‘Invisible’ cancer patients finally brought into focus
The number of Australians living with incurable breast cancer is almost double than previously estimated; Thousands of patients, the majority of whom are women, are not seen by health officials.
Metastatic breast cancer develops when cancer spreads from the breast and nearby lymph nodes to other parts of the body.
Although incurable, modern treatments are allowing people to live longer, but inadequate data collection means this population group remains largely unaccounted for.
Almost 21,000 Australians were living with metastatic breast cancer by 2024, according to world-first estimates published by the Australian Institute of Health and Welfare.
Of these, an estimated 20,800 were women and 150 were men.
This number is twice the estimates used to inform health policy and services for years.
“These estimates are based on the best national and state data currently available and provide greater visibility into a growing group of people with specific health and community service needs,” said institute spokesman Justin Harvey.
“Improving data on metastatic breast cancer will help support better clinical care, service planning, research and policy development.”
While people with metastatic breast cancer live longer, Breast Cancer Network Australia advocates for different services for those with early breast cancer.
Historically, nationwide breast cancer registries have collected incident and death data, leaving a huge gap in knowing the number of people living with the metastatic form of the disease, the network’s director, Vicki Durston, told AAP.
“Until now, these people have been invisible in the data and therefore invisible in our health planning and cancer policy,” he said.
“There’s also a gender perspective to this because this is the most common cancer among women and they deserve better.”
Ms Durston said the updated data would inform research and policymakers to ensure people’s needs were met.
“Our system is set up for acute care, not long-term cancer management,” he said.
“We’ve made huge advances in treatments, but people also need to live well, and we need to make sure they live well.”
Lisa Rankin was 45 when she was diagnosed with breast cancer, and a year later she discovered the cancer had metastasized.
“I was worried about my breasts and it was difficult to get the medical profession to take this seriously because I was told I was too young and not in the target group,” she said.
“I honestly thought I was cancer-free and getting that second diagnosis was a real blow.”
Although treatment has extended Ms. Rankin’s life, it is often difficult to explain to the people in her life what it is like to live with the disease.
“People either think you’re going to die, or you’ve gotten over it and you’re really giving up on making a statement,” he said.
“Having this reliable national data is more than just numbers, it is recognition because it makes us feel like we are finally being recognized as a community that is not served by the healthcare system or services.
“There are so many incredible women living with this disease and doing the most amazing things that we are worth investing in.”
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