Are you a member of the private Living With Metastatic Cancer group?
My name is Rachelle and I am based in Melbourne. I have MBC and joined the newly formed MBC Advisory Group to help BCNA, at this stage, with the revision of the Hope & Hurdles hardcopy guide and to inform BCNA of emerging issues affecting people with metastatic breast cancer. I have also put my hand up to be a group leader of the private ‘living with metastatic breast cancer’ group to encourage people to share their experiences and support one another. I will also keep you informed of the advisory group activities and welcome your thoughts on the good things and gaps in care that you may experience in your local areas to share at committee meetings. I see that people are more active in this forum but I was hoping, along with BCNA, that we can transfer the activity to the private group, where people may feel more comfortable to be open with their posts/comments yet feel reassured that all posts remain private. If you are not yet a member, please consider joining. If you are a member, perhaps you would like to post your story under the Stories announcement.
6 months on Ribociclib
Well it’s been 6 months and the Ribociclib combo seems to be working. I started this Mets journey in Dec 2018 with tumour markers at 114. My latest blood tests were in early June with tumour markers at 42. It’s a nervous week this week with scans, blood tests and Onc visit, so fingers crossed that my results stay positive for another month. One thing I have learnt on this journey is it takes the emotional rollercoaster ride to help you cope with the good and bad days and aids the process of learning to live with cancer rather than focusing on dying of cancer. Hang in there 🤪😍
THANK YOU, BREAST CANCER NETWORK AUSTRALIA NETWORK
T My name is Karen Cowley and I have been living with Advanced Breast Cancer for 12 years. I am also a very proud BCNA Consumer Representative. On Thursday 5th April, 2018 I was privileged to be invited to a very auspicious occasion at Victorian Government House hosted by The Honourable Linda Dessau AC to mark the 20th Anniversary of Breast Cancer Network Australia. I came away from this function just wanting to write down what Breast Cancer Australia Network means to me. Today I see a very modern organisation that has become the envy of many health organisations as it’s been the trail blazer not only for breast cancer survivors in Australia but by example, is the benchmark on what can be achieved by charity organisations whose existence is to give a voice through advocacy and community liaison for our most vulnerable people suffering from chronic or terminal disease. BCNA is truly the peak organisation for Australians affected by breast cancer by providing the very best support, information, treatment and care. Personally, I found out about BCNA by receiving “My Journey Kit” following my surgery in 2006. This was an invaluable practical and informative tool. I thought “wow” a lot of research and thought has gone into this resource. From then on, I was hooked, BCNA has not only provided me with support and information, but what is impressive, is that the “heart” of the organisation is its members who are encouraged to play a role. For me this has allowed me to express my challenges and triumphs without judgement or pity; pivotal in my mental health. Today, a fantastic BCNA initiative is the Online Community which allows members to connect and help and support each other and is also a portal for the BCNA organisation to keep up with member issues. From time to time I have become quite the blogger for this forum especially in the Metastatic Cancer category. Everyone is gracious and always respectful of everyone’s opinions. My personal involvement with BCNA started in 2012. What got me started with BCNA was an Information Forum in 2012 which covered a range of topics, but for me I was passionate about new technologies. Living with advanced breast cancer you are always aware of your mortality. Prof. Fran Boyle talked about T-DM1 (Kadcyla) technology. I thought it would be treatment for me so took this information back to discuss with my Oncologist. I was running out of options, so I became very active in supporting BCNA as a Consumer Representative to get Kadcyla approved by the TGA and then onto the PBS. This process took 4 years, but we got there. It was a privilege to have the opportunity availed to me by BCNA as their Consumer Representative to have the opportunity to address a Senate Committee looking into “Availability of New, Innovative and Specialist Cancer Drugs in Australia” in March 2015. Today BCNA are advocating again to get CDK Inhibitors Ribociclib and Palbocicib on the PBS. BCNA have valued my skills and have given me much needed self-esteem, and in turn BCNA have and continue to involve me in many of their initiatives. BCNA is a dynamic organisation constantly identifying ways they can affect improving outcomes for people diagnosed with breast cancer. You never know what curve balls life is going to throw at you, and it's how you deal with them that defines who you are. For now, I am living with cancer. It is my hope that we obliterate it, but I am not wasting time worrying about it. Anyone that has cancer knows that life goes on and it’s up to you to go with it. I find it very comforting to know that I am not alone and know that I can rely on BCNA to support me. Thank you. As part of the 20th Anniversary BCNA “Field of Women” Stand with Me at the “G” on 12th August. My family and I will be there. What a wonderful way to celebrate this fantastic milestone for BCNA, an organisation that has my interests and needs at heart.
