Speaking Out

By March 30, 2017news-leeds
BRCA Journey

BRCA Journey is aiming to raise awareness of testing for genetic faults that can cause cancer in the Ashkenazi Jewish population.

More than 20 years have passed since scientists discovered that faults in two key genes – BRCA1 and BRCA2 – significantly increased the risk of breast and ovarian cancer.

It is now known that approximately one in 800 people have a fault in the BRCA1 or BRCA2 gene. But the genetic faults are much more common in people who have Ashkenazi Jewish heritage, with one in 40 Ashkenazi Jews believed to have BRCA mutations. Women and men of Ashkenazi Jewish descent are therefore eligible to have a blood test to see if they have a faulty gene, even if they don’t have a relative known to have the mutation.

People with a family history of breast and ovarian cancer can be tested for the faults too, and if found to have one of the two mutations they can be closely monitored for signs of cancer or opt for surgery as a preventative measure.

Nikki Brady of Yorkshire Cancer Research spoke to two Ashkenazi Jewish women from Leeds about their experiences of cancer recently, including Rochelle Gold, who is one of a group of Jewish women who have formed the organisation BRCA Journey. It aims to provide support to women throughout their experiences, raise awareness in the community through local events and raise awareness amongst GPs.

“The research that led to the identification of the BRCA genetic mutations has potentially saved my life. It’s essentially helping to prevent me getting cancer,” says Rochelle.

Rochelle’s mum, Phyllis Harris, was just 64 when she passed away from breast cancer. Phyllis’s own mother had suffered from breast cancer, and her father had also died from cancer.

After undergoing chemotherapy and radiotherapy, Phyllis was tested for the BRCA mutations and found out she had faults in both the BRCA1 and BRCA2 genes. There is a 50% chance of a child inheriting the mutation if one of their parents carries the faulty gene and a 75% chance if it’s both of their parents.

So, following the discovery of the genetic link, Rochelle decided to be tested, and in August 2015 she received a positive result for the BRCA2 mutation. “I don’t know if I’m different to other people, but it was a relief for me. It meant I had the opportunity to do something to reduce my risk of getting breast cancer,” Rochelle adds.

Rochelle underwent a double mastectomy in April 2016 and has arranged to have a full hysterectomy later this year. Before the operation to remove her breasts, Rochelle’s lifetime risk of developing breast cancer was around 85 per cent. After her hysterectomy it will reduce to 5 per cent – lower than the general population’s risk, which is estimated to be 12 per cent.

It’s thanks to a heightened awareness among Ashkenazi Jewish people that Hilary Tammer, a friend of Phyllis, decided to undergo genetic testing herself.

Hilary was diagnosed with stage 1 ovarian cancer at the age of 53 in February 2001, and says: “At the time of my diagnosis, I was told that a BRCA gene test wasn’t necessary as no one in my family had been diagnosed with breast or ovarian cancer. It remained in the back of my mind, however.”

“A meeting about BRCA testing was recently held at our Jewish community centre and I went along. “
After receiving more information about the test and its possible implications, she decided to go ahead. Two months later, Hilary received a letter informing her that she’d tested negatively for the two faults.

“I would strongly urge anyone of Ashkenazi Jewish heritage, with a strong history of cancer, to look into genetic testing.” Hilary adds.

Rochelle is now eager to spread the word about the high risk of BRCA gene faults in the Jewish community in Leeds. She estimates there are around 250 Ashkenazi Jews living in Leeds that could have the genetic mutations.

“There has to be something good that comes from what we’ve been through, I’m very driven by a feeling that if we had known about the BRCA mutation earlier, we could have done something before mum got cancer. She could still be here.” Rochelle says.

Testing for the BRCA gene is only available to those aged over 18, so it will be a few years before Rochelle needs to worry about the affect her family genetics may have on her daughter, who is four, and son, two. By then, further advances may have been made. In the last decade, it has become possible for those with a fault in their BRCA genes to undergo an IVF procedure to ensure their children do not carry the mutation.

“Essentially, you can eradicate the gene mutation. There’s a possibility that we could stop this thing altogether,” Rochelle adds.

“So many family members and friends have now come forward to be tested. Mum would never want a fuss about her. She never wanted to be in the limelight. But thanks to the BRCA test, she’s now saving lives left, right and centre.”

Visit Yorkshirecancerresearch.org.uk for more information.