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BRCA testing offers positive news this Breast Cancer Awareness Month

Predictive tests give women power to take early steps against breast and ovarian cancer

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Beaux Harris, 29, recently tested positive for a mutated BRCA gene

There’s so much talk about the health service being “broken” these days that we sometimes overlook its many success stories. Like the astonishing triumph of NHS England’s BRCA testing programme, in which a key role was played by two Jewish charities.

BRCA refers to inherited forms of breast cancer that are passed on through faults in genes BRCA1 and BRCA2. Normally these protect against the disease, so people born with a fault on one of them have a much higher risk of developing not just breast cancer but also ovarian and some other types too.

With Ashkenazi Jews more than six times and Sephardis nearly double as likely to carry a BRCA fault compared with the population in general, NHS England decided it made sense to offer free genetic testing to anybody over 18 with at least one Jewish grandparent, in the hope of enabling them to take preventative steps. The charities Chai Cancer Care and Jnetics collaborated to form JewishBRCA.org as a partner in the campaign, tasked with raising awareness.

They proved so effective that after the official launch in January this year the system was inundated. In the first week 10,000 people expressed interest. The target is to get 30,000 women and men tested in three years. Surprisingly, 89 per cent of those testing positive so far are not aware of family history of breast cancer.

The leadership team at Chai admit to being slightly overwhelmed at the scale of response. “It is an amazing opportunity to take these tests and then there are things that you can do… one has choices,” says CEO Lisa Steele.

“What is really important, adds chairman Louise Hager, “is the potential to save lives. But we are aware of and understand the upheaval both physically and emotionally of a positive result and Chai is here before, during and after if people need support.” Adds Steele: “The hope is that eventually we will be able to get rid of the mutated BRCA gene altogether.”

Performer and choreographer Beaux Harris, 29, whose mother and grandmother died prematurely of ovarian and breast cancer respectively, tested positive herself recently. Though it felt “like someone pulled the rug from underneath my feet”, she urges anyone with Jewish heritage to get tested when they are ready. “Knowledge is power,” she says, “we’re never going to be able to keep ourselves alive unless we know. Women deserve to live long lives.”

Angelina Jolie started the BRCA dialogue

We can thank Hollywood star Angelina Jolie (below) for making BRCA part of the conversation. In 2013 she wrote in the New York Times about her own decision to have a double mastectomy in order to avoid contracting breast cancer.

Jolie normalised the idea of preventative mastectomy. The hugely positive impact of her decision to go public should not blind us to the fact that losing one’s breasts is still a serious and often traumatic change, which can affect body image and sexual relationships. But it may not be the only solution. At the forefront of cancer research there is hope for treatment that will help future carriers avoid such radical surgery.

Scientists at Cambridge University led by Professor Walid Khaled have discovered early changes in breast tissue cells that may eventually develop into cancer. Their study found that the immune cells in healthy women carrying the BRCA mutations show signs of a malfunction known as “exhaustion”.

The team believes that the immune cells cannot clear out damaged breast cells, which eventually turn cancerous. These results open up the possibility of using existing immunotherapy drugs to prevent cancer developing.

The researchers have received funding from Cancer Research UK to take their work further. If effective, it will pave the way to a pilot clinical trial in women carrying BRCA mutations.

The research used samples from a tissue bank run by Breast Cancer Now. The charity’s Dr Simon Vincent said: “The best weapon we could have against breast cancer is the ability to stop it occurring in the first place.”

Tattoos help and, no, they’re not forbidden 

Nice as it would be to have the body of Angelina Jolie either before or after her surgery, the reality for most of us is rather more, er, lumpy.

Following a positive test for BRCA2 and a diagnosis of breast cancer in 2003, I had a double mastectomy with a very simple type of reconstruction, and, like many other patients, have lived with results best described as “uneven” ever since. So when I first saw pictures of women who had their scars and bumps transformed by decorative tattoos, I was enchanted.

Nature enthusiast Mary-Beth contracted breast cancer in her thirties and, showing an enviable sense of humour under the hashtag “cancerthriver”, had a great tit – to be clear, a bird – tattooed over her mastectomy scar. She told me that having a beautiful, customised piece of artwork in place of the cancer felt like “my final rebirth into my new sense of self and my sense of body image”. Inspired by this, I considered for the umpteenth time getting tattooed, to celebrate the 20th anniversary of my treatment. But it’s just not that easy for Jews. As we all know, tattoos are so treif that burial could be a problem. I don’t really want my loved ones to be haggling with the Beth Din over my illustrated corpse.

But this turns out to be completely untrue. Rabba Dr Lindsey Taylor-Guthartz says: “It is a bubbameister [Yiddish - old fable]. There is no instance documented ever of somebody with a tattoo being refused a Jewish burial. It’s just one of those things that goes around.”

Rabbi Alex Chapper agrees it’s an urban myth, but points out that tattooing is specifically prohibited by the Torah in the book of Leviticus.

“We are not owners of our bodies, we are merely gifted them during our lifetime as a receptacle for our soul. When we die, the soul returns to God and the body back to the dust.” Because we don’t own our bodies, says Rabbi Chapper, “we have a responsibility to look after our bodies, and we are not allowed to do anything to damage them.”

Despite that, Rabba Lindsey says tattooing is not a clear-cut issue in Jewish law, and context is crucial.

“Halachah is much more flexible than people think,” she says. “The situation of the person asking the question is paramount, what do they want this tattoo for? What sort of tattoo is it? Is it a permanent tattoo? Do they have backup evidence from their doctor or psychologist that this would help them enormously in the healing process, or it’s just a whim?”

Rabbi Chapper agrees, up to a point. “Halachah and rabbinic thinking is sympathetic to people who’ve been through traumatic situations where they’ve been left with a physical impact.”

And he says that ultimately, “it’s between that person and God. As with everything, God is a loving, sympathetic, understanding and compassionate father to all, so He is understanding of someone who might make a decision which may be based on the situation they find themselves in.”

Lindsey Taylor-Guthartz says that the answer you get is dependent on who you consult.

“Anyone who’s seriously considering this, and to whom the halachah matters, probably needs to find somebody who’s on their wavelength.”

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