More than 20,000 Australians living with advanced disease, new data reveals

This is because the medical system can make assumptions about treatment methods and limits for people with metastatic breast cancer; This is partly because there is no accurate indicator of how many women are living with cancer in Australia.

Pager is among a group of Australians deemed “invisible” because the number of women (and men) living with advanced disease was not counted until Thursday.

Loading

After 27 years of lobbying by the Australian Breast Cancer Network and other advocacy groups, the Australian Institute of Health and Welfare has released figures showing the number of people living with metastatic breast cancer is twice as high as previously assumed.

There are 20,800 women and 150 men living with metastatic disease nationwide. 5900 of the women are in NSW, 5400 in Victoria, 4600 in Queensland, 2000 in Western Australia and 1800 in South Australia. The figures for Tasmania, the ACT and the Northern Territory are 510, 370 and 170 respectively. The residence status of 50 people is unknown.

Kirsten Pilatti, chief executive of the Australian Breast Cancer Network, says this should lead to better policies around resource and care for the growing number of people living longer with relapse.

“For the first time, these people will feel seen. But more importantly, we will be able to understand what care, treatment and support looks like for people living with metastatic breast cancer,” she says.

“The great news is that we are living longer, but we actually need to provide more support and care to this group who have felt unseen for so long.”

The data will also help inform guidelines for service delivery.

“The most important thing is that they [these patients] We know these are important now, and we will all be responsible for their fulfillment in our healthcare system,” says Pilatti.

Rod Glover, husband of the late Victorian MP Peta Murphy, will travel to Canberra for the release of world-leading data on Thursday. In the last week of her life in December 2023, Murphy was promoting Breast Cancer Network Australia in parliament. call for collection of national statistics.

“Without this visibility, [their] health needs, Murphy sent to Instagram shortly before she died of metastatic breast cancer.

Glover said it would mean a lot to Murphy if the new data brings hope of better care and support to people who, in his opinion, have less accessibility.

“When you examine these issues, you realize that the system is doing the best it can, but in many ways it is failing,” he said.

Loading

“Peta has made a firm decision to be an advocate for those who have no voice, and people feeling important is really about people feeling known and valued. That’s the promise of data.”

It will also help reinforce the message that metastatic breast cancer does not exactly mean the end of life. “Peta lived 4.5 years after her terminal diagnosis, but people are living longer and living truly productive lives when they have metastatic breast cancer,” Glover said.

Daniella Pager is also hopeful that publishing the data could spur funding for more research into new treatments.

He credits fighting for and securing the biopsy and genomic testing of his tumor for his own renewed hope.

These tests revealed that the disease had returned as a different type of breast cancer, and Pager was placed in a trial of a drug targeting her specific tumor type. While other treatments he’s tried over the past seven months have produced no change in his tumor markers, he’s encouraged that “this drug has brought them back to normal levels.”

“This is definitely not a miracle cure,” he says. “We don’t know how long it will be effective, but it is the only treatment I have used that has been shown to be effective because we managed to find my specific mutation.”

Start your day with a summary of the day’s most important and interesting stories, analysis and insights. Sign up for our Morning Edition newsletter.