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BRCA and I

19 May 2014
Appeared in BioNews 754

Ten years ago, aged just 24, I tested positive for a high-cancer-risk BRCA1 mutation. Six months later, I underwent a preventative double mastectomy with reconstructive surgery.

My mother Christine, was 28 when she first developed breast cancer and 35 when she died. I was seven, my brother was nine. Our grandmother Stella outlived mum but died in her mid 50s having survived the breast cancer she first developed at 32, but losing her battle to ovarian cancer.

Our family's sorry tale doesn't quite end there. Although you'd hardly know it from the media coverage when BRCA crops up, dangerous mutations in this gene can also be passed down from the father's side of the family. And men who carry them are at an increased risk of developing breast cancer and, as in my Uncle's case, prostate cancer. Thankfully, Uncle Alan has now been clear of the cancer for three years.

In 2004 I was operated on by Mr Gui, a brilliant consultant surgeon at the Royal Marsden Hospital. The surgery itself was invasive and intrusive and although I was confident I was doing the right thing, it took those around me a bit of time to come to terms with my decision. The trauma, the pain, the aesthetics and the fear of the unknown all added to the concerns of my family and friends.

Mr Gui started the six-hour procedure by making incisions around each areola and then removing them entirely. I had the choice to keep these, but I knew that cancer can start in a single cell and I wanted to reduce my breast cancer risk by as close to 100 percent as possible.

Then came the two 12cm incisions along my bra line and two small incisions under my armpits. The doctors removed as much as they could, burning out all the remaining cells before extracting a length of back muscle from each side and using this with part-silicone, part-saline implants to create new breasts. Finally they used skin taken from my back to create new areolas and nipples which were later tattooed the appropriate colour. I'm pretty delighted with the results!

As a BRCA1 carrier I had an 85 percent chance of developing breast cancer in my lifetime. I still have a 40 percent chance of developing ovarian cancer. The surgery has reduced my chances of developing breast cancer to less than five percent, well below the national average of 12.5 percent. Only between five and ten percent of all breast cancers are attributable to known genetic factors.

The day after I came to from my surgery, I was told by Mr Gui that I had pre-cancerous cells. It was a nerve-wracking time waiting for the biopsy to see whether I would still need to have treatment for breast cancer. Thankfully I didn't.

I am not bitter that I have this gene or that I had to go through what was perceived to be such drastic surgery. I am privileged to have had the choice. I could not brush my own hair or lift a pint of water for six weeks; I could not lift myself out of the bath or take off my own clothes for even longer; I couldn't face public transport for six months and developed a protective stoop for a while; I was in constant pain for three years and even now, there are very few occasions that I don't experience some level of pain. Despite all this, I absolutely believe that this was the right choice for me at the time.

I believe in choice and that extends into the realm of embryonic screening, which is now creeping into the realms of 'normality'. I support the individual's choice to make use of that science if they want even though personally, I am undecided as to whether I'd use it. I can't help thinking that if my mother had taken that choice then I quite simply wouldn't be here today.

While I would not want other people to go through what I have been through, I do believe that carrying the BRCA mutation has helped me grow as a person. It has helped me gain an understanding of people that I might not otherwise have had and has given me an appreciation of just how precious life is.

Of course, I regret that this gene took my mother away from me, but I do not regret that I have it. Having a faulty gene has in no way made my life less worthwhile.

Have your say about breast cancer and genetic testing, by taking a minute to complete the Breast Cancer Poll on BioNews here.

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