Count 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 visibilityImportant Announcement
BCNA’s Online Network will be temporarily unavailable from 7pm AEST, July 1, 2025, until the morning of July 2, 2025. During this time, you will not be able to access the Online Network. This upgrade is to migrate your private messages from Vanilla (the old platform). We apologise for any inconvenience and appreciate your patience as we work to enhance your Online Network experience. Our Helpline is available from 9am-5pm AEST, Monday to Friday on 1800 500 258Finally 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 TeamDNA Doesn't Lie
Hello members! If you get a chance you may like to watch this week's episode of SBS Insight DNA Doesn't Lie - BCNA consumer Linda Rudman features in the episode, speaking about how she always knew cancer ran in her family. Linda underwent genetic screening in 2019 that revealed she had the BRCA1 gene — which leads to a high risk of developing breast or ovarian cancer (You can hear more about Linda's story via BCNA's YouTube channel High risk prophylactic mastectomy BCNA Dr Jane Tiller also features in the episode, discussing genetic discrimination in life insurance underwriting and how some families are choosing between preventative genetic screening and life insurance.Friday Update - 17th April 2025
Hi everyone, We’re back with your latest update from Breast Cancer Network Australia (BCNA)—keeping you across activity happening within the organisation and the broader community. Whether you’re newly diagnosed, navigating treatment, or supporting a loved one, we hope you find the update useful. We cannot believe it is Easter already! Hope you can enjoy the time in a way that feels right for you. You may even like to grab a hot cross bun this Easter at Bakers Delight! Did you know Bakers Delight and BCNA have had a partnership for 25 years? (Read more about this amazing partnership in this update). 📚 Resource of the Month: “My Journey” upgrade If you haven't explore it it yet, BCNA has launched its new My Journey with better information and support for people impacted by breast cancer! You would've noticed that My Journey and Online Network can now be found in one place for a more streamlined user experience across all devices. We collaborated with consumer representatives and healthcare professionals in creating and reviewing our evidence-based content, ensuring the new My Journey features a broad range of the latest and most credible resources for you. Watch the video here of Naveena (BCNA Consumer Representative) talking about how to navigate the platform. If you have any questions, please go to our Frequently asked questions page in the first instance. To ensure we do not miss any of your feedback or technical issues please log these under the Get in Touch form to ensure feedback is collected in the centralised area. A special thank those of you who have supported us with feedback and troubleshooting solutions during the transition to the new platform. 📢BCNA in Action: Policy Priorities 2025 With breast cancer being the most common cancer affecting Australian women, annually it is costing the Australian Government nearly $1.8 billion. As we approach the federal election, BCNA is advocating for systemic change in four key areas: Reducing the financial costs of breast cancer treatment and support – Women with breast cancer experience high out-of-pocket healthcare costs as well as indirect costs such as loss of income, leading to substantial financial burden. Prioritising risk-based stratification for early detection and breast screening programs – Genetic conditions and breast density can significantly increase breast cancer risk. Access to specialist diagnostic and screening tests is limited due to restrictive eligibility criteria, cost, and workforce shortages, particularly in regional areas. Addressing unmet supportive care needs for people impacted by breast cancer – Advances in treatment continue to improve survival rates, but physical and emotional impacts such as chronic pain, fear of recurrence, and lymphoedema remain complex and require greater attention. Investing in a sustainable and comprehensive cancer data ecosystem – The lack of comprehensive cancer data, including metastatic staging and recurrence, limits evidence-based healthcare planning and investment. In addition to these priorities, BCNA continues to work alongside the Australian Access to Breast Reconstruction Collaborative Group (AABRCG) to advocate for those at inherited risk of breast cancer to access surgery as a Category 2 rather than Category 3 - preventing people from being diagnosed with breast cancer while they wait for essential risk reducing surgeries. To read more about this collaboration click here. We are also continuing to drive policy reforms that enhance metastatic breast cancer (MBC) staging and recurrence data reporting. 