Finally counted: A milestone for Victorians living with metastatic breast cancer
For the first time, Victoria has counted everyone living with metastatic breast cancer in the state, marking a major step forward for visibility, recognition, and support. New data released by the Victorian Cancer Registry (VCR) estimates that 4,461 Victorians are living with metastatic breast cancer, making them visible in the health system and ensuring their needs can are not overlooked. This achievement is the result of decades of consumer-led advocacy by Breast Cancer Network Australia (BCNA), collaboration with the Victorian Cancer Registry and Cancer Council Victoria, and the determination of women living with metastatic breast cancer who have long called for change. Read more via the link Finally counted: A milestone for Victorians living with metastatic breast cancer
Supporting 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.EMOJI ('Reactions')
Hello members, In a recent unrelated discussion thread there has been a clear dissatisfaction expressed with the current emojis (aka reactions) available or not available to you when communicating in the online network. In relation to the 'hug' emoji, this was an organisational decision to include the hug reaction as it is a popular emoji with the members and BCNA has confirmed it is staying. Unfortunately we are limited within this platform and cannot create 'new' emojis but can replace existing ones (The 'flag' and 'quote' are not reactions that can be used). We have found an interim solution to enable the smiley face reaction to be 'awesome' and hope this will satisfy those that wish to have this option back as well. If you do not like a particular emoji than you do not have to use it and if you have other feature suggestions send the moderators a private message. Final thoughts and gentle reminder: To keep this space welcoming and supportive to members, it is important that we are all respectful. When we are online, we have to work harder because there is no body language, facial expressions and tone of voice to help us interpret what people are saying to us. We remind you to please be respectful of other members and also the staff at BCNA. Many thanks.
Watch this space!
We’ve been listening to your feedback and we’re excited to announce that the Online Network will be moving to a new platform in early 2025! This has been designed to better serve your needs. This will mean you will only need one login, one password for the Online Network and all our resources. We are committed to improving your experience, and we can’t wait to share these new features with you in the New Year. Keep an eye out for regular updates in early 2025.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.
March content round-up
Hi members, My name is Amelia and I work in the Member Content and Engagement team at BCNA. At the end of each month, I will do a round-up of all the podcasts, events and resources we have launched so you all have them in the one place. If you have any feedback on the content or have any ideas of topics you’d like covered, please feel free to always send me an email acox@bcna.org.au. Enjoy! Thank you, Amelia Podcast: In conversation with Shannane and Kate: Under 40 and living with breast cancer Joining us for this In Conversation episode is Shananne and Kate. Kate was diagnosed with stage 3 triple negative breast cancer when she was 26 years old and 28 weeks pregnant. Shananne was diagnosed with hormone receptor positive breast cancer in 2018 when she was 37 years old and pregnant with her third child. During this candid conversation between Shananne and Kate we’ll hear about their reaction on being told they had breast cancer, the treatment they received, the challenges they faced and continue to face, coping strategies they used and advice they have for other young women. Listen here. LGBTIQ+ experiences of cancer and cancer care: Joining us for this episode of Upfront is Jane Ussher and Natalie Halse. Jane is a Professor of Women’s Health Psychology in the Translations Health Research Institute at Western Sydney University and is the lead researcher in the recent ‘Out with Cancer’ Study. Natalie is a registered nurse and a BCNA consumer representative with lived breast cancer experience of a LGBTIQ+ person. We hear about some of the key findings of the ‘Out with Cancer’ study and its key learnings, discuss disclosure including how to do it safely, the positive benefits, and why some people are reluctant and discover what to do if you experience a negative reaction from a health care professional and the support available. Listen here. Through a rainbow lens – Navigating breast cancer as an LGBTIQ+ couple: Joining us for this episode is Mel Krollig and her partner Riki Owens-Bennett. Mel was diagnosed with breast cancer in 2016 at the age of 36 and has had