In a recent webinar led by two Ovacome members Linda and Gill, the Ovacome community heard their personal stories of being diagnosed with rarer types of ovarian cancer—granulosa cell tumour (GCT) and low grade serous ovarian cancer.  

Linda started by sharing her experience of granulosa cell tumour, a rarer ovarian cancer that makes up only 2-4% of ovarian cancer cases. After a routine cervical screening and coil removal showed abnormalities in 2006, Linda later experienced intermittent bleeding and a growing lump in her lower abdomen, which prompted a visit to her GP. This led to the discovery of an 8cm cyst on her right ovary and a smaller one on her left. She was diagnosed with GCT at age 49. Following this, she faced significant surgery, recovery complications and chemotherapy treatment. Linda explained to attendees that she gradually realised that GCT was going to be an ongoing, lifelong experience for her.

Despite difficulties, Linda found ways to approach her anxieties. For example, she talked about the benefits she experienced with Neuro-Linguistic Programming, and highlighted the importance of caring for mental wellbeing after a cancer diagnosis. Linda shared that life since her diagnosis has been full of remarkable experiences and achievements, like a trip through the majestic Canadian Rockies and celebrating her 30th wedding anniversary in Petra, Jordan. Linda also held a head-shaving fundraiser for the GCT Research Foundation and ran a half marathon for Cancer Research UK, turning her personal challenges into support for cancer research. 

Gill, was also diagnosed at 49, but with low-grade serous ovarian cancer. Initially diagnosed with perimenopause after experiencing bloating, bowel problems and urinary issues, her persistent symptoms led her to look for answers after relating with cancer symptoms discussed on an EastEnders episode. After investigations, Gill was diagnosed with stage 3C low grade serous ovarian cancer.

In her account, Gill shared how her membership with Ovacome introduced her to information about genetic testing. Gill asked her clinical team to be tested for BRCA1 and BRCA2 gene changes which can increase the risk of some ovarian cancers. Unlike high grade serous ovarian cancer, this testing is not standard for people with a low grade serous diagnosis. Gill’s results were negative. 

During her recovery, Gill and her family were then told of her husband's diagnosis with another rare cancer in 2021. Gill emphasised how important self-advocacy and and of peer support have been, making use of available support services, and recognising that no question is ‘too silly’. Gill has also had radio appearances, poetry publications, and has become a brand ambassador, increasing awareness and understanding of rarer ovarian cancers.

We would like to thank Gill and Linda for sharing their stories with the Ovacome community.  We know from our members that hearing from others in similar situations is hugely valuable and we really appreciate the time that Gill and Linda have taken to raise awareness of the experiences of those with a rarer ovarian cancer diagnosis.  

This was the first in the series of ‘member-led’ webinars, and at the time of publishing this blog, we have two more sessions available to book:
Tuesday 6 February 2-3pm – Our stories: having a hereditary increased risk of ovarian cancer
Tuesday 22 February 2024 3-4pm – Our stories: living with a stoma.

Ovacome also runs a regular support group for anyone diagnosed with a rarer ovarian cancer (any cancer that is not high grade serous). The group currently runs from 2-4pm every second Thursday of the month. Join the rarer cancer support group.