Vanessa Gold (left) being interviewed by journalist Deborah Joseph (photo: Paul Lang)[Missing Credit]
During a frank conversation with journalist Deborah Joseph at the annual Jnetics ladies’ night dinner on Wednesday, Vanessa said that when she discovered that Jacqueline had the BRCA gene mutation, the first thing she did was to contact her Jewish relatives. “I said to one: ‘I’ve got some difficult news to share with you. I’ve been told I need to get tested for the BRCA gene.’ She said: ‘It’s okay, Vanessa. I know all about it.’... So, even though she knew about it, she hadn’t thought to pick up the phone and tell us.
“Jacqueline and I would have been in our 30s [when the relative found out]. You can’t help thinking that if Jacqueline had known, [she] could have made different decisions.”
One in 40 Ashkenazi Jews carries a BRCA1 or BRCA 2 gene mutation and one in 140 Sephardi Jews. This is compared to one in 250 of the general population.
Female carriers of the BRCA 1 have a 72 per cent chance of developing breast cancer in their lifetime and a 44 per cent chance of contracting ovarian cancer.
Female carriers of the BRCA 2 have a 69 per cent lifetime risk of getting breast cancer and a 17 per cent risk of ovarian cancer.
Male carriers of the BRCA 2 have a 27 per cent chance of developing prostate cancer, and Jacqueline and Vanessa’s father, David Gold, died of prostate cancer in early 2023.
Vanessa Gold (Photo: Paul Lang)[Missing Credit]
Men with BRCA also have a higher risk of developing breast cancer, and both male and female carriers have more chance of getting pancreatic cancer, although the risks are still relatively low.
Carriers of either sex have a 50 per cent chance of passing on the gene mutation to their children.
Vanessa, who underwent a BRCA test herself after Jacqueline tested positive, said that as soon as she discovered she was also a BRCA carrier, “knew instantly that I would do everything I could to protect myself…I didn’t want to go on the same journey as my sister.”
The 57-year-old underwent an oophorectomy, followed, some months later, by a double prophylactic mastectomy with reconstruction. “To my husband’s delight [the mastectomy] was booked on Valentine’s Day,” joked Vanessa, who now chairs Ann Summers.
She warned against researching preventative mastectomies online, where users would likely come across “distressing” images. “I assumed that I would lose my nipples and that I would have scarring. But it’s not until you ask [the surgeon] that you really understand that it’s not going to be as bad as you thought.”
While Jacqueline was very supportive of her sister, Vanessa said she couldn’t help but feel guilty that “she didn’t have the chance to make that decision herself”.
The Jnetics team (Photo: Paul Lang)[Missing Credit]
In January 2024, the NHS Jewish BRCA Testing Programme was launched to identify carriers. The screening, which involves a simple saliva test, is open to anyone with at least one Jewish grandparent.
Since its launch, 30,000 people have signed up to be tested, with over 400 being identified as BRCA carriers.
Those who test positive for BRCA are referred to a genetic counsellor and able to explore surveillance and prevention options, such as MRIs, mammograms, ultrasounds, drugs and prophylactic surgery.
A male who is a BRCA 2 carrier can access prostate screening through a research programme.
Carriers who are considering children are eligible to explore the option of pre-implantation genetic diagnosis (PGD), a type of IVF, whereby cells from embryos are screened for the BRCA mutation before implantation.
The NHS pilot BRCA testing programme is due to end at the end of this year, but discussions are underway with its engagement partners – Jnetics and Chai Cancer Care – on how the NHS can continue to offer long-term BRCA screening to the Jewish community and those who may not identify as Jewish but have Jewish ancestry.
Since discovering she is a BRCA carrier, Vanessa has been encouraging other people with Jewish heritage to get themselves tested. “I only have to meet someone who mentions that they’re Jewish, and then they get the whole lecture. I urge anyone with even one Jewish grandparent who hasn’t been tested to sign up for the NHS Jewish BRCA testing programme.”
Vanessa has been urging other people with one Jewish grandparent to get themselves tested for BRCA
“You can’t get away from the fact that knowledge is power and knowing where you stand with BRCA means that you do have choices.”
In the last 15 years, since Jnetics was founded, it has screened 8,500 people for 47 recessive genetic conditions, which are life-limiting and/or life-shortening and more prevalent in the Jewish community.
The charity offers genetic screening to Year 12 students in mainstream Jewish secondary schools and to non-Jewish schools, where there is a significant Jewish population.
They also run a screening programme on university campuses and one for young couples considering starting a family, in partnership with the Centre for Reproductive and Genetic Health.
Giving a powerful address, Jnetics CEO Nicole Gordon told the 200 guests at the “Knowledge is power” dinner at St John’s Wood Synagogue: “Forty per cent of the people in this room carry a recessive condition we screen for. Approximately four of you will be – with your partner – a carrier couple at risk of having a child with a devastating recessive disorder. Around six of you will be a carrier of a BRCA mutation and have a significantly increased risk of cancer.
“Behind every number is a name. Behind every statistic, a story. Behind every diagnosis, a family.”
Jonny and Lisa Angel (Photo: Paul Lang)[Missing Credit]
Following a deeply moving appeal by Jonny and Lisa Angel, who shared how the loss of Jonny’s brother, Benjamin, from inherited disease cystic fibrosis at the age of 26 had impacted their family, Gordon thanked guests, saying: “The funds raised will directly support our efforts to educate and screen young adults for 47 recessive Jewish genetic disorders, in addition to the BRCA1 and BRCA2 mutations that disproportionately affect the Jewish population.
“With virtually no government funding, we are entirely reliant on the generosity of our community to sustain and expand our work.”
The JC was the event’s media partner
For more information about Jnetics screening, click here or go to: jnetics.org
For more information about the NHS Jewish BRCA Testing Programme, click here or go to: jewishbrca.org. Anyone with at least one Jewish grandparent is eligible to register
