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.
COV-19 and shopping
Hello! I have stage 4 breast cancer with spinal mets. I am on Ribociclib (600mg)/Letrozole/Denosumab. I am currently self isolating as the medication means I am at risk. I just found out you can register for home deliveries from Woolworths as an at risk person. Here is the link to register: https://www.woolworths.com.au/shop/discover/priorityassistance? It says it will take 48 hours for them to contact me but I thought it might be handy if you are in a similar position to register early. Stay safe everyone! 😃‼️Tomorrow is the day.
No one knows how many people are living with metastatic breast cancer, not just in Australia, but around the world - something that BCNA has been advocating to change for over 27 years. Together, we acknowledge the missing link and everyone who has waited to be counted. Tomorrow, we make it count. For too long, a community has been living in the shadows, their experiences missing from our national data. BCNA has been fighting to change that. Change begins tomorrow.🧑🤝🧑Today, BCNA took to Parliament House: Advocating for Change
Today, BCNA’s Director of Policy & Advocacy, Vicki Durston, stood at Parliament House to champion the voices of those living with metastatic breast cancer. Her mission has been clear: every person must be counted in all states and territories. Accurate data is essential to ensure equitable access to care, resources, and support for those who need it most. This is a powerful step toward recognition and better outcomes for the metastatic breast cancer community. 👉 Click here to watch Vicki's personal messagefor those living with metastatic breast cancer in our Online Network community 💬 What does being counted mean to you? Share your thoughts below.November 27th is almost here..... 🥳🥳
Metastatic breast cancer (MBC) is treatable but incurable. No one knows how many people are living with MBC not just in Australia, but around the world, something that BCNA has been advocating to change. "Our advocacy over the last three years has focused on counting those living with metastatic breast cancer (MBC) and our attention and determination has led to this defining moment. Through strong collaboration with governments, researchers, data experts, and consumer advocates, we have achieved what once seemed impossible - visibility for people living with MBC in our national data systems. This outcome is the result of the collective strength of a sector determined to transform invisibility into insight, and insight into influence. " - Vicki Durston, Director of Policy & Advocacy BCNA 📝The successful reporting of national metastatic breast cancer data marks a significant step forward in Australia’s commitment to improving cancer outcomes. It demonstrates how far we have come in recognising and responding to the needs of people living with metastatic disease. Stay tuned to find out the numbers on November 27th....let's make metastatic breast cancer count. 👉Learn more about MBC with our Upfront about breast cancer podcast episode
Metastatic de novo diagnosed 20 July
Hello, I was diagnosed on 20 July with grade 2 stage 4 De novo BC. As many of the ladies on this forum have mentioned regarding their own experiences , it’s been a wild roller coaster ride. The diagnosis of BC was confronting in itself, to find out it had already spread to my hip, well I was just gobsmacked. I’m 58 and keep very fit by running and going to the gym. I run around 40km per week and just couldn’t believe I had it in my hip. I’ve absolutely no pain, and ran in a 10km race the day before my diagnosis. Well, I could deny it all I wanted, the fact is, it’s in my hip. The next complete shock was to be told there is no cure. In the interval between the original BC diagnosis and the PET scan(which showed the hip lesion) I’d been reading and researching everything I could on the various treatments etc. and preparing myself mentally for surgery, chemo etc. to then be told that none of it was for me, as it’s metastatic, well that was just devastating. However, I’ve now received some good news. My health team has recommended an aggressive approach to treatment. Since the hip lesion is small and is the only evidence of BC outside of my breast, and I’m young (😂) and fit with no other health issues, they are going to try for cure by starting with hip replacement surgery and radiation, Two weeks post surgery I will start on Chemo for 5 - 6 months and will then undergo a mastectomy. It’s terrifying, but also gives me hope. It’s been 3 weeks now since diagnosis and I just want to get on with it. I see the orthopaedic surgeon on Monday and hopefully have surgery the following week. I’ve found the comments and discussions on this forum to be such a help, inspirational really, so a big thanks to everyone.
Inspiration from Nightbird
For those of you who need some inspiration. This link takes you to a segment of America's Got Talent where a beautiful 30 year old woman sings her own song about her MBC journey over the last 12 months. The song, her voice, and her attitude is truly beautiful and inspiring (although a little bit sad). https://youtu.be/CZJvBfoHDk0
Immunotherapy Atezolizumab (Tecentriq) Metastatic Triple Negative Experience
I just wanted to share my experiences with accessing the immunotherapy drug Atezolizumab (Tecentriq) that is currently not on the PBS (but hopefully will be soon!). In 2017 I was treated for TNBC stage 3 breast and lymph nodes, had 3 amazing years of good health, family and travel, then in March 2020 found an enlarged lymph node in my neck, same side as the BC. It took several ultrasounds (originally diagnosed as a vein) and then a biopsy to find out if was a small 1cm met tumor. I was referred to a trial at Peter Mac, but after testing (PDL1 Positive) found out the tumor was too small to qualify. Then referred to a different hospital for the same trial, waited 4 week for the tumor to grow only to find out the same thing, however was given the option of self funding through the private system. I had at each hospital ask about this, and somewhat annoyed that I was given a rough cost per treatment, not the compassionate deal that the pharmaceutical company was providing - $25K for 5 treatments, then no cost thereafter provide there is a response to treatment. Referred back to my original oncologist who completed all the paper work to the pharmaceutical company (Roche) and my private health insurance, who would be covering my private hospital day stay costs. I was waiting anxiously for my first treatment bill from Roche when my Oncologist called me to say my Private Health Insurance had agreed to pay the full costs (except the hospital excess) of the Tecentriq drug! Needless to say I was overwhelmed by both my private health insurance and my oncologist who completed all the paperwork. I've now had my first full round of treatment (3 weeks on, 1 week off) and can already feel changes in my neck. I don't know how long I will be on the drugs for, or how my body will react, but think it is important for others who may be in the same situation to know that if a drug is not yet available on the PBS, there still maybe ways of accessing it. Just as a side note, the trial I was referred to was stopped as it was using Tecentriq with Taxol and did not show any benefits to Taxol on its own. The previous trial to this for Tecentriq was with Abraxane which had shown a benefit - this is the combination I am on.📣 “My legacy is making it better for people behind me” - together we count metastatic breast cancer
“My legacy is making it better for people behind me” - Lisa Tobin, Consumer Representative for BCNA and living with metastatic breast cancer. Lisa is one of the 20,950 living with metastatic breast cancer (MBC) in Australia - more than double previous estimates. Now, it's time to make the numbers count. 👉Sign BCNA's pledge urging state and territory governments to invest in their cancer data registries. 🧑🤝🧑Check out Channel 9's coverage of this important announcement - It's more than just a number. Being counted means being seen, and being seen is the first step to being properly cared for.November 27 🚨 Big News Coming! 🚨Counting Metastatic Breast Cancer
In 2022, BCNA began the Making Metastatic Breast Cancer Count initiative - a vital step toward ensuring every person living with metastatic breast cancer is counted and supported. After years of advocacy, collaboration, and research, we’re thrilled to announce that on November 27, we will finally share the outcome of this groundbreaking work. This is more than just numbers - this is a long awaited step in the right direction towards visibility, equity, and driving change for thousands of Australians living with metastatic breast cancer. 📖 Learn more about the journey: 🔗 Time to Count: A Way Forward 🔗 Our Pledge 🎉 Get ready for the big announcement on November 27! Together, we’re making metastatic breast cancer count. 💖
