Australian 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 reporting233Views3likes15CommentsStop 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.272Views4likes11CommentsVolunteer 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/754110623542494/111Views0likes0CommentsFriday 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 Christmas141Views0likes4CommentsPrioritising 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/362Views1like3CommentsPrioritisation 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.au131Views0likes0CommentsIncurable 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.381Views3likes16CommentsBCNA 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 268 002.553Views6likes14CommentsEnhertu for people living with HER2-low metastatic breast cancer
We have some amazing news to share with our network today, following an announcement this morning from the Australian Government. People living with HER2-low metastatic breast cancer will, from 1 September 2024, have access to the life-prolonging drug Enhertu (trastuzumab deruxtecan) through the Pharmaceutical Benefits Scheme. This could transform treatment for around 1,700 people each year. The announcement also removes the financial burden of treatment as the cost – $10,000 to $15,000 every 3 weeks – will now be just $31.60 ($7.70 concession). We have advocated strongly for Enhertu to be subsidised and are extremely grateful for the input we have had from members with metastatic breast cancer. Thank you to everyone who has helped make today’s announcement possible. That includes BCNA member Sarah Lee, one of the many champions whose voice helped get Enhertu listed on the PBS. By sharing her story so publicly, she is demonstrating the importance of increased access to this life-extending treatment. You can read our announcement on the website and we hope to see some good media coverage in the days ahead. If you have questions about Enhertu, including if it is a treatment you may be eligible for, we encourage you to speak to your treating team.262Views4likes7CommentsSupporting 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 500 258.221Views7likes3Comments