In our latest member led series, Ovacome members Sue and Hilary shared their experience of ovarian cancer, as well as shedding light on the importance of genetic testing for potential gene changes. The session saw attendees sharing personal experiences and concerns about genetic testing and cancer during the Q&A session. 

Sue shared her experience of being diagnosed with Stage 3 ovarian cancer at the age of 59, and also described her and her family’s experience with genetic testing. After her cousin was diagnosed with breast cancer, Sue, her daughter and sister opted for genetic testing revealing that they were all BRCA positive. This means that they were at increased risk of developing certain cancers, including breast cancer but also ovarian cancer with 15-17 per cent of ovarian cancer cases thought to be linked to BRCA gene changes. As a result, Sue’s daughter decided to have preventative surgery soon after learning about her BRCA gene change. Hilary was diagnosed ovarian cancer and endometrial cancer, and found out later that she has Lynch syndrome. Hilary spoke about how she had suspected she may have a BRCA gene change due to her Ashkenazi Jewish heritage, which makes her more likely to carry the BRCA change. However, she found out later on that she had the MSH6 gene change which led to her diagnosis of Lynch Syndrome. This increases the risk of certain types of cancers, including ovarian cancer. Through this discovery Hilary was able to make her family aware that they may also be carrying the gene change so they could arrange to tested if they wished.

Other members also shared their own experiences during the Q&A. One discussion was around how to share the news of a genetic change with younger family members.

In the session Sue and Hillary shared their opinion that children should be aware of the possibility of a gene change, and whether or not they decide to get tested once they are adults is their choice. Providing them with information will hopefully encourage them to be tested and prevent potential health issues.

Attendees discussed their family histories of cancer and whether to be tested for genetic changes. It was explained how in order to have genetic testing you need to be referred by a doctor, this can be done by a hospital specialist or a GP. However, before deciding to go forward with the test you will need to attend a genetic counselling session where more information is given. Both Hilary and Sue described having positive experiences when discussing their concerns with genetic counsellors.

Sue and Hilary’s stories, along with the shared experiences of the attendees, demonstrated the significance of genetic testing and understanding the hereditary risk associated with ovarian cancer. It also highlighted the importance of discussing any concerns with healthcare professionals.

We know from our members that hearing from others in similar situations is hugely valuable and so we would like to thank Sue and Hilary for their time and generosity in sharing their stories with the Ovacome community. 

If you are interested in reading more about our member-led sessions please have a look at our blog post on being diagnosed with rarer ovarian cancers:

Our Stories: Being diagnosed with rarer ovarian cancers | Ovacome Ovarian Cancer

Ovacome also runs a regular support group for anyone diagnosed with ovarian cancer and has an inherited risk. The group currently runs from 11-12:30pm every second Wednesday of the month. 

Join our ovarian cancer and inherited risk support group | Ovacome Ovarian Cancer