⭐ How Australia Built Its First National MBC Estimate
Last week, I had the honour of announcing the outcome of BCNA's 3-year project, as the technical report underpinning Australia’s first national estimate of metastatic breast cancer was released. This milestone was delivered through a national collaboration between AIHW, Cancer Australia, the Department of Health, the Australian Cancer Data Alliance, state and territory cancer registries, data leaders in NSW, Victoria and Queensland, and BCNA. Using “new innovative methods”, the report found that “approximately 20,800 Australian women and an estimated 150 Australian men were living with metastatic breast cancer in 2024.” This work addresses a long-standing gap, with “Australia’s cancer data system currently fragmented” and most state and territory cancer registries not reporting stage at diagnosis unable to record whether a cancer has relapsed or recurred to metastatic. 🔍 How the estimate was created. The technical report highlights several key developments: “the development at AIHW of the national linked cancer and treatment analysis asset (CaT-Link)” “development of a counting method and estimates for NSW by the CINSW and associated researchers” “estimated MBC prevalence in Queensland and Victoria by CAQ & CCV” “counts for three states… which cover a large proportion of the Australian population” These inputs enabled AIHW “to estimate national prevalence, as well as indicative estimates for each state and territory.” 🔭 What’s next? Phase 2 will “rely on the use of soon to be available linked data” through the National Health Data Hub to produce “more complete and reliable estimates and analyses for specific populations.” This national estimate is the first step in delivering the vision set out in BCNA’s 2023 roadmap delivered to government , Cancer Australia’s Australian Cancer Plan, and the National Cancer Data Framework. The priority now is to call for deepened jurisdictional and state data. We want researchers, industry, governments and policymakers using this evidence immediately to drive planning, investment and reform. 👉 I've attached the two important reports for you below. Give them a read and comment below what stood out the most for you 💬 AIHW report : https://lnkd.in/gKMAnqpY BCNA From Invisibility to Influence: Progress on MBC data reforms in Australia: https://lnkd.in/gngYrngy20,950 pledges for 20,950 Australian living with metastatic breast cancer
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. ✨ Being counted is fundamental to being cared for ✨ 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. 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 today.📣 20,950 Australians.
After 27 years of BCNA advocacy, we've reached a milestone moment: For the first time, Australia has a national figure for people living with metastatic breast cancer (MBC). That number is 20,950 Australians. These are people with unique, long-term needs who, until now, have been invisible in our health data and largely overlooked in health system planning. On 27 November, we officially announced this landmark data alongside our report; 👉 From invisibility to influence: progress on MBC data reforms in Australia. Together, we can ensure this data translates into meaningful change. People with MBC deserve a health system that sees them, plans for them, and supports them to live longer and live well. This data gives us the foundation to make that happen - but only if we maintain the momentum. What can you do? Sign BCNA's pledge calling for investment in ongoing MBC data collection in all states and territories. 👉 Sign the pledge today 📞 For further support or questions about this announcement, call our Helpline on 1800 500 258 Monday-Friday 9am-5pm AEDTBCNA responds to GP breast density guidelines.
Breast Cancer Network Australia (BCNA) welcomes today’s release of national clinical guidance to support GPs in managing and advising women with high breast density. 🩺 This new GP guidance accompanies the national move toward breast density notification, and BCNA strongly supports all BreastScreen programs informing women of their breast density as a minimum standard. Women have a right to this information, and today’s guidance provides GPs with clear, evidence-based pathways to support decision-making, risk assessment and referral to appropriate imaging where clinically indicated. ✨ Breast density is one element of breast cancer risk and must be considered alongside family history, genetics, previous breast conditions, lifestyle factors, and overall personal risk. This comprehensive guideline gives GPs the tools they need to confidently assess risk and discuss supplemental screening options with women who may require further imaging. 