Denise's Story

My mum died of ovarian cancer in 1993 aged 61 and her mother also died of ovarian cancer aged 52, so we knew that cancer was in the family. We didn’t realise to what extent and certainly didn’t know that there was such a thing as a gene mutation called BRCA1.

Through mums cousins, our family became involved in a cancer research programme through KConFab in Australia. Eventually they wrote to us to say that we had a gene mutation in our family called BRCA1 and we were now able to get individual genetic testing. This came as no surprise.

After mulling it over for a while, in July 2006 I had my genetic test done. I believe in the power of positive thinking and was totally convinced my result was going to be negative. When it came back positive for BRCA1, I was devastated.

The first thing I said to my GP when she gave me the results was “there’s no way I’m having my breasts off”. I loved my breasts and couldn’t imagine having them off.

I wanted my ovaries out as soon as possible though – watching mum go through surgery, chemo and then dying made it a very easy decision. It helped too that I’d finished having my family.

Over the next few weeks though I thought constantly about breast cancer and felt like my breasts were two ticking timebombs. I knew that survellience wasn’t going to be enough to ease my mind and that when it came down to it, my breasts didn’t have more value then my life. I didn’t ever want to have to tell my children that I had breast cancer when I could have done something to prevent it. So with the amazing support of my husband Simon, I decided to have a prophylactic mastectomy and reconstruction.

Decisions made, my GP referred me to surgeons in Wellington and in a very short time I had a BSO and full hysterectomy in March 2007 and went straight onto Hormone Replacement Therapy to prevent surgical menopause. My surgeon, Dynes O'Connell was amazing. The keyhole surgery he performed certainly made recovery pretty easygoing.

Even though I knew I’d made the right decision about the mastectomy, I was still an emotional basketcase trying to get my head around it and so had some sessions with a psychotherapist to help come to terms with my decision.

I had my mastectomy and reconstruction in September 2007. I had immediate reconstruction with silicone implants. It was by no means an easy surgery and recovery but I have never regretted my decision. In December 2008 I had nipple reconstruction and the “icing on the cake” in the form of areola tattooing happened in March 2010. It felt good to finally have the surgeries over with so I could get on with my life.

I have 9 brothers and sisters and so far 8 of us have been tested with 6 of us coming back positive. One of my brothers has since died of kidney cancer (supposedly unrelated to the gene). My niece has recently had her genetic test done - the first of the “next generation”.

I do feel very lucky that we know that we carry the gene – knowledge that could have saved my mothers life had she known.

REMEMBER KNOWLEDGE IS POWER!

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