Anyone with Jewish ancestry urged to sign up for BRCA test as deadline looms

Men who carry BRCA 2 have up to 35 per cent chance of getting prostate cancer in their lifetime. Male breast cancer is also associated with BRCA, as is pancreatic cancer.

One in 40 Ashkenazi Jews carry a BRCA gene mutation and one in 140 Sephardi Jews. This is compared to one in 250 of the general population.

There is a 50 per cent chance of a carrier passing the mutation onto their children. Anyone over the age of 18 can be tested for BRCA.

(l-r) Carly Moosah, Nicole Gordon and Caroline Presho (Photo: Gaby Wine)[Missing Credit]

Speaking at a screening of Love, Danielle, a powerful film about a married woman in her early 20s who discovers she carries the BRCA1 gene mutation, Josh Forman from Jnetics said to the audience: “Please do consider getting tested… This programme is ending soon, but there is still plenty of time for everyone that we know to register and to be tested. Please share this programme with everyone who might just be eligible, because you never know, it could just save their lives.”

Also at the event were two carriers of the BRCA gene mutation, who spoke about their own experiences. Caroline Presho had risk reducing surgeries after discovering she was a BRCA 2 carrier in 2007.

She went on to found BRCA Umbrella, an online forum with over 3,000 members and has worked as a BRCA specialist for the Eve Appeal and other charities.

Reflecting on her decision to get tested and have surgery after her paternal aunt had ovarian cancer and both she and Caroline’s father tested positive for BRCA, Caroline said: “I would do it all again in a heartbeat. Knowing that within the Ashkenazi Jewish community, one in 40 of us carries a BRCA mutation, this is really important information. You can make very proactive and positive decisions about your future.”

Caroline (left) and Alison Dagul (Photo: Gaby Wine)[Missing Credit]

She urged the audience to be aware that the BRCA mutation can be passed on by men as well as women and that men should also be aware of their own cancer risk. “Let’s look out for the men. Women are more proactive about their health. We will go to the GP if we find a lump or a bump, but men don’t. I worry about my sons because the cancers men can get are ones that men don’t talk about – breast cancer and prostate cancer.”

Also on the panel was Carly Moosah, 43, a BRCA1 carrier, who co-hosts BRCA support groups and helps women prepare for breast surgeries.

After losing her mother, who wasn’t Jewish, to breast cancer when Carly was in her 20s, she went to her GP to enquire about BRCA testing but was turned away.

Six years ago, her half-sister on her father’s side of the family was diagnosed with advanced ovarian cancer. It was when she was on the chemotherapy ward with her that Carly discovered a swelling under her armpit. “It turned out to be triple negative breast cancer - a breast cancer very common with the BRCA 1 gene mutation,” she said. “I was 37. I found out a few months later I was a carrier.” Carly’s father, who has Ashkenazi Jewish heritage, has since also been found to be a BRCA mutation carrier.

Jnetics' Josh Forman and Carly Moosah (Photo: Gaby Wine)[Missing Credit]

Carly underwent six months of chemotherapy, followed by a double mastectomy and reconstruction, using tissue from her tummy. Six months later, she had an oophorectomy. “We had been toying with the idea of third child, but I already had two beautiful children and am very happy with my decision [to remove my ovaries].”

While saying that she had “empathy and compassion” for people who decide not to be tested for BRCA, Carly noted that had the NHS Jewish BRCA testing programme existed when she had first approached her GP, “it would have changed things so much”, not only for herself but also for her half-sister. “She wouldn’t have got late-stage ovarian cancer, which has led to ongoing treatment.”

Carly described the discovery of being a BRCA1 carrier as “a big grief” but said that “knowledge is power…There is a lot of support for anyone who does find out they carry the gene mutation.”

Sharon Pollins (left) & Gaby Katie at the Jnetics film screening (Photo: Gaby Wine)[Missing Credit]

While registration for the NHS Jewish BRCA testing scheme comes to an end at the end of October, Jnetics, which has been the programme’s community engagement partner, alongside Chai Cancer Care, said that they were working closely with the NHS and community stakeholders to determine what form BRCA testing for people with Jewish ancestry would take after that. “We appreciate how vital this programme has been for the community,” said Jnetics’ CEO Nicole Gordon.

To sign up for BRCA testing, go to: jewishbrca.org

The deadline for registration is October 31

‘The cancer test that could save your life’  – see the JC’s Rosh Hashanah magazine for a more in-depth look into how people have been impacted by finding out they were BRCA carriers, and the choices they have made. Available with the Jewish Chronicle, issue September 19 and online here