Survivorship: The Part We Don’t Talk About — But Should
I’m 11 years post my second breast cancer diagnosis, and I’m grateful every single day to still be here. I work five days a week, I show up, I contribute, and I keep moving forward. I’m proud of that. But I’ve also learned that survivorship is far more complex than anyone prepared me for. After Taxol, 5‑FU, and a DIEP flap, I now live with: permanent hair thinning, weight gain, early menopause, neuropathy, hand‑function issues, all‑over body cramping, heart failure, cataract, blocked tear ducts, damaged veins, and numbness from nerve damage. I’ve adapted. I’ve rebuilt not just physically but mentally/emotionally. I’ve learned to live in a body that’s different from the one I had before. But here’s the truth: we don’t talk about this part. Not with friends. Not with colleagues. Often not even with each other. We carry the long‑term effects quietly. We push through because that’s what survivors do. We’re grateful — deeply — but gratitude doesn’t erase the challenges. I’m sharing this to encourage honest conversations. Because survivorship is real work. Because so many of us are navigating long‑term effects in silence. Because speaking up helps others feel less alone. If any of this resonates with you, your experience is valid. We can be strong, grateful, and resilient — and still tell the truth about what survivorship really looks like.
Research has found that slow growing rogue cells can cause late recurrence
Some cancers grow fast - and they use chemo to knock it out, as chemo hits the faster growing cells (eg hair & skin, which get hit as a nasty side effect.) Some cancers grow slow & need different treatment to target IT. Bu when some of the fast growing cells (that became resistant to chemo) start growing SLOW ..... current research is indicating that it might be THESE cells that are contributing to cancer recurrence/Mets at a much later date! Here's hoping they can work out how to target these cells to blast them out of existence too! As these are the really dangerous ones. The study results showed that rogue breast cancer cells can reprogram themselves to divide at a remarkably slow pace, allowing them to form microscopic tumours that silently tick away in distant organs, evading detection for decades. While relapse is known to be caused by cancer cells lying dormant in the bone or other organs, this new research provides evidence on a parallel pathway by which stealthy cancer cells develop into secondary tumours – findings which could uncover new approaches to prevent metastasis. Garvan Institute's study .... https://www.garvan.org.au/news-resources/news/slowly-ticking-breast-cancer-cells-offer-new-clues-to-late-relapse NSW University is sharing this study they've published alongside the Garvan Institute of Medical Research https://www.unsw.edu.au/newsroom/news/2026/05/slowly-ticking-breast-cancer-cells-offer-new-clues-to-late-relapse More indepth article re UNSW's research https://www.nature.com/articles/s41467-026-70683-x
My reconstruction turned into 4 surgeries, 9 transfusions & a cardiac arrest… I need advice
Hi everyone, I’ve been going back and forth about posting this, but I’m really hoping to connect with anyone who may have experienced something similar or can point me in the right direction. I was diagnosed with breast cancer in 2022 and went through the full treatment journey. In September 2025, I underwent reconstruction surgery. What followed was not what I expected at all. I ended up having four surgeries, required nine blood transfusions, and ultimately had the new breast removed. To make things even more traumatic, I went into cardiac arrest when they were trying to wake me up from surgery. I was told it was due to the anaesthetic drug-but I had previously had that same drug without any complications. I can’t shake the feeling that something wasn’t right. I’ve since questioned whether my body was already too weak, whether the amount of blood loss and transfusions played a role, or whether something was missed or mismanaged. This whole experience has had a huge impact on me physically and emotionally, and I’m now starting to consider whether I should be looking into this further from a medical and possibly legal perspective. I would really appreciate hearing from anyone who: Has had severe complications after reconstruction or surgery Has experienced cardiac issues related to surgery or anaesthetic Has sought second opinions or independent reviews Has gone down the path of a medical negligence claim Can recommend good lawyers or specialists (especially in Victoria) I’m not looking to place blame unfairly. I just want to understand what happened and whether I should be advocating more strongly for myself. Thank you so much for taking the time to read this 💕
Capecitibane
Hi there I now have secondary breast lung cancer nodules. My oncologist has trialed me on Pablociclib and Abemaciclib however nodules have continued to grow and increase in number. They are now suggesting a few other options, one of them being Capecitibane. Again symptoms sound awful, especially hand foot syndrome 😞 I would appreciate any accounts of personal experiences with symptoms and results after use. Thank you in advance 🙏🫶
Hi from mum2jj...16 years on.
