Queensland second in world to identify women living with metastatic breast cancer
Brisbane mother Larissa Erzitech describes herself as an "invisible" cancer sufferer who, until now, had been absent from official statistics.
Until recently, Queensland did not track how many people were living with metastatic breast cancer — also known as stage 4 — where the cancer has spread from its initial tumour to other parts of the body.
Not being acknowledged meant the mother of two little boys, who was first diagnosed with breast cancer at age 38, had to battle her disease in a quiet corner, unable to access Medicare for some of her most vital medications.
Her youngest son was just 9 months old when she first felt a lump in her breast, but with treatment, a year later she was told she was cancer free.
She felt as if the health system decided sufferers would die long before they needed to access expensive, life-prolonging treatment.
But two years ago came the devastating news the cancer had returned, and spread to her brain as a metastatic cancer.
She is one of the youngest victims in Queensland living "with" the disease rather than dying from it.
Ms Erzitech is one of nearly 4,000 people now formally identified as living with metastatic breast cancer thanks to a program for national reform spearheaded by Breast Cancer Network Australia and Cancer Alliance Queensland.
Her journey has been brutal — she says the drugs she has been on have caused terrible side effects.
"In our community, we joke that the side effects are like a game of whack-a-mole, as you never know what you're going to get and when they'll pop up," Ms Erzitech said.
"Changes in my heart, ongoing fatigue, mild nausea, hair loss, low white blood cells and sore joints.
"But you need to manage it very quickly to stay on the treatment.
"It is all out of pocket expenses as the medications are not covered by Medicare."
It was yet another consequence of being "invisible" when it came to data, along with an inability to access clinical trials or new "life-extending" treatment regimes.
Ms Erzitech is now forced to grapple with the heartbreaking decision of when to tell her sons, now aged five and nine, that one day she will die.
But she also has a little hope that by being "officially" counted in the statistics, the Queensland health system can plan services, direct resources and invest in research that truly meets hers and other sufferers' needs.
Queensland is only the second jurisdiction in the world, after New South Wales, to identify these survivors.
Breast Cancer Network Australia director of policy and advocacy Vicki Durston said "now, for the first time, these women matter".
"This is a turning point, for too long governments have written off people with metastatic breast cancer because it is not curable, forgetting incurable shouldn't mean invisible," she said.
The newly released data counts anyone diagnosed with invasive breast cancer between 1982 to 2024 who were still alive by the end of last year.
"Without foundational data, where do we even start? If they're not counted, then they're not prioritised through policy planning or cancer plans," Ms Durston said.
"Historically people are counted when diagnosed and again when they die.
"Governments assumed advanced meant limited survival, however with advancement in treatment options and precision medicines, we now have options to support those diagnosed.
"Their needs are different to those with early breast cancer and you can't plan for a group you cannot see."
She said metastatic breast cancer sufferers have felt "written off" for too long, despite advances in oral therapies and new precision treatments extending life spans.
"So we're doing a lot of advocacy with the Commonwealth government, to say those medicines need to be fast-tracked so that people can get access to them, but so they also do not have to mortgage their home to be able to afford it.
"There's some assumptions by government that people with advanced breast cancer that has metastasised die, but they all don't.
"They're living and they're living well. And we want to ensure that there's visibility of that data to advance the advocacy and the policy priorities."
Queensland Minister for Women Fiona Simpson said that while international data was still scarce, Queensland was now nation-leading in improving dignity and recognition for these patients.
"Up until this point what had been collected nationally was wrong with regard to the true impact of this cancer on people's lives," she said.
"Why you need to know the truth is that it will drive better treatment options and hopefully life-extending care.
"It is not about just fighting this disease but fighting to live well."
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