Krystal Barter was 25 when she had both breasts removed to escape her "family's cancer curse".
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
Now the 30-year-old mother of three is being hailed as Australia's Angelina Jolie for her decision to have her Fallopian tubes and one of her ovaries removed to reduce her chance of getting ovarian cancer.
Ms Barter's memoir, The Lucky One, was launched on Tuesday by another mother of three – the Prime Minister's wife, Margie Abbott – in a rare public appearance.
Until six weeks ago, Mrs Abbott admitted she had never heard of the BRCA1 gene, which Ms Barter and Jolie carry, or the BRCA2 gene.
Carriers of the BRCA1 and the BRCA2 gene mutations have about a 65 per cent increased risk of breast cancer, and a 40 per cent increased risk of ovarian cancer.
"For Krystal, knowing that living with a potential death sentence gave her two choices: either to be a bystander and see how the cards fell or ... to take control," said Mrs Abbott.
Mrs Barter has no symptoms of the ovarian cancer, which killed some 903 Australians in 2011.
Her decision to have preventive surgery was influenced by new Canadian research that found removal of both ovaries by the age of 35 reduced the risk of death by 77 per cent for women who carry the BRCA gene mutation.
But surgery was a "radical step" that should only be taken if recommended by a range of physicians, and after genetic counselling, said Cancer Council Australia CEO Ian Olver.
"While the removal of an organ or other body part does almost entirely eliminate the risk of cancer developing at that site, there is always the chance that some tissue could be left behind," said Professor Olver.
Ms Barter, from Sydney's northern beaches, agreed that "prevention was not the right choice for everyone. But it is easy for someone to talk in a clinical way if they haven't walked the emotional journey".
Ms Barter's mother and grandmother have also had breast cancer. Her mother, Julie Barter, has had a hysterectomy and mastectomy.
Ms Barter founded support group Pink Hope so women and men with hereditary breast and ovarian cancer like her would have better information.
"I was alone and isolated, there was nobody my age who making the choices," she remembered thinking when the gene was detected when she was 22.
"There was nobody I could talk to who had this gene, and there was nobody who could guide me."