🗣️Help keep metastatic breast cancer on the national agenda
As we continue to push for change to ensure that people living with metastatic breast cancer are counted in Australia’s cancer registries, we’d love your input through a short survey. The survey asks you to share: - The top three challenges you face living with MBC - A time when you’ve felt invisible Your experiences will help inform an upcoming advocacy campaign. The survey is open until 11.59pm Tuesday 28th October. Take the short survey (5-10 minutes) - complete the survey here This work is vital to making sure you are visible in the data that drives cancer policy, funding and services. Thank you for continuing to be part of this important work, together we can make sure that people living with metastatic breast cancer are seen, supported and counted. If you have any questions, please contact us at livedexperience@bcna.org.au
How 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.
From bad to worse, but getting better.
I remember writing in these forums when I first had early breast cancer. I’m back! I was diagnosed MBC last year in March. It’s been a crazy roller coaster! My original cancer was triple positive IBC. It came back in my liver only. It was riddled with them and some were huge. And just six weeks after my reconstruction, when I was “putting cancer behind me”. Anyway I had an amazing response to 3 months of THP and a holiday in Greece last year and they vanished. There was an unfortunate incident involving a hot water bottle that gave me third degree burns to my reconstructed breast. I also had to get a seroma drained ten times (it’s still there). In November I had two small tumours come back, progressing after just six weeks on HP. I went to USA and accessed a new treatment called histotripsy that blows up tumours using only sound. We blew them up and they were gone and I moved onto Enhertu. After six months we saw new progression so I went back to USA in June and blew up the biggest two, which had grown so fast (to 3cm from nothing in two months since a clear MRI). I still have a few in there but hopefully less aggressive ones. Now I am facing a situation where I have discovered I was not offered or given the first line treatment after chemotherapy, and now, I am not entitled to ever receive it on the PBS. I am self funding Perjeta for now but hoping my appeals to the PBS people and to others might help in getting it subsidised or under compassionate access. I feel I am being penalised for my oncologists “mistake”. The truth is I think he did it (called my cancer HER2 only and treated it as such to give me the best chance to access T-Dxd early in the piece I have also now been advised to consider Palbociclib based on the Patina results but this is also not on the PBS for my type of cancer. So somehow on top of the 150k I have spent on blowing up tumours I am expected to find another 100k per year for medicine? Or just accept inferior treatments? Life with MBC can be hard. This week I got an MRI that was interpreted as major progression. I cried I ran off to the hospital to fill the palbo prescription then came home and realised the lesions (extremely suspicious for metastatic progression) were actually the three treatment zones I had targeted (phew). So there are only babies that will hopefully now start shrinking from standard of care 15 months late and largely on me. I’m considering going to India for cheap palbo or back to California for more liver bombing. I never knew cancer would turn me into a jetsetter. I am also a mother of two girls 10 and 13. Keen to hang around as long as I can. Well that was a long story! I remember I got some good support here when I was going through it the first time. I’d love to meet others in the same boat in Melbourne.
Living with metastatic breast cancer in QLD?
Good afternoon, I hope this message finds you well. We're looking for individuals living with metastatic breast cancer (MBC) in Qld who may wish to participate or share a quote for a BCNA press release surrounding MBC advocacy. If you are interested please comments on this discussion or send an email to BCNA's Policy and Support Services Media and Communications Specialist: Edwina Pearse, at EPearse@bcna.org.au by Wednesday 4 2025. More details about this engagement can be provided for those who enquire.
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/Brain Mets
It’s a long time since I posted here. Herceptin has been doing a great job as scans 6 months ago came back NED! In July I had a nasty fall and needed skin graft on right knee area, 3 weeks in public hospital, then another 3 in private hospital for wound care and rehab. All good until scan 14 Feb. new spots on a rib and lower spine, and brain! That was a shock! MRI showed 7 lesions in brain which were treated promptly with stereotactic radiation therapy, only one session required. I’ll see radiation oncologist on 21 April. I’m old and tired and apart from ongoing herceptin, I don’t want any more treatments. I’ve outlived my “use by” date!! good wishes to all Opoho
Hair loss / extreme thinning with bone Mets medication
Hello, I would really value some advice on if it is possible to overcome the hair loss side effects of medication. My hair has really thinned out in the scalp region. I have been taking both Verzenio and Letrozole for a year to manage the bone Mets. I am now starting to feel self conscious at work. I can feel the irritation in my scalp. Is there something I should try or a different specialist I should talk to? Thank you,
Mum recently diagnosed
Hey all, I've joined this forum in the hopes of connecting with others. My mum is 69, diagnosed with breast cancer 2 months ago and now has been diagnosed with metastatic BC in spine and possibly lungs (they arent 100% sure on the lungs) as the spots are so small. Shes started oral chemo and hormone therapy today and will see the oncologist again in 5 weeks. She seems to be handling it well so far but she's not feeling sick or anything yet so i guess time will tell. Im sure its going to be a long journey and I'll be here to support her every step of the way. I currently live with my mum so im glad Im here to be there for her. I just wanted to pop in and say hi.
Spinal,radiation
Hi there -seems I have joined the club that none wants to join when we get that diagnosis of breast cancer Initially it was early breast cancer diagnosed by mammogram , then chemo/lumpectomy/radiation and further kadcycla /TDM1chemo First post here after being diagnosed this week with bone metastases in L3 and 7th ribs. I will,be talking to a radiation specialist next week re radiation , and will take a list of questions with me , but I was wondering if anyone in this group can fill me in on how,they found it as well? I’m one of,those people who like to know and mull over things Previous radiation was to Left breast triple positive cancer earlier in the year post lumpectomy . Was over 4 weeks , with mepitel guarding my skin .realise it will be easier I think than breast radiation but wondering what side effects and durationNewly diagnosed - Just need some positivity and hope
Hi Everyone. This is my first post. I am trying to navigate this network, because I know I need help. I was diagnosed with metastatic breast cancer only 5 days ago. I have many tests coming up, and treatment options. But for now, I can't seem to find the strength. I just need to hear some positive stories, some good stories, some hopeful stories, so that I can muster enough determination to stop crying for one thing, and to get my anxiety level down. I have an amazing family, and they also need some hope. I am 56, and was originally diagnosed 13 years ago with early breast cancer, and was told "you are cured"???? I am sorry to sound so desperate, but I'm still in that place where my world feels like it's ending. Thank you for reading, and I send hugs to everyone.
