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Metastatic Breast Cancer Awareness Day 💗
Today, on Metastatic Breast Cancer Awareness Day, we're sharing the voices of people living with metastatic breast cancer. 💗 Last year, through the Together We Count initiative and our partnership with the Australian Institute of Health and Welfare, Australia achieved a significant milestone: For the first time ever, we had a reliable estimate of the number of people living with metastatic breast cancer. But our work cannot stop there. While Australia can now estimate how many people are living with MBC, our cancer data systems still do not routinely identify or track people living with metastatic disease. This means it's harder to ensure the right care, support, services and research reach those who need them most. Here at Breast Cancer Network Australia, we're advocating for a future where people living with metastatic breast cancer are counted, heard and supported. Because no life should be limited by breast cancer. 💪16ViewsSign in to react to this post0CommentsShare Your Voice: Metastatic Breast Cancer Awareness
About this week This week, we're creating space for people affected by metastatic breast cancer to share stories that often go unheard. We want to help more people understand the realities of living with metastatic breast cancer by hearing directly from those with lived experience. Your voice can help challenge misconceptions, raise awareness, and educate others about what metastatic breast cancer really means. What we'd love from you Please record a short video answering the following question: "What's one thing you wish everybody understood about metastatic breast cancer?" There are no right or wrong answers. We encourage you to speak from your own experience and share whatever feels important to you. A few tips Keep it conversational and authentic. Speak as though you're talking to a friend. Short responses are absolutely fine. Feel free to share anything else you'd like people to understand about metastatic breast cancer. After answering, please answer for a 2nd time keeping your response to 10 seconds MAX.. Please submit all videos by October 3rd Optional prompt If you'd like, you can also tell us: "Is there anything else you wish people knew about living with metastatic breast cancer?" Thank you for helping us share these important stories! Please submit your videos here: Metastatic Breast Cancer Day46ViewsSign in to react to this post1Comment📱 Help Shape a Support Program for People Living with Metastatic Breast Cancer
Researchers from the University of Sydney, in partnership with Breast Cancer Network Australia, are adapting EMPOWER-SMS, a text message support program, to better meet the needs of people living with metastatic breast cancer. They're looking for feedback on the types of support, information and messages that would be most valuable. What's involved? ✅ Complete a short online survey ✅ Takes around 15-20 minutes ✅ Share your thoughts on support needs and message content 👉 Complete the survey here20ViewsSign in to react to this post0Comments💛 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.28ViewsSign in to react to this post0CommentsComplete Metabolic Response De Novo TNBC
In July of 2023 I found a lump. It was a few weeks after turning 38. 5 weeks later I was diagnosed with De Novo TNBC, with lung mets. I didn't have any symptoms that indicated my lungs had cancer in them at the time, but while waiting to see if I was eligible for a clinical trial, and which clinical trial, I developed a cough, struggled to walk quickly and couldn't finish a sentence without forcing the air out. The cancer was so aggressive and "hungry" for my blood, my arm would go numb if I tried to exercise, as the primary tumour wanted it more. I needed treatment ASAP. Life was becoming harder everyday and I wanted that valuable time with my children who were 3 and 6 at the time. I was given 1-2 years to live with usual treatment. I went into a clinical trial, Ascent 3. I wasn't suitable for immunotherapy and was lucky enough to be allocated the trial drug, Sacituzumab Govetican, as a first line treatment. So it began on the 4th of October. The first dose was wonderful, it felt like a cold cloth on hot sunburn. After the first cycle, I could hug my children without pain in my breast and read a book to them without becoming breathless. I became determined to win, and to beat this dismal disease. I became unrelenting in my pursuit of being cured. For a year I was on the highest dose of Sacituzumab Govetican. Most of the lesions in my lungs had resolved, but for 8 months I had 2mm spot that was dormant. It became active again and also cleared. In October 2024, I had a lumpectomy with clear margins. I continued treatment with no evidence of disease until July 4th, 2025. Eventually my body couldnt take the treatment any longer, and the trial was interfering with my life. Over 21 months, I had 27 cycles of Sacituzumab Govetican. It's been over a year now, and I've remained in complete metabolic response. I hope I continue to stay this way and eventually be told I'm cured. For now it's been PETs every 3-4 months, but between them I live my life normally. I wasn't sure this was the right area to post my story, but hope can be an important symptom when facing dire circumstances.158ViewsSign in to react to this post3CommentsEnhertu working
CT Pet scan and MRI results in. No active cancer anywhere. Previous test showed cancer in brain, bones and adrenal gland. Onco started me on Enhertu five cycles ago and the results are amazing. Feeling pretty happy right now. I still have MBC but it is all asleep. <31.1KViewsSign in to react to this post22CommentsQ&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/69ViewsSign in to react to this post0CommentsGrief & emotions
