How would you feel if only one of you had the BRCA gene?
In October 2016 this was the question a genetic counsellor posed to us, sisters Jess, aged 29 and Nicole 27. Our paternal grandmother died of breast cancer at 34 years of age and we knew that both our father and our uncle had BRCA2. Later when we discussed our answers to the hypothetical question posed, we realised we’d both given the same answer- “if only one of us had it we hoped it was us”. In November 2016 neither of our wishes came true- we both had BRCA2.
After information overload, six monthly checks ups didn’t seem so bad. Besides,, it wasn’t going to affect us, if at all, until we were at least 60. At least that is what the data in all the flyers showed. We were regular adults, living life, not thinking about our health or mortality.
In July 2017 after our second round of check-ups, in a cruel twist of fate on Jess’s 30th birthday, she was diagnosed with triple negative breast cancer. Suddenly we were thrown into a world of medical jargon, life altering decisions and nervously waiting for doctors. A seven-millimetre tumour was removed within a week, followed by a round of IVF which preserved six embryos before 14 weeks of chemotherapy started. As a 30 year old to sit in a chemotherapy unit with people aged 20, 30 and 40 years older than us, it is an understatement to say we felt like fish out of water.
In 2018 we both underwent double-mastectomy and reconstructive surgeries, Jess as part of treatment and Nicole as a preventative. Our surgeon recommended we join Pink Hope for support and information, which has provided endless advice and support from BRCA carriers in our situations. Despite the fact that we have each other, it is nice to be supported by other people in our shoes, as our paths took very different directions.
Knowledge is power. If we hadn’t been tested for the BRCA mutation Jess wouldn’t have known to get screened and the tumour was so small she wouldn’t have been able to feel it, potentially until it was bigger and more dangerous.
We can both say that we are alive because we knew our risk and changed our future.