There are two moments I clearly remember on my cancer journey. I could tell you what I was wearing that day, the conversations I had, what song I sung to my children during their bath time. Each part of the day is etched on my memory. The first is my diagnosis and the second is being told that I carried the BRCA gene.
Family history:
I come from a big Irish family and a gene pool that hasn’t exactly moved around very much! My mum’s side, the Campbell’s, is full of strong Irish women. People always gravitated towards them as they were both incredibly charismatic and empathetic. My dad’s side, the Mungovan’s, were famed for having the constitution of an Ox and drank and smoked into their 80s. But one thing divided them both – cancer. Fortunately, its rare on the Mungovan side. However, the Campbell women have been plagued by breast cancer. My mother had first been diagnosed in her 30s, and died following a recurrence, in July 2010. Her sister, my wonderful aunt, died from breast cancer 4 months before her and my maternal cousin had been diagnosed a month before me.
To test or not to test – that is the question:
My mother was diagnosed at the age of 38 and when the cancer returned in her late 50s and caused her death, I was asked by my GP if I wanted to be tested for the BRCA gene. I was in my 20s at the time and like most people of my age, felt invincible. I remember speaking to a member of the genetics team who told me that given my family history, it seemed highly likely that my mum carried the BRCA gene (she had never been tested). If that were the case, she could have passed the gene to both my brother and I, to just one of us or neither of us. I was always told “you’re a Mungovan” and I held onto the information that she might not have passed it to either of us and that was good enough for me to decide not to go through with testing. But fast forward 10 years and looking at the genetic report confirming that I was BRCA 2 positive, my greatest fears were realised and the innocence I held in my health was gone. It had come down to what looked like a genetic spelling mistake on paper, but the impact was huge.
Decisions, decisions….
My diagnosis was hard, but BRCA felt different – it was so out of my control, and it suddenly affected more than just me. I wondered if I should have made the disclosure to my husband. Maybe on our third date, just slipped it in after dinner – “by the way, I’m possibly carrying a genetic mutation…another margherita?”
In all honesty, I felt so guilty. Guilty for him, for my children – had I passed it onto them? And for the wider family as I delivered the news that they should consider genetic testing to see if they too were also carriers.
Radical surgery:
My cancer was in my left breast, but I made the decision to have a double mastectomy and reconstruction. I knew that I would always be thinking about the other breast and all the risks it posed to me.
“Do you want to have any more children?” The oncologist asked. “You should think about having a hysterectomy before you turn 40”. Did I want to have another baby? I felt so lucky to have my boys who were 18 months and 4 at the time. A pregnant friend had visited just before my diagnosis, and I remember we had cleared the house of baby things and all but given her the kids. I was sure that I did not want any more children, but I wanted it to be MY decision – I didn’t want cancer to make it for me. However, losing my mum (who never got to meet her grandchildren), tore our family apart and I wanted to feel like I had done all I could do to battle this disease for my family and for me. I made the decision to have a full hysterectomy alongside my double mastectomy.
I remember looking in the mirror the morning after my surgery, completely bald and now without what society deemed made me a woman. Yes, it was incredibly hard, but I also felt like I was taking control of something which at times had left me feeling utterly helpless. It was my FU to cancer. My mindset had changed, and I felt empowered by my decision.
Moving on and life after cancer
I am now almost three years on from my diagnosis and surgery. I have dark days and I know that part of me will never be the same again, but I also feel more positive than ever. Why?
I faced my greatest fear and came out fighting.
I started a new business with my great pal Sarah, another breast cancer thriver, and I get to talk to women just like me about all things bras and boobs.
I hope I am making my amazing mum and aunty proud. I have learnt that knowledge is power and ill keep raising awareness.
My greatest worry is still for my children. They will have to make their own decisions when they are old enough about if/when to get tested. I live in hope that during their lifetimes, advancements in medical science will mean that one day this wont matter or that maybe I did not pass this awful gene onto either of them.
We continue to live, love and laugh – full of hope. BRCA can’t stop that.