Hi all, Firstly I don't get on to the main forum discussion much these days, between work and being a group leader of the Choosing Breast Reconstruction group. I've been meaning to pop on for days and share some good news and hope to those newly diagnosed. It was my birthday last week, and the day before it suddenly struck me. I was about to turn 63 and was not sure how I felt about it, and then it dawned on me. That very same day 16 years ago (day before my 47th birthday) was the day I first heard the words "you have breast cancer". It's amazing that I am now at the point that i don't think about it all the time, and I had almost slipped into feeling sorry for myself that I was getting "old". I very quickly changed perspective to gratitude! I now have 2 adult children who were primary schoolers at my first diagnosis. I did not think I would get there. I really have much to be grateful for. My breast cancer story was not always easy. I had a recurrance 18mths after first diagnosis. Yep got to do chemo twice and radiation. Along the way I have lost some beautiful friends and had others go through second diagnosis and mets. It really is a lottery. However I know how l have been lucky up until now and wanted to share a good news story for those recently diagnosed and those going through a recurrance. My heartfelt love to all those struggling and I hope my story can encourage those newly diagnosed. I vow never to whinge about my age again. much love Paula xx
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.Aries
I had a lumpectomy 4yrs ago and was told I didn't need radiation or chemo. Last yr the cancer returned and I had total removal of the nipple joined up with previous scar on left breast. I have been on Tamoxifen and had bad sweats bloated stomach sleeplessness and hot flushes. I changed to Letrozole and had same effects so tried the sister to it but can't think of the name. It's gotten so bad with restless legs as well I can't even look at it so dont take any of them. I'm 75 I know the risk and will seek further advice next wk. There was no quality of life for me during the 6 months I was taking these meds.
Early Access Program - Kisqali / Ribociclib for EBC
Hi there, My medical oncologist called me yesterday to discuss the issues with the current early access program for early BC and Kisqali / Ribociclib. Apparently, the current formulation contains very small quantities of 'nitrosamine' which have been shown in studies to potentially (in a very small number of cases) cause another cancer. The new formulation will not be available for a few months from the manufacturer. Has anyone else who is on Ribociclib had this discussion with their med onc / decided to pause the drug - or decided that the risks are OK and chosen to continue with the medication? Noting there is a BC conference in Berlin next week (my med onc is going but not presenting) and there are a number of sessions discussing CDK4/6 inhibitors for early BC with high likelihood of recurrence. Not sure also if this affects mets patients who are on Ribociclib already too? Just when I think I'm on a certain path things change ... again. Kelly (totally acknowledging personal choice etc - but keen to know what others have been told, and if anyone is OK to share, what they have decided to do).
Scanxiety - bone mineral density
Tl;Dr - it’s another 2 am freakout. I'm having a panic into the void. I'm 3 years on from my diagnosis of early breast cancer (hormone positive idc). I went for my routine bone mineral density scan yesterday, and now I'm really frightened. I could see the image as it was being taken, and there was one spot on my spine that seemed much lighter than the surrounding bone. I don't know what a normal scan looks like, but what I saw on the screen has scared the living bejeebers out of me. I’d crawl into bed and stay there waiting for the dreaded call, but I'm in a proper panic and can't sleep. Far out, I hate nights like this.DCIS Diagnosis (Breast Cancer 8yrs ago)
Moderator moved @cancer_warrior62 post from 'Activity' section to dedicated post in 'Newly Diagnosed': cancer_warrior62 Don’t know if this is the right place for this but I’m struggling each day as it gets closer to my surgery date. I had breast cancer 8 years ago, stage 2 her2 positive had a lumpectomy, did chemo- radiation- Herceptin and 5 years on Tamoxifen, then end of May this year at my routine mammogram they found I had cancer again in the same breast this time it’s DCIS but next week I’m booked in for a Double Mastectomy. It’s hit me harder this time round and I’m crying at the slightest thing even though I’m trying to stay as positive as possible and also joking around with family to lighten the mood about it but anything could trigger me off. I’m always wondering what I’ll look like after as I’m not going to do a reconstruction. I may later down the track in a few years depending how I feel and it’s too much for me to go through. Any advice would be appreciated.