📢BCNA in Action: National Cancer Survivorship Conference 2025 BCNA recently hosted a pre-conference workshop From Patient to Partner: Unlocking the power of consumer engagement at the 2025 National Cancer Survivorship Conference , aligning with the conference’s goal of building capability and capacity in survivorship care and research. The workshop focused on strengthening research impact through effective consumer-researcher partnerships. The session explored best practices for embedding consumer voices in research to enhance study design, improve relevance, and drive meaningful translation into clinical practice. Led by BCNA, in partnership with COSA, the University of Queensland and Translational Research Institute, the workshop highlighted collaborative approaches to integrating consumers into survivorship research, supporting sector-wide learning and capability building. BCNA funded the attendance of BCNA Consumer Representatives and supported the involvement of other peak cancer NGOs involved in the ACNNP to come together. There was shared interest to prioritise reducing barriers and increasing participation in consumer engagement in research, policy and practice. For those newer to consumer engagement, conversations provided encouragement on how to keep moving forward with curiosity and respect. We look forward to sharing the formal evaluation outcomes with all participants and our network. Hear about the conference highlights 🤝BCNA Celebrating partnerships RED ENERGY For a decade now, Red Energy has turned pink for BCNA. Yesterday BCNA and Red Energy celebrated an incredible 10 years of partnership. Since 2015, Red Energy has supported the 58 Australians diagnosed with breast cancer, including being a Major Partner of Pink Lady Match and Pink Sports Day program, which galvanises communities across Australia. Red Energy’s belief in BCNA’s cause manifested itself in the development of the Red BCNA Saver Plan*, through which Red Energy has contributed over $2.3 million on behalf of its customers. 🔗Read more about the impact of this colourful and thriving partnership via the link Red Energy's 10 years of turning pink for BCNA BAKERS DELIGHT From 1–21 May 2025, Bakers Delight bakeries across the country will turn pink to show their support for Australians affected by breast cancer. This year marks a very special milestone, 25 years of partnership between Bakers Delight and Breast Cancer Network Australia (BCNA). Together, we’ve raised over $27 million to ensure that no one diagnosed with breast cancer is unsupported. 🔗Read more about this incredible partnership via the link Bakers Delight Breast Cancer Campaign Partnership 🎉 Event Spotlight: Carman's Fun Run is coming to Sydney in 2025! Carman's Fun Run SYDNEY 2025! We’re thrilled to share that the wildly popular Melbourne event 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 👂 We Want to Hear From You! What topics do you want to see more of in the community? Share your feedback, questions, or ideas via helpline@bcna.org.au or reply directly to this post. Take care and keep the conversations going! @BCNA_Mod Team
Watch this space!
We’ve been listening to your feedback and we’re excited to announce that the Online Network will be moving to a new platform in early 2025! This has been designed to better serve your needs. This will mean you will only need one login, one password for the Online Network and all our resources. We are committed to improving your experience, and we can’t wait to share these new features with you in the New Year. Keep an eye out for regular updates in early 2025.Friday Update (20/12/24) - BCNA Christmas Closure Details
Hello members! As we find ourselves in the last month of the year, we reflect on the activities BCNA have undertaken in 2024 (Highlights shared in the update), while acknowledging the work still ahead. This December, we are filled with gratitude for the strength, resilience, and hope that defines the breast cancer community. Whether you are a someone living with or beyond breast cancer; metastatic breast cancer; a caregiver or loved one - we hope the Online Network continues to be a safe place you can turn to for support and information. To our regular contributors to the Online Network that 'stick around' to support others, we appreciate the invaluable support you spread throughout the forum and the