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🔔 Update on access to Zoladex treatment
We heard your concerns about AstraZeneca's decision to discontinue Zoladex 3.6mg from 1 November 2026 - and we went to work on your behalf. After coordinating advocacy with clinicians, consumers and key stakeholders, we're pleased to share that options will be available for those affected, including a free access program for eligible patients and work underway on alternative treatment pathways. Supply continues in the meantime and we'll keep you informed every step of the way. Full details available through the link in our bio. If you need support, our Helpline is here for you on 👉 Reach out to the BCNA Helpline 1800 500 258 for information and support Read more here: 🔗 https://www.bcna.org.au/latest-news/bcna-news/update-on-access-to-zoladex-treatment📢 Loneliness & Social Isolation Research Study for People Living with Long-Term Health Conditions
Researchers from Monash University are looking for people with lived experience of loneliness or social isolation to take part in an important study. The research aims to better understand what makes support programs most useful, accessible and appealing for people living with long-term health conditions, including breast cancer. You may be eligible if you: ✅ Are aged 18 years or older ✅ Have experienced loneliness or social isolation (currently or in the past) ✅ Have been living with a diagnosed health condition for 12 months or longer. Examples include breast cancer, other cancers, heart disease, diabetes, anxiety, depression, arthritis, asthma and other long-term health conditions. 📝 What's involved? A confidential online survey taking approximately 25 minutes to complete. Participants can also choose to enter a prize draw to win one of ten $50 e-gift cards. Your feedback will help researchers design better support and social connection programs for people living with long-term health conditions. 🔗 Take the survey For research questions, contact: Sharon Clifford Monash University 📞 (03) 9902 4474 📧 [email protected] Thank you for considering this opportunity to share your experience and help shape future support services. 💗📢 Share Your Experience: Emotional Wellbeing After Breast Cancer Treatment
Researchers from Federation University Australia are seeking Australian women who have completed active breast cancer treatment to take part in a short anonymous survey exploring: 💗 Self-compassion (being kind to yourself) 💗 Fear of cancer recurrence 💗 Emotional wellbeing after treatment By sharing your experiences, you'll help researchers better understand the emotional and psychological impacts of breast cancer and contribute to improving future support for those affected. You may be eligible if you: ✅ Are an Australian woman aged 18 or older ✅ Have completed active breast cancer treatment (surgery, chemotherapy and/or radiation therapy) ✅ Can complete a survey in English Please note: ongoing hormone therapy or medication after active treatment does not exclude you from participating. 📝 What's involved? • Anonymous online survey • Takes approximately 10-15 minutes • No identifying information is collected Complete the survey here Whether you finished treatment recently or many years ago, your experiences are valuable. Study Title: Self-compassion, Fear of Cancer Recurrence and Emotional Wellbeing in Breast Cancer After Active Treatment For more information, contact: Dr Bianca Denny 📧 [email protected] 📞 0411 221 847 Thank you for considering this opportunity to help shape future breast cancer support and care. 💗📢 Research Opportunity: Share Your Views on Online Exercise Programs for People Affected by Cancer
Researchers from the University of Melbourne are inviting people living with cancer actively or post-treatment to take part in a study exploring how remotely delivered, group-based exercise programs can be made more engaging, supportive and accessible. 🤸♀️Exercise can play an important role in cancer care, helping to improve physical fitness, reduce treatment-related side effects such as fatigue, and support emotional wellbeing. While telehealth exercise programs can make it easier to access professional support, researchers are keen to better understand what helps people feel connected, motivated and supported when participating online. Who can take part? You may be eligible if you: ✅ Are aged 18 years or older ✅ Have been diagnosed with cancer at any time ✅ Are able to complete a survey online (or by telephone with research assistant support if needed) The survey is available in English, Mandarin and Vietnamese, with telephone support available in these languages. What's involved? Participants will be asked to complete a survey (approximately 25 minutes) that explores: Views on online group exercise programs Factors that would encourage participation Strategies that could improve support, engagement and personalisation Experiences with telehealth Information about cancer diagnosis, treatment and demographics Some questions may be personal, and you are welcome to skip any questions you do not wish to answer. How will your feedback help? The findings will help exercise professionals and health services design future telehealth exercise programs that better meet the needs of people affected by cancer. 🔗Participate in the survey here This study has been approved by the University of Melbourne Human Research Ethics Committee (Reference No. 2026-36117-82542-4). As always, participation is entirely voluntary. If this research is of interest to you, we'd love for you to consider sharing your experience and perspective. 💕 Thank you for helping to improve support and care for people affected by cancer.📢Have You Taken Endocrine Therapy After Breast Cancer Surgery? We'd Love to Hear From You