Hi all, I'm 14 mths since my diagnosis of de nova metastatic breast cancer. I thought i was doing quite well coping with it all, but the last few weeks have really been a struggle. I am done with having cancer now, I want my hair back & my old life back. I am just realising the impact of living with this for the rest of my life. I am still working, exercising, having counselling, but it still seems all too much sometimes.416ViewsSign in to react to this post4CommentsHow to cope
Hi I was diagnosed with metastatic breastcancer ER positive in late January. I get injections every month for hormones and take a tablet everyday. I am on Letrozole, gosserelin and denosumab. I was just wondering how do people cope with the diagnosis and how long have you been dealing with it. I struggle some days to stay positive . I have 4 children my youngest is 12 and I would love to see her grow up. Thank you.1KViewsSign in to react to this post16Comments💛 A powerful conversation on metastatic breast cancer & intimacy
We wanted to share a powerful podcast that explores something many people experience but don’t always feel able to talk about openly, intimacy while living with metastatic breast cancer. In this Mamamia Well episode, our 2026 Pink Bun Campaign Ambassador Emily shares her journey from being diagnosed at 26 to now living with metastatic breast cancer. She speaks with honesty and vulnerability about how cancer has impacted her body, her relationships, and her sense of identity. From early menopause and financial stress to intimacy, marriage and navigating other people's expectations, she speaks candidly about the challenges of living with a disease that has no cure. What makes this conversation so powerful is the way it creates space for real, human experiences 💛 the shifts in intimacy and connection 💛 the emotional and physical changes that can feel hard to explain 💛 the importance of communication, understanding and compassion It’s a reminder that these challenges are not something you have to carry alone. 🎧 If this feels relevant to you, you can listen here: https://www.mamamia.com.au/podcasts/well/metastatic-breast-cancer-emily-harrison-suhr-intimacy/ 🤍 As always, there is no “right” way to navigate this. Your experience is valid, and it’s okay for things to look and feel different. 💬 If you feel comfortable, you’re very welcome to share your thoughts below. What has helped you navigate connection, closeness or communication during this time?97ViewsSign in to react to this post0Comments67 Male Metastatic Breast Cancer
Good Morning My 67 year old dad was diagnosed at the end of February with Her2 negative breast cancer. He had a mastectomy of the left breast and sentinel lymph nodes removal in March. A week later he had a second surgery to do axilla node removal as 3 of the 5 nodes removed were positive for cancer from the first surgery. The second surgery removed a further 17 nodes all were negative. He had a PET CT scan just before first surgery which came back all clear except for some haemangioma which was not mentioned to us at the time. He was classed as a 2B stage and referred for chemo, radiation and hormone therapy. Things looked positive. At the first appointment with the medical oncologist she booked dad in for chemo, but also mentioned that the PET scan he had done previously showed an area in the T 1 of his spine that should be investigated further as it could be a possible metastasis or a haemangioma. No idea why the breast surgeon missed that in the PET report. Dad did a MRI which unfortunately showed possible metastasis in his T1, T6, T9 and L1. He then had a bone scan which showed same results along with 2 small spots on his ribs. Oncologist has canceled chemotherapy and radiation before it’s even started and put dad on tamoxifen and abemaciclib. He will start denosumab bone injections in about 2 months as he had to pull 2 teeth out to be able to get dental clearance for them. He did a bone biopsy of his L1 yesterday even though oncologist was adamant he didn’t need to do it as the metastasis is confirmed with the scans. Results are pending. His bloodwork is ‘normal’. No radiation has been recommended for now as dad has no pain. The last 2 months has been an emotional rollercoaster. There is very little information out there on male breast cancer. We’re unsure why the PET scan was cleared by the breast surgeon but it turns out there is actually metastatic disease on his spine and ribs. We’re not sure the wait and see approach is ok with us. Do most metastatic breast cancer patients receive chemo and radiation or just hormone blocking therapy. Also not happy bone injections are delayed for 2 months but nothing is replacing it for now. We’re tempted to see another oncologist for a second opinion on treatment. What are your thoughts on dad’s situation?171ViewsSign in to react to this post3CommentsCapecitibane
Hi there I now have secondary breast lung cancer nodules. My oncologist has trialed me on Pablociclib and Abemaciclib however nodules have continued to grow and increase in number. They are now suggesting a few other options, one of them being Capecitibane. Again symptoms sound awful, especially hand foot syndrome 😞 I would appreciate any accounts of personal experiences with symptoms and results after use. Thank you in advance 🙏🫶269ViewsSign in to react to this post2CommentsNew to the Team- not exactly happy about it