positive ripple effect that you may not see. Enjoy the update! BCNA Helpline over Christmas and New Year BCNA’s Helpline will be closed from 5pm Monday 23 December and will reopen on Monday 6 January at 9am (AEDT). During this time, you can request a call back, when we reopen by filling out this form. If you are looking for information about breast cancer, read Resources during the festive season page on our website. If you require additional support through this time, please contact one of the following organisations: Cancer Council www.cancer.org.au or 13 11 20 (available 27-31 December from 11am – 3pm (AEDT)) Beyond Blue www.beyondblue.org.au available 24/7 Lifeline www.lifeline.org.au available 24/7 For First People, 24/7 support is available at 1300YARN (12 92 76) www.13yarn.org.au For LGBTIQ+ people call or webchat with QLife at www.qlife.org.au or 1800 184 527 (available everyday 3pm-midnight) Online Network over Christmas and New Year You can continue to connect with others, here on BCNA's Online Network (available 24/7). Mez, Daina and Kate will be moderating the Online Network over the closure period should you need to send a private message for urgent matters you can include all moderators in your message. To send a private message from your laptop/desktop click the envelope next to your profile picture and click on the highlighted picture below; type in the moderator’s names in the ‘recipients’ Mez_BCNA Kate_BCNA Daina_BCNA. Type the body of your message and hit ‘Post Message’ button; To send a message from your mobile device you will click on your profile picture and then the envelope will be on the top-right (screenshot below): Community highlights Christmas Funnies In the spirit of Christmas Funnies ....... put them up here for a laugh! Popular forum discussions You may be interested in several forum discussions that have received the most comments in December: Lost Temp up Experience with suction/negative pressure dressings New and need to make some big decisions Not sure my future is looking bright BCNA Community News - 2024 Highlights Counting people with metastatic breast cancer: a step closer - 05 Feb 2024 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 Prime Minister Anthony Albanese to fund a cancer data alliance on Saturday 3 February Read full article here. Carman's Fun Run raises $285,000 for BCNA - 22 Feb 2024 Melbourne turned on perfect weather as 6,100 participants ran or walked to support Breast Cancer Network Australia (BCNA). With support, BCNA has raised over $285,000 through Carman's Fun Run this year, and the donations are still coming in! All funds raised help BCNA to continue our work to ensure that all Australians affected by breast cancer receive the very best care, treatment and support. We are incredibly grateful for everyone's efforts through online fundraising and by getting involved on the day. We would also like to thank the Gaudry Foundation for their generous dollar matching donation of $10,000. Don’t forget to register and participate in Feb 25! BCNA Impact Report- 29 Feb 2024 We hope you enjoy reading about our many achievements, the significant milestones we’ve reached, and the personal messages from individuals who, with your support, have been helped in numerous ways by BCNA. Please read the report via the link 2024 Impact Report BCNA welcomes pharmacy prescription changes for breast cancer medications- 05 March 2024 From 1 September 2023, people pay less to access 325 medications on the PBS – with the Federal Government allowing a 60-day supply to be dispensed each time a person goes to the pharmacy, instead of a 30-day supply Read full article here Pink Bun Campaign raises $2 million for BCNA - 5 June 2024 BCNA gratefully extend a heartfelt thank you to our foundation partner Bakers Delight, along with every person who purchased Fun Buns or made a donation in-store between May 9-29. It is you who made the 2024 Pink Bun campaign a huge success! With your help, Bakers Delight raised an incredible $2 million, which will go directly to help Breast Cancer Network Australia support all Australians affected by breast cancer. https://youtu.be/RIjY93A7AVI Pink Lady Match raises $165,000 for BCNA - 28 June 2024 The power of connection was on full display last Saturday night at the MCG with almost 30,000 fans attending to support Melbourne FC and North Melbourne FC in the 2024 Pink Lady Match. Our Mini-Field of Women tribute outside the ground and light up display from partners Opal ANZ and Red Energy welcomed fans to the ground before filling the Pink Lady Bays with a sea of pink beanies, scarves and ponchos. Greater access