For the first time, Queensland has revealed that 3863 women are living with metastatic breast cancer, shining a light on a community that has for too long been invisible to the health system. Breast Cancer Network Australia has welcomed the release of this data, which means every person living with metastatic breast cancer in Queensland is now recognised and counted.
The data represents all those diagnosed with invasive breast cancer between 1982-2024, who are alive with metastatic breast cancer as at the end of 2024.
Metastatic breast cancer is treatable but incurable. Until now, Queenslander women living with this life-limiting disease have been absent from official statistics.
Vicki Durston, Director of Policy, Advocacy & Support Services at Breast Cancer Network Australia (BCNA), said this significant breakthrough is critical in enabling the Queensland health system to plan services, direct resources, and invest in research that truly meets the needs of women with metastatic breast cancer, ensuring they are no longer overlooked.
"This is a turning point for Queensland women living with metastatic breast cancer." "For too long, governments have written off people with metastatic breast cancer because it's not curable - forgetting that incurable doesn't mean invisible. This data proves they are here, they count, and they matter." "Without foundational data, where do we even start? Queensland's commitment shows what's possible when we stop treating cancer data as a risk and start treating it as the powerful tool for change that it is." Larissa Erzitech, a 43-year-old Brisbane mother of two living with metastatic breast cancer, said visibility starts with being counted. "As a member of the metastatic breast cancer community I am honoured to be able to represent them at this milestone event."
""If we not in the data, we are not in the decision-making. For Queenslanders living with metastatic breast cancer the accurate collection of data about the disease means they become visible and counted and will lead to improvements in the longevity and quality of life of patients."
Danica Cossio, Senior Director at Cancer Alliance Queensland, added that visibility in the data translates to visibility in policy and practice.
"Queensland's approach sets a new standard for how we recognise and support people living with metastatic breast cancer. This new data ensures that the needs of this community are finally recognised and addressed, paving the way for similar reforms in other cancers." Queensland Minister for Women Fiona Simpson was proud to make the announcement on Wednesday for metastatic breast cancer patients across Queensland.
"I want to thank Cancer Alliance Queensland for their hard work to collate this data, as well as the advocacy from Breast Cancer Network Australia in helping to shine a light on the number of Queensland women living with metastatic breast cancer," Minister Simpson said.
"I'm proud to say Queensland is playing a nation-leading role in improving dignity and recognition for metastatic breast cancer patients but also informing improved care as well as greater access to life-extending treatments and clinical trials.
"Queensland is only the second state in the country to implement this health data reporting change and already we can see that previous national projections significantly underestimated the true number of metastatic breast cancer patients.
"The Crisafulli LNP Government prioritise women's health outcomes - whether it be restoring the regional maternity facilities closed by Labor, or delivering the new Women's Wellbeing Line to provide support to isolated women across the state."
Key statistics from the new Queensland data include:
- 3863 women are living with metastatic breast cancer in Queensland.
- Most women living with metastatic breast cancer in Queensland are aged 60 or older.
- 1120 (29%) are aged 60–69, 1043 (27%) are 70–79, and 579 (15%) are 80 or older.
- However, the disease also affects younger women: 85 are under 40 (2%), 301 are 40–49 (8%), 734 are 50–59 (19%),
- Among the women counted, 88 are First Nations women, representing 2.4% of the total.
This achievement follows decades of advocacy by BCNA and the collective efforts of clinicians, researchers, and women with lived experience. It comes as part of a national movement led by BCNA to ensure every person with metastatic breast cancer in Australia is counted and supported. Queensland's milestone has significant implications beyond breast cancer, paving a path forward for counting people living with other types of metastatic cancer, who remain invisible to the health system. About the data Cancer Alliance Queensland (CAQ) is privileged to use its extensive data capabilities to better understand and support women living with metastatic breast cancer across the state.
Through the Queensland Oncology Repository - one of the most comprehensive population-based cancer databanks in the country - CAQ has identified women diagnosed with breast cancer since 1982 and, using advanced data integration techniques, identified those living with metastatic disease.
The Repository draws from multiple data sources, including the Queensland Cancer Register, the Queensland Hospital Admitted Patient Data Collection, and detailed treatment records. This unique resource enables a clearer picture of the metastatic breast cancer population in Queensland.
Queensland is now the second state in Australia able to accurately count and monitor women living with metastatic breast cancer. This milestone will play a critical role in shaping evidence-based policy, improving service planning, and ultimately enhancing care and outcomes for women affected by this disease.
About us:
Breast Cancer Network Australia (BCNA) is Australia's leading breast cancer consumer organisation. BCNA provides information and support to those diagnosed and their supporters, opportunities to connect with others going through a similar situation and work to influence a stronger healthcare system to ensure all Australians affected by breast cancer receive the very best care, treatment and support.