fertility treatment, a single mastectomy, chemotherapy, and radiotherapy. Riki works as a community worker for the LGBTIQ+ communities in South Australia and has been by Mel’s side during her breast cancer journey. Riki and Mel have been together for 19 years, and despite a few COVID-19 related delays, married in 2021 in a celebration surrounded by family and friends. We’ll hear about Mel’s experience of breast cancer, how Riki supported her, the challenges the couple faced together and how they navigated the system as a LGBTIQ+ couple. Listen here. Webcast: Just diagnosed in 2022, what’s next? In this webcast, we heard from specialist breast cancer surgeon Mr Sunil (Sunny) Jassal, breast care nurse Meg McDonald and BCNA Consumer Faye Louey. Sunny is a director and founding member of Melbourne Breast and Endocrine Surgeons and works with leading radiologists, pathologists, oncologists and plastic surgeons. Meg works at Melbourne Breast and Endocrine Surgeons where she is an integral part of the breast cancer care team. Faye was diagnosed with early breast cancer in 2019 and discussed how she took control of her diagnosis after the initial shock. Watch here. New resources: BCNA is thrilled to have launched new content to support First Peoples women and people from LGBTIQ+ communities who are diagnosed with breast cancer. These two projects, undertaken with support from Cancer Australia, have enabled BCNA to expand our resources for people from these marginalised groups to help them feel empowered to make decisions about their treatment and care and to help them through their breast cancer journey. The information was developed with significant input from consumers through BCNA’s First Peoples Advisory Group and LGBTIQ+ Advisory Group. Read more about the new LGBTIQ+ and First Peoples resources via the BCNA website.Friday Update - 1st August 2025
Hello and welcome to our Friday Update! Whether you’re new to the BCNA Online Network or a long-time member, we’re so glad you’re here. This safe space built on connection, understanding, and shared experience. Last month, we’ve seen powerful conversations, and practical advice shared across the community. From navigating treatment side effects to finding emotional support, your contributions continue to make this network a safe and empowering place for all. If you’re just joining us, we encourage you to explore the forums Get started here introduce yourself, or simply read along. And if you’ve been with us for a while, thank you for continuing to support others. 💬 Trending Online Network Discussions – July 2025 Bone and join pain side effects of chemotherapy Offering practical advice and emotional support for those newly starting chemotherapy treatment. From bad to worse, but getting better. Metastatic breast cancer (MBC) after previously having early-stage cancer. Kindly sharing story with the community, sparking conversation and shared experiences. Implant or Autologous Flap? Exploring reconstruction options post-mastectomy, with members sharing their experiences with implants versus DIEP flap procedures. WHO do I tell? Emotional challenges of disclosing diagnosis to loved ones. Members sharing advice on navigating conversations with family and friends. Letting go of blame - WHY did I get cancer? Inspired by a BCNA podcast, this discussion sparks meaningful dialogue about emotional healing and self-compassion. 🌟 BCNA Highlights – July 2025 Expanding the ‘Seat At The Table’ Program BCNA continued to grow its internationally recognised Consumer Representative Program Seat at the Table program , empowering people with lived experience to influence cancer research, policy, and care. This initiative ensures that real voices shape decisions that affect breast cancer patients nationwide. BCNA Consumer Representative Kym shares what she thinks Do you think it’s important that those with lived experience are involved in research? Global Advocacy for Metastatic Breast Cancer BCNA joined forces with Breast Cancer Now (UK) and Rethink Breast Cancer (Canada) at the Australian High Commission in London to launch a joint advocacy pledge. The united call to action urges governments and health systems worldwide to count and recognise people living with metastatic breast cancer; a critical step toward improving care, visibility, and support. Watch Together for visibility, equity, and support! Exciting News! BCNA is proud to welcome Red Energy as our inaugural Principal Partner. This partnership marks a significant milestone in our mission to support all Australians affected by breast cancer. Together, we’re powering hope, connection, and change. Stay tuned for more on how this collaboration will make a meaningful impact. Male Breast Cancer Awareness In November 2024, Martin noticed signs that something was wrong with his health. Read his story via the link Humbled by the