Breast cancer survivor urges Jewish people to test for hereditary gene mutations

Freelance film camera assistant Louise Ben-Nathan, 43, was diagnosed with triple negative breast cancer – the most aggressive type, which is also the hardest to treat – after finding a hard lump in her left breast in February 2018.

When a doctor broke the news, Louise, from Ealing, west London, was surprised when he asked her: ‘Are you Jewish?’

Louise explained: ‘When I confirmed that I was, he said I had better be tested for BRCA1 and BRCA2, as they were more common in the Jewish community.

‘Until then, I had no idea that the gene mutations are more prevalent amongst Jewish women and men.

‘I was at the appointment with my parents and just kept thinking, “how did we just not know?”‘

Louise, whose grandma and mum had cancer, was found to have the BRCA2 mutation.

Her grandmother, Enid, died, aged 66, after developing malignant melanoma and her mother, Margaret, 71, has survived melanoma and breast cancer too – both connected to the BRCA genes – but nobody had talked to them about the need for BRCA gene screening.

Now Louise – who had a double mastectomy – is appealing to fellow Jewish people to be tested for the hereditary gene mutations BRCA1 and BRCA2 – on the 25th anniversary of its discovery.

When she was in her 20s, Louise interned on the film Tomb Raider 2, which starred Angelina Jolie, who later in 2013 went public about her own preventative double mastectomy after being told she carried the BRCA1 mutation.

But it never occurred to Louise that she would need the same operation.

With a history of polycystic ovary syndrome (PCOS), Louise had surgery to remove her womb in January 2018.

She hoped she would be well enough to return to work but, instead, a month later she found the lump in her left breast.

Louise was booked in to have tests, including a mammogram, at the breast cancer clinic, where doctors told her they were concerned there could be pre-cancerous cells in her breast.

A week later, Louise learned the lump she had felt was a 4cm breast cancer tumour.

At the appointment, where the doctor confirmed the diagnosis, she was told she would need further tests to see if the cancer had spread.

Louise recalled: ‘I remember just asking, “is that cancer?” and him saying, “yes”.

‘My mum, whose world just crumbled at that point, reached for my hand and then the doctor started drawing lots of diagrams of the breast and where the cancer was.’

The next 18 months, from diagnosis to the double mastectomy surgery and subsequent surgery in July 2019, were a rollercoaster for Louise and her family.

She said: ‘Being told you have cancer is not the worst part – finding out if it has spread and waiting to learn how limited your life will be if it has is.

‘I was in a perpetual state of fear. It felt as if I was on a battlefield with bullets flying all around me.

‘But the good news was that it hadn’t spread. So, then I wanted to start treatment as quickly as possible to make sure it didn’t metastasize – or spread to other places.’

During 16 rounds of chemotherapy, Louise said she accepted her situation, which helped her cope.

She had her ovaries removed, as carrying BRCA2 also makes people more susceptible to ovarian cancer, but decided against freezing her eggs.

Now a fervent campaigner to raise awareness and encourage screening for hereditary gene mutations in the Jewish community, she says younger women who discover they have the BRCA1 or BRCA2 gene might want to prioritise egg freezing as chemotherapy can age the ovaries by 10 years.

Cancer-free for three years, she hopes to reach the five-year milestone when her remission will become official.

But she is still not well enough to return to the job she loves and says that, had she been for screening before she developed cancer and had preventative, rather than life-saving surgery, life would have been very different.

Now Louise is determined to help save others from following such a difficult path and encouraged family members to get screened. .

She said: ‘If I had been tested and we’d discovered the gene mutation I would not have lost three years of my life the way I have.

‘I’ve been open about what happened to me because every Jewish family needs to know the risks are higher for them. And I hope to help raise awareness and encourage all Jewish people to get tested for the mutations.’

According to the US-based Centers for Disease Control and Prevention (CDC) younger Ashkenazi Jewish women have a higher risk of developing breast cancer, because one in 40 has one of the BRCA gene mutations.

In the non-Jewish population, one in 400 women have the same mutations, which mean instead of protecting against cancer, that part of the genetic code can increase the risk.

Even if you inherit the BRCA mutation, it does not mean you will definitely develop breast cancer, as the chances of passing it on are 50%. This means breast cancer can appear to skip a generation.

You can find out more about the BRCA gene mutations on The Institute of Cancer Research.

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