Incurable 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.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 Forward💊 Update: Changes to Ribociclib (Kisqali) Storage & Packaging
We wanted to share an important update for anyone currently taking ribociclib (Kisqali), a targeted therapy used for HR-positive, HER2-negative breast cancer (early or advanced), often alongside hormone therapy. 🔄What’s changed? From early May, ribociclib tablets no longer need to be stored in the fridge. They can now be kept at room temperature (below 30°C). 📦During the transition period Some packs will still have the old refrigeration instructions Others will reflect the new room temperature guidance You may notice changes to packaging, including: A longer expiry date (up to 24 months) Different blister pack sizes A new layout showing how many tablets to take each day 💡Why the change? The medication itself has not changed. Updates to manufacturing and packaging now allow the tablets to be stored safely at room temperature. Because of this transition, both “old” (refrigerated) and “new” packs will be in circulation for a while. ✅What do you need to do? Always follow the storage instructions on your specific pack If your pack says to refrigerate, continue to do so until it’s finished Don’t be concerned if packaging looks different, the medicine remains the same Speak to your healthcare team if you have any questions or concerns For more information check out the following resources 👉Early breast cancer 👉Metastatic breast cancer As always, we’re here to support you. If you’ve noticed these changes or want to share your experience, please call our Helpline on 1800 500 258 Monday-Friday 9am-5pmBCNA welcomes pharmacy prescription changes for breast cancer medications
Six key breast cancer drugs are now more affordable thanks to 60-day prescribing. BCNA is pleased to confirm that six common types of hormone blocking therapies such as letrozole, anastrozole and tamoxifen, amongst others, are now able to be prescribed 60-days at a time, saving consumers time and money. “It is especially important that we work to reduce the cost of hormone blocking therapies for breast cancer as some are required for ten years or more after active treatment finishes,” said BCNA Director Policy, Advocacy & Support Services Vicki Durston. “Reducing the ongoing cost of these drugs will start to address financial toxicity and improve equity, especially for those in lower socioeconomic groups who already experience disparities in access to breast cancer care.” BCNA advocated strongly in support of 60-day prescribing last year, alongside other groups such as the Royal Australian College of General Practitioners. Read more via the link https://www.bcna.org.au/latest-news/bcna-news/bcna-welcomes-pharmacy-prescription-changes-for-breast-cancer-medications/ and also refer to the Department of Health and Aged Care information sheet https://www.health.gov.au/sites/default/files/2024-03/savings-with-60-day-prescriptions_0.pdfAustralian 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 reportingStop 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.Prioritising 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/Enhertu 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.
Breast Cancer Network Australia top 5 advocacy priorities
Hello Breast Cancer Network Australia have identified 5 advocacy priorities for 2018. These will be the 5 key areas on our agenda this year and where our focus and energies will be directed. Please see link below for further information https://www.bcna.org.au/about-us/advocacy/
