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
Supporting you through the current media coverage
Good morning all, As we’ve seen unfold in discussions over the past week in the online network, many of you have been impacted by the media surrounding a celebrity’s choices during their own cancer treatment. This is not the first time, nor the last, that a high-profile person will make statements that can affect those of us who have experienced breast cancer diagnosis and treatment. Some of the things you may be feeling at the moment include: - Feelings of doubt, fear, or shame in managing your own breast cancer experience. - A fear of recurrence or progression, which might lead you to question your evidence-based treatment plans. - Being at risk of ‘emotion-based’ decision making when it comes to treatment pathways or second-guessing any of your evidence-based treatment protocols. We are aware that some people may need support at the moment, and we wanted to take the opportunity to reach out. Our priority at BCNA will always be to ensure you feel empowered, informed, and secure in the choices you make with your own treating team following a breast cancer diagnosis. Clinical Psychologist, Dr Charlotte Tottman and BCNA CEO, Kirsten Pilatti filmed a member-focused discussion around recognising, managing and dealing with emotions or triggers that may have been raised by this recent coverage. It includes qualified advice and strategies on how to manage what you may be feeling. The intention is not to provoke unwanted emotions, but to provide information which may assist your wellbeing at this time. Proceed only if you are comfortable with potentially sensitive topics around breast cancer. https://www.youtube.com/watch?v=Eb6hKrI1rhs Accessing quality, evidence-based information to guide treatment decisions is crucial when dealing with a breast cancer diagnosis. At BCNA, we ensure that individuals diagnosed with breast cancer receive information that is grounded in the best available clinical evidence. In addition to the Online Network, BCNA can help you to cut through the noise by providing access to reliable information and resources at bcna.org.au, as well as support via our free Helpline on 1800 500 258.BCNA statement about Elle Macpherson's treatment decisions
Breast Cancer Network Australia (BCNA) would like to address recent media coverage regarding Elle Macpherson's statements about her personal approach to breast cancer treatment. Elle Macpherson's choices highlight the deeply personal nature of treatment decisions following a breast cancer diagnosis. BCNA respects Elle Macpherson's right to share her experience and acknowledges that every breast cancer experience is unique. All individual breast cancer diagnoses and experiences are different. BCNA recognises Elle Macpherson's right to discuss her own breast cancer experience through her own lens and support her right to make the choices she feels are best for her circumstances. It’s important to recognise that everyone’s diagnosis and every treatment path is unique and shaped around their individual diagnosis. When public figures discuss their health experiences, it brings valuable attention to important issues. However, BCNA believes it's crucial that these discussions do not lead to doubt or fear among others facing similar diagnoses. Our priority is to ensure that people feel empowered and informed in the choices they make following a breast cancer diagnosis. BCNA advocates for the importance of accessing trusted, evidence-based information to guide treatment decisions. While a healthy lifestyle, including good nutrition, exercise, and mental well-being, plays a role in cancer care, we emphasise the importance of consulting healthcare professionals and relying on the expertise of your treatment team to make informed decisions for you. BCNA's role is to cut through the noise and help people navigate what is a very stressful time in their lives. We provide free information and resources to those with a breast cancer diagnosis at a time they need it most, along with support via our free Helpline. For more information or support, please visit our Information and Resources Hub or call our Helpline at 1800 268 002.BCNA Leads First National Roadmap to Collecting Metastatic Breast Cancer Data
A roadmap to finally count the number of people diagnosed with incurable and life limiting metastatic breast cancer (MBC) is a step closer thanks to the $1.5 million announced over the weekend by Prime Minister Anthony Albanese to fund a cancer data alliance. Almost two years ago a group of Breast Cancer Network Australia (BCNA) consumer representatives living with metastatic breast cancer told us they feel invisible. They wanted to be made visible by being counted properly on all our cancer registries across Australia. Currently this data is not consistently collected across all states and territories. Last November BCNA launched the roadmap to address the lack of national cancer data for those living with MBC at Parliament House, Canberra. The roadmap was the result of a roundtable that saw experts from across the sector work towards recommendations to improve Australia’s cancer data, which aligns with one of the priorities of the first Australian Cancer Plan, launched last year. BCNA Director Policy Advocacy & Support Services, Vicki Durston acknowledged everyone who had come together to make this roadmap a reality, including the late Peta Murphy MP who stood with BCNA for many years to have people with MBC made visible through national data collection. “She would have been so incredibly proud that we are now closer to ensuring that the many thousands of invisible Australians with metastatic breast cancer will no longer be hidden in plain sight,” Ms Durston said. “We know that cancer sectors