“I lost my breasts – but I gained so much more, in that moment, that went on to define me.” 

Krystal Barter was one of the first Australian women to speak publicly about having a double mastectomy as a preventative measure. She did so on major current affair program 60 Minutes, in an interview that changed the course of her life. 

The episode also featured Stacey Gadd who, like Krystal, had elected to have this surgical intervention in her 20s. “She’s still one of my dearest friends,” says Krystal. 

“I’d never met anyone that was going through the surgery other than people that were in America. It was such a healing experience – meeting someone that I could connect with through the process of literally sharing my boobs with all of Australia.” 

More than 20 women in Krystal’s family have battled cancer including her mother, Julie-Anne, who was diagnosed with breast cancer at 36. Krystal’s grandmother, Val, refused to accept that this “curse” was simply a coincidence. 

After meeting clinical geneticist Professor Ingrid Winship, Val got her family into one of Australia’s first BRCA1 genetic screening studies. Mutations of the BRCA1 and BRCA2 genes greatly increase the risk of breast, ovarian and other cancers.

Caption here please, something about Krystal Barter and Shelly Horton at the So Hot Right Now event at the Sydney Opera House

“Mum’s test results came back first – I think I was about 16 or 17 at the time – and she was positive for the BRCA1 mutation,” says Krystal. “It was so overwhelming for me. Mum really wanted me to be tested because she was so worried – but I just couldn’t cope with it.”

It wasn’t until Krystal became a mother that she decided to take the test. Holding her newborn son, she thought, “I have to do it for him”. 

The results came back – and Krystal was also positive for the BRCA1 mutation. 

“I still get emotional about it because I was like, my life is over. Like, this is it,” she says. 

Krystal researched preventative treatments and, after welcoming her second son, chose to have a double mastectomy. Years later, she also underwent surgery to remove her fallopian tubes and ovaries, significantly lowering her risk of ovarian cancer. 

Today, her two sons are 20 and 18 years old. Her daughter is 15 – nearing the age she can be tested for the BRCA mutation, should she choose to, at 18. So far, none of her children have chosen to take the test. 

“If my kids want to ask me questions, I’m an open book,” says Krystal. “Do I want them to get tested? Of course. But I want them to do it when they feel like they’re in a place in their life where the knowledge is usable. I want them to see this is an empowering experience.”  

Krystal was only 25 when she had her double mastectomy. And this was in 2009 – a few years before actor Angelina Jolie would catapult this preventative procedure into public awareness 

While recovering, Krystal felt isolated in her experience. 

“I had to speak to people in America and in the UK – people who weren’t near me. I couldn’t sneak with them around a corner and go, can you show me your boob? Or tell them I was scared. I feel really, really alone.” 

From her hospital bed, Krystal started plotting out what would become Pink Hope, a charity supporting Australian women at high risk of breast and ovarian cancers. Pink Hope launched not long after Krystal met Stacey on 60 Minutes – in an interview that connected women across Australia.     

“That moment became the catalyst for the direction of my life. I lost my breasts, but I gained so much more, in that moment, that went on to define me.”  

While her family has raised millions for the National Breast Cancer Foundation, Krystal helped secure a national, legislated ban on genetic discrimination in life insurance. 

In 2022 she started Humanise Health, a patient-led agency transforming healthcare. This year she co-organised So Hot Right Now at the Sydney Opera House – bringing experts together to reframe the conversation around perimenopause and menopause.

Here, Krystal shares some of what she’s learned through growing businesses in both the not-for-profit and corporate sectors.

No one wants to invest in a sinking ship

“One of the best pieces of advice I had when I was running Pink Hope was from a very well known business leader. I told him that my charity was struggling financially and he said: ‘no one wants to invest in a sinking ship’. 

“He said, ‘even if you don’t feel positive about it, even if it’s not making money, even if you’re struggling, tell people about the impact it’s having. Make it positive’.  

“Don’t get me wrong – I still had to beg and get stuff for free whenever I could. But his words of wisdom really changed the direction of how we asked for funding, and it worked. I changed the language that I used and how I presented it and bang, overnight we got more interest. And then Angelina happened.”

‘Angelina Jolie has your genetic mutation’

“I remember getting a call from Channel 9 while I was picking up my son from school and they were like, Krystal, Angelina Jolie has your genetic mutation! Can you comment on it? Next thing I knew I was doing a mini press conference in my tiny cottage. It was wild. And then I then got a call saying, ‘Angelina wants to meet you, please come to her film premiere’. 

“At that moment – what she gave – it changed everything for BRCA around the world. As in more research dollars, more genetic testing uptake – and it became a household genetic variant. Now you just say, ‘I’ve got the gene mutation that Angelina has’. 

“What she did was put it on the map. And her inviting me to that film premiere put Pink Hope on the map. Our funding grew exponentially because of that.  

“Angelina shared something that she didn’t have to share. She could have very easily gone back with the rest of her life and no one would have been any the wiser. I’m thankful every day that the future my kids are going to face will be better because of what she did.”

Sharing your trauma for change

“At the beginning, when I was sharing my story and people were responding with their trauma, I would cry all the time. Until my dad said, ‘Krystal, if you can’t cope with this, I don’t think it’s the right career for you’. So I developed this mental thing where I put on my armour. 

“Every day that you base your life around something that’s happening to you, or something that has happened to you, you are living with that trauma. I’ve just learned to live alongside it better. 

“With the not-for-profit I had to be out there all the time, opening up, doing everything. Now I get to help others share their stories and advocate for change and develop policy and advocacy strategies that change outcomes for others – and be a bit more behind the scenes. 

“To be honest, it is far, far more rewarding than I ever thought was possible.”