Putting metastatic breast cancer on the map

For the first time, utilising advanced data linkage, an estimate of those living with metastatic breast cancer has been revealed. According to the Victorian Cancer Registry (VCR), approximately 4,461 Victorian women are currently impacted, with a significant proportion aged between 50 and 69.

Last year, at a national roundtable in Parliament, the Breast Cancer Network Australia (BCNA) launched a report titled Making Metastatic Breast Cancer Count – A Way Forward. This report urged for the inclusion of all metastatic breast cancer patients in cancer registries, highlighting the crucial need for accurate data.

Kate Thwaites MP, former Assistant Minister for Women, emphasised the importance of this data at the time, stating, “Without good data we are, in a way, fighting in the dark.”

Breast cancer remains the most diagnosed cancer among women. Despite a five-year survival rate of 92% due to advancements in early detection and treatment, the disease can progress to metastatic stages, posing significant challenges and poor prognosis.

Professor Sue Evans, Director of the VCR, said “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. This work is a major step forward in understanding the full impact of metastatic disease and helps us inform research priorities.”

Vicki Durston, Director of Policy, Advocacy & Support Services at BCNA, echoed these sentiments, heralding the data as a milestone for women battling advanced 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,” Durston stated emphatically. 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.”

The recent discussion paper Out from the Shadows supported by AstraZeneca, identified critical priorities for advancing progress in metastatic breast cancer. These priorities include enhancing visibility by creating platforms to discuss the realities and needs of those living with incurable breast cancer, amplifying the voices of patients by ensuring access to new developments and information, and increasing support through a national expansion of metastatic breast cancer nurses and improved access to psychosocial services.

Katie Elson, a 30-year-old living with metastatic breast cancer, emphasised the personal significance of being counted in these statistics.

“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,” Elson said.

The Victorian Government’s 2024–2028 Victorian Cancer Plan aims to drive improvements in cancer care by leveraging enhanced health data integration and comprehensive information collection. This strategic approach seeks to better understand and enhance care at every stage of the cancer journey.

Wanyu Chu, lead data analyst for the VCR study, highlighted the complexity and necessity of capturing accurate data.

“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.

Future initiatives led by the Australian Institute of Health and Welfare (AIHW) will expand reporting capabilities across all states and territories, enhancing nationwide data accessibility and accuracy.

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