Being BRCA positive isn’t a life sentence and I will never forget what my Genetic Consultant told me the day I got my results – ‘knowledge is power’ – Caroline Presho re-accounts her story.
The first I heard about it was in 2002 when my Auntie Rene was diagnosed with ovarian cancer. She was asked about her family history of breast and ovarian cancer and an alarming pattern became apparent. Several close relatives had been diagnosed with breast cancer and goodness knows how many more that no one knew about or were long forgotten.
Auntie Rene tested positive for the BRCA mutation and that was it – Auntie Rene was on a mission to educate the family and share the knowledge she had gained. She gave my sister and me a letter from The Royal Marsden Hospital stating that she had a BRCA2 mutation and as family members we should be tested. Being the grand old age of 32, with three small children and never having heard of BRCA, I smiled politely and went back to nappies and CBeebies.
In 2006, after much nagging, I decided to go and see my GP. I took along the letter and explained to him that I would like a genetic test for a BRCA mutation. He said he had just been on a course about this and that he didn’t think I would have a mutation, so I should stop worrying about it and carry on as usual. Who was I to argue?
I went about my daily life and didn’t really give BRCA another thought until my Auntie died in 2007 and my Dad died 10 days after her. We found out through a chance phone call from a Genetic Consultant that, before Dad died, he had been tested for the BRCA mutation. He had tested positive.
The Consultant suggested my sister, me and our half-sisters get tested, which we all did. We are the perfect 50/50; two of us testing positive, two of us testing negative.
Receiving the news was like hitting a brick wall head on – all I remember of the conversation was a lot of percentages and a lot of different words like breast cancer, ovarian cancer, mastectomy, and oophorectomy – words that weren’t in my everyday vocabulary. I came out feeling numb. I was 33 and armed with information that had suddenly changed my life.
As soon as I hit 35 I started a screening programme and had a mammogram and a breast MRI. I got results showing a shadow on both breasts and was called back for an ultrasound. The days I had to wait for the results were the longest of my life! The results came back clear but hardened my resolve to get rid of the danger boobs!
I opted for risk reducing surgery. Within less than a year I had my preventative double mastectomy with immediate reconstruction and had cut my risk of developing breast cancer from 85% to 2%. In 2013 I decided to have a bilateral salpingo oophorectomy – or as you and I would say removal of my ovaries and tubes.
Being BRCA positive isn’t a life sentence and I will never forget what my Genetic Consultant told me the day I got my results -‘Knowledge is power’. Whilst risk-reducing surgery is not right for everyone, giving women the gift of knowledge and the ability to make informed decisions about their future is.
I feel I have been given control in a proactive way and I believe all women should have this option. Join me in my support of The Eve Appeal’s research programme, FORECEE, which could potentially allow all women to make informed choices to manage their risk of ovarian, womb, breast and cervical cancer.” Caroline Presho