An estimate of the number of Victorians currently living with metastatic (Stage 4) breast cancer has been captured for the first time, according to new data from the Victorian Cancer Registry (VCR).
Thanks to new data linkage methods, which use hospital, radiotherapy and national prescription records, the VCR estimates that 4,461 Victorian women are living with metastatic breast cancer[1] – with about half those women aged between 50 and 69.
Breast cancer is the most diagnosed cancer among Victorian women and, while thanks to decades of early detection and advances in treatment, the five-year survival rate is 92 per cent, it can spread to other parts of the body becoming metastatic and incurable.
Until now, Victorians living with metastatic breast cancer had not been counted in cancer statistics.
Director of the VCR Professor Sue Evan said this data was about visibility for an often-invisible population.
"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," Professor Evans said.
"This work is a major step forward in understanding the full impact of metastatic disease and helps us inform research priorities."
Professor Evans said it also provides a baseline to measure improvements in care and survival as new therapies emerge. Vicki Durston, Director of Policy, Advocacy & Support Services at Breast Cancer Network Australia (BCNA), said this data marked a new era for women in Victoria living with metastatic breast cancer. "For the first time, we have real numbers to inform 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." "Breast cancer can and should be the exemplar. By getting this right we can extend these breakthroughs to all people with metastatic cancers who remain invisible in our data systems," Ms Durston said.
Katie Elson, a 30-year-old woman living with metastatic breast cancer said for her being counted is about more than just a number, it's about being recognised as part of the community and the health system.
"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," Ms Elson said.
The Victorian Government's 2024–2028 Victorian Cancer Plan provides the footprint to drive improvement in cancer care. The Plan supports better use of linked health data and improved information collection, so we can better understand and improve care at every stage of the cancer journey.
VCR lead data analyst for the study Ms Wanyu Chu said while capturing this type of data was complex, it was essential.
"By collaborating with colleagues in New South Wales and Queensland, we're improving the science of capturing this important information to make sure that people living with metastatic cancer have visibility in the cancer statistics we report," she said.
Planned future activity led by the Australian Institute of Health and Welfare will enable this information to be reported by all states and territories.
Cancer Council Victoria CEO Todd Harper AM welcomed the release of this vital information and thanked BNCA for their leadership on this issue.
"Cancer Council Victoria welcomes the opportunity to collaborate with BCNA and people living with breast cancer to ensure their needs are better understood and their voices are heard."