Time to own up to mets
Hi pink sisters I feel like it’s time to own up to my stage 4 liver Mets that I was diagnosed with 12 months ago I can’t say I’ve been paddling in that Egyptian river.... de-Nile.... denial (get it? :smile: ) but I have been avoiding owning up to it. I guess I’ve been wishing it’s all just a bad dream... alas! Here it is: I was diagnosed in Sept 2010 with early triple positive with only one mode involved... oh yeah and I was 25 weeks pregnant. Mastectomy, 15 months chemo.. 3 with a baby on board - then 6 weeks rads and then two reconstruction surgeries all with a newborn and a 2 and 4 year old. A blissful 7.5 years on Tamoxifen with the knowledge that I was completely cured... until Feb last year. My liver was full of it... not your normal solid tumors but a spiders web like covering of the liver. Lots more chemo with which I did not enjoy during liver failure... ended up in hospital each time but almost unbelievably I can say I’m NED for 6 months! Crazy crazy times! So that’s my Mets story but I’m much more than that! I’m a full time mumma to three. I’m slowly working my way through a history research degree. I love sewing, bushwalking, talking to random strangers, tracing my family tree and chocolate (more than most things!). So I just popped in to say hello and that i plan on hanging around here for a long time if that’s okay. I’m currently enjoying herceptin and perjetta every three weeks and hope to be for a long time to come. Kim :)
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 KPSeason 2: Podcast Series "What You Don’t Know Until You Do, with Dr Charlotte Tottman"
Charlotte is back with an 'unlimited' season! Listen to Upfront About Breast Cancer podcast What You Don’t Know Until You Do with Clinical Psychologist Dr Charlotte Tottman (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 BCNA’s podcast-series on our website or wherever you get your podcasts. 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.auBCNA Leads First National Roadmap to Collecting Metastatic Breast Cancer Data
A roadmap to finally count the number of people diagnosed with incurable and life limiting metastatic breast cancer (MBC) is a step closer thanks to the $1.5 million announced over the weekend by Prime Minister Anthony Albanese to fund a cancer data alliance. Almost two years ago a group of Breast Cancer Network Australia (BCNA) consumer representatives living with metastatic breast cancer told us they feel invisible. They wanted to be made visible by being counted properly on all our cancer registries across Australia. Currently this data is not consistently collected across all states and territories. Last November BCNA launched the roadmap to address the lack of national cancer data for those living with MBC at Parliament House, Canberra. The roadmap was the result of a roundtable that saw experts from across the sector work towards recommendations to improve Australia’s cancer data, which aligns with one of the priorities of the first Australian Cancer Plan, launched last year. BCNA Director Policy Advocacy & Support Services, Vicki Durston acknowledged everyone who had come together to make this roadmap a reality, including the late Peta Murphy MP who stood with BCNA for many years to have people with MBC made visible through national data collection. “She would have been so incredibly proud that we are now closer to ensuring that the many thousands of invisible Australians with metastatic breast cancer will no longer be hidden in plain sight,” Ms Durston said. “We know that cancer sectors in other countries around the world are watching Australia, this is our chance to build on progress being made and to become a world leader in health data.” This $1.5 million funding to the Australian Institute of Health and Welfare will ensure the formation of an Australian Cancer Data Alliance, which will see state and territory cancer registries supported to work towards routinely collecting cancer stage and recurrence data. “This Federal Government funding will help the sector pioneer the collection of this important data to inform and drive policy, innovation, planning, treatment and care,” Ms Durston said. “How can we possibly support this population living with metastatic disease and meet their needs when we don’t know how many people in Australia are living with metastatic breast cancer? “Today we can begin consolidating a way forward for better quality data not just for breast cancer, but for all metastatic cancers.” BCNA has been calling for improvements to Australia’s cancer data since 1998 and will today mark this key milestone alongside all those with a lived experience of cancer and their advocates. Read BCNA’s report Time to Count People with Metastatic Breast Cancer – A Way ForwardVale Peta Murphy MP
It is with much sadness that Breast Cancer Network Australia acknowledges the death of Peta Murphy MP. In Peta’s maiden speech to Parliament in 2019, after she was elected to represent the federal seat of Dunkley, Victoria, Peta told our country that she had been diagnosed with metastatic breast cancer. In this speech she shone a light into a place many are too scared to. She wanted people to see her living with, not dying from, breast cancer. She was a powerful voice who could articulate the very real issues of those living with a treatable but incurable cancer. In her speech, she said ‘I am neither unique nor alone in this disease, but I am someone who has a platform that I can use to benefit others and I intend to use it.’ Her voice has been an essential part of BCNA since that time. Her legacy of advocacy and bravely sharing her story will continue to benefit many others. As you may know, just days ago she called her own government to account to ensure that all Australians with metastatic breast cancer are counted by our cancer registries. It is incredible to think that in her final days she found the strength to go on Radio National with this advocacy call-to-action, and we thank her for helping us to launch our roundtable report at Parliament House. BCNA will continue this advocacy until all people with metastatic breast cancer in Australia are counted. Our lives are forever enriched by the life, the voice and the tenacity of Peta Murphy MP. If you find this news difficult, you are welcome to call our Helpline on 1800 500 258 between 9am-5pm or email helpline@bcna.org.au.
Long term Herceptin
Hi was just wondering how long people have been on Herceptin and how they are doing? I have celebrated 14 years this January and will have my 238th infusion next week. I have had a mastectomy and am waiting to have the other one removed as I hate the lopsided feel and having all my clothes moving to the left very annoying would much rather be flat. So far everything is stable and the Herceptin is what they call maintenance dose to keep me stable. hope everyone is coping as well as they can ❤️❤️
Cancer Australia and Metastatic BC
Cancer Australia has just updated their statement on MBC. This is good news--they have some serious clout in the research world. https://www.youtube.com/watch?v=Y8QU_Z_SaLY https://canceraustralia.gov.au/publications-and-resources/cancer-australia-publications/metastatic-breast-cancer-summary
