Thursday 20 June 2019

BRCA1 gene: 'I am so grateful that I chose to have preventative surgery when I did'

Emma Hannigan knows exactly how Angelina Jolie feels today. She, too, carries the BRCA1 gene, and underwent the same surgery as the actress

Emma Hannigan

Two years ago, Angelina Jolie shocked the world by speaking out about her double mastectomy. Yesterday she did it again when she announced that she had had her ovaries removed. Instantly her story resonated with me. I, too, carry the BRCA1 gene and I also had the same surgery she has written about.

Unlike me, Ms Jolie has the world stage at her feet and I think she used that to every woman's advantage. For many years, I have written and spoken about BRCA1 and cancer in the hope that my story will resonate with others and indeed spread hope. But I am a small fish in a large pond and there's no swifter way for an issue to reach the eyes and ears of the world than via a superstar.

Unlike Ms Jolie, I chose to have all my surgery in the space of one year.

I began 2006 with a bi-lateral mastectomy and four months later I had my oophorectomy or, in plain English, I had my ovaries and fallopian tubes removed.

The decision was simple, easy and straightforward for me. I lost my aunt to breast cancer and my grand-aunt to ovarian cancer prior to that. Cancer is rampant in my family and since my surgery it has hit us several times, wiping out more family members.

So suffice to say, I knew the full extent of what cancer can do. When I found out that I carried the BRCA1 gene and doctors told me I had an 85pc chance of developing breast cancer and a 50pc chance of developing ovarian cancer, I was rocked to my core.

Emma Hannigan's latest novel
Emma Hannigan's latest novel

My first question was, "what can I do to help myself?"

At the time, in 2005, there were fewer options open to me than there are now. I could opt for monitoring, which involved mammograms for the breasts and internal ultrasounds for the ovaries. The breast tissue in younger women is very taut so it's not easy to detect cancer.

This wasn't enough of a solution for me, so I went for option number two, which was radical surgery.

Why did I beg doctors to perform such massive surgery? I felt like a ticking timebomb. I honestly felt as if my life was not my own any longer. I thought this gene was going to take me down and that I would develop cancer and die. My children were very small and every time I looked at them it broke my heart. How would they cope without their mum?

With steely determination and a palpable urge to fight back and ultimately survive, I had my surgery. I would go so far as to say I was genuinely happy to do so.

I knew I would be thrown into instant menopause once my ovaries and fallopian tubes were removed. I was 33 and I'd be lying if I said that prospect wasn't daunting. But I predominantly viewed this entire surgical process in a positive way. I turned the negative on its head and saw the real result being offered. I wasn't having parts of my body taken away, instead I was being given more time. I was being handed my life back.

I have never regretted my surgery. Six months after the oophorectomy, I was diagnosed with cancer for the first time. There were pre-cancer cells in the tissue of my left breast and, unfortunately for me, those cells had spread.

To date I've been diagnosed with and beaten cancer nine times.

I know my choice to have the double mastectomy and oophorectomy was the right one for me. I was lucky to have had my two incredible children so I didn't have to contemplate a life without babies.

As it stands, I am cancer-free. I am on a maintenance chemotherapy drug every three weeks. I am being checked and monitored all the time. The advances in medicine mean that so many women now survive cancer diagnoses.

I am an ambassador for Breast Cancer Ireland and all the money they raise goes to funding new treatments.

They now have a free-to-download app called Breast Aware. This clever little gem sends a gentle reminder at the same time each month to encourage women to check their breasts. There's also a simulated demonstration on the app to show you how to check properly. I urge all women to download this. It could save your life and it's free.

For anyone reading this who may have discovered they carry the BRCA1 gene, please have hope. The more we discuss this subject and bounce information and feelings back and forth, the more we can take back the power and continue to make advances in the war against cancer.

I am eternally grateful that I chose to have preventative surgery when I did. I know I wouldn't be here right now if those steps hadn't of been taken. Surgery isn't pleasant but it's a damn sight better than losing my life.

I live each day as it comes. I enjoy my life and embrace all the good things that come my way. My experiences led me to writing. Since my surgery, I have carved out a whole new career as an author. My new novel (my tenth book), The Secrets We Share, is in shops from April 9.

Ten years ago, when I discovered I carry the BRCA1 gene, I had no idea what lay ahead for me. I could never have guessed quite how many bumps there would be on my road of life. But I am sitting here with a smile on my face, happy in the knowledge that having my ovaries removed was the right decision for me.

I hope Angelina Jolie has the same peace of mind. I wish her well and applaud her for raising awareness. She's an incredible mother and wonderful role model for women everywhere.

It's easy to knock famous people but all I would ask you to remember is that she is a mother and wife the same as I am and it takes courage to speak out the way she has. I don't think people have the right to discredit the awareness she is raising unless they've walked a mile in her shoes.

For my part, I am grateful to her for the sense of sisterhood she has afforded me. By reaching out she has connect Hollywood with Bray.

Irish Independent

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