🫶 BCNA also welcomes the collaborative approach taken by BreastScreen Australia and acknowledges the inclusion of lived experience in shaping these guidelines. Ensuring consumer voices were part of the development process strengthens the guidance and ensures it reflects the real needs and concerns of women. 📣 We now call for strong promotion, education and dissemination of this guidance — particularly in rural and regional communities — to ensure equity of access to information and screening options for all women, regardless of where they live. BCNA will continue to advocate for clear communication, consistent national practice, and equitable access to screening and follow-up imaging for every Australian affected by breast cancer 🗨️ Quote from Vicki Durston, Director, Policy, Advocacy & Support Services, BCNA: “We welcome these guidelines which give GPs clear direction on managing breast density and associated risk. We commend BreastScreen Australia for this comprehensive work and for embedding consumer perspectives. We now need strong national promotion so GPs can easily access this guidance, and we urge states that have not prioritised breast density notification to act to prevent widening inequities.” 🗨️ Quote from BCNA Consumer Representative, Krysty Sullivan: “My cancer was hidden by dense breast tissue, and I know how dangerous that can be. Mammograms are essential for all women over 40, but women with dense breasts may need additional screening. These new GP guidelines are a significant step to help women understand their risks and access extra screening that could save their lives. I’m proud to have been one of the BCNA Consumer Representatives working alongside experts to help shape them, but cost and access will still hold too many women back. Early detection shouldn’t depend on where you live or what you can afford. My cancer was found late; these guidelines can help ensure other women find theirs sooner. We urgently need the states and territories that are not yet reporting breast density to start.”Advocacy Update - Vicki Durston - Nov25
It was such an honour to co-chair the impactful 90 minutes of presentations and panel discussion alongside Carla Whitbread, fellow board director, at the ABC Global Alliance. Our focus was on stigma, isolation, and awareness for those diagnosed with advanced breast cancer (ABC), aligning with Goal 8 of the Global Decade Report. ✨ One of the most profound moments was Tanja Spanic sharing her lived experiences and highlighting the harsh reality of misconceptions and stigma in the workplace. Whilst policies in Tanja’s country have unlimited sick leave , which sounds appealing, the struggle to return to work is very real. 👏 Claire Myerson - advocate from the UK delivered a powerful message about the economic implications of investing in women's cancers, reminding us that “I am so much more than my cancer,” and urging, “Don’t write us off; invest in us.” Her emphasis on the necessity for data visibility in the UK and national cancer care plans sparked important conversations with government representatives, showcasing the potential for change through global collaboration and partnership. 🔍 Ranjit Kaur emphasised the progress made over the last decade and outlined critical calls to action as we look ahead to the next ten years. This commitment to raising awareness around metastatic breast cancer is essential for educating communities to reduce stigma and isolation. 🌟 Adele Gautier also contributed invaluable insights, enriching our discussions with her perspective and expertise. Thank you to everyone who participated, both onsite and online, for making our panel discussion so impactful. 💬 I’d love to hear from you! How can we, as a national community, work together to reduce stigma and isolation for those living with metastatic breast cancer? Share your thoughts, experiences, or resources in the comments - your voice matters in driving change. Vicki Durston, Director Policy & Advocacy, BCNA📊 The numbers are out.
Australia continues to lead globally in breast cancer survival rates. The latest 2025 data reveals: ❣️ Five-year survival has risen to 93% (up from 75% in 1987–1991). ❣️ In 2025, around 20,336 people will be diagnosed with breast cancer, including 207 men. ❣️ Breast cancer remains the most common cancer in Australian women, making up 27% of all new cases. ❣️ The average age of diagnosis is 62, with 80% of cases occurring in women over 50. ❣️ Metastatic breast cancer remains undercounted, but estimates suggest up to 16,000 people are living with it in NSW, Victoria, and Queensland. BCNA continues to advocate for national data collection. These statistics highlight both progress and ongoing challenges in breast cancer care and support. Most importantly, they remind us of the big picture behind our WHY - together we work to improve these numbers year on year. 👉 Click here to read more and download the infographic.