love and support 📅 BCNA Events BCNA Pink Lady Match – Sunday 10 August 2025 Join BCNA and major partner Red Energy at the Melbourne Cricket Ground (MCG) as the Melbourne Demons take on the Western Bulldogs in support of Australians affected by breast cancer. Watch video Pink Lady Match is back, and tickets are on sale now Event Schedule 1:30 PM – BCNA Tribute Field opens in Yarra Park 1:30 PM – BCNA merchandise available outside Gate 1 and between Gates 5–6 2:00 PM – MCG gates open; attendees take seats for entertainment and pre-match ceremony 3:00 PM – Players enter the field 3:20 PM – Match begins Carman’s Fun Run Sydney– Sunday 21 September 2025 🏃♀️ Location: Metcalfe Park, Pyrmont, Sydney Time: 6:00 AM – 1:00 PM AEDT Event Options Half Marathon (21.1K) – Wave A: 7:15 AM | Wave B: 7:20 AM 10K & 5K Runs – Waves start from 9:00 AM Pink Lady 5K Walk – Starts at 10:15 AM Read more and register via the link Carman’s Fun Run 2025 - Sydney That’s a Wrap! Thank you for joining us for another month of connection, support, and shared strength in the BCNA Online Network. If you have any questions, concerns, or feedback, please don’t hesitate to reach out to our moderators via BCNA_Mod or email helpline@bcna.org.au . We’re here to help and always happy to hear from you. Until next time, take care and stay connected! BCNA_Mod TeamEvery story counts
3,863 Queenslanders living with metastatic breast cancer have been counted, ending years of invisibility for this community and making sure they are seen and recognised in the health system for the first time. When we recognise the real people behind the data, we can create positive change for all, and help shape better care, support and research for Australians affected by breast cancer. Now is the time for other state and territories to act, and make sure every Australian living with metastatic breast cancer is seen, heard, and counted. Read more via the link Landmark step for women with metastatic breast cancer in QueenslandFriday Update 10th February 2023
Hello members and welcome to the latest Friday update, In this update I share several topics and insights into the upcoming March edition of The Beacon. I also share information about the Carman's Fun Run, as this date is coming up fast and I wouldn't want you to miss out if you live in the Melbourne area. Enjoy! Community highlights January activity In January the Online Network had 85 new discussions; 548 new comments and 15,293 visits to the community Popular forum discussions You may have missed some of Online Network discussions that have been most active in January: Single mastectomy with immediate DIEP reconstruction Mastectomy Decisions on surgery Bone Scan along with 3yr mammogram and ultrasound 5 years today since my surgery .... Posts by 'Category Name' January 2023 Community News BCNA My Journey Updates This week we had three articles related to COVID-19 which have been significantly reviewed and updated. Reflecting the recent government announcement regarding access to booster shot from February 20th 2023. Refer to below links COVID-19 Information COVID-19 vaccinations COVID-19 oral antiviral treatments BCNA - Improve access to breast cancer care and support in NSW More than 6,400 people in NSW are expected to be diagnosed with breast cancer in 2023. BCNA is calling on all those contesting the NSW state election to show their commitment to cancer care and support for people affected by breast cancer. Waitlists for elective surgeries have blown out across Australia. In our 2022 federal Election Manifesto we called for greater transparency of waiting times, especially for those waiting for a breast reconstruction following breast cancer. In NSW, the 2023 state election is further opportunity to state governments to commit to invest to clear the current elective surgery backlog, especially in rural and regional areas. Read BCNA's federal election manifesto via the link https://www.bcna.org.au/media/8473/bcna_election_manifesto_fy22_v3.pdf BCNA - Latest information regarding Perjeta (pertuzumab) We have had a few enquiries to the Helpline team regarding access to Perjeta for early breast cancer diagnosis, therefore the below information may be helpful to assist those who are unsure of the most current information (As at February 2023). BCNA understands that Perjeta (pertuzumab) is currently subsidised on the Pharmaceutical Benefits Scheme (PBS) for metastatic breast cancer only. It was submitted for consideration by the Pharmaceutical Benefits Advisory Committee (PBAC) for early breast cancer twice, in 2018 and 2020, however was unsuccessful in both instances. BCNA submitted a consumer comment to the PBAC in 2020 in support of subsidising Perjeta (pertuzumab) in combination with trasutuzumab and chemotherapy for the adjuvant (post-surgery) treatment of the Human epidermal growth factor receptor-2 