Finally counted: A milestone for Victorians living with metastatic breast cancer

Landmark progress as Victoria counts every person living with metastatic breast cancer 

For the first time, Victoria has counted everyone living with metastatic breast cancer in the state, marking a major step forward for visibility, recognition, and support.  

New data released by the Victorian Cancer Registry (VCR) estimates that 4,461 Victorians are living with metastatic breast cancer, making them visible in the health system and ensuring their needs can are not overlooked. 

This achievement is the result of decades of consumer-led advocacy by Breast Cancer Network Australia (BCNA), collaboration with the Victorian Cancer Registry and Cancer Council Victoria, and the determination of women living with metastatic breast cancer who have long called for change. 

Metastatic breast cancer is treatable but incurable, and people living with it require ongoing, complex care. Until now, women with metastatic breast cancer in Victoria were largely invisible in health data, making it difficult to plan and deliver services that truly meet their needs. 

"Every person living with metastatic breast cancer should be recognised not just as a statistic, but as an individual with a family, unique needs, a support system, and a connection to the health system,” said Professor Sue Evans, Director of the Victorian Cancer Registry.  

“This work is a major step forward in understanding the full impact of metastatic disease and helps us inform research priorities.” 

BCNA’s Director of Policy, Advocacy & Support Services, Vicki Durston, said,  

“For the first time, we have real numbers to guide how we deliver care, allocate resources, and drive research that responds to their needs. For too long, the voices of people with metastatic breast cancer have been lost in the system, but today’s announcement makes it clear: they are seen, they are counted, and their experiences matter.” 

Victoria now joins Queensland and New South Wales as leaders in metastatic breast cancer data collection. Together, these three states have identified more than 16,000 people living with metastatic breast cancer, far exceeding previous national estimates and confirming the urgent need for accurate, up-to-date data. 

This breakthrough directly responds to the national roadmap for cancer data reform co-developed at BCNA’s 2023 National Roundtable, where government, registry, clinical, and consumer leaders agreed on the urgent need to prioritise the collection of cancer stage and recurrence data.  

The Victorian Government’s Cancer Plan and the new Australian Cancer Data Alliance, launched in 2024, provide the framework and leadership to drive these improvements nationwide. 

For women like Katie Elson, a 30-year-old Victorian living with metastatic breast cancer, being counted is about more than just a number. 

“When we are included in the data, we are included in decisions that affect our care and our futures. This recognition gives hope that the support, research, and treatments we need will continue to improve, and that our lives and stories will help shape what comes next for people facing this diagnosis,” Katie said. 

BCNA calls on all states and territories to follow the lead of Victoria, Queensland, and New South Wales to ensure every person living with metastatic breast cancer is counted, supported, and visible in their health systems. 

Counting people is not a symbolic act, it is the critical first step to delivering the care, support, and investment that every person living with metastatic breast cancer deserves.