up of sex chord stromal tumours and suggestions on the use of Inhibin B and AMH blood tests if available.
Suzanne, who joined us at the conference said: “Since the change in guidelines. I have successfully had AMH added as a tumour marker to my blood test panel. This is a real step forward for me as my Inhibin blood tests are in range and I have no symptoms, but my CT scan following my last surgery is showing a nodule. If my AMH is in range I’m hopeful I can delay another surgery for a bit longer."
This research shows how patient voices can lead to real change. In November 2024, we were delighted to accept an Inspiring Collaboration Award for this work from the World Ovarian Cancer Coalition.
We’re looking forward to continuing our work with GCT Survivor Sisters UK and want to work with the NHS to start improving testing facilities for those with GCT.
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