BCNA's metastatic data map
Check out BCNA's metastatic data map A visual reminder of our goal to achieve stage and recurrence reporting nationwide. Metastatic breast cancer is treatable but incurable. As people live longer with metastatic breast cancer, it’s vital we know how to support them. In a world first, NSW was the first state to report the number of people living with metastatic breast cancer. We’re looking forward to seeing the map fill out to make metastatic breast cancer count across Australia. 🔗Read more about what we’re calling for via the link https://www.bcna.org.au/latest-news/bcna-news/bcna-policy-priorities-2025/38Views1like0CommentsFriday 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 Team78Views1like0CommentsBreastScreen NSW to report breast density
BCNA welcomes the announcement by BreastScreen NSW to report breast density, which is to be phased in over the coming months. We want to acknowledge the leadership of the team in New South Wales for driving this important initiative forward. Providing this important information is essential to help women make more informed decisions about their breast health and improve health outcomes. As we await the BreastScreen Australia National Policy and Funding Review, we are calling on the remaining states, Tasmania, Queensland, and the Northern Territory to implement breast density reporting. It’s time to move beyond a one-size-fits-all approach to breast screening. BCNA will continue to advocate for national consistency in breast density reporting. Watch the news item via link Factor linked to breast cancer You can read more about breast density via BCNA's website Breast density and breast cancer risk41Views1like0CommentsAustralian 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 reporting249Views3likes15CommentsStop 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.289Views4likes11CommentsBCNA 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 AUSTRALIA73Views5likes0CommentsVolunteer for Pink Bun campaign
Do you, or someone you know, have time between now and the end of May to support Breast Cancer Network Australia (BCNA)’s biggest fundraiser? We are looking for people to help coordinate Pink Bun Campaign Volunteers with events at Bakers Delight bakeries from May 1st to 21st, 2025. The role involves working with other BCNA volunteers in your community and Bakers Delight bakeries, with support from BCNA staff. People who enjoy talking to others and are comfortable with basic computer skills can apply here to register their interest. Please forward this link onto anyone you know who might be able to help. We are especially looking for support in NSW, the ACT QLD, and WA. Funds raised though the Pink Bun Campaign are vital to BCNA’s ability to support Australians affected by breast cancer. If you don’t have the availability to support BCNA in this role, please keep an eye out for details on how you can support the campaign with a spare hour or two. Check out the behind the scene video from last year's campaign https://www.facebook.com/bakersdelight/videos/bcna-pink-buns-are-back/754110623542494/122Views0likes0CommentsFriday 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 Christmas145Views0likes4CommentsPrioritising access to risk reducing surgery
We know that the knowledge of your risk of breast cancer can be empowering but it becomes a feeling of being powerless when forced to spend years on public wait lists for risk reducing surgery. It’s a constant state of fear compounded by lack of transparency regarding timelines and the reality is some will receive a breast cancer diagnosis whilst waiting Today we’re in Canberra with the Australian Access to Breast Reconstruction Collaborative Group (AABRCG) to launch a joint position statement ‘Prioritising access to risk reducing surgery for people with inherited high risks of breast cancer.' We're calling for a national, consistent approach to ensure that individuals with inherited genetic risks have timely and equitable access to risk reducing surgeries. Are you waiting for a prophylactic mastectomy? To learn more about this issue and to read our position statement, visit our webpage https://www.bcna.org.au/our-impact/prioritising-access-to-risk-reducing-surgery/365Views1like3CommentsPrioritisation of prophylactic (preventive) mastectomy for people at high risk of breast cancer
BCNA Callout for your Help Under current national and state/territory guidelines for elective surgeries delivered through the public health system, a prophylactic mastectomy is treated as a Category 3 surgery holding a 365-day waiting period. BCNA is advocating for change because people at high risk of breast cancer shouldn’t have to wait this long to have preventative surgery. We have learned that people are receiving devastating breast cancer diagnoses while they are waiting. We have developed a position statement calling for the re-categorisation of prophylactic mastectomies for high-risk people (which we have defined as those with BRCA1, BRCA2 or TP53 gene mutations) from Category 3 (365 days) to Category 2 (90 days). This position statement will be launched at Parliament House on 21 November 2024. How can you get involved? BCNA is looking for people who want to share their story. Your contribution may form part of our paper and/or inform our ongoing advocacy on this issue. We want to display the true impact that a long wait for a prophylactic mastectomy has on the lives of people who are at a significantly high risk of breast cancer. What are we asking for? A 30-minute interview via Teams or phone, or email response to some questions, based on your preference. We are looking for people who have: Chosen to have a prophylactic mastectomy and are currently waiting to have their Category 3 surgery Received a breast cancer diagnosis whilst waiting for a prophylactic mastectomy via the public health system Waited beyond the 365 days recommended for Category 3 surgery Decided to have a prophylactic mastectomy via the private health system the because the surgery wait time through the public system was too long If you are interested, please contact Julie-Anne Pho, Senior Manager, Policy and Advocacy by 5pm AEDT 30 November 2024. By phone: (03) 9805 2509 Via email:jpho@bcna.org.au133Views0likes0Comments