Hi, 03Dec had a lump checked- invasive lobular cancer, left breast. 09Dec- MRI and spot detected right breast followed by biopsy- same cancer although non-palpable. 19Dec bilateral partial masectomy plus sentinel lymph nodes, and conservative reconstruction. 04JAN results back- MBC!!!!!....PETscan tomorrow. I feel like I am standing in a well listening to grenades go off. I don't know how I got here although I don't think that matters. I am terrified for the future and how short it may be, but then I see some of you with MBC post 6 years,or 9 years, diagnosis and I wonder if that could be me. I used to be a microbiologist before I moved into law (these days I manage risk-imagine managing risk for a living and getting this diagnosis!). I read about the science which is ever changing and getting better at longevity and quality of life and the personalised approaches available for my situation (whatever that turns out to be) but I don't know when the sadness and fear will stop or if this is my life now. I know I am not dying this week or next week or even next year, but the overwhelming feeling is that I might, and so I have organised a council pick up and getting rid of all my furniture that isn't essential, and giving away or selling my clothes BCS I can't see which way is forward, or if there even is forward. I contacted my BCN today and asked for a psychologist BCS I need something to hold onto and this diagnosis vortex is chaotic.476ViewsSign in to react to this post8CommentsA Qld based Mets Group called Advanced Breast Cancer Group
I've just found this Advanced Breast Cancer group online - it is 'based in Qld' but I would think it could be a useful group for anyone with Mets? "We are a Queensland- wide service specifically developed to support women with secondary breast cancer, and their partners and families." Jump onto the website & see if it might be helpful to you? https://www.advancedbreastcancergroup.org.au/ Access to their Youtube Videos on numerous topics: https://www.youtube.com/@advancedbreastcancergroup/videos98ViewsSign in to react to this post0CommentsAbemaciclib and hair loss/thinning
Hi lovely ladies I have metastatic BC (adenocarcinomas in chest wall) and have recently switched from Pablociclib (as my immunity was being significantly impacted and ended up with cellulitis and sepsis as a result) to now Abemaciclib with the monthly Fulvestrant injection. I have only been on abemaciclib now for 4-5 weeks and my hair has thinned significantly all of a sudden...after losing my hair twice with two lots of chemo in 10 years I am now quite fond of the hair I have grown since my last chemo. Sounds silly but with everything else I don't want to lose my hair again. My beautiful BC nurse advised this would likely happen but everything you read suggests it will only stop thinning/disappearing when you stop the abemaciclib..potentially that won't happen. Can anyone share what has happened to them please in this regard - much appreciated thank you :)371ViewsSign in to react to this post3CommentsDupuytren Contracture
Moderator moved @jaynie_000 comment to dedicated discussion post: This is my first post on this platform. I see my oncologist tomorrow, but I have developed a painful and growing nodule on my ring finger / knuckle on the underside of my palm. It’s getting larger and more painful. I am on femara since 2020 when I got diagnosed with stage 4 metastatic breast cancer at age 53. My first / initial diagnosis with early breast cancer was in 2009 and I was 42. I took Arimidex for 9 months but couldn’t cope with the pain in my feet. I changed to Aromasin and it ultimately dissolved my Achilles tendon. I required it to be grafted after it broke. I was on Aromasin for 6 years and gave up on AI’s due to their effect on my tendons and continued pain in my joints and feet. Fast forwards to now and I have had plantar fasciitis (pain in arch of foot) and now I’ve discovered the nodule on my palm. I can’t hold the steering wheel of my car well or open a jar with a tight lid. Any action that requires grip hurts. My oncologist has previously said that Femara can cause tendinitis so I’m ready for her to say give femara a rest for a while. But she has also told me that aromatase inhibitors essentially are the only drug that holds the cancer at bay. Because my cancer is hormone receptive. Ultimately my cancer will recognise an AI and work a way to get around it. When that happens it’s a whole new approach to treatment. So I’m not keen to go off Femara for any period of time. I will put up with side effects. I live in Sydney close to the CBD. I have most of my treatment and appointments through the Mater hospital at north Sydney. I have huge trust for my onc. a professor and specialist when it come to MBC. I am keen to know how you have found the radiation treatment. Did it work? I know an excellent hand surgeon but if I can avoid surgery then I will pursue that option. And my biggest question is …Femara the cause of your Dupuytrens314ViewsSign in to react to this post2CommentsWhats going to happen next
as the heading states what next. I want to be the mum I was before metastatic BC came along tonight I just want to find somewhere to roll up into a ball and cry with the unfairness of it all. If i could Just get life to stand still or at least for once be nice. It seems the whole family is falling apart. 1st daughter is waiting for shoulder reconstruction she has in layman’s terms laxity of the joints already had a knee reconstruction this surgery Dr cant say its going to completely successful 2nd daughter is having major health issues (she has chrons disease, a heart problem plus other complicated health problems all of which are acting up at the same time. She carries a letter for emergency so they don’t have to ask so many questions My Only Son is now on short list for surgery for a shoulder that’s hanging on by a thread of just 1 tendon. ( came off his bike). His wife got admitted to hospital yesterday with several Kidney stones that are not going to pass so she’s in there waiting for a stent then follow up surgery to have them blasted. I’m back on my palbociclib and trying to adjust to the side effects again after such a long break. To top it off I have a new lump on a different rib which wasn’t painful before but now is hot to touch and radiating pain around it. Oncologist had a feel and immediately wrote up a referral for a bone scan asap and I am still trying to recover from the GB surgery Its a bit of where do I go, how do I spread myself around to them all, I want to divide myself into pieces so I can help them all. then my body reminds me I’m not 100% fit either.865ViewsSign in to react to this post25Comments
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