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.
67 Male Metastatic Breast Cancer
Good Morning My 67 year old dad was diagnosed at the end of February with Her2 negative breast cancer. He had a mastectomy of the left breast and sentinel lymph nodes removal in March. A week later he had a second surgery to do axilla node removal as 3 of the 5 nodes removed were positive for cancer from the first surgery. The second surgery removed a further 17 nodes all were negative. He had a PET CT scan just before first surgery which came back all clear except for some haemangioma which was not mentioned to us at the time. He was classed as a 2B stage and referred for chemo, radiation and hormone therapy. Things looked positive. At the first appointment with the medical oncologist she booked dad in for chemo, but also mentioned that the PET scan he had done previously showed an area in the T 1 of his spine that should be investigated further as it could be a possible metastasis or a haemangioma. No idea why the breast surgeon missed that in the PET report. Dad did a MRI which unfortunately showed possible metastasis in his T1, T6, T9 and L1. He then had a bone scan which showed same results along with 2 small spots on his ribs. Oncologist has canceled chemotherapy and radiation before it’s even started and put dad on tamoxifen and abemaciclib. He will start denosumab bone injections in about 2 months as he had to pull 2 teeth out to be able to get dental clearance for them. He did a bone biopsy of his L1 yesterday even though oncologist was adamant he didn’t need to do it as the metastasis is confirmed with the scans. Results are pending. His bloodwork is ‘normal’. No radiation has been recommended for now as dad has no pain. The last 2 months has been an emotional rollercoaster. There is very little information out there on male breast cancer. We’re unsure why the PET scan was cleared by the breast surgeon but it turns out there is actually metastatic disease on his spine and ribs. We’re not sure the wait and see approach is ok with us. Do most metastatic breast cancer patients receive chemo and radiation or just hormone blocking therapy. Also not happy bone injections are delayed for 2 months but nothing is replacing it for now. We’re tempted to see another oncologist for a second opinion on treatment. What are your thoughts on dad’s situation?
New to the Team- not exactly happy about it
Hi, 03Dec had a lump checked- invasive lobular cancer, left breast. 09Dec- MRI and spot detected right breast followed by biopsy- same cancer although non-palpable. 19Dec bilateral partial masectomy plus sentinel lymph nodes, and conservative reconstruction. 04JAN results back- MBC!!!!!....PETscan tomorrow. I feel like I am standing in a well listening to grenades go off. I don't know how I got here although I don't think that matters. I am terrified for the future and how short it may be, but then I see some of you with MBC post 6 years,or 9 years, diagnosis and I wonder if that could be me. I used to be a microbiologist before I moved into law (these days I manage risk-imagine managing risk for a living and getting this diagnosis!). I read about the science which is ever changing and getting better at longevity and quality of life and the personalised approaches available for my situation (whatever that turns out to be) but I don't know when the sadness and fear will stop or if this is my life now. I know I am not dying this week or next week or even next year, but the overwhelming feeling is that I might, and so I have organised a council pick up and getting rid of all my furniture that isn't essential, and giving away or selling my clothes BCS I can't see which way is forward, or if there even is forward. I contacted my BCN today and asked for a psychologist BCS I need something to hold onto and this diagnosis vortex is chaotic.
A Qld based Mets Group called Advanced Breast Cancer Group
I've just found this Advanced Breast Cancer group online - it is 'based in Qld' but I would think it could be a useful group for anyone with Mets? "We are a Queensland- wide service specifically developed to support women with secondary breast cancer, and their partners and families." Jump onto the website & see if it might be helpful to you? https://www.advancedbreastcancergroup.org.au/ Access to their Youtube Videos on numerous topics: https://www.youtube.com/@advancedbreastcancergroup/videosThursday Girls - a weekly Metastatic support group in Melbourne ...
l've just received a BC newsletter that includes information on the Thursday Girls in Melbourne - Thursday Girls provides a safe supportive space for members (and their partners) who are dealing with the challenges of living with metastatic breast cancer. Members can attend the group in person or via Zoom - so if not well, or living in rural or regional areas - or even interstate?? ..... you can still attend as regularly as you want. Thursday Girls is a free, weekly therapy and support group for women of any age, living with advanced, or metastatic, breast cancer (MBC). It is facilitated by clinical counsellor Emma Moran-Wall and social worker Marg Haywood. There are currently three groups: two weekly women’s groups and a fortnightly group for the partners of the members run by Michelle Emery Evans. The face-to-face meetings are located in Box Hill, an eastern suburb of Melbourne, Australia. All meetings can be attended in person or via Zoom. The Thursday Girls Group started in 1997, facilitated by Dr David Kissane (psychiatrist and lead researcher) and Dr Christine Hill (psychologist). Funding was by the National Health and Medical Research Council as part of a worldwide clinical trial to assess the impact of supportive-expressive group therapy on the quality of life of advanced breast cancer patients. The evidence suggested that both quality of life and life expectancy improved for participants. When the trial finished in 2003, Dr Christine Hill and Dr Fiona McDermott (social worker) facilitated the group for the next 13 years until the end of 2016, when they retired. Marg Haywood and Sue Fisher took over group facilitation in 2017 and were joined by Emma Moran-Wall in 2023. The groups have three main functions: to share information, create meaningful relationships with people in similar situations and get in touch with difficult feelings and thoughts, dilemmas and challenges. Examples of sharing information about living with metastatic breast cancer include talking about clinical trials or managing unpleasant symptoms caused by treatments like radiotherapy or chemotherapy. Thursday Girls is a not-for-profit organisation that currently receives no government funding and relies on donations and fundraising to continue its invaluable services. Links to published information about the Thursday Girls can be found under https://thursdaygirls.org/publications on the website below: https://thursdaygirls.org/
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,