Meet the women who want to save your life

October is Breast Cancer Awareness Month, and with the disease affecting one in eight British women, this includes many Jewish women too. Like Stone, other young Jewish women have become accidental activists too, seeing themselves with a responsibility to raise awareness.

After finding a lump in her left breast, Louise Ben-Nathan, 41, was diagnosed with breast cancer a year ago. It was only after her diagnosis that she tested positive for the BRCA2 gene mutation, which meant that, unbeknown to her, she had always had a high chance of developing breast cancer.

“My coping mechanism after being diagnosed was to find the absurdity of the situation. I saw ‘BRCA mutant’ on my notes, and thought it sounded like a character from the Avengers! I was thinking I should get some T-shirts made with ‘BRCA mutant’ on them.”

She describes the conversation she had with her consultant on receiving her diagnosis: “First he told me I had an aggressive Grade 3 invasive ductal cell carcinoma. Then he said it was triple negative. And the next thing he said was: ‘Are you Jewish?’ He could literally tell my Jewish ethnicity by the type of breast cancer I had.”

Since then, Ben-Nathan, from Ealing, has become passionate about educating the Jewish community about BRCA. “One in 40 Jews with Ashkenazi heritage is BRCA-positive. If I’d known more about the mutation, my family history was screaming out at me to get tested. Being BRCA2 meant it was not a case of if I’m going to get breast cancer but when I’m going to get it.” She also has a high risk of ovarian and pancreatic cancer, and an “elevated” risk of melanoma.

She strongly believes more Jews, both women and men, should get tested (the gene mutation passes down both the female and male line). “Just being Jewish is enough of a reason to get tested. There’s not always an obvious family history to watch out for, particularly in cases when women inherit the gene from their father. If you test positive, at least you have a chance to make sensible, informed choices.” Men who are BRCA-positive are also at higher risk of certain cancers, she adds.

Although BRCA is associated with Ashkenazi Jews, Ben-Nathan stresses she was raised Sephardi, not Ashkenazi, the mutation probably coming down the family line from an Ashkenazi great-grandparent. She wants Sephardi Jews to be aware that they can be BRCA carriers too.

She has completed five months of chemo and had breast surgery, and is due to have a double mastectomy and breast reconstruction surgery next month. “It’s been a crazy year but there have been some positives,” says Ben-Nathan, who works in the film industry. Chemo was not as bad as she feared. “The days of having your head down the toilet are long gone, the anti-sickness drugs they give you are so good nowadays.”

Her friends and family have formed an amazing support system to Ben-Nathan, who is single. “My parents are quite religious and if I could have been cured by prayer alone, I would be streets ahead, the amount of people round the world praying for me,” she jokes.

Danielle Stone’s cancer is unrelated to BRCA as she tested negative (in spite of a family history of cancer). She also describes how supportive family and friends have been. Her brothers Matthew and Brandon shaved their heads in solidarity with her to raise money for Chai Cancer Care and fertility charity Chana, two organisations that have helped her since her diagnosis (Chana assisted with the process of freezing her eggs before starting chemo).

Stone, who lives in Shenley, Herts with husband Daniel and baby, is halfway through her six-month chemo regime, which will be followed by surgery. She has taken to Instagram (@dani_not_gonna_dyer) and Facebook to spread the message about breast cancer awareness.

“The response has been unbelievable. I’ve had messages on Instagram from people I don’t know saying, ‘You’re a massive inspiration’ or, ‘I’ve checked myself thanks to you,’” says Stone, who worked as a driving instructor before becoming a mother.

There have been some difficult moments: “It’s tough being a first-time mum and dealing with breast cancer,” says Stone. She describes chemo sessions which she attends with her mum and another relative or friend who looks after her baby in an adjacent room: “When I pop out to see her, I see people looking at me and you can hear them saying, ‘Oh my gosh, she’s got a baby.’ That’s quite hard. I’m always the youngest at chemo, that can make me feel quite sad.”

