Tracey O’Brien, Chief Cancer Officer and CEO of Cancer Institute NSW, shared a post on LinkedIn about a paper she co-authored with colleagues published in The Lancet Regional Health – Western Pacific:
“Our paper is now online: Estimating the number of people living with metastatic breast cancer: a population-based retrospective cohort study using linked health data.
In NSW, over 6,692 people are living with metastatic breast cancer, up 75% over the decade. Why this matters is simple. If people are not counted, they are too easily overlooked in planning, funding and service design. And in 2026, metastatic breast cancer is increasingly a long-term condition. More people are living longer with disease, often for years, sometimes a decade or more, with ongoing treatment and supportive care needs.
People often ask: ‘How can this be hard to count?’ Cancer registries are designed to record cancer at diagnosis, not to track disease course over decades. The progression of disease is not a single, easy-to-capture data point and can be identified in several ways (imaging, biopsy, symptoms, treatment escalation); and those signals reside in different datasets and care settings. Linking them safely and consistently is doable, but it takes governance, capability and investment.
Huge respect to Breast Cancer Network Australia for sustained advocacy that helped drive visibility and reform. And importantly, the Australian Institute of Health and Welfare (AIHW) has now published Australia’s first national estimates, with around 20,800 women and 150 men estimated to be living with metastatic breast cancer in 2024.
With thanks to my co-authors: Hui You, Nicola Creighton, Richard Walton ,Sally Lord, Andrea Smith, Belinda Kiely, David M Roder, Shelley Rushton GAICD.”
Title: Estimating the number of people living with metastatic breast cancer: a population-based retrospective cohort study using linked health data
Authors: Hui You, Nicola Creighton, Richard J. Walton, Sarah J. Lord, Andrea L. Smith, Belinda E. Kiely, David M. Roder, Shelley Rushton, Tracey A. O’Brien
You can read the full article in The Lancet Regional Health – Western Pacific.
More posts featuring Tracey O’Brien on OncoDaily.