Hi, my name is Lucy, I am 40 years old and this is my story.
I was 20 when my mother was diagnosed with ovarian cancer. It had spread to her bowel resulting in a colostomy bag which she was deeply ashamed about. She died on February the 2nd 1995 at 7.50 am – just six months later. For those last six months she suffered profoundly. Our family fell apart which increased her suffering. She was the glue and she had had a life of suffering and putting “the good things” off until there was enough time, enough money, enough…
At 34 years of age, living in Australia I saw Christina Applegate talk about BRCA, and I wondered if it was possible that I could have a genetic predisposition to developing ovarian or breast cancer. I remembered mum telling me about her aunt who I think died from ovarian cancer.
I moved back to Christchurch in September 2010 and soon after was contacted by my cousin – her sister (who had suggested that we were at high risk for the BRCA gene), had just died from breast cancer. I visited a genetic counsellor who decided not to send me for genetic testing because no one in my family was living with cancer, and none had been tested for BRCA, because of this there might be false negative results.
The counsellor recommended that I have a bilateral oophorectomy and mastectomy. So that is what I decided to do. I had to chase my own referrals -probably due to the state of Christchurch post earthquake.
I had my bilateral oophorectomy at the end of 2011 and my double mastectomy with a DIEP flap reconstruction on the 1st of May 2013.
For me the decision was easy. I have three little children and I wanted to do anything and everything in my power to prevent them from the profound grief that I experienced when my mother died. The thought of a few more scars didn’t distress me, as I was not particularly proud of my body to begin with.
The oophorectomy was a piece of cake, I was discharged the same day and have been taking HRT ever since.
The mastectomy and DIEP flap reconstruction was a whole other story. I had a complication, a blood vessel was bleeding into my right breast and I was rushed back to surgery the next day. It was all rather dramatic at the time, the second surgery was very anxiety-provoking, and I was constantly checking and worrying about further complications.
I have an absolutely amazing husband and family who all took care of me post-surgery. My children’s childcare facility took turns and cooked us meals for two weeks. People were so very, very kind to me and that is what I choose to remember of that time.
I felt very alone and had mixed support about my decision, many people failed to understand that currently, surgery is the best preventive measure. It was helpful when Angelina Jolie was in the media two weeks after my surgery, because people who had been unsupportive could see that even the richest celebrities had made the same decision.
The Christchurch earthquakes also helped me to get perspective. People were questioning my decision and telling me that I just needed to eat healthy food and make healthy lifestyle choices. I would say to these people “if you were given a 60-80% chance of getting killed in the Christchurch earthquakes – would you have gone into the city on that day?” I think most people would say “no” if given that choice.
I felt as though I was given a choice too and for me it was the right decision. I know that many other people make different decisions or don’t have the same access to services that I have had. I think that everyone is different and the “right” decision differs with each person and it is important not to discount the fact that there are women with BRCA genes who do not go on to get cancer. Having been through this over the past few years and watching my mother suffer, I have a very strong sense to live in the moment, to not put my life off until I have more time or more money, but to appreciate the life that I have now. In this sense, I feel very lucky.