Metastatic breast cancer numbers double previous estimates in Australia
The true number of Australians living with this kind of cancer is double what was previously estimated, showing urgent need for reform of the health system.
Almost 21,000 Australians are living with metastatic breast cancer, shockingly a figure double previous estimates.
Peak body Breast Cancer Network Australia (BCNA) says the world-first data released today exposes the true scale and the urgent need for health system reform.
Metastatic breast cancer (MBC) is when cancer cells have spread to other parts of the body. They can remain dormant even years after a diagnosis of early breast cancer, which is why it can be treated, but not cured.
BCNA’s report “Invisibility to Influence: Progress on MBC data reforms in Australia” will be launched at Parliament House on Thursday. It draws on the Australian Institute of Health and Welfare’s report that for the first time has counted people living with MBC.
BCNA’s CEO Kirsten Pilatti said while the data is a national milestone, it can’t stop there.
“This first national estimate has given Australia long-overdue clarity, but sustained visibility now depends on every state and territory playing its part,” she said.
“The time is right to strengthen our cancer data systems and ensure they reflect the realities of people living with metastatic disease.”
The project was funded through a $1.5m investment last year by the federal government to help accelerate better cancer data collection.
Prime Minister Anthony Albanese said then it also honoured the work of the late Federal MP Peta Murphy, the Member for Dunkley in Victoria, to make sure people with MBC were heard and reflected in national policies and actions.
Ms Murphy was diagnosed with MBC eight years after her first breast cancer diagnosis and died in December 2023.
BCNA said there has been no accurate measure of how many people are living with MBC and there was a gap between initial diagnosis and death that had kept thousands invisible to health systems.
Jessica Giampetrone is one of the 20,950 people living with MBC and says her five-year-old son is her motivation to live.
Diagnosed with breast cancer in 2022, she has been open with Nicholas about her diagnosis but it became a reality for him when his mum collapsed, and he was the only one home.
“Nicholas grabbed my phone, called the ambulance, my husband; he was brilliant,” Ms Giampetrone, 36, said.
“But he got so traumatised by that we went five or six weeks where he didn’t want to go to kinder.
“He said ‘I need to be home in case you fall and the cancer comes back’. That just broke my heart. A child should be out playing with friends, not worrying about his mum being sick.
“But when I say I can’t do this anymore I just look at that little boy and think I don’t want him to grow up without a mum.”
BCNA has pushed for a clearer picture of MBC numbers for almost three decades.
Its director of policy and advocacy Vicki Durston said the underestimation was not only shocking, it had led to chronic underinvestment in specialised healthcare and historical inequities.
“Women with MBC need to know that they are now visible, they are now seen. And those people that have died and felt invisible in our system, their legacy lives on,” she said.
Ms Durston said people were living longer because treatments were better.
Newly-wed Emily Harrison was 26 when diagnosed with breast cancer. Now 31 it is metastatic and she says that has robbed her of the chance to have children.
“That was a difficult one to process,” Ms Harrison said. “The reasons (why) are multifaceted but I would have to stop treatment for a minimum of nine months to be able to carry a child. (Doctors) don’t want me to pause treatment for longer than two weeks. The risk of the cancer spreading further is so high.”
Ms Harrison said that was a big conversation with her husband, Layne.
She said it made her angry that health professionals often skated around the issue and didn’t have clear answers, telling the couple the decision about having a family was up to them.
“I figured out for myself that it was not on the cards for us,” she said.
“We have a dog (Ollie), we have a lovely and fulfilling life without children … It has made us appreciate each other a little bit more, we need each other that little bit more.
“But treatments have been working for me and it gives me a new appreciation of the time I have.”
Dr Ilana Galgut, 57, is a single mother who gave up being a women’s health GP when told she had De novo breast cancer (cancer that has already metastasised by the time of diagnosis).
“Now that it has progressed further, my job is to look after myself and to be here as long as I can for my two children (a son 31 and daughter 24). They still need their mum,” she said.
Dr Galgut is single and said her only fear was that she has had MBC for over 14 years and it was progressing.
“It is such a hard journey and that doesn’t get recognised,” she said. “Having breast cancer really taught me to live, but it is exhausting. You are living with something hanging over your head.
“I know this is incurable, it is going to get me. I don’t know when, but it is a slow cruise downwards. Yes, there are amazing treatments. but it is hard when you know where this is going.”
She said one hundred per cent she didn’t want her kids to be her carers.
Ms Durston said once government, industry and researchers understand the prevalence of people living with MBC longer it will lead to an increase in investment “where it needs to be”.
“This (data) changes everything. It changes policy conversations, it changes health service direction and research priority. It also changes models of care for healthcare professionals.”
She said women don’t want to be written off.
“And we need to remove the stigma that once you get metastatic breast cancer, you die,” Ms Durston said.
She said it starts with a commitment from government that collecting this data is embedded into standard cancer reporting across Australia every year.
Health Minister Mark Butler said the data will bring greater visibility (to this population) across planning, policy and service delivery nationwide.
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Originally published as Metastatic breast cancer numbers double previous estimates in Australia