in other countries around the world are watching Australia, this is our chance to build on progress being made and to become a world leader in health data.” This $1.5 million funding to the Australian Institute of Health and Welfare will ensure the formation of an Australian Cancer Data Alliance, which will see state and territory cancer registries supported to work towards routinely collecting cancer stage and recurrence data. “This Federal Government funding will help the sector pioneer the collection of this important data to inform and drive policy, innovation, planning, treatment and care,” Ms Durston said. “How can we possibly support this population living with metastatic disease and meet their needs when we don’t know how many people in Australia are living with metastatic breast cancer? “Today we can begin consolidating a way forward for better quality data not just for breast cancer, but for all metastatic cancers.” BCNA has been calling for improvements to Australia’s cancer data since 1998 and will today mark this key milestone alongside all those with a lived experience of cancer and their advocates. Read BCNA’s report Time to Count People with Metastatic Breast Cancer – A Way ForwardBCNA calling out the government - failing to protect Australians from genetic discrimination
Breast Cancer Network Australia (BCNA) is calling out the government for failing to protect Australians from genetic discrimination while showcasing its new genomics framework. Cancer Australia launched the National Framework for Genomics in Cancer Control this morning, which aims to integrate genomics into routine cancer care, improving outcomes through personalised medicine. BCNA welcomes the framework but condemns the Australian Government’s failure to follow through on its commitment to legislate a full ban on genetic discrimination in life insurance, a critical reform to ensure all Australians can access genetic testing without fear of financial repercussions. “The Government cannot claim progress in genomics while failing to uphold the fundamental rights of those affected by breast cancer and other genetic conditions,” BCNA Director of Policy, Advocacy & Support Services Vicki Durston says. “If genomic medicine is the future, then protections against genetic discrimination must be part of that future. “No more excuses. There must be action before an election is called or Australians are at unacceptable risk.” BCNA calls on the Government to immediately prioritise its promise to introduce a full ban on genetic discrimination in life insurance, ensuring all Australians can access genomic testing without fear. Read full media release via link BCNA calls out government for failing to protect Australians from genetic discrimination while showcasing its new genomics framework (Media Release) Take action now! ✔️ Share this post to spread the word ✔️ Contact your local MP using the form link Email your MP about delays in banning genetic discrimination | DELAYS TO BANNING GENETIC DISCRIMINATION IN AUSTRALIAAustralian women denied knowledge of their increased breast cancer risk
Approximately 10% of women have high breast density. At this point in time, thousands of Australian women are being denied important information about their breast health which could empower them to better understand and manage their risk of breast cancer. BCNA’s Director of Policy, Advocacy and Support Services, Vicki Durston, says Australia’s approach to population-based screening is not keeping pace with growing evidence that supports routine reporting of breast density. This due to the absence of national reporting standards and a lack of software in publicly funded screening services that can effectively measure breast density. “Every woman has the right to know and understand her breast cancer risk through standardised breast density reporting,” she says. “For those identified as high-risk or with high breast density, it is essential that clear options and pathways are available to support early detection and proactive risk management.” Breast Cancer Network Australia (BCNA) is currently advocating for a unified national approach to reporting breast density through Australia's national population-based breast screening program – BreastScreen. Mammography images showing the difference between spotting cancer in a fatty breast (top) vs dense breast (bottom). It's like "spotting a snowman in a snow storm". You can read BCNA's media release via the link Australian women denied knowledge of their increased breast cancer risk Read ABC's feature piece on our advocacy efforts: Mandatory breast density reporting
Article from USA re patient advocacy & metastatic bc
Thought this article was topical given some of the issues expressed on recent threads. Patient centred care and engagement with consumers to inform practice, research and priorities is the way ahead to create better outcomes for all. Best wishes to everyone for festive season. 🎄🌈 https://www.npr.org/sections/health-shots/2018/12/16/676809440/commentary-how-patients-have-transformed-a-medical-meeting-about-breast-cancer ;Friday 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 QueenslandStop telling women they are too young to have breast cancer
Early-onset breast cancer now accounts for over one-fifth of all breast cancer cases in Victoria, with 1,067 diagnoses out of 5,197 breast cancer cases. The increase is indicative of a national trend. Breast Cancer Network Australia (BCNA) is calling for greater awareness, more research, and tailored prevention efforts to address the steady increase in breast cancer diagnoses among women aged 25 to 49, as highlighted in Cancer Council Victoria’s Cancer in Victoria 2023 report. For more information, read BCNA's Stop telling women they are too young to have breast cancer media release.
