⭐ 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 AEDT
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 cancerEvery story counts
3,863 Queenslanders living with metastatic breast cancer have been counted, ending years of invisibility for this community and making sure they are seen and recognised in the health system for the first time. When we recognise the real people behind the data, we can create positive change for all, and help shape better care, support and research for Australians affected by breast cancer. Now is the time for other state and territories to act, and make sure every Australian living with metastatic breast cancer is seen, heard, and counted. Read more via the link Landmark step for women with metastatic breast cancer in QueenslandFriday Update - 6th June 2025
Hi everyone, Welcome to your Friday Update from BCNA's Online Network! As we wrap up May, we're excited to share the latest highlights and activity that have shaped our community last month. From the inspiring 25th anniversary of the Pink Bun campaign to powerful advocacy efforts and volunteer celebrations, May has been a month of connection and support. Let’s take a look at what’s been happening across the BCNA network 🌸 Pink Bun Campaign – 25 Years of Support May marked the 25th anniversary of the Pink Bun campaign, a long-standing partnership between Bakers Delight and BCNA. From 1 to 21 May, bakeries across Australia turned pink to raise funds and awareness for Australians affected by breast cancer. Highlights included: 100% of Fun Bun sales donated to BCNA. Beanies and tote bags sold to support the cause. Pink Bun Parties hosted by schools, workplaces, and community groups. Over $2.4 million raised this year and still counting! You can watch BCNA's CEO Kirsten reflect on the success of the campaign via the link Thank you from the bottom of our hearts! 🧡 National Volunteer Week BCNA celebrated National Volunteer Week by recognising the incredible contributions of its volunteers. Their dedication helps BCNA provide vital support and resources to those affected by breast cancer. 📢Advocacy and Awareness BCNA have been highlighting concerns about women being denied knowledge of their increased breast cancer risk, advocating for better access to genetic information and screening. We welcome BreastScreen Australia’s new position statement says every woman should be told her breast density because it affects both your breast cancer risk and how easily it can be detected. Some states are leading the way, but others are still catching up. Every woman deserves to know her risk and have access to support, no matter where she lives. You can read via the link Australian women denied knowledge of their increased breast cancer risk 🤝BCNA Celebrating partnerships BCNA proudly celebrates 20 years of partnership with Sussan, one of our most dedicated Major Partners. Since 2005, Sussan has raised over $3.3 million to support BCNA’s vital services and resources for Australians affected by breast cancer We share a vision to ensure every Australian diagnosed with breast cancer receives the very best care and support. Together, we’ve celebrated many achievements and milestones, paving the way for a better breast cancer experience for all Australians – no matter where they live. State of the Nation Report: Sussan's funding of the State of the Nation report has driven significant policy changes and improvements in services for people diagnosed with breast cancer. This report was the largest of its kind and armed BCNA with the information needed to identify eight priorities for urgent action and to influence the necessary change in the healthcare system to address them. Looking ahead, Sussan are focussed on supporting BCNA’s work around risk-based and individualised screening processes, ensuring the 15,000+ Australian currently living with metastatic breast cancer are visible and counted, and enhancing BCNA's digital experience for those affected. Read more about this incredible partnership via the link https://www.bcna.org.au/about-us/our-partners/ 📺 Did you catch Compass episode, “The Breast Decision,” on ABC Australia? We’re so grateful for this powerful episode, which follows Lauren’s decision to stay flat after her breast cancer diagnosis and mastectomy, and how her family navigated learning they carry the BRCA2 gene. The episode demonstrates the importance of informed decision-making and feeling empowered, whether you choose to stay flat or have a reconstruction after mastectomy. This is essential viewing for anyone navigating breast cancer, BRCA decisions, or supporting a loved one. Watch now on Compass Series 39 The Breast Decision 🎉 Event Spotlight: REMINDER Carman's Fun Run is coming to Sydney in 2025! Carman's Fun Run SYDNEY 2025! REMINDER Carman's Fun Run is coming to Sydney in 2025! Join us on Sunday 21 September as Metcalfe Park, Pyrmont, turns pink as our partners at @carmanskitchen and @solemotive bring this fantastic event to a brand-new city. Whatever your speed, we have an option for you. Choose to join our 5km, 10km or half-marathon run, or gather your friends and family for the 5km Pink Lady Walk. If you register now, you’re taking advantage of the EARLY BIRD RATE! Be quick because this discount stops 29 April 2025. Click on the link to find out how to register Register Here 👉 Let us know what you liked, what you'd love to see more of, or just say hello! Take care and keep the conversations going! @BCNA_Mod TeamWelcome New Members - 23rd May 2025
Welcome to members who recently joined our community in the past few weeks. We hope you are enjoying the conversations! mezmf bear91 Anonymous Nigella Sintah25 never_better Shar24 IDK16 Kmc GiniD Elgy Waratah shacol Linda67 184129 nowavic14 LeanneO PositiveVibes2 Sarah146 Luna_Loops Shell69 ZL HannahMich JosephineB1 Trud Modiri2 jd46 Rileyrat Kyleila Susan2025 Gigi_68 lemony Regina MB7 Clementine mis71t Jh2703 Ghadiri hmphmidgadzooks Michelle13 PygmyPossum25 Elaine66 eeyore_kun SAYO46 This forum is a supportive space where you can connect with generous members who provide meaningful support to each other. Share as much or as little as you feel comfortable with. Explore our various groups for greater peer-to-peer support. Helpful Links to Get You Started: How to start a discussion About BCNA's Online Network Check out our private groups! BCNA Online Network Groups Community Guidelines New breast cancer diagnosis? Read Living with DCIS, LCIS or early breast cancer Listen to BCNA's podcasts: Upfront About Breast Cancer: Just Diagnosed - What's Next? What You Don't Know Until You Do Metastatic Breast Cancer Diagnosis? Watch Just diagnosed with metastatic breast cancer - what's next? Get the Most Out of Our Community: Our long-time members (and newbies too!) are a wealth of information. Don't hesitate to post your questions. You can also update your profile with details about yourself, such as your breast cancer experience and where you live (e.g., Sydney, Melbourne, Regional Victoria) for more targeted responses. You may like to check some of our more light-hearted discussion threads while you are here: Friday Funnies Wise words Creative Corner! Our Gardens Need Help? Message BCNA_Mod or one of our other moderators: Daina_BCNA Mez_BCNA Astrida_BCNA Risha_BCNA Denise_BCNA . You can also contact BCNA's Helpline Manager Kate_BCNA Please Note: Please be aware that your posts and comments in the public discussions and public groups can be found and read by anyone, including those who are not members of the network. This means that what you share in a public discussion or public group may be read by a wider audience, please consider this when sharing sensitive or personal details. The Online Network is not moderated by staff/volunteers on weekends. For urgent queries, contact the Helpline Team via email at helpline@bcna.org.au or phone 1800 500 258, Monday to Friday, 9:00am-5:00pm AEST.
