The vivacious brunette beauty Krystal Barter opens up to Claire Armstrong about her life altering preventative double mastectomy, subsequent book launch and founding the support network Pink Hope, empowering women to take control of their hereditary breast and ovarian health.

Before Hollywood superstar Angelina Jolie hit news headlines after her perfectly healthy breasts were removed in a preventative cancer effort, there stood North Manly mum Krystal Barter, grasping medical results that cemented her long held belief of a positive testing to a rogue gene fault that had relentlessly wreaked cancerous havoc across generations of her family. This proved the catalyst to undergoing a double mastectomy, at the age of just 25.

Yet she claims she isn’t brave or courageous.

She considers herself lucky. A depiction which lends itself to the title of her first book, The Lucky One, released in March this year.

“I never had cancer, I didn’t have to fight for my life every day and go through gruelling treatment,” she says. “Those families that face cancer are brave and courageous. I just did the best I could with the information I had.

“I was given forewarning to save my life and I chose to use it.

“A drop of prevention really is worth a kilo of cure.”

Krystal also acknowledges her innate determination to escape the “cancer curse” that had plagued her family for decades and become the first woman in four generations to say she hasn’t had breast cancer.

“My family carries the BRCA1 gene fault, which increases a carrier’s chances of developing breast cancer up to 80 percent and ovarian cancer up to 50 percent. Yet despite those odds everyone in my family who carries the gene has developed cancer and most haven’t won the fight,” she says.

“Of the 25 women in our extended family, 80 per cent of them died from cancer. We are fortunate though, my mum and Nan are still here, some of the very few women in my family to be bearing the scars and fighting through recurrences.”

Krystal was just 14 years old when her mum was first diagnosed with breast cancer at age 36. Her grandmother was diagnosed at 44 and her great grandma at 68 years old.

“I grew up in a world defined by cancer,” she says. “I was in a family where pretty much every woman didn’t have any breasts. It was confusing environment for a young girl to learn about her body. It meant I grew up being scared that I was going to get cancer, very scared.

“I was given forewarning to save my life and I chose to use it.”

“At 16, I remember running to my mum saying I’d found a lump and demanded to be taken to a doctor for a breast examination – that’s not normal behaviour for a teenage girl.”

Krystal’s intensified sense of fear lead her down a dark path of drugs and alcohol during her teenage years and a depression diagnoses which she airs with brutal honesty in her book. Today, she reminisces about that sinister time with light-hearted humour.

“Since my book launch, my mum Julie has received a lot of messages of support and sympathy because I was a horrible teenager, just awful,” she says with a chuckle in her voice. “If you had met me then and before my surgery and known how negative I was and the way I felt about my old breasts it would be easy to see the transformation I have endured to be where I am at now. It is like the sun has finally started shining.”

Despite her heightened risk for carrying the gene fault and developing cancer, Krystal wasn’t emotionally ready to be tested until she was 22 and holding her first born child.

“It meant I grew up being scared that I was going to get cancer, very scared.”

“My mum and my Nan were actually among the first people tested for the BRCA gene fault [the same as Angelina Jolie] in Australia. I was 18 when they were tested,” she says.

Four years after her mother and grandmother tested BRCA positive, a blood test revealed Krystal’s genetic predisposition to follow their footsteps. The suffocating enormity of her future prospects caused Krystal debilitating anxiety attacks and insomnia.

“This gene and the knowledge of what it would bring me was a lot to carry,” she says. “I was so fearful for my life.

“And I was very alone. There was nobody my age anywhere who was making any other choices besides vigilance and screening and the medical system only had support in place for cancer sufferers. There was nothing available if you wanted to choose a preventative path.”

Over the next few years Krystal blindly navigated the alternative options, but due to a sheer lack of resources and support at the time in Australia the journey was physically and emotionally isolating.

Eventually, her tireless search uncovered an organisation based in the United States called Bright Pink. Its founder Lindsay Avner, also a carrier of the BRCA1 gene fault, had become the youngest American to opt for a preventative double mastectomy with reconstruction at 23 years old. Through their shared adversity a friendship blossomed and bestowed the gift of hope that a future living with the BRCA gene was possible.

“I found the conviction to stop allowing cancer to define me in a negative way and decided I too wanted a double mastectomy,” she says. “My husband was incredibly supportive. I remember him telling me to do what I needed to do because he didn’t want to be raising our son alone.

“To many, it seemed extreme, even for the medical professionals it was termed ‘radical’ surgery. My plastic surgeon couldn’t even show me a photo of a patient who had been through a preventative mastectomy. But for me it was an opportunity to take control of my family’s hereditary health and beat this curse.

“Ask any woman that has cancer if they had been told beforehand they would get it, what would they do? I had that piece of paper that told me cancer was coming. I reacted.”

