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“Why I had a preventative double mastectomy aged 25”

Krystal Barter Pink HopeWhen news broke this week that Angelina Jolie had undergone a preventative double mastectomy after discovering she had the BRCA1 gene (a “faulty” gene that increases the risk of breast and ovarian cancer), my mind went back to the day I found out I carried the same gene fault.

It also made me realise I had something in common with Angelina Jolie, the most beautiful woman in the world.

Angelina has a family history of breast and ovarian cancer, with her mother passing away from the disease at just 56. The star also found she had the BRCA1 gene fault, which predisposes her to breast and ovarian cancer. The combination of both family history and faulty genetics, gave Angelina an 87% chance of breast and 50% chance of ovarian cancer. With this she decided to go forward with the brave decision to have the preventative double mastectomy that reduced her chance of breast cancer to just 5%.

Four years ago I was recovering from the same surgery.

I understand the star’s decision to have both her breasts removed. I come from a family with three generations affected by breast and ovarian cancer. My Great Grandma Annie died from the disease aged 68, my Nan was 44 when diagnosed, and my Mum was only 36 when she was told she had the disease.

Cancer was all that I knew growing up.

When I was 18 my mum and Nan were tested for the BRCA gene fault. It came back positive. I waited until I held my first born baby in my arms, and decided it was time to be tested for the BRCA gene fault. 22 years old, with my husband by my side and my baby in my arms, I was told that I carried the same gene fault that made every woman in my family sick.

Navigating my high-risk journey with the knowledge of my BRCA status made me feel as if I was already sick – insomnia and anxiety attacks were taking hold. I was liaising with charities unique to my situation overseas, but I wanted someone to connect with outside of my family in Australia. I needed someone to tell me everything would be OK.

Deciding what to do with the knowledge of my BRCA status was made difficult by the lack of resources and support available to high-risk women in Australia, and as a result my journey was physically and emotionally isolating.

Eventually I decided enough was enough, and I needed to start to live my life free from the restraints of cancer and break my family curse.

So at 25 years old in November 2008, after a mammogram screening showed some suspicious calcification, I was wheeled into surgery to have a double mastectomy a week later.

While recovering from surgery, I knew I had an obligation to ensure every high-risk woman didn’t walk the journey alone and I used my experience to make a positive change.

While I was lying in my hospital bed, feeling sore and emotional, I reached for my laptop and created Pink Hope, Australia’s first community for women at risk of breast and ovarian cancer.

The charity provides unique and tangible resources specific to high-risk women and their families, with information and kits to help them understand their risk and their options. Pink Hope also provides a platform for communication between women who are high risk, so as to connect them to a supportive network. The charity has grown substantially in the past five years, as it has tapped into a previously unsupported group of women and helped thousands of them through their high risk journeys. This support, and the resources supplied by Pink Hope, help to make sure these women aren’t alone through the process.

In the last 48 hours, Angelina Jolie has made the BRCA1 gene fault a hot topic internationally. She has highlighted the importance of an issue that confronts hundreds of thousands of women, and has raised awareness of the high risk community. What does this mean for charities like Pink Hope?

The Pink Hope community and I are asking you for your support. We want to ensure that this charity continues to exist and grow. We’re asking the corporate and philanthropic community to dig deep to support this unique and underfunded charity so that we can keep up with the ongoing demand for support of high risk women.

Your donations could also help us achieve the goal of hiring an online genetic counsellor to ensure high risk families get the support they need outside of the health care environment.

Angelina said it is her wish for other women “that if they have a high risk, they too will know that they have strong options”. Pink hope fulfils this wish by providing information about the options available and guiding high risk women through their journey.

Please help us ensure that no other high risk woman walks the journey alone.

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