Metastatic Breast Cancer Awareness Day
On this Metastatic Breast Cancer Awareness Day, we acknowledge that Metastatic Breast Cancer (MBC) is treatable but incurable. Katie shares what she wants others to know about living with MBC and her message for other young women. Watch the full video here BCNA has information and resources for those living with MBC. Read more about our latest international MBC advocacy efforts here: Count Us In. From Australia to the world: Leading the push for global metastatic breast cancer visibilityFriday Update - 1st August 2025
Hello and welcome to our Friday Update! Whether you’re new to the BCNA Online Network or a long-time member, we’re so glad you’re here. This safe space built on connection, understanding, and shared experience. Last month, we’ve seen powerful conversations, and practical advice shared across the community. From navigating treatment side effects to finding emotional support, your contributions continue to make this network a safe and empowering place for all. If you’re just joining us, we encourage you to explore the forums Get started here introduce yourself, or simply read along. And if you’ve been with us for a while, thank you for continuing to support others. 💬 Trending Online Network Discussions – July 2025 Bone and join pain side effects of chemotherapy Offering practical advice and emotional support for those newly starting chemotherapy treatment. From bad to worse, but getting better. Metastatic breast cancer (MBC) after previously having early-stage cancer. Kindly sharing story with the community, sparking conversation and shared experiences. Implant or Autologous Flap? Exploring reconstruction options post-mastectomy, with members sharing their experiences with implants versus DIEP flap procedures. WHO do I tell? Emotional challenges of disclosing diagnosis to loved ones. Members sharing advice on navigating conversations with family and friends. Letting go of blame - WHY did I get cancer? Inspired by a BCNA podcast, this discussion sparks meaningful dialogue about emotional healing and self-compassion. 🌟 BCNA Highlights – July 2025 Expanding the ‘Seat At The Table’ Program BCNA continued to grow its internationally recognised Consumer Representative Program Seat at the Table program , empowering people with lived experience to influence cancer research, policy, and care. This initiative ensures that real voices shape decisions that affect breast cancer patients nationwide. BCNA Consumer Representative Kym shares what she thinks Do you think it’s important that those with lived experience are involved in research? Global Advocacy for Metastatic Breast Cancer BCNA joined forces with Breast Cancer Now (UK) and Rethink Breast Cancer (Canada) at the Australian High Commission in London to launch a joint advocacy pledge. The united call to action urges governments and health systems worldwide to count and recognise people living with metastatic breast cancer; a critical step toward improving care, visibility, and support. Watch Together for visibility, equity, and support! Exciting News! BCNA is proud to welcome Red Energy as our inaugural Principal Partner. This partnership marks a significant milestone in our mission to support all Australians affected by breast cancer. Together, we’re powering hope, connection, and change. Stay tuned for more on how this collaboration will make a meaningful impact. Male Breast Cancer Awareness In November 2024, Martin noticed signs that something was wrong with his health. Read his story via the link Humbled by the love and support 📅 BCNA Events BCNA Pink Lady Match – Sunday 10 August 2025 Join BCNA and major partner Red Energy at the Melbourne Cricket Ground (MCG) as the Melbourne Demons take on the Western Bulldogs in support of Australians affected by breast cancer. Watch video Pink Lady Match is back, and tickets are on sale now Event Schedule 1:30 PM – BCNA Tribute Field opens in Yarra Park 1:30 PM – BCNA merchandise available outside Gate 1 and between Gates 5–6 2:00 PM – MCG gates open; attendees take seats for entertainment and pre-match ceremony 3:00 PM – Players enter the field 3:20 PM – Match begins Carman’s Fun Run Sydney– Sunday 21 September 2025 🏃♀️ Location: Metcalfe Park, Pyrmont, Sydney Time: 6:00 AM – 1:00 PM AEDT Event Options Half Marathon (21.1K) – Wave A: 7:15 AM | Wave B: 7:20 AM 10K & 5K Runs – Waves start from 9:00 AM Pink Lady 5K Walk – Starts at 10:15 AM Read more and register via the link Carman’s Fun Run 2025 - Sydney That’s a Wrap! Thank you for joining us for another month of connection, support, and shared strength in the BCNA Online Network. If you have any questions, concerns, or feedback, please don’t hesitate to reach out to our moderators via BCNA_Mod or email helpline@bcna.org.au . We’re here to help and always happy to hear from you. Until next time, take care and stay connected! BCNA_Mod TeamCount Us In. From Australia to the world: Leading the push for global metastatic breast cancer visibility
BCNA has teamed up with global partners to launch a powerful new pledge calling for visibility and support for people living with metastatic breast cancer (MBC). The message? Just because MBC is incurable doesn’t mean people should be invisible. This global push—unveiled at Australia House in London—brings together voices from Australia, the UK, and Canada, demanding better data, recognition, and care for those living with MBC. It’s a bold step toward making sure no one is left out of the picture when it comes to cancer care. Read the full media release via the link Count Us In. From Australia to the world: Leading the push for global metastatic breast cancer visibilityFinally counted: A milestone for Victorians living with metastatic breast cancer
For the first time, Victoria has counted everyone living with metastatic breast cancer in the state, marking a major step forward for visibility, recognition, and support. New data released by the Victorian Cancer Registry (VCR) estimates that 4,461 Victorians are living with metastatic breast cancer, making them visible in the health system and ensuring their needs can are not overlooked. This achievement is the result of decades of consumer-led advocacy by Breast Cancer Network Australia (BCNA), collaboration with the Victorian Cancer Registry and Cancer Council Victoria, and the determination of women living with metastatic breast cancer who have long called for change. Read more via the link Finally counted: A milestone for Victorians living with metastatic breast cancer
