We believe that lives are being lost because women at increased risk of ovarian cancer due to family history are not being identified.
Up to one in five women (20 per cent) with ovarian cancer have an inherited form of ovarian cancer.
This could be passed down on their mother or father’s side of the family, and is often because of a ‘faulty’ or mutated gene (like the BRCA1 or BRCA2 gene which predisposes to both ovarian and breast cancer). Find out more about ovarian cancer in families.
A family history of ovarian and/or breast cancer can increase a woman’s risk from two per cent lifetime risk to up to 45 per cent lifetime risk. But women who know they are at high risk can take steps to reduce their risk, and to ensure that if they do develop ovarian cancer, they are diagnosed at the earliest possible stage.
What needs to change?
- We want the term Hereditary Breast and Ovarian Cancer Syndrome to be recognised in national guidance and the media. This will help to ensure women are fully aware of the implications of family history, and that the risk of ovarian cancer is not underestimated.
- We want GPs to improve their knowledge around family history, particularly the importance of the father’s side of the family.
- We want genetic testing to be offered to all women across the UK with high grade serous ovarian cancer in line with current NICE guidance. Genetic testing has strong emotional implications for women and their families, so all women should have access to counselling, overseen by genetic services, in order to make a truly informed decision on whether to be tested.
- We want genetic testing to be accessible across the UK for all women with a strong family history (a strong family history means two or more close relatives, from the same side of a family - mother or father’s - with ovarian and/or breast cancer). This should include appropriate counselling and support through expert specialist genetic services.
Our campaign so far
- We have published our position statement on BRCA gene testing: "Genetic testing has strong emotional implications for women and their families, so all women should have access to counselling, overseen by genetic services, in order to make a truly informed decision on whether to be tested."
- We are funding a clinical trial at Cambridge University into the feasibility, acceptability and cost effectiveness of systematic genetic testing of all women with ovarian cancer under the expert auspicious of genetic services.
- We have developed a GP learning tool, in partnership with Pulse Learning, to help GPs update their understanding of familial ovarian and breast cancer.
- We are working with Breakthrough Breast Cancer to call for better services for women with a higher risk of breast and/or ovarian cancer due to their family history, including organising a joint meeting of the All Party Parliamentary Groups on Breast Cancer and Ovarian Cancer.
- We are sharing women's stories about the impact of genetic testing on them and their families.
Help us campaign
We would like to hear from women, and their families, who have a familial history of ovarian and/or breast cancer, including those who have had genetic testing, and those who have not. Find out how you can help us campaign by raising awareness or sharing your story.