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Column: Why I decided to undergo a preventative double mastectomy at 34

After the media frenzy over Angelina Jolie’s mastectomy, Wexford woman Edwina White tells her own story of undergoing a prophylactic bi-lateral mastectomy.

Edwina White

LAST WEEK, my phone was abuzz with Angelina Jolie’s news. All over the social networks and news sites the term “BRCA” was cementing itself and its odds into the hearts and minds of the entire world. This global recognition has led to opinions being divided, the odds disputed and the various scenarios being laid out for consideration. My phone was buzzing for a different reason. I had calls from my mother and from friends all saying “Angelina has copied you!”

On January 25th  of this year, I underwent a prophylactic bi-lateral mastectomy (PBM). Yes, I had both my breasts removed. I didn’t wake up that morning, four months before my 34th birthday and just decide to have it done. Trust me, there are better things to do on a Friday than to have both breasts removed but I knew it was something I had to do. This decision was two years in the making – in fact it was only one decision out of many.

Deciding if you should open Pandora’s box

The reality of finding yourself on the operation table is a long and arduous journey. It begins with finding out if you actually do have the “BRCA” gene in the first place. This can be like deciding if you should open Pandora’s box. Do you lift the lid on something which could leave a cloud over your family or do you just deal with what you have in front of you at that particular moment? Having looked at my family tree, it became apparent when going through the generations that the women in my family had not only died from breast cancer but had been diagnosed at an early age, the youngest being just 35. To me it seemed like a no-brainer.

The gene test is not available for anyone to get. They have to test someone who has had cancer first to see if they are carriers of the gene and use this as a reference for everyone else in the family. Throughout this process, whether you are getting information about the test itself, having the test done or getting your results, gene counsellors are there on hand to talk you through how you will feel if you test positive or if you test negative. Either result can have an impact. If you test negative you can feel a potent mixture of relief and guilt. Relief due to you still having as much chance as anyone in getting the disease – and guilt because someone you love has the gene or, worse, has actual cancer.

Surveillance or surgery?

My positive result opened up two options for me, surveillance or prophylactic surgery. I didn’t run straight for the knife. For two years, I attended St James’s Hospital for mammograms and MRI scans and also ultrasounds in the Gynecology Department due to the higher risk of getting ovarian cancer. During this time, my consultant didn’t try to push the surgery onto me. He always said that surveillance was fine if I was happy to keep doing it but at the back of my mind I always knew that at some stage I would go for the surgery. I knew that I couldn’t keep going for the scans and keep my fingers crossed that this scan wouldn’t show a change.

I also had at the back of my mind that breast cancer didn’t always appear as a lump felt during a self examination – my mother didn’t have a lump that could be felt – and having, had surgery 10 years ago for growths in my womb, I felt I needed to take some control over my body and my life.

Having informed my consultant that I wanted the surgery, I was sent to have a session with the oncology counselor and the plastic surgeon. The oncology counselor was fantastic, we spoke about how I would feel once the surgery was done and about how I would I cope after seeing myself completely flat after the surgery. Every step of the way progressed without any judgment from any member of the medical staff.

What’s right for the person looking back at you in the mirror?

I can’t say that the days leading up to and the morning of the operation weren’t filled with fear and dread, but four months on,  I don’t have any regrets. I did feel a bit of a fraud for going through what most women dread, but every women with breast cancer that I’ve spoken to about it, have all said the same thing: they would have had it if they could. They would have taken the opportunity with both hands and taken control of their life.

I am awaiting a date for my reconstruction but I’m optimistic about the future. I didn’t do this for the accolade of being brave, as some have said to me, but I did it because I’m not brave. I was scared of a diagnosis of either breast of ovarian cancer. That can still happen, but now my risk is greatly reduced. I feel as if I can look to the future knowing that I’ve done all I can at this stage to get rid of the dark shadow hanging over me.

I’m not advocating that surgery is the only option for those the “BRCA” gene but it was the right option for me. I will have my ovaries removed in the next 10 years but only after I have children. I have had a number of family members with a positive result and they are getting to their decision on their own terms and in their own time and, thankfully, I’ve also had family members who have tested negative. This means that their own children don’t have the gene.

Other members of my family are awaiting their results and that eight-week wait can be horrendous. Others have decided not to have the test done at all while my brother is wrestling with the decision to get tested. There’s no right or wrong decision when this comes to your family. Everyone is different and have their own opinions on what they want to do for themselves. My only advice is to make each decision with as much information from medical professions as possible and to consider what’s right for the person looking back at you in the mirror.

Edwina White is 34 and has the BRCA 2 gene. There is a long-standing history of cancer on her mother’s side of the family, affecting both male and female relatives. Residing in Gorey, Co Wexford with her fiance David, she hopes her story can help get more information out about the trials of having and living with BRCA genes.

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