positive (HER2-positive), lymph node positive early breast cancer. We also noted in this submission the emerging clinical evidence of the effectiveness of neo-adjuvant (pre-surgery) Perjeta (pertuzumub) for HER2-positive early breast cancer and advocated for it to be considered for subsidy in this setting as well. BCNA understand that Roche currently runs a Patient Access Program for Perjeta (pertuzumab) in the neo-adjuvant setting in which the out-of-pocket costs are shared by the patient and Roche whilst this treatment is not subsidised on the PBS. BCNA continues to advocate to both the pharmaceutical industry and to the government for improved access to subsidised treatments to alleviate the financial burden of a breast cancer diagnosis and to improve equity to access to optimal care for all Australians. Speak with your medical oncologist if you would like further clarification about the program. You can also read further details via BCNA's My Journey article https://myjourney.org.au/article/2201 The Beacon - March Edition Here is a sneak peak into the upcoming topics and information in the latest Beacon edition: Ask the expert: Support needs after a diagnosis - Dr. Charlotte Tottman answers questions including: What is support? What does it look like in a breast cancer experience? Why is support different for everyone? What can be helpful if you feel disappointed about the support you've received? What helps when you don't have much support - Three members share their real experiences of having not much support during and beyond their breast cancer diagnosis. Then and now: How support has changed - Member Glenda shares her story, showing a comparison of her first breast cancer diagnosis in the 90's and her recurrence in 2022. Touching on elements such as access to information, breast care nurses, financial support and ongoing support Breast cancer researchers embracing the voice of BCNA Consumer Representatives - The story looks into 'Project: Finding My Way - Advanced study - randomised control trial (RCT)' and 'Project: EMPOWER-SMS Study'. Carman's Fun Run Join us for the Carman's Fun Run on the 19th February 2023. Held at the picturesque Elsternwick Park (located at the doorstep of the popular Elwood shops), be part of our inclusive and supportive community to inspire participants along their journey to a half-marathon, 10k or 5k. With a family friendly event site Carman's Fun Run will be an enjoyable day out for all participants. Click the link for more details on how to register https://www.bcna.org.au/events/2023/carmans-fun-run-2023/ or if you would like to volunteer https://bcna.live/CarmansFunRun-Volunteering Forums / Webcasts WEBCAST Managing Stress and Improving Wellbeing with Mindfulness and Meditation - Wed 15 February 7:00-8:00pm AEDT Join mindfulness expert Prof. Craig Hassed OAM; Medical Practitioner and Associate Prof. Dr Emma Warnecke and BCNA member and mindfulness meditation teacher Iris Bar, as they discuss the benefits of mindfulness and meditation to help reduce stress during and beyond a breast cancer experience. Click on the link to register https://bcna.live/MindfulnessWebcast Port Lincoln Information Forum - Tues 7 March 9:00am - 3:00pm ACDT Join us at Port Lincoln hotel to hear a range of topics and connect with those in your local community. Guest speakers will include clinical psychologist Dr Charlotte Tottman; McGrath Breast Care Nurse Michelle Lydeamore and Lymphoedema Physiotherapist Kristy Roeger. Click on the link to register https://bcna.live/PortLincolnForum Books / TV Series / Movies / Documentaries I shared this YouTube video in the 'Living with metastatic breast cancer' private group and thought I would share with the wider forum community. You may have already seen the interview last week with MP Peta Murphy, who shared her breast cancer journey https://youtu.be/97RyknJv5FU Hope you have found this update useful. Please feel free to share your ideas for content that you would like to see in future updates. If you have any concerns while using the Online Network, please direct message (How do I send a private message?) one of the moderators below - @Carissa_BCNA @Jenny_BCNA @Pat_BCNA @Mez_BCNA If you need to speak with one of our friendly Helpline staff over the phone, please call 1800 500 258 (Mon-Fri 9:00am-5:00pm AEDT) or email helpline@bcna.org.au Warm regards, The mod team - Mez, Carissa, Jenny, & Pat "A kind gesture can reach a wound that only compassion can heal." - Steve MaraboliFriday Update 21st January 2022
