She did an “Angelina Jolie” long before Angelina did it herself. But while the superstar received global recognition for undergoing a preventative double mastectomy and sharing her experience for the benefit of other women, Krystal Barter’s decision to have the surgery was at time when it was little-discussed or understood.
The lack of information and professional psychological support available in 2008 left the then-25-year-old Sydney mum of two young boys with a devastating sense of isolation and anxiety. Despite the unwavering help and encouragement of her husband, Chris, family and many friends, Krystal felt very much alone.
Rather than succumb to her turmoil she was inspired by her mother, a breast cancer survivor, to channel her experience into a crusade to make the journey a whole lot easier for others in future.
It was conceived in her hospital bed while Krystal was recovering from her preventative double mastectomy and, in 2009, Pink Hope was born. It is Australia’s first online community focusing on informing, empowering and supporting women at high risk of breast and ovarian cancer and their families.
On September 20, Pink Hope is staging its annual Bright Pink Lipstick Day, encouraging women to “wear, share and show you care”; to raise awareness of breast and ovarian cancers as well as funds for Pink Hope’s work. But more of that shortly …
When Krystal made the monumental decision to have both breasts pre-emptively removed and reconstructed, she had lived in the shadow of hereditary breast and ovarian cancers her whole life.
“I grew up part of a family where pretty much every woman didn’t have any breasts,” she says. “Of the 25 women in our extended family, 80 per cent of them died from breast and/or ovarian cancer. My great-grandma was 68 when she was diagnosed. My Nan was 44. My mum, Julie, was only 36. So I also grew up scared I was going to get cancer.”
Krystal’s mother and grandmother were among the first women in Australia to be tested for and diagnosed with the BRCA1 (breast cancer) gene fault, the same as Angelina Jolie’s, which meant that Krystal was at very high risk for developing the disease.
Yet she wasn’t emotionally ready to be tested until she was 22 and cradling her first baby son in her arms. It was then she decided she was finally ready for “the gift of knowledge”. It wasn’t for another three years, however, that she was ready to contemplate a preventative mastectomy and only then when an abnormal mammogram result tipped the balance.
“I wanted to live my life, not under the cloud of cancer, but in happiness with my kids,” she recalls. “I decided, right then and there, book me in. Losing my breasts was such a small price to pay. I had the operation and it felt like my new life started.”
Nevertheless the decision wasn’t a clear-cut one, and nor did she simply recover from her surgical wounds and breeze on with her “new life”.
Preventative mastectomy, even as recently as five years ago, was shrouded in myth and mystery and the lack of information available created a sense of isolation that Krystal found traumatic.
But from childhood, Krystal’s mum had encouraged her to help other people, particularly through charity work. This was the genesis of Pink Hope, “a support network, source of accredited information, haven of support and trusted place to ask questions. [It] is a testament to Krystal’s spirit and dedication,” according to a testimonial when she was nominated for the 2012 NSW Premier’s Woman of the Year award.
“With more than 2500 forum members, millions of web visits, 28,000 social media followers and 100 national ambassadors, the website highlights the importance of Krystal’s storytelling and rare ability to bring people together to raise the profile of hereditary breast and ovarian cancer.”
Krystal, now 30 – and with a third child, daughter Bonnie, added to her brood since her surgery – demurs. “I’m just an example of the 120,000 Australian women who walk this journey every day,” she says. “Having experienced the isolation and lack of information for women like me first hand, I decided to be proactive about helping others.
“I didn’t have anyone to talk to who had gone through what I was going through – throughout my journey from being a young girl whose mother, grandmother and great grandmother had breast cancer, to the genetic testing and the anxiety of knowing I had an 87 per cent chance of breast cancer and up to a 60 per cent chance of ovarian cancer.
“Then there was the preventative surgery itself. There was no support outside the doctor’s office to help me understand my risk and options.
“I thought, `Why hasn’t someone created something to help people like me?’ And then I realised `I am the someone and I’ve got to do it’.
“I came out of surgery knowing I was the first woman in my family who wouldn’t have to battle breast cancer. I felt strong and alive and, for the first time in so long, I felt like `me’ again. I wanted to share this feeling with others and make sure no woman had to go through what I went through alone.
