Former Stella Maris College student Krystal Barter says she had a typical, “idyllic” upbringing, except for one thing – many of the women in her family, including her Mum and her Nan, had been diagnosed with either breast or ovarian cancer.
BY Debra Vermeer
Finding out that she carried the deadly BRCA1 breast and ovarian cancer gene fault was a shock for Krystal Barter, but she says she’s one of the lucky ones because, with information and knowledge, she’s been able to take control of her own health, and, through her Pink Hope charity, is helping thousands of women to do the same.
“I’ve been very, very fortunate to be able to access the information and the tools to help minimise my cancer risk,” Krystal says.
“And the fact that I wake up every morning knowing that I’m saving and changing lives for families like my own is incredible to me.”
Krystal was born and bred on Sydney’s northern beaches and says she had a typical, “idyllic” upbringing, except for one thing – many of the women in her family, including her Mum and her Nan, had been diagnosed with either breast or ovarian cancer.
Attending the local public school and then Stella Maris College in Manly, a Good Samaritan school, Krystal says she looks back on her school life in a positive way.
“I had a lot of support when I went to school,” she says. “Mum was diagnosed with cancer at age 36 and I do remember the school and the teachers being very supportive.
“Mary Ryland [currently Deputy Principal at Stella Maris] stands out for me. I still see her quite regularly. She’s an incredible woman who really listened. I looked up to her.
“Even though our family wasn’t Catholic, the way we approached life resonated with the message that I learnt from school about the act of giving and of being a good person.
“And now, I realise that if I want my children to grow up to be the best version of themselves that they can be, they have to see that in me, first. So, I try to be good, and do good, wherever I can.
“I feel that every day I wake up I’m doing something that means something, and that has given me the peace that I was looking so hard for, for so long.”
Krystal’s Nan was diagnosed with breast cancer at ages 44, 53 and 76 before passing away last year. Her Mum was diagnosed at 36 and her Great Grandmother was 68 when she died from breast cancer.
“So, consecutive generations of women in my family were dying by either breast or ovarian cancer. It seemed like in my family you grew breasts and then you got cancer,” she says.
In her senior years of high school, Krystal was asked to write an essay on ‘Something that has impacted your life’.
“Of course, I did my essay on breast cancer,” she says. “And it was the first time that I had looked at the situation in that way, all written down on paper, about 12 or 13 pages of my family history. But back then they didn’t know about the BRCA1 gene. Back then, it was just thought that my family was very unlucky.
“It was very confronting for me to see that family history so clearly at such a young age and it made me think that I needed to be on top of my health.”
When Krystal was 18 her Mum and Nan were among the first people in Australia to be tested for the BRCA1 gene, a test which came back positive.
“It was really hard,” she says. “No-one wants to think of their own mortality. But it definitely gave us knowledge. And it ended up saving my life.”
Krystal underwent the test herself at age 22, after having her first baby, with husband Chris McCracken, sparking a time of fear and anxiety as she tried to uncover and navigate the choices available to her.
“I just got lost in a medical maze, using ‘Dr Google’ to try to find out what to do,” she says. “I was looking at the statistics and it seemed like it was a death sentence for me. I was asking myself ‘Am I going to die?’”
Being a person who doesn’t like surprises of any kind, and likes to take control of things, Krystal says she was very uncomfortable with the idea that she did not know when her cancer would emerge.
“All I knew was that it was not a matter of if, but when,” she says. “No-one in my family who’d had this gene was well. I knew I needed to take control of my own health.”
By age 25 and with two boys under the age of four, Krystal made the huge decision to book herself in for a preventative double mastectomy.
At the same time, doctors had found changes in her breast tissue and wanted to do a biopsy.
“I told them, ‘No, I don’t want a biopsy. Take me upstairs for a mastectomy’,” she says.
“I’m actually grateful for that incident, because I might have decided not to go ahead with it if that hadn’t happened. In the end, I just did the best I could with the information I had available.”
Krystal says she had counselling before the operation and was surrounded by a wonderful support team of her husband and family, as well as medical professionals.
“A good support network makes all the difference and I was very, very fortunate,” she says.
But despite her great personal support network, Krystal had struggled to find any support organisations in Australia for people like herself living with the fear and uncertainty of having the BRCA1 gene.
“I would reach out to people in America, but there was nothing here,” she says. “Every charity I contacted would say to me, ‘When you get cancer, then we can help you’. But there was nobody to help with information, options and support now.
“So, lying in my hospital bed after my surgery, I decided that this situation was going to end with me. I was going to do something about it.”
From that decision was born Pink Hope, a charity founded by Krystal to provide guidance and emotional support to women and their families at risk of breast and ovarian cancer.
Pink Hope has now grown to support thousands of at-risk families around the country, while also enabling the general population to assess and understand their own risk.
“I look at what we’re doing now and I think it’s amazing because it means that something positive has come from this journey. It’s something for my kids to look at and see that Mum’s doing something they can be proud of,” she says.
But Krystal’s personal surgical journey was not over yet, and last year, aged 31, she took control of her ovarian cancer risk by having her fallopian tubes and one ovary removed.
“I was fortunate to have had my family young,” she says. “Fifteen months after my mastectomy, we had our third baby, a little girl, and so my little family was complete,” she says.
“I didn’t want to go into menopause, so I had my fallopian tubes and just one ovary removed.”
What Krystal didn’t know at the time was that as she lay recovering from her surgery, her beloved Nan was dying of cancer in New Zealand.
“It was a very, very hard time for me, because we were so close,” she says. “A few days after the surgery, I had to jump on a plane and go over to New Zealand for her funeral. That was really hard.”
But Krystal, who has also written a book about her experience, knows her Nan was proud of the work she’s doing now to help prevent other people dying from cancer.
One of the people that Krystal was able to help, by sharing her own personal experience and knowledge, was Hollywood actress Angelina Jolie, who also carries the BRCA1 gene.
While in Australia for a movie premiere last year, Angelina, who had already had a double mastectomy, and her husband Brad Pitt, met up with Krystal and talked with her about her options for preventative ovarian cancer surgery and how Krystal had experienced the surgery and recovery.
“She was really, really incredible,” Krystal says. “It was wonderful to meet her and when she shared her own story publicly, it generated so much publicity and interest that it helped to provide us with the funding we needed to keep going for the next three years. So I’m incredibly grateful to her.”
Since that meeting, Angelina has had both her ovaries and her fallopian tubes removed.
Krystal says that while her journey has been a hard one, she feels grateful to be where she is today.
“I’m so incredibly fortunate,” she says. “There are young women on the other side of the world with no access to genetic testing or even to basic healthcare. So I never say ‘poor me’. I’m one of the lucky ones.
“I want people not to feel sorry for me, but just to help us to get the information and the tools out there for people, to empower them with support and knowledge.”
One way to help is to support “Bright Pink Lipstick Day”, to be held on Friday, September 25. It’s the premier annual fundraising and awareness day for Pink Hope.
Women are urged to ‘kiss and tell’ on the day, by wearing a bright pink lipstick and telling their own stories of how they, or someone they love, has dealt with the reality of having the BRCA1 gene. People are also encouraged to donate to Pink Hope or to host a fundraiser.
“We want to find people who are at risk and empower them to reduce their risk,” Krystal says. “You can’t actually do that for very many cancers, but with this cancer you can. With information and support, you can tackle it before it takes hold. That’s the message we want to share.”
To find out more about the work of Pink Hope visit www.pinkhope.org.au