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Belle’s Story

27 Sep 2019 by Krystal Barter
Belle’s Story

My family is plagued with cancer, aunts, grandparents, cousins, our history is rife. Breast, ovarian and liver cancer the common denominator unfairly taking away women’s lives, who still had so much love and life to live.

When I lost my aunt just a few short years ago, I finally decided I could not leave my future to uncertainty, one where I wasted energy on simply hoping I would not follow in the footsteps of so many of the incredible women in my family, fighting an aggressive cancer diagnosis before I had even started a family of my own.

With the support and guidance of my family and best friend, I made the decision to undergo genetic testing having been told by family members that a genetic mutation commonly known as ‘The Angelina Jolie’ gene, or BRCA, was likely the cause of these deadly cancer diagnoses.

Deep down within me, I always had a niggling that I too would be a carrier, and the angst of confirming my suspicions was confirmed following a long six weeks wait for the results of my blood test, when I was told I did in fact carry the BRCA1 gene, bringing with it an 80% lifetime risk of breast cancer, and a 60% lifetime risk of ovarian cancer.

In instances like this, it’s a fight or flight moment; shutting down from the world; not wanting to deal with the reality that the future is almost certainly going to be one of cancer, withdrawing and putting it into the ‘I’ll deal with it later’ basket.

I knew that time wasn’t on my side, and that a future free of fear was more important than the immediate satisfaction.

But at age 29, I knew that time wasn’t on my side, and that a future free of fear was more important than the immediate satisfaction, but long-term worry, that may have been brought from simply compartmentalising and trying to push on with life as though everything were fine.

So brushing fear aside, I decided that with my diagnosis came an opportunity no one in my family before me had had. A chance, a choice, to change my future and that of my future family.

My diagnosis gave me a chance, a choice, to change my future and that of my future family.

I quickly booked an appointment to the women’s health clinic at the Royal Adelaide hospital, attending various, sometimes overwhelming appointments, information sessions to get as educated and informed as I could about what this risk meant and how I could best manage my future. And while high-risk screening managed to provide some relief to my angst of a cancer diagnosis, it did not completely appease me, and so I started to explore preventative options.

It was here I met with my breast and plastic surgeon to discuss what a double mastectomy and reconstruction would look like.

It was during this time that I stumbled across the work of Pink Hope.

At this point on my journey, they were exactly what I needed, at the exactly the time in my journey when I needed the most support.

Through their online support, groups and meet ups I have connected with women who have become life-long friends, and my biggest cheer squad on this journey to a cancer-free future.

In 2017, I signed the paperwork for my prophylactic double mastectomy. A long 18 months ensured as I waited my turn on the operating list, and finally in December 2018 I had my mastectomy with a tissue implant to stretch the skin, before a further surgery to exchange to an implant, a surgery I am waitlisted to have in the coming months (?).

Despite what many women may tell you; the strangeness of going into surgery when you are in fact a perfectly healthy woman, is totally removed by the empowerment that the day brought. I had made the decision, I had taken the step, and I had put my health in my own hands, and I was going to win.

The strangeness of going into surgery when you are in fact a perfectly healthy woman, is totally removed by the empowerment that the day brought.

While my journey with BRCA is not over, I know I’m already on the downhill, away from a future that is destined to include a cancer diagnosis, and while there will always be a constant reminder of what I’ve done, and what I’ve been through. The scars, the loss of sensation, the reflection in the mirror, I am hopeful for a healthy future.

In a few years I will also look to remove my ovaries, a necessary step to prevent a future ovarian risk. But in the meantime, and as I hold out for Mr Right, I have started exploring PGD as a way to ensure that my future children will not face the same burden that my family and I have had to face; one that is full of hope and health.

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