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Dayle’s Story

29 May 2019 by Krystal Barter
Dayle’s Story

I was in my early 20’s when our family was notified by the Clinical Genetic Research people that they had traced a genetic mutation back to my family. It was called HNPCC and it leads to an increased risk of Bowel Cancer. After Dad tested positive, I went in for my testing and I’ll never forget the day I got my negative results – I was so elated, I skipped out of the clinic as though I’d been told I was IMMUNE to contracting any form of cancer!

Plot twist a couple of years later, I got a call from my Dad who, judging by his tone of voice, was calling to do more than chat about the weather. “So ‘they’ve’ found out that we carry another genetic mutation. We’ve inherited HNPCC from Dad, and Mum has a different one called BRCA2. It affects breasts and ovaries in ladies, and the prostate in men. I’m sorry darlin’, you’ll have to go and get tested for this one, too”.

Side note – Only recently a genetic researcher told me that we our family is quite the case study, in fact we are one of only 4 (FOUR) known families in the world to carry both mutations!

Something in me knew that I had this one. Even my horoscope on the day that I was due to get my results confirmed my intuition. I wish I’d kept the newspaper clipping, but it went something along the lines of “While the news you receive will not be ideal, it will guide you towards your purpose”. Pretty deep, right?

So there I was in Melbourne, away from my family & most of my friends, only to find myself driving away from the hospital, BRCA2 positive and feeling totally shell-shocked.

It’s fair to say that to begin with, BRCA2 consumed me. I sought advice from the clever people at Peter Mac Cancer Institute, and I gathered various opinions from Eastern & Western medicine. Eventually, I started to feel more comfy with what I could do to put myself in the best position moving forwards.

Even though living a clean life was important to me already, I really honed in on what I could do to reduce the risk of cancer. Implementing simple things – eating clean, treating my body right, trying to reduce stress, eliminating exposure to chemicals in my environment in the form of cleaning products & skincare; basically just owning what I was putting into and onto my body. And while I was not yet in a position to take more drastic measures, I felt comforted by the fact I was doing something.

For me, it didn’t make sense to just roll with the punches and assume that it was all totally out of my control. So after a while of see-sawing between feeling totally helpless and somewhat empowered, I found a happy place and started to really appreciate the fact that I knew.

That I could be educated. And proactive. That I was LUCKY.

After my second child was born, I started to shop around oncologists and breast surgeons, and when I found the right fit, I booked in to get my mastectomy six weeks after weening my son.

I said goodbye to my 3 year old daughter and 9 month old son and went in for a risk reduction prophylactic mastectomy with immediate reconstruction. I had read so much about this operation, and spoken to a few friends who had undertaken similar operations. I feel so very blessed that I had an overwhelmingly positive experience. The procedure went smoothly, the recovery was quick. While I was very cautious to not do too much too soon, I had a good range of movement in my arms, I could pick up my baby, and ever so gently put washing on the line, all within a fortnight of the operation. There are so many contributing factors, and my heart goes out to those who have had a rough journey with surgery. But, for those who are investigating undertaking a mastectomy & reconstruction, there are good news stories, too.

People were shocked that I was going to such “extreme” measures – ‘you’re so young, and NOT SICK?!’.

Granted, there are no guarantees that as a BRCA gene carrier you will definitely contract breast cancer; but I liken it to asking a friend whether they would like to go out paddling with me in shark infested waters and tell them that there’s an 80% chance they’ll be attacked while we’re out there.

Who wants to take a chance with those odds? I thank my lucky stars that I was told how fraught with danger those waters were.

It’s allowed me to make educated decisions and ultimately join team #Previvor.

My gynaecologist has suggested that I undergo keyhole surgery to remove my fallopian tubes and one ovary. I’m keen to take this step, and I really want to be around long enough to know my great grandbabies, just as my Nan has done, so Mission: Tubes Be Gone will be taking place in the near future. I have to admit though, removing my reproductive organs is a lot tougher for me to get my head around, and it’s a decision I’ve been procrastinating over for a year or so now.

But I am focusing on the positives, I’m almost 35, 2 ½ years post op, I run my own business, Nuni, and I am empowered about my risk. Which means life is great!

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