“So as I lay in my hospital bed, I got on my laptop and started Pink Hope. And here we are.”
Bright Pink Lipstick Day came about because “I wanted to give families like mine a day globally that belonged to them,” Krystal says. “I’m a girly girl at heart. I love to wear bright lipstick, so that was the start.
“A big part of the community we’ve created is to be engaging, positive and bright and I wanted to create an awareness day that reflected that.
Wearing bright pink lipstick is a fun and fabulous way to increase awareness and also engage with the community in a way that they can enjoy and share.
“We’ve also aligned Bright Pink Lipstick Day with Hereditary Breast and Ovarian Cancer Month in the US to raise awareness as much as we can on an international, as well as national, level.”
Revlon is a major sponsor of Bright Pink Lipstick Day and, indeed, has created a Limited Edition Pink Hope lipstick that is available this month from Target, Priceline and selected pharmacies.
“By slicking on your brightest pink Revlon lipstick, you are promoting the importance that all women everywhere should be proactive about their breast and ovarian health by investigating their family history,” Krystal adds.
Says Janet Muggivan, Revlon Corporate Communications Asia/Pacific: “Revlon has supported women’s cancers for many years now. The Los Angeles and New York Revlon Runs/Walks have become famous for the funds raised going to women’s cancers.
“We believe Pink Hope is a valuable resource and, as someone who has actually walked that path, Krystal’s work is invaluable to women dealing with cancer.
“Pink Hope and the Bright Pink Lipstick Day have the perfect synergy with Revlon, whose core message is for women to use makeup to express themselves.”
Other business sponsors include Deshabille, Running Bare, Murchison-Hume and Skipping Girl, “who have created gorgeous products and in-store sales for Pink Hope,” says Krystal. “Going Up Elevators has given us an office within their warehouse and space to store everything.
“My family lives and breathes Pink Hope – my mum and grandmas help in the office as well. We literally have one part-time employee and a small group of people who volunteer their time when they can.
“There have been so many amazing people who have helped me along the way. My husband, Mum, Dad and my Nans. They have helped me pack boxes, attend fundraisers, cleaned my house when things have got incredible busy … so much else. It’s a real family effort.
“[Nine Network Today Show co-host] Karl Stefanovic is also an amazing family friend. He made sure Today supported me when we started Pink Hope and has been there ever since. I am so grateful for his support and friendship.
“Bright Pink Lipstick Day is our one big event that can help us to create a more permanent team and help us help the community that no one else is putting the time into.
“We are hopeful we can raise significant money so Pink Hope can grow and keep up with demand. I desperately would love to have a genetic counsellor who works alongside me making sure all the information, support mechanisms and families are supported at a high health care level.”
Although Krystal was in fact the pioneer, she can’t thank Angelina Jolie enough.
“It wasn’t until May this year when we were called upon as the only unique charity to pass comment on Angelina’s story around the country and in the UK that I felt the media, health care community and philanthropic sector could see how truly valuable Pink Hope is,” she says.
“I hope people will give generously to Bright Pink Lipstick Day – either by fundraising, donating, becoming a sponsor or holding a workplace event. Any donation, however big or small, won’t be a drop in the ocean. It will make a huge difference to our charity.”
Krystal’s passion for making other women more at peace with their journey is sharing tit-bits, if you’ll pardon the pun, of personal information about her own experience.
She was recently chatted up by a hopeful admirer, who admired her new-ish cleavage (which she says is better than the one Nature provided). “I said to him, `Well, you know I don’t have any nipples?’. He just replied, `Then you’re the sexiest woman without nipples I’ve ever met …’.”
To learn more about Pink Hope and how to participate in Bright Pink Lipstick Day, visit www.pinkhope.org.au.
Jenni Gilbert is a longtime journalist with a passion for sourcing and sharing information about how to look and feel better, inside and out. Jenni’s resume includes Editor-in-Chief of New Idea, launch editor of Good Medicine magazine, London correspondent for Fairfax’s The Sun newspaper – she even covered the wedding of Charles and Diana! – Deputy Editor of Who, senior writer for Woman’s Day, News & Features Editor of The Australian Women’s Weekly and much more. Family, friends, her cat, travelling, Pilates, yoga, holistic health and anti-ageing treatments are what makes Jenni’s life go round.