Have you been diagnosed with Stage 2 to 3 HER2-negative, HR-positive breast cancer and received treatment after surgery? BCNA is partnering with Inherited Cancers Australia (ICA), So Brave, healthcare professionals, and independent healthcare research agency Elbow Insight and Strategy to better understand the experiences of people diagnosed with this type of breast cancer. The findings will help improve understanding of the challenges, needs, and experiences of people affected by breast cancer, and help inform future support for our community. 🌸 Who can participate? 👇 You may be eligible if you: ✅ Are aged 18 years or older ✅ Have been diagnosed with Stage 2 to 3 HER2-negative, HR-positive breast cancer ✅ Are currently taking, or have previously taken, treatment after breast cancer surgery, including hormone-blocking (endocrine) therapy What's involved? 📝 The study starts with a few short screening questions to confirm eligibility. If eligible, you'll be invited to: ✨ Complete a 25-minute online survey ✨ Optionally register your interest in a second phase involving a 7-day online diary (approximately 45 minutes in total) As a thank you for their time, participants will receive a payment for participating. 💕 👉 Interested in participating? Register for the Research Study Here Thank you for helping us better understand and support people affected by breast cancer. 💖🗣️ Invitation to share your voice: Understanding Cancer Related Stigma Through Lived Experience
BCNA’s Consumer Engagement team is inviting members of our Online Network to share their experiences of stigma and shame following a cancer diagnosis. Cancer related stigma is not only about visible changes. It can be social, cultural, emotional, and systemic. It can affect how people see themselves, how others respond to them, and how safe they feel seeking care or support. These experiences are often deeply personal, and they can vary widely across communities, cultures, and healthcare settings. 🌏 Why your perspective matters In June, a BCNA trained Consumer Representative will be presenting at the Multinational Association of Supportive Cancer Care Australia Conference. This presentation will bring consumer voices into an international conversation about whole person care, supportive care, and the importance of patient partnership in addressing stigma. To ensure this presentation truly reflects the diversity of experiences across Australia, we are gathering insights from our broader network of members. 📝 Take part in the survey By completing this short survey, you will help shape the content of the presentation and strengthen the messages shared with clinicians, program leaders, policy makers, and researchers. Your voice will help ensure lived experience remains central to conversations about stigma, care, and support. 👉 Take the survey here 🗓️ The survey closes on Friday 8 May 2026 📩 If you have any questions, please contact [email protected] Thank you for considering sharing your experience and helping amplify the voices of people affected by cancer.🌸 Research opportunity: Healthy lifestyle support after breast cancer
Women across Australia are invited to take part in a research study exploring views on exercise and nutrition support after a breast cancer diagnosis 💗. This study aims to better understand what encourages or discourages participation in lifestyle programs, when support feels most helpful, and what information women need to make informed decisions. The findings will help shape the design of a future exercise and nutrition trial for women after breast cancer treatment. 👥 Who can take part Women aged 18 years and over who have been diagnosed with breast cancer at any stage, are currently in treatment or have completed treatment, and live in Australia. 📝 What’s involved Participants will be asked to complete an anonymous online questionnaire. There is also the option to take part in a short online or phone interview lasting around 30 to 40 minutes to share views in more depth. Participation is voluntary, and people can pause or withdraw at any time. 🔬 Researcher spotlight This study is led by Dr Cindy Tan, a senior clinical dietitian and cancer survivorship researcher with more than 20 years of experience supporting women after cancer. Dr Tan is passionate about developing practical, realistic lifestyle programs that support confidence, wellbeing, and long‑term health after breast cancer 🌱. 📩 Want to know more For study enquiries, contact Dr Cindy Tan at [email protected] For BCNA related questions, contact [email protected]🍎Help shape a new nutrition resource after cancer treatment
A new research study called Survivorship Bites is inviting people with a lived experience of cancer, as well as carers, to take part in co‑designing a nutrition resource for people living with and beyond cancer. This study aims to create practical, evidence‑based information to support eating and drinking well after cancer treatment. Participant experiences and ideas will help guide the development of this new resource. 👥 Who can take part? People aged 18 years and over Victorian residents Those with lived experience of cancer within the past 10 years, or carers for someone who does 💬 What’s involved? Up to four online workshops via Microsoft Teams Each session runs for around 1.5 to 2 hours One short online survey Gift vouchers are provided to thank participants for their time 📅 Important dates Expressions of interest close 14 April 2026 If this sounds like something of interest, members are encouraged to express interest via the link or QR code provided below. Your voice can help shape meaningful support for people after cancer treatment 💛 For more information please contact Project Officer: Kirsty Rowan Peter MacCallum Cancer Centre Phone: (03) 8559 5220 Email: mailto:[email protected]📢 Have you ever faced a big bill, or a long journey just to get a diagnostic breast scan? We want to hear from you.
