Finally 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📣 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🎉🏃♀️Celebrating Sarah’s incredible marathon milestone!
We love sharing moments of strength, joy, and achievement from within our community, and today we are celebrating some truly wonderful news from Sarah, one of our Consumer Representatives. This week, Sarah completed the London Marathon, an extraordinary achievement at any time, and even more remarkable while living with metastatic breast cancer. Covering 40 kilometres through some of London’s most iconic sights, Sarah described the day as “big” in every sense. From Big Ben to the Tower Bridge and a powerful finish down The Mall, it was a marathon filled with determination, challenge, and unforgettable moments. Like many long distance runners, Sarah experienced highs and lows along the course. She started strong, slowed to soak up the atmosphere, and faced the infamous wall later in the race. With grit and resolve, she regrouped, kept moving forward, and finished strong, supported by the cheers of the crowd and the encouragement of loved ones along the way. What makes this milestone especially meaningful is the reflection Sarah shared afterwards. For the first time, she embraced that being “awesome” is not about times or performance, but about showing up, persevering, and doing something extraordinary simply by being there. Only a small percentage of people ever complete a marathon. Fewer still complete more than one. And the number of people who have completed 13 marathons while living with metastatic breast cancer is incredibly small. That makes this achievement not just impressive, but deeply inspiring. Sarah also shared how powerful it was to see the stories of others running for loved ones, causes, and personal reasons. A reminder of how sport, movement, and community can connect us and lift us up in unexpected ways. We are so grateful to Sarah for being willing to share her experience with our community. Stories like this remind us that there is no one way to live with metastatic breast cancer, and that moments of strength, pride, and joy still matter. 💪 Congratulations Sarah! Sarah is a member of the Seat At The Table consumer representative group. For more information on this program and how BCNA is ensuring lived experience is at the core of every policy change and research project, visit: https://www.bcna.org.au/our-impact/for-consumers/seat-at-the-table-program Join BCNA's Online Network group for people living with metastatic breast cancer.
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 TeamEvery 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 QueenslandWelcome New Members - 9th May 2025
Welcome to members who recently joined our community since the new platform update at the end of March. We hope you are enjoying the conversations! ads000au 543 JMA Cinta8 shipship Travelmac Madfairies inkblot58 BrendaB marglav Positiveus Nala25 TanyaT6 NDS Minka Amber77 Jane1981 Roses AliceM Pompeygirl2022 Danniskye Anna25 Beatrixb Amanda1909 Jaffa Sammy70 BelindaC ccross Allied Dennie Higgsy mel51 Posi Arnie07 TNBCHubby Marion50 suziq123 Lisaj53 Dayle Laura_5 Kym72 Tilbee jw2025 Coll1102 Jithin LaceysMum Bex Hurstmel helent Jaime rlb Bumblebee Nannybelle TC80 sueper70 thelifeofKH Tessa75 Melsie11 C_Honey JudithN LA Jo195 LQ emma85 Shereeh5 glasskat Jillie Lulijus Angela111 tnbc_2025 ABC123 Mazza1949 trinity_sue lollyshopgirl Sharkyswim Loralie1996 Youngad StephBfree Caz_ Fun-1 SJ11 bl glen Annie62 Cazza12 Subie01 shubhangifusam Sensi_713 Shelleigh Milan irob JMM j777 Fulyn Kirt April2025 larazon sfishe10 geeg susieq1969 LauraB27 vixterh Tetel Ando Cath74 EJM Miftymel Oddangie Sue12 Rose1988 nicholsmi Cath_68 Nani Leeo AJay Prim79 Braktas1 NelzD80 SamG latteandleaves Palmy66 Kevinamada LisadoesBC Livinglife111 Thames Jen5 paulina_gtzr kjwhite01 Dollycat1 Scotland123 DL_4481 JessEA scoutblazing A81 Gidget QP Ally327 Suzie54carter ljames Una Jane1970 Lizzie27 Ashkii LULUSMUM Vicki27 Ritam 3749447 TCH mezmf Jo-SA AnnieM42 Jewelzbee Aries01 Lisa76 layna PatW netney ThinLizzy HoneyBee3 Lou25 Neeke45 Wenzaroo11 CKewley jackie-1957 KA Shellby katethompson3 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 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.💬 Access to treatment matters - an update on Tucatinib
Right now, hundreds of Australian women with HER-2 positive breast cancer are stuck in limbo, denied affordable access to a life-extending drug, Tucatinib. Tucatinib has been approved for listing on the Pharmaceutical Benefits Scheme (PBS) by our own government, and is easily available for women in other countries. Despite the urgency, negotiations between Pfizer and the Australian Government have stalled, denying Australian women affordable access, and they're running out of time. It’s a trend we’re seeing more often with other drugs and health concerns: delay tactics from big pharmaceutical companies and lack of leadership from the Australian Government. All the while, it’s the patients who suffer. We won’t stop fighting for these women to live a better quality of life and have more time with their families while they still can. Vicki Durston, BCNA’s Director of Policy, Advocacy and Support Services, explains how our system is failing women with metastatic breast cancer and that we must address the growing threat to medicine access caused by big pharma stalemates. Read more about this and how it affects Australians like Georgie Cooper, 46 years old with 3 teenagers living in Melbourne who has been navigating metastatic breast cancer for eight years.💊Advocacy Update: Standing Strong for Access to Tucatinib
We wanted to share an important update on BCNA’s advocacy for tucatinib, a targeted therapy used to treat HER2‑positive metastatic breast cancer. 📍 Where things currently stand While tucatinib has received a positive PBAC recommendation, talks to secure its listing on the PBS have stalled, particularly around pricing between the Australian Government and Pfizer. In the meantime, the current cost to patients is around $64,000, creating significant financial barriers and uncertainty for those who need it. 🔥 Advocacy momentum is building Momentum in BCNA’s advocacy continues to build, with strong media engagement helping to raise awareness, including an article in The Australian, coordinated activity across BCNA’s Instagram, Facebook and LinkedIn channels, and a radio interview on ABC Melbourne. Each of these moments helps keep tucatinib access firmly on the public and policy agenda. 🤝 What comes next Behind the scenes, we are actively progressing advocacy with both government and Pfizer, and a number of potential pathways are being explored to address this. We remain focused on keeping pressure on Pfizer and decision-makers while also identifying any interim options. We’ll continue to keep you informed as things progress and will reach out if there are any specific actions we’d like your support with.20,950 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.