Friday Update 21st January 2022 Hello members, Welcome to the first Friday update of 2022! First, I would like to extend my thankyou to our wonderful members who kept me in the loop with items that needed attention over the office closure period, as we didn’t have our usual fulltime moderating schedule. It was extremely helpful - THANKYOU. There has been quite a few important updates in relation to COVID-19 vaccinations and associated impacts in the health system that I will share in this update, as well some welcoming news in relation to Telehealth. Community highlights Looking back on 2021 Online Network activity The below data is more than numbers; these are valuable conversations, support and connections: · 1058 discussions · 10,486 comments · 509 contributors · 3,610 active users · 914,450 page views TOP 5 Popular forum discussions in 2021 Members new and old may have missed some of the forum discussions that have received the most comments in 2021: 1. Friday Funnies 2. Wise words .... 3. COVID 19 jab 4. Creative Corner! 5. Our Gardens (Check out the beautiful lilium shared by @Locksley) Community News BCNA 18 Jan 2022 – Telehealth Consultations BCNA welcomes the Australian Government’s announcement to reinstate MBS items for Telehealth consultations made via telephone with cancer specialists. We know this will help to reduce exposure and risk to the community during the ongoing pandemic and allow for flexibility in how Telehealth is delivered. BCNA, the Clinical Oncology Society of Australia and other health professional groups strongly advocated for telephone Telehealth items to remain on the MBS due to the rapid spread of the Omicron variant. BCNA has the latest in how this may impact you go to https://buff.ly/3mxBuVy BCNA 13 Jan 2022- COVID-19 booster vaccine Those who received a third COVID-19 vaccine due to being immunocompromised or on active cancer treatment are now eligible for a booster vaccine four months after their third shot. Visit My Journey or call BCNA’s helpline for more information about COVID-19 and breast cancer. My Journey: https://buff.ly/35NnMrp RACGP - A guide, action plan and symptoms diary for patients The RACGP has developed a guide to assists COVID-19 positive patients to self-manage their symptoms at home, and is the patient complement to the GP resource Home-care guidelines for patients with COVID-19. CLICK HERE for further details WidgitHealth Widget Health provides free visual images about healthcare. The images can be used for communication or as part of a social script to prepare for a hospital visit or medical procedure for people who may have a communication need or disability. CLICK HERE for further details Dine Pink to help BCNA Now, more than ever, we understand the importance of human connection and we can finally celebrate our friendships and family by connecting in person. We encourage you to Dine Pink this summer while raising vital funds to support BCNA. You can help ensure people affected by breast cancer stay connected to their support networks by connecting them to resources and services such as the BCNA Helpline, My Journey app, local support groups, and BCNA’s online network. CLICK HERE to find out more Podcast (Have you checked out Charlotte Tottman’s podcast?) ‘What You Don’t Know Until You Do’ – EP3 The Showing Up and Letting Down: Surprises and Disappointments in Relationships When unexpected family or friends show up to support you through your breast cancer diagnosis it can make you feel a great sense of comfort and value. However, when the people we love step back when we need them most, it can leave you feeling a great sense of disappointment. In episode 3 of What You Don’t Know Until You Do, Clinical Psychologist Dr Charlotte Tottman discusses how best to respond to disappointment, recalibrate expectations, and how to clearly communicate your emotional and practical needs to those around you. Listen to episode 3 via the link: https://www.bcna.org.au/.../charlotte-tottman-podcast.../ Books / Movies/ TV Series/ Documentaries This one is from the My Journey Library and I have watched the intro and first video of the series. Some of you may be interested in exploring further: Emotional Health During and After Cancer Treatment video series - Julie Bolton (Counsellor and breast cancer survivor) (This series of six videos explains the impact of a breast cancer diagnosis and treatment on our emotional health and provides simple but effective strategies to help improve your quality of life. The first video is currently available free of charge, and then there is a charge of $49.99 for unlimited access to the full series. You can watch a three minute introduction to the series on Julie's website - follow the link above) Hope you enjoyed the content this week and in the meantime, if you have any concerns while online, please contact one of the moderators - @Jenny_BCNA @Carissa_BCNA @Anna_BCNA @Pat_BCNA @MichelleP_BCNA @Mez_BCNA If you need to speak with someone regarding your concern, please call 1800 500 258 alternatively, you can email contact@bcna.org.au Take care, The mod team – Mez, Carissa, Jenny, Anna, Pat & Michelle “Feelings are just visitors, let them come and go”- Mooji
