‼️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.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 episodeNovember 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. 💖
Exciting research showing possible 'on/off' switch for Mets
Exciting research being done on an 'on/off' switch for BC Mets - let's hope this one makes it thru the trial stages. Given this study has produced results from a mouse model, the timeline for introduction at the clinical level for *successfully* approved drugs and testing is closer to 12-15 years. It should be noted that fewer than 5-10% of drugs/tests actually make it successfully through this lengthy research process, which includes 3 phases of clinical trials. https://news.stanford.edu/2023/12/20/breast-cancer-metastasis-off-switch-revealed/
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.
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.
Ribociclib and Anastrozole
Hi everyone, I started this combo in January 2019 for Mets lung diagnosed in December 2018. My oncologist told me that results are usually 12 to 18 months and then another line of treatment would need to be considered. Has anyone got any feedback on this combo. Feeling a bit apprehensive at the moment.
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! 😃