to life-extending drug for people with metastatic breast cancer - 28 Aug 2024 In a significant decision set to benefit around 1,700 people each year, access to cancer drug trastuzumab deruxtecan (Enhertu) is being expanded from 1 September 2024 for those living with the newly defined HER2-low subtype of metastatic breast cancer Read full article here https://youtu.be/1MS3SHQVRGg?si=7M6_8C5joIHQW2wV New data captures true number for metastatic breast cancer In a world first, people with metastatic breast cancer are now being counted – at least in New South Wales. And work by the Cancer Institute New South Wales shows numbers have been wildly underestimated. Previously, the national estimate was of 10,553 people living with the disease. This new, verified data shows 7,900 people (7,850 women and 50 men) with metastatic breast cancer in NSW alone Read full article here https://youtu.be/n5c94wdEkd0 BCNA Webcasts / Information Forums in 2024 Webcast 'Persistent pain after breast cancer, addressing quality of life' - 07 Feb 2024 https://youtu.be/SGWv6HhHn3Q BCNA Information Forum (Murray Bridge SA) - 06 March 2024 The Information Forum covered topics including: Current and emerging treatments Managing emotional impacts Lymphoedema Head to the website link to access the session recordings Murray Bridge Information Forum (Website page) BCNA Information Forum (Hobart TAS) - 02 May 2024 The Information Forum covered topics including: Current and emerging breast cancer treatments Managing the emotional impacts of living with breast cancer The role of exercise in breast cancer care A guided meditation. Head to the website link to access the session recordings Hobart Information Forum (Website page) Webcast 'Let's cut through all the hype! Why exercise?' - 22 May 2024 https://youtu.be/ACwFpR1M32Q Webcast 'Global insights and local voices on metastatic breast cancer' - 13 Aug 2024 https://youtu.be/vId3tnJ-wnk Online support session 'Dealing with fear or doubt about treatment choices' - 09 Sept 2024 Clinical Psychologist Dr Charlotte Tottman and BCNA CEO Kirsten Pilatti discuss ways to recognise, manage and overcome emotions that media coverage may have caused. It includes qualified advice and strategies on how to manage what you may be feeling. (Mez's top pick for 2024!!) https://youtu.be/Eb6hKrI1rhs Books/Movies/TV Series/Docos This Cancer Council video is a few years old now, however still relevant for people navigating a breast cancer diagnosis over the holiday period. You may like to check it out: https://www.youtube.com/watch?v=SkVCLbsvp74 On a lighter note, I still believe these are my favourite movies in recent years and worth a watch: As I always say if you are not feeling Christmas this year there is always 'The Grinch who stole Christmas'! Our Helpline team, moderators and BCNA send you warmest wishes of happiness, rest and good times with the people (and pets!) who bring you joy. Hope to connect with you all again in 2025! The Mod Team - @Pat_BCNA @Mez_BCNA @Daina-BCNA @Kate_BCNA @Denise_BCNA @Risha_BCNA If you wish to speak with the Helpline team regarding your concern, please call 1800 500 258 Mon-Fri 9:00am - 5:00pm (AEDT), alternatively you can email helpline@bcna.org.au "May your days be merry and bright" - White ChristmasIncurable breast cancer numbers almost triple previous estimates. World first data
After 25 years of advocacy by BCNA, people with metastatic breast cancer (MBC) have finally been counted — at least in New South Wales. In a data breakthrough that far surpasses previous estimates, the Cancer Institute NSW has identified there are 7900 (7850 women and 50 men) living with MBC in NSW alone. This world-first announcement means people living with MBC are now visible in NSW, ensuring their needs are no longer overlooked. Knowing how many people are living with MBC means we can plan a healthcare system, policy and services. This announcement will pave the way for all cancers to be counted and is a model that can be rolled out nationally and internationally. To help ensure everyone is counted contact your state Health Minister and ask them to fast track the work of NSW in your state or territory. For more information about the announcement, you can read our latest media release via the link Incurable breast cancer numbers almost triple estimates (bcna.org.au) If you need our help? We recognise the emotional weight of today's announcement on those affected by breast cancer. BCNA is here to provide support and resources to help you navigate through any fears or anxieties you may be experiencing. Please call our Helpline on 1800 500 258 if you need support.
