📱 Help Shape a Support Program for People Living with Metastatic Breast Cancer
Researchers from the University of Sydney, in partnership with Breast Cancer Network Australia, are adapting EMPOWER-SMS, a text message support program, to better meet the needs of people living with metastatic breast cancer. They're looking for feedback on the types of support, information and messages that would be most valuable. What's involved? ✅ Complete a short online survey ✅ Takes around 15-20 minutes ✅ Share your thoughts on support needs and message content 👉 Complete the survey here🌸Sam's experience with metastatic breast cancer
Living with metastatic breast cancer is an incredibly challenging experience. As well as managing ongoing treatment and its side effects, many people face uncertainty, changing priorities, and the emotional impact of living with an incurable diagnosis. It can feel overwhelming, and there may be moments when those around you don't fully understand what this experience is like, even those with an early breast cancer diagnosis. Samantha was diagnosed with stage 3 breast cancer in 2014, shortly before her son's second birthday. After undergoing surgery, chemotherapy, radiation, and hormone therapy, she believed she was moving on with life after cancer and began rebuilding her life. However, in 2019, new symptoms led to the devastating news that her cancer had spread to her lungs and bones, resulting in a diagnosis of metastatic breast cancer. "You don't look sick": There’s this misconception that I must be fine, but I don’t think many people truly understand what metastatic cancer means.” – Sam Diagnosed with MBC in 2019, BCNA member Sam is sharing her experience to help challenge some of the common myths around living with metastatic disease – from working and maintaining relationships, to the misconception that "looking well" means you are well. 👉Read and connect with Sam's story here💛 A powerful conversation on metastatic breast cancer & intimacy
We wanted to share a powerful podcast that explores something many people experience but don’t always feel able to talk about openly, intimacy while living with metastatic breast cancer. In this Mamamia Well episode, our 2026 Pink Bun Campaign Ambassador Emily shares her journey from being diagnosed at 26 to now living with metastatic breast cancer. She speaks with honesty and vulnerability about how cancer has impacted her body, her relationships, and her sense of identity. From early menopause and financial stress to intimacy, marriage and navigating other people's expectations, she speaks candidly about the challenges of living with a disease that has no cure. What makes this conversation so powerful is the way it creates space for real, human experiences 💛 the shifts in intimacy and connection 💛 the emotional and physical changes that can feel hard to explain 💛 the importance of communication, understanding and compassion It’s a reminder that these challenges are not something you have to carry alone. 🎧 If this feels relevant to you, you can listen here: https://www.mamamia.com.au/podcasts/well/metastatic-breast-cancer-emily-harrison-suhr-intimacy/ 🤍 As always, there is no “right” way to navigate this. Your experience is valid, and it’s okay for things to look and feel different. 💬 If you feel comfortable, you’re very welcome to share your thoughts below. What has helped you navigate connection, closeness or communication during this time?🎉🏃♀️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.💬 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.
⭐ 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🗣️Help keep metastatic breast cancer on the national agenda
As we continue to push for change to ensure that people living with metastatic breast cancer are counted in Australia’s cancer registries, we’d love your input through a short survey. The survey asks you to share: - The top three challenges you face living with MBC - A time when you’ve felt invisible Your experiences will help inform an upcoming advocacy campaign. The survey is open until 11.59pm Tuesday 28th October. Take the short survey (5-10 minutes) - complete the survey here This work is vital to making sure you are visible in the data that drives cancer policy, funding and services. Thank you for continuing to be part of this important work, together we can make sure that people living with metastatic breast cancer are seen, supported and counted. If you have any questions, please contact us at [email protected]
