Telling the Whole Story This Breast Cancer Awareness Month
October is Breast Cancer Awareness Month, a time when breast cancer is front of mind for many people across Australia. Every day, 56 Australians are diagnosed with breast cancer, and 1 in 7 Australian women will be diagnosed during their lifetime.
Awareness matters. It helps increase understanding, encourage early detection, and foster support for people affected by breast cancer. But Breast Cancer Network Australia, we believe it's important to tell the whole story.
That means recognising that breast cancer is not one experience. While many people complete treatment and move forward with life after diagnosis, others live with metastatic breast cancer (MBC), an incurable form of breast cancer that has spread beyond the breast to other parts of the body. Their experiences and needs must be part of every conversation about breast cancer awareness.
This month, as we reflect on the impact of breast cancer, we're also highlighting the importance of ensuring that people living with MBC are seen, heard and counted. 💗
🌍 Metastatic Breast Cancer Awareness Day: Why Counting Matters
Yesterday on 13 October, we marked Metastatic Breast Cancer Awareness Day.
For many years, one of Breast Cancer Network Australia's key advocacy priorities has been ensuring that people living with MBC are accurately represented in Australia's cancer data. Without good data, it is difficult for governments, health services and researchers to understand the true impact of metastatic disease or plan the services and support people need.
In November 2025, Australia reached an important milestone when the first national estimate of people living with metastatic breast cancer was released. The estimate showed that approximately 20,950 Australians are living with MBC, including around 20,800 women and 150 men.
The result was significant not only because of the number itself, but because it confirmed what many people in the breast cancer community had long known: metastatic breast cancer had been substantially undercounted for decades.
This achievement followed years of sustained advocacy by Breast Cancer Network Australia's and the wider breast cancer community.
📍 Our advocacy journey
✅ 2022: Breast Cancer Network Australia released the Making Metastatic Breast Cancer Count issues paper on MBC Awareness Day.
✅ 2023: We convened leading cancer and data experts at a national roundtable and developed a roadmap for collecting stage and recurrence data.
✅ 2024: The Australian Government committed $1.5 million to the Australian Institute of Health and Welfare (AIHW) to deliver a national estimate of people living with MBC and scoping a national cancer registry.
✅ 2025: Australia's first national estimate of people living with MBC was published.
While this progress is worth celebrating, the work is not finished.
A one-off estimate is an important first step, but it does not create a sustainable system for knowing the number of people with metastatic breast cancer over time. Currently, people living with MBC are still not routinely identified as a metastatic population within Australia's cancer registries, and information about stage at diagnosis, recurrence and disease progression is not consistently collected or reported nationally.
📊 The Next Step: Building Better Cancer Data
Breast Cancer Network Australia is continuing to advocate for a Multijurisdictional Cancer Registry (MCR) that would connect cancer registry data across states and territories.
A national cancer registry would help build a more complete picture of cancer in Australia, including information about stage, recurrence, progression and outcomes. Importantly, it would help ensure that people living with metastatic breast cancer are counted consistently, not just once.
We have raised this issue directly with the Prime Minister, the Minister for Health, Disability and Ageing, and the Department of Health, Disability and Ageing.
Accurate data is not simply about numbers. It influences decisions about:
💙 Healthcare planning
💙 Treatment access
💙 Support services
💙 Research priorities
💙 Future policy development
As we often say, counting people is not the end goal. It's the foundation for delivering better care, better policy and better outcomes.
🗣️ Your Voices Are Shaping Breast Cancer Network Australia's Future Advocacy
One of the most important pieces of work we've undertaken this year has been the development of Breast Cancer Network Australia's next Policy & Advocacy Strategy.
Between 29 July and 26 August 2026, 2,859 people participated in our Policy & Advocacy Strategy survey. We heard from people diagnosed with breast cancer, family members, carers, health professionals, consumer advocates and many others. The survey was co-designed with Breast Cancer Network Australia's Consumer Representatives and conducted in partnership with Deakin University.
Thank you to everyone in the Online Network who took the time to contribute. ❤️
When we asked where Breast Cancer Network Australia should focus its advocacy efforts over the next four years, respondents identified these as the top priorities:
- Early detection and screening (53.1%)
- Affordability of tests and treatments (34.7%)
- Equitable access to treatment (28.1%)
- Regional and rural access (23.7%)
Several themes emerged consistently throughout the survey.
💰 Cost remains a major challenge
The financial impact of breast cancer continues long after diagnosis. More than 84% of respondents identified treatment-related costs and out-of-pocket expenses as a moderate or major issue during treatment, with concerns increasing after treatment.
🌏 Where you live matters
People living in regional, rural and remote communities reported greater challenges accessing services, highlighting the ongoing importance of addressing geographic inequities in care.
🧠 Emotional wellbeing remains a priority
Support for fear of recurrence and access to mental health support were among the highest-rated concerns after treatment, demonstrating the lasting emotional impact of a breast cancer diagnosis.
🧭 Navigating care can be difficult
Almost three-quarters of respondents reported care coordination and navigating the health system after treatment as a moderate or major challenge.
🎗️ A Community-Wide Concern for Metastatic Breast Cancer
One finding stood out clearly.
Respondents rated metastatic breast cancer as the part of the breast cancer experience associated with the greatest challenges. More than 82% of participants said the challenges faced by people living with MBC were very or extremely significant, a higher rating than any other stage of the breast cancer experience.
This result reinforces something important: concern for people living with metastatic breast cancer extends across the entire breast cancer community.
Whether someone is newly diagnosed, in active treatment, living well after treatment, supporting a loved one, or living with metastatic disease themselves, there is strong recognition that more must be done.
The survey findings are now being analysed and there will be ongoing focus groups that our with consumers and stakeholders, including an invitation to participate extended toward this wonderful Online Network community – these voices will continue to shape Breast Cancer Network Australia's Policy & Advocacy Strategy 2030
🌎 Taking Australia's MBC Advocacy to the Global Stage
Australia's work to improve metastatic breast cancer data is also attracting international attention.
Breast Cancer Network Australia recently contributed to Strengthening Data Collection and Insights for Metastatic Breast Cancer, an international initiative led by The Health Policy Partnership. New advocacy resources, including an infographic and call-to-action video, were released this month, with a policy brief launching on MBC Awareness Day.
This international collaboration highlights a growing global recognition that improving data collection is essential to improving outcomes for people living with metastatic breast cancer.
💗 Looking Forward
Breast Cancer Awareness Month is an opportunity to celebrate progress, reflect on challenges, and spotlight the issues that still need attention.
This October, we are committed to making sure awareness reflects the whole story of breast cancer. That includes ensuring people living with metastatic breast cancer are visible in the data, represented in policy discussions, and supported through meaningful improvements to care.
Thank you for continuing to share your experiences, insights and advocacy with us. Your voices shape our work and strengthen our advocacy every day.
Together, we can help create a future where no life is limited by breast cancer. 🎀💕 Together, we are stronger 💪
Updated 23 hours ago
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