💛 Help Shape a New Text Message Support Program for People Living with Metastatic Breast Cancer
We know that living with metastatic breast cancer brings unique challenges, and having access to the right support at the right time can make a real difference. Researchers from The University of Sydney, in partnership with Breast Cancer Network Australia, are seeking feedback from people living with metastatic breast cancer to help adapt the EMPOWER-SMS text message support program so it better meets the needs of this community. The EMPOWER-SMS program was originally developed for people recovering from early breast cancer and was found to be helpful, motivating and supportive. This project aims to ensure the program is relevant and meaningful for people living with metastatic breast cancer. What is involved? 💛 Complete a short online survey reviewing sample text messages 💛 Share your feedback on the content and support provided 💛 Survey completion time is approximately 15-20 minutes Your feedback will directly contribute to the co-design of a support program for people living with metastatic breast cancer. Before you decide 📄 Please take a moment to review the attached Participant Information Sheet, which provides further details about the study, what participation involves, and how your information will be managed. Interested in participating? 🔗 Complete the survey here: https://redcap.sydney.edu.au/surveys/?s=KTCAYNM83FTPY37L Ethics approval ✅ This study has received ethics approval from the The University of Sydney (Reference: HE000885). 💛 Thank you for helping ensure the voices and experiences of people living with metastatic breast cancer remain at the centre of research and support programs.
Q&A with Annabel Crabb – Metastatic Breast Cancer event, Sept 16, 2026
METASTATIC BREAST CANCER Join Annabel Crabb on Q&A on Wednesday 16 September from 5-6:30pm (AEST) / 7-8:30pm (NZST) for the next Q&A event, providing a compassionate and informative space to explore the questions many people living with metastatic breast cancer—and those who love and care for them—are asking. The latest in research and clinical trials – Treatment for metastatic breast cancer continues to evolve rapidly. Our experts will discuss the latest advances in research, emerging therapies, personalised medicine and clinical trials, including how research is improving outcomes and creating new treatment options for people living with metastatic disease. Treatment and making informed decisions – What are the goals of treatment? How long might treatments work, and what happens if they stop working? We’ll explore how treatment decisions are made, how tests can help guide treatment choices, the role of clinical trials, managing side effects and navigating questions around accessing therapies that may not be PBS funded. Living well with metastatic breast cancer – Many people continue to work, travel, exercise, spend time with family and pursue meaningful goals while living with metastatic breast cancer. Our panel will discuss maintaining quality of life, setting realistic expectations, staying active where possible and adapting as needs change over time. We’ll also introduce support programs, including Finding My Way Advanced, designed specifically for people living with advanced breast cancer. Supporting families and loved ones – Metastatic breast cancer affects not only the person diagnosed but also their family, carers and friends. Through both expert guidance and lived experience, we’ll explore the emotional impact of an incurable illness, practical ways to support one another and resources available for families throughout the journey. You can register here: https://www.breastcancertrials.org.au/qa-events/qa-metastatic-breast-cancer/📣 Survey Invitation: Tucatinib (Tukysa) and Metastatic Breast Cancer
Dear members, We'd like to invite you to take part in a short survey about tucatinib (Tukysa) for people with human epidermal growth factor receptor 2 positive (HER2+) metastatic breast cancer. This survey is for people who have either taken tucatinib (Tukysa), or tried to access it. Your feedback will help us understand the day-to-day impact of accessing (or not accessing) this treatment, including physical health, emotional wellbeing, financial pressures, and overall quality of life. The insights you share will be used to support a consumer submission to the Pharmaceutical Benefits Advisory Committee (PBAC), the body that decides which medicines are made more affordable through the Pharmaceutical Benefits Scheme (PBS). Take the survey here: https://www.surveymonkey.com/r/LJXB3KT The survey is open until 12 September. The survey is anonymous, voluntary, and takes about 10 minutes to complete. You can skip any question you don’t feel comfortable answering. Thank you for lending your voice to this important advocacy. If you have any questions or concerns about this survey, please contact [email protected]
Election called
Hi everyone - it has been a while since I have posted myself but as always I love the many messages you share with each other that I have a chance to read. Last week Vicki (our Director of Policy, Advocacy and Support Services) and I were in Canberra meeting with both the Minister for Health and Shadow Minister to take them through our policy priorities. I hope you have had a chance to read them: https://www.bcna.org.au/latest-news/bcna-news/bcna-policy-priorities-2025/ These are driven by your experiences and where our Network wants the Australian Government to invest. Keep any eye out on our social media and through the Online Network on updates on commitments the parties may make. Love your work KP
I just found out today
I had my first appointment with my oncologist this afternoon. I had had a PET scan and MRI earlier in the week. I received the results today that the cancer has metastasised. They found a spot on my sternum, back and pelvis. I need to go have a biopsy on my sternum. I was diagnosed with breast cancer on 8 February. 4 days after my father’s funeral. I just feel shocked and numb. I want to feel hopeful but at the moment I just feel hopeless. What do I do to change my mindset? Has anyone else been through similar? I really need to feel like this isn’t a death sentence. I have 2 kids, 15 & 13. I want to be here to see them grow up! Do I even have a chance???
New member
Hi. I was diagnosed with mbc in 2021. An MRI done of my hip (me thinking I needed a hip replacement) revealed a bone lesion and further scans showed I had lesions in my skull, breast bone and right shoulder blade. Radiation helped with the pain in my hip and I am now able to walk unaided. I have been on letrozole and Verzenio (abemaciclib) since mid 2021 and so far results have been positive. Lesions have either shrunk or stabilised and there is no sign of cancer in organs. I know that one day treatment may cease to work but in the meantime I remain positive and enjoy every single day. I love to travel, cook and spend time with family and friends. I’m forever grateful for Bcna, my medical team and all the research that goes in to treatments for this disease. I know others are not as lucky as me and I wish everyone well on their individual journeys.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.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.BCNA Webcast - Breaking Barriers: Global Insights and Local Voices on Metastatic Breast Cancer
Join us for BCNA’s latest webcast Breaking Barriers: Global Insights and Local Voices on Metastatic Breast Cancer. The webcast will feature special guests Dr Hope Rugo, a renowned expert in breast cancer research, and BCNA Consumer Representative Laura Yannouni, who is living with metastatic breast cancer. Don't miss this unique opportunity to gain valuable insights, learn from leading experts, and be part of a conversation that aims to drive change and foster hope. Date: Tuesday, 13 August 2024 Time: 3.30pm to 4.30pm AEST Register here
