Rabbi Oliver Joseph of the New North London Synagogue shares his story of carrying a BRCA gene mutation.
The BRCA1 gene mutation changed my life, you should know why.
On the surface, I am a regular North London Jewish guy, except I am not. I grew up in Finchley in a happy home, with a dog, two older sisters - a twin and baby sister, candles on Friday night, summer camp and all the furnishings of a good Jewish life.
At seventeen years old I was diagnosed with Hodgkin’s Lymphoma, the ‘best cancer you can get’. I went into emergency surgery a few days before New Year’s Eve 2000 and celebrated with friends on the banks of the River Thames a few days later with a four-inch gash in my neck. After six months of sustained treatment I was given the all-clear. Twenty years later I am, thank God, a healthy, fit human. My cancer was non-genetic.
In the same year, my mum also got diagnosed with cancer, this time ovarian. Not such a great cancer to have. Within two years she had passed away. We always knew that her mother and her grandmother had died from cancer but little was known in our community at that time about hereditary cancers and few had even heard of BRCA gene mutations at that time.
A decade later in 2013, my baby sister Betsy discovered she had cancer. There is nothing more devastating than finding out that your youngest sister has cancer. She had found a lump in her breast and within a few years her cancer metastasised and went to her brain, the worst way to die from cancer.
It was during Betsy’s cancer journey that we began talking about BRCA gene mutations. We all have BRCA genes but when there is a fault, or a spelling error in the gene, it makes you more likely to develop cancer in your life. The effect of a BRCA variation is more pronounced for women, whose chances of developing breast and ovarian cancer in their lifetime is significantly increased, but men are at risk of breast and prostate cancer too.
A carrier has a 50% chance of passing the faulty gene on to their children. In 2016, Kate my twin sister and I got tested and we found out that we were BRCA positive too. All three of us had inherited the BRCA mutation.
Kate took the decision at the age of 35 years old to begin her journey with elective preventative surgery, which reduced her chances of developing cancer. The highest risk for Kate and for all women with a BRCA1 gene mutation is breast cancer and her first surgery was a double mastectomy and reconstructive surgery.
There are side effects when you have both breasts removed. All elective surgeries come with life changing effects on the body, the hardest as a young woman is the removal of your ovaries and Fallopian tubes, which leads your body into early menopause. But lowering your cancer risk means protecting yourself and your family.
There is nothing more devastating than finding out that your youngest sister has cancer.Rabbi Oliver Joseph
And then there is me. I am BRCA1 positive too and recently married. When we spoke about having children I knew I could not imagine raising a little girl and telling her aged eighteen years old of the choices she faced as a woman if she was BRCA1 positive. We decided to have children by IVF which meant that through a process of pre-implantation genetic diagnosis (PGD) we could choose to implant only fertilised embryos which were free of faulty BRCA genes. We have a beautiful daughter today who we are told with some certainty will not be a BRCA mutation carrier.
I have faced challenges and many choices as a BRCA1 carrier born in to a family of BRCA carriers.
What do you need to know?
The BRCA gene mutation is much more prevalent in the Ashkenazi Jewish community. We really do seem to be the chosen people. Our understanding of BRCA grows every day. As a Jewish community we all have a responsibility to bring the conversation about BRCA variations to our children, to our communities, to our Friday night dinner tables, to all our people. Everyone will choose a different path once equipped with more understanding and knowledge but to begin with we must know what a faulty BRCA gene is and know of the choices we might face if we get tested.
As I said, I am just a regular guy, but I am not.
Join Ovarian Cancer Action and Rabbi Oliver Joseph on Tuesday 29th September for an engaging online discussion about the steps Jewish families can take to prevent hereditary cancers. Donate to support our work in the Jewish community.