A woman who had a double mastectomy and her ovaries removed after discovering she had a defective cancer gene has urged the government to make testing more widely available, especially for Ashkenazi Jews.
Caroline Presho decided to undergo surgery after she was tested positive for the BRCA2 gene mutation in 2007, which left her at high risk of developing breast and ovarian cancer. Her father, who had recently died of cancer, had also been a carrier.
Mrs Presho said: “BRCA isn’t something you see. There is a terrible fear that messes with your head, and it is a very difficult thing to live with.”
Though everyone carries the BRCA gene, its BRCA1/2 mutation encourages the growth of tumours. The defective gene roughly affects one in 800 of the general population, but one in 40 Ashkenazi-Jews.
“This information needs to be highlighted,” Ms Presho said. “When I first went to see a doctor to be tested, I was told not to worry. Testing should be made much more accessible because, at the moment, people don’t know enough. I want to see more clinics set up so that people, especially Ashkenazis, can see genetic counsellors.”
The 40-year-old mother-of-two from Potters Bar, Herts, runs the online support group BRCA Umbrella. She is a supporter of the charity Ovarian Cancer Action, which launched a report in Parliament this month calling for all women diagnosed with ovarian cancer to be tested for the gene mutation.
The charity says the results can affect their treatment and alert family members that they may be at risk.
Chair of Ovarian Cancer Action Allyson Kaye said: “For cancer, you need a preventative strategy, as well as a treatment strategy.
“You will read a lot from the government about early detection but, in truth, prevention is a very important way of saving lives. This is something I want the Jewish community to understand, because it is not only about helping people with ovarian cancer now, but the next generation too.”
Ovarian Cancer Action’s report was welcomed in Parliament by clinicians and ministers, including Shadow Public Health Minister Luciana Berger.
They hope a Bill will be passed ensuring all women diagnosed with ovarian cancer are immediately tested for the gene mutation, as is the case in Scotland. “Having the knowledge gives you the power to change what could happen to you,” Mrs Presho said.