For women who test BRCA-positive, there are several options available to them. “You can choose how to manage your risk,” says Mr Paul Thiruchelvam, Consultant Breast & Reconstructive Surgeon at Imperial College Healthcare in London. “It’s a very personal decision, and a discussion to have with your family about when to tell your children, and whether you opt for risk-reduction surgery, chemo-prevention [the use of medication to lower the risk of or prevent cancer in healthy people] or enhanced monitoring.”

Thiruchelvam is keen to raise awareness in the Jewish community about BRCA. “This is something I feel very passionately about, and a risk that many in the Jewish community are not aware of. Prevalence of the BRCA1 and BRCA2 gene mutations in the general population is around one in 400, but it’s one in 40 in those of Ashkenazi-Jewish heritage.

“If you have the mutation you have a 40-70% chance of developing breast cancer, and 20-55% chance of developing ovarian cancer in your lifetime. You’re also at increased risk of fallopian tube cancer and peritoneal cancer. Men who carry the mutation are at increased risk of prostate cancer, while both sexes have a higher risk of pancreatic cancer.”

Thiruchelvam understands that people may be hesitant to undergo testing due to fear and the possibility of attached stigma. “It’s important not to panic Jewish community; but it’s important to raise awareness about BRCA so people can make a more informed decision about their health.”

Kim,* 36, from North London, is a BRCA1 carrier: “I have a horrific family history of breast and ovarian cancer.” Several close family members died of cancer, including her mother who recovered from breast cancer at 46, but died ten years later of pancreatic cancer.”

For Kim, risk-reduction surgery was the obvious choice: “Screening was never my forever plan. I thought I’d never forgive myself if something happened to me.” But knowing ovarian surgery would result in surgical menopause, Kim and her husband decided to try for (BRCA-free) children first.

With a 50% chance of any offspring inheriting BRCA, they decided that although they had no fertility issues, they would undergo IVF treatment with PGD (pre-implantation genetic diagnosis). This process involves genetic screening of embryos, with affected ones discarded, leaving only healthy embryos for implanting.

“Knowing how high my chances were for passing on the gene, PGD was a no-brainer,” says Kim. “They told us our son, who’s now five, was the eighth baby born BRCA-free through PGD.”

In 2017, a year after she had her second child, her daughter who’s nearly three, Kim, then 35, decided not to “tempt fate” any longer. She had her ovaries removed, and was put on HRT immediately so has not experienced adverse menopause symptoms.

“I thought I’d wake up after operation and feel relieved, but I didn’t,” says Kim. “I just thought ‘I can still get breast cancer’.” So she didn’t wait long before going for breast surgery.

She had her double mastectomy with breast reconstruction surgery in April 2018, and says recovery was harder than after ovarian surgery. But now looking back, she says: “It’s a bit like having a baby, you know it was painful but can’t really remember the pain.” She benefited from complementary therapies offered by Chai Cancer Care during her recovery: “Chai was amazing. I had pilates, a personal trainer, reflexology, and spiritual training.”

Chai, based in Hendon, offers counselling and support groups for Jewish people affected by BRCA and other cancers: “We are here for anyone affected by a cancer diagnosis and the BRCA gene. We’re very much led by our clients, and if they decide to have the test or not have the test, we are here to support them either way,” says Lisa Steele, Chai’s Chief Executive.

“For people who test positive, it’s an emotional process; there are implications for the whole family. Our role at Chai is not to say what anyone should or shouldn’t do; it’s to talk through their options and consider what’s best for them, adds Barbara Prager, Senior Counsellor, who runs Chai’s BRCA support group.

Kim strongly believes in the importance of sharing her story: “I feel I’ve got a duty to share this, that the more people we can tell our story to, the more people’s lives we can save.

“I want people to know that although surgery seems overwhelming at first, it’s actually been so much easier than I imagined. I also want people to get over their fear of being tested for BRCA. Knowledge is power, and even though it can be tough, it’s really important to know.”

*Kim requested that only her first name be used to protect her privacy

To donate to Danielle Stone’s brothers’ fundraising campaign for Chai Cancer Care and Chana: www.gofundme.com/shaving-our-heads

 

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