Decades of data missing: Metastatic breast cancer cases double previous estimates

Last Updated: 27 November 2025

Photo of BCNA metastatic breast cancer consumers standing together and holding hands

This changes EVERYTHING. 20,950 Australians living with metastatic breast cancer have been found in a data void.

For the first time, data shows that 20,950 Australians (20,800 women and 150 men) are living with metastatic breast cancer (MBC). This figure is double previous estimates and exposes the scale of need and urgency for health system reform.

BCNA’s report, ‘Invisibility to Influence: Progress on MBC data reforms in Australia’, will be launched at Parliament House on Thursday. The report draws on the AIHW technical report that enabled this world-first estimate and captures how far Australia has progressed, two years on from BCNA’s 2023 MBC data roadmap.

Being counted is fundamental to being cared for. People living with metastatic breast cancer have complex, lifelong care needs that are often misunderstood or overlooked. Those with incurable disease deserve better care and better outcomes, and accurate data will drive the action and change needed to help them live better for longer.

In a world first, the Australian Institute of Health and Welfare (AIHW) has released a national estimate that fills a long-standing gap in Australia’s understanding. Until now, there has been no accurate measure of how many people are living with metastatic breast cancer between initial diagnosis and death—a void that has kept thousands invisible in our health system. This challenge is mirrored across every advanced health system in the world.

The Hon Mark Butler MP, Minister for Health & Ageing, says the national estimate marks an important milestone in Australia’s cancer data reform and visibility for people living with metastatic breast cancer.

“This achievement has been driven by the leadership and advocacy of Breast Cancer Network Australia. For the first time, Australia has a clearer picture of how many people are living with metastatic breast cancer — data that will bring greater visibility to this population across planning, policy and service delivery nationwide.”

For the first time, Australia can see the true scale of metastatic breast cancer — and it is more than twice what was previously understood. “This underestimation has shaped decades of planning, investment and service design. With a national estimate now produced through a world-first linked-data methodology — validated by the AIHW and supported by Cancer Australia, the DoHDA and leading states — Australia finally has the evidence needed to drive meaningful reform.

This cannot be a one-off achievement. Accurate, ongoing reporting must now inform how Australia plans, funds and delivers care for people living with metastatic disease. There needs must shape our cancer agenda moving forward.” — Vicki Durston, Director, Policy, Advocacy & Support Services, BCNA.

For 27 years, BCNA has been advocating for people with metastatic breast cancer to be counted. CEO, Kirsten Pilatti says the network’s foundation and strength is the voice and lived experience of its consumers. “This moment belongs to the formidable metastatic community we stand with today and to the memory of thousands who came before - their legacy is the visibility and progress going forward. “

Whilst we celebrate this extraordinary national milestone, we will not stop here — our work continues. This first national estimate has given Australia long-overdue clarity, but sustained visibility now depends on every state and territory playing its part. With the recent launch of Cancer Australia’s national data framework, the time is right to strengthen our cancer data systems and ensure they reflect the realities of people living with metastatic disease.

BCNA is calling on all Australians to show their support for people living with metastatic breast cancer by urging state and territory governments to invest in their cancer data registries to ensure this population is counted in our health system. We’re collecting 20,950 pledges for the 20,950 Australians living with metastatic breast cancer.

Visit bcna.org.au to show your support and sign the Together We Count pledge.