The surgery was scheduled for March 2009. Krystal was just 25 years old and then had two young sons. But after a routine mammogram picked up suspicious changes in the breast tissue, her surgery was rushed through in November 2008.

However bold and confident she may appear today, Krystal says the time surrounding her surgery was incredibly daunting, because other than Lindsay she hadn’t found anyone else that had opted for this preventative approach.

“I wondered where the other BRCA positive women were and why they weren’t talking about it and I swore to myself that I never wanted another woman to feel as alone as I did at that moment,” she says. “I knew I had an obligation to ensure every high-risk woman didn’t walk the journey alone and I could use my experience to make a positive change. It was a profound moment.”

Krystal explains the actual mastectomy procedure as very different to a boob job and disputes any likening between the two with all tissue needing to be removed including nipples. An additional surgery was necessary for the reconstruction with expanders set in place and pumped up every three weeks to stretch the skin to house the implants, which were placed in yet another surgery.

Krystal required a further surgery to replace her initial implants after one rotated out of position.

Her feature on Channel 9’s 60 minutes program in 2009 saw Krystal comment she hated her old breasts, yet when Offspring asked how she feels about her new additions, she remarked “I love these ones. They look great. They have no nipples and the sensations have been slow to return, but I love them because they are not going to make me sick. I feel more beautiful now than I ever have before.”

After her surgery and still in her hospital bed, Krystal took the first steps to making monumental changes to the lives of people touched by BRCA and established Pink Hope, Australia’s first online community for people at high risk of developing cancer and their families.

“I made it my personal mission to provide information, resources, support and empowerment for the high risk community and encourage all women to be proactive and vigilant,” she says.

It didn’t take long for Pink Hope to gain a sea of followers with its website currently receiving more than 1 million hits in peak times, plus supporting a forum of over 2,500 members and more than 50,000 social media followers.

“Last year when news broke of Angelina Jolie’s decision to remove her breasts there was a 701 per cent increase in people accessing our services. The website crashed,” she says.

“There are some 240,000 Australian men and women who potentially carry a genetic predisposition to breast, ovarian or prostate cancer and it is my mission to find those people and help them make life saving and life altering decisions and support them through that.”

“There are some 240,000 Australian men and women who potentially carry a genetic predisposition to breast, ovarian or prostate cancer and it is my mission to find those people and help them make life saving and life altering decisions and support them through that.”

When Offspring spoke to Krystal she was a hive of happy energy in the midst of preparing for Bright Pink Lipstick Day calling on people everywhere to pucker up their brightest pink lippy on September 26 as a sign of support.

Her dreams continue to flourish with the recent employment of an online genetic counsellor to ensure high risk families get the professional support they need outside of the health care environment. From here, Krystal envisages a finance program to assist families not coping with the costs of dealing with heredity cancer.

The success of Pink Hope has led Krystal to receive accolades such as the 2012 New South Wales Young Australian of the Year finalist and a finalist for the InStyle Audi Women of Style Scholarship, the Harpers Bazaar Woman of Influence award in 2011 and the Warringah Young Citizen of the Year in 2010.

Along with her charity, modern medicine has rapidly advanced too. The now 30-year-old is being applauded for her decision to proceed with having her fallopian tubes and one of her ovaries removed in the coming months to reduce her chance of getting ovarian cancer. And at 35 she plans to have the other ovary taken out.

“One day my kids will realise I am a different mum to what I could have been had I not had the surgery and that the decisions I made were just as much for them as they were for me,” she says.

“My mum gave me letters on my wedding day that she had written in case the worst happened because she didn’t know if she would make it. I feel that I won’t have to write those letters in those circumstances to my children. I have done all I can.”

Her mum now lives next door to Krystal and her family, clearly the wicked teenage years are a mere memory as Krystal boasts she is privileged to have her dearest friend just a stone throw away.

“My life today revolves around my four children, my three human babies, Riley, 9, Jye, 6, and my baby girl Bonnie soon to be 4, and Pink Hope. It is like having another child, I gave life to it, put so much energy into it and it fills me with so much pride.

“I may have lost my breasts, but I gained my life.”

Krystal gives these tips to all women to ensure we remain vigilant and informed:

  • Research your family history – did you know your family history on both your mother and your father’s side is just as important?
  • If you are concerned about your family history contact your GP who may refer you to a Family Cancer Clinic.
  • If you want to know more visit www.canceraustralia.gov.au or take Cancer Australia’s Risk Calculator click here canceraustralia.nbocc.org.au/risk/
  • If you are a BRCA sufferer or known someone who is, or would like to donate, visit www.pinkhope.org.au
Author

Claire is a journalist of eight years across a range of publications and mother of two beautiful girls. She has a passion for all things parenting and a love of sharing stories about the parenthood journey.

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