When you find a concerning lump or notable change in your breast, one of the most important things that you should be able to access quickly and safely is the answer to: is this breast cancer? We know that for too many people in our community, the pathway to diagnosis is full of barriers: high out‑of‑pocket costs, long waitlists, no public imaging options, or hours of travel just to access essential scans. ✨ As part of our End‑of‑Financial‑Year national advocacy campaign, we’re calling for fair and equitable access to diagnostic imaging for all Australians. To do that, we need real people to share their experiences and stories that show what is happening right now. BCNA is seeking lived experiences from anyone who has faced challenges such as: 🔸 Travelling long distances or interstate for a diagnostic breast scan 🔸 No public diagnostic facility available in your region 🔸 Significant out‑of‑pocket costs for essential imaging 🔸 Long waitlists that delayed your diagnosis 🔸 Impacts on treatment, health outcomes, or mental wellbeing due to these delays. 💪 Your story is powerful. It can help us demonstrate that access to a diagnosis is not a luxury - it’s a right. Your story will help us advocate for a system where every Australian gets the answers they need, regardless of their bank balance or their postcode. If you’re interested in having your voice heard and suppotring BCNA's advocacy efforts, please complete our Expression of Interest form here; 👉 https://formstack.io/907FC All stories will be handled with the utmost care and confidentiality by our Communications department. Thank you for helping us shape a better system where every Australian can get timely, equitable access to the diagnostic care they deserve ❤️
Aligning PBS Policy with Contemporary HER2-Positive Metastatic Breast Cancer Care
I am concerned about a structural problem in how HER2-positive metastatic breast cancer is managed under current PBS rules. Patients who achieve an excellent response to T-DM1 or T-DXd cannot step down to maintenance trastuzumab without being deemed to have “failed” the antibody–drug conjugate. In practice, stopping treatment is administratively treated as progression. This creates several problems: It discourages rational de-escalation after deep response. It forces patients to remain on intensive agents despite cumulative toxicity. It prevents planned treatment breaks or step-down strategies. It risks exhausting future options prematurely. In many other jurisdictions, sequencing is more flexible. De-escalation to maintenance trastuzumab, with or without endocrine therapy, after a strong response is not automatically classified as drug failure. Re-challenge with an ADC remains possible if progression later occurs. The current PBS structure appears misaligned with contemporary oncology, where depth of response, toxicity management, local treatment of oligoprogression, and strategic preservation of future options are central principles. From a health economics perspective, allowing maintenance trastuzumab after response to T-DM1 or T-DXd is likely to be cost-neutral or cost-saving. It may reduce cumulative ADC exposure, delay subsequent high-cost therapies, and lower toxicity-related healthcare utilisation. In my own case, multiple HER2-targeted regimens have achieved systemic control. My disease has presented as isolated liver oligoprogression, managed with histotripsy overseas at significant personal expense. The resistant lesions were destroyed locally. I now have minimal detectable disease, yet very limited PBS-funded systemic options remaining because of line restrictions. This is not solely a personal issue. As ablative and other local treatments expand, more patients will experience prolonged control with episodic oligoprogression. Funding rules need to reflect this evolving reality. Without reform, Australian patients risk running out of PBS-listed options earlier than necessary, remaining on unnecessarily toxic regimens, and falling behind international standards of adaptive HER2 management. The intent of PBS safeguards is understandable. However, equating treatment cessation with treatment failure is often biologically and clinically inaccurate. Greater flexibility around maintenance trastuzumab and ADC re-challenge should be considered if Australia is to keep pace with modern HER2-positive metastatic care.
