My name is Clare, and I am 49 years old. My grandma died of breast cancer when she was 66 years old. She was one of six children, four girls, all of whom died of breast or ovarian cancer, with her two brothers dying of prostate and bowel cancer. My mother was diagnosed with breast cancer at age 35 (ish). She had two separate primary cancers, two years apart, around 1979 -1981. Astoundingly given her history, she is alive and cancer free at the age of 76.
I always knew cancer was in my family and I started working in pharmaceutical development, later moving into oncology clinical trials, with the hope that I could help families like my own in the future.
Mum and I first discussed genetic testing in 2001, but I was on the verge of moving to Australia, and I was nervous that a positive result might affect my visa! I was only supposed to be coming to Australia for a year, so we put the testing on hold. In the meantime, I continued to ‘do the right thing’ and had a mammogram every second year, which I’d been doing since I was 25 and to be honest, apart from that, we forgot about it.
Fast forward and my sister has three daughters and I have one (yes, I accidentally ended up staying in Australia!).
We started talking to Mum again about moving forward with the genetic testing so that we would know if we needed to look out for our girls. Mum agreed and tootled off to get tested.
Mum got her results in September 2018, and it was confirmed that she carries the BRCA1 mutation. My sister Rachel and I both set the wheels in motion immediately for our own tests, and by early October we were both waiting for our results. We received our results on the 14th of December 2018. Rachel is negative and I am positive.
While waiting for my results, I had come to the decision that I would have a mastectomy, if indeed I was BRACA1, so the decision was made, pretty much, before I even knew my result. By March 2019, my ovaries and tubes had been removed, and I was waiting to meet with some plastic surgeons, to discuss my options for the mastectomy and reconstruction.
My mother thought I was crazy. She found it hard to understand why I would put myself through surgery when I could just have regular mammograms, and deal with any findings if I needed to. She had survived cancer twice, so therefore believed I would too, what was I thinking doing ‘that’ to my body?
I was scared. I have never even broken a finger, so this was a big deal, but I work in oncology clinical trials, and I know the stats for people who get cancer with the BRACA1 gene mutation. And I know my life is not a lottery ticket. I had the opportunity to do something to change the odds in my favour, so I moved forwards.
I went round and round in circles, implants, DIEP, tram, words I had never heard before became part of my vocabulary. I finally decided to have DIEP flap surgery with Dr Fred Clarke.
I used the Pink Hope website like life support. I read EVERYTHING. I followed everyone’s journeys and I read and read and read.
Finally, my surgery date came, the 27th of November 2018. The day before my 9th wedding anniversary. I have never been more terrified in my life. I was a gibbering mess in the run up and apparently “hilarious” as I was being wheeled into pre-op! They had kindly given me something to take the edge off, so I don’t remember this well.
All I have is a very hazy recollection of sitting nude, swaying back and forth, and telling them that it was VERY important that they keep me alive for my child. “That’s all you have to do today guys, keep me alive. I don’t give a BLEEP what I look like, just make sure I wake up. You have one job!” I shudder (and giggle a bit) to think about it now!!
So, the surgery happened, it was ok.
Recovery happened, it was more or less fine.
Then ten days following surgery, I was at home on the lounge with a friend of mine, and my breast surgeon rang. He wasn’t his usual unflappable self.
His attitude, all the way through, was clearly that of someone who is used to doing this surgery on people who already have cancer. He was a bit surprised that I wanted to do this PRIOR to getting a diagnosis. He didn’t say it out loud, but that was the impression I got. He hinted that he was impressed I was doing this. So, post-surgery, he called with my pathology results.
My left breast had an early tumour growing, and my right breast had shown pre-cancerous changes. He said to me on that call, “you have likely saved your own life”.
I am FOREVER grateful to Pink Hope, to my breast surgeon, Professor Andrew Spillane, to Dr Fred Clarke for his magic hands, and obviously for my friends and family who held my hand and shared wine with me during this whole process.
Since having my surgeries, I have had a bit of a mind shift. I now try to see the positive every day. I am BEYOND grateful for the life I have, the life I am living. I have given up alcohol – to ensure that I really can live every day – I want to sleep like a baby (the oophorectomy and menopause robbed me of sleep – big time), and wake up fresh every morning. I most certainly don’t have time for a hangover anymore!
I find I am making better food choices, because I can now tell how heavy food weighs me down… and can even depress my mood, and because I generally have more energy, I am exercising more, catching up with people more and generally ‘living’ more. I feel as though I have been given a massive second chance, and I am grabbing it with both hands.
I am a very, very lucky lady.