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
Season 2: Podcast Series "What You Don’t Know Until You Do, with Dr Charlotte Tottman"
Charlotte is back with an 'unlimited' season! Season 2 of our popular Upfront About Breast Cancer podcast What You Don’t Know Until You Do with Clinical Psychologist Dr Charlotte Tottman is available now (You have direct access via the bottom of the Online Network homepage) With over 58,000 listens, Season 1 proved to be a valuable resource that shared the reality of what it’s like going through a breast cancer experience. We heard about Dr Charlotte Tottman who established her own private practice in psycho oncology, before being diagnosed with breast cancer herself. Charlotte shared her lived experience with breast cancer, exploring common psychological triggers and responses, while providing tips of what helped her. (Read the popular Online Network discussion for the Season 1 via link Upfront About Breast Cancer – What You Don’t Know Until You Do, with Dr Charlotte Tottman) This new season is 'unlimited' to reflect a broader experience from a clinical perspective, stripping away the common limitations imposed by the discomfort associated with difficult topics, while providing practical strategies to help people at any stage of their breast cancer experience. Start your day with Charlotte and Kellie as they have meaningful conversations about many topics including anxiety, advocating for yourself, causal beliefs, metastatic breast cancer, re-starting life after treatment, behavioural changes, boundary setting, different perspectives, side effects and the inevitable; death and mortality. Listen to What You Don't Know Until You Do: Unlimited via BCNA or wherever you get your podcasts. https://www.bcna.org.au/understanding-breast-cancer/bcna-resources/podcasts/charlotte-tottman-podcast-series/ Note: We recommend that listeners exercise self-care when listening to this podcast, as some may find the content upsetting. BCNA’s Helpline provides a free confidential telephone and email service for people diagnosed with breast cancer, their family and friends. Our experienced team can help with your questions and concerns and direct you to relevant resources and services. Call 1800 500 258 or email helpline@bcna.org.au
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???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.
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.
Can not believe it.
Shock, denial, anger - cant imagine how I can move towards acceptance. Newly Dx. Initially was stage 2, then told stage 3 and now looking at stage 4 with lung mets. What the! This roller coaster is insane and I want to get off. Found a lump 8 weeks ago, took a month to get into my rural GP, another 2 week wait for scans and a further possible month wait after this for biopsy (apparently). So instead spent a fortune flying myself to Sydney to the one stop shop at Sydney Breast clinic (they were amazing) scans, biopsies, pathology all on the same day with lovely nurses, surgeons and Breast GPs to consult with as well. Got the bad news of lymph node involvement that day (what a horrible trip home finding trains and sitting in the airport alone with this news). 4 days later with core biopsy results apparently better news of - Gd 1 slow growing highly hormone receptive and HER 2-ve Ca. Staging scans the next week, another week to get into the breast surgeon. Feeling good and starting to get my head around Mastectomy and some Hormone therapy and maybe some radiotherapy. Then the bad starts flowing again not stage 2 now looking at stage 3 with potential Mets in lungs - What!. So Surreal when one is so fit and healthy. Now another 2 weeks wait and long distance travel to have more invasive investigations to confirm or discount this scary stage 4 Dx. On top of this had to go cold turkey off my HRT so everything aches, I cant sleep, I cant breath and the emotions are all over the shop and the anxiety is making this all 10x worse. Meanwhile I am trying to continue work and family life as normal!? So unfair when I have finally got to a place in my life, happy in my newly set up little business, kids almost off doing there own thing and life was finally looking like I could start having some me time. I did everything right - regular and recent mammograms and health checks all good, but somehow this little nasty thing just some how snuck under the radar. Well damn! DebBCNA 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 hereDupuytren 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 Dupuytrens
