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.
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 💕
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 xxAries
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.
Can cancer return after you've had a unilateral mastectomy; chemo; Herception, inhibitor?
Hi everyone, I'm curious to know if cancer can make a return visit after I've had a unilateral mastectomy; 12 weeks chemo; 17 1/3 treatments of Herception and I'm on Arimedex (hormone inhibitor)? Due to two lots of micro calcification, I had a left great mastectomy 16/1/17 (12 months next week) and have 1 1/3 Herceptions to go and am on Arimedex for five years. When I had an ultrasound and mammogram of right breast it shows that there is a small amount of micro calcification in the breast. Too small to do a biopsy on. Apparently I had it when I was diagnosed with HER2 in the left breast 16/11/16 which then confused me because I thought the surgeon had said if there had been any indication of micro calcification she would take both breasts off! I have to have another ultrasound and mammogram in six months (May) Anyway, I'm curious to know whether because I've had the chemo; herceptin and on hormone inhibitor, the micro calcification hasn't grown. I realise that the "C" word is always sort of tucked up at the back of my mind. I was told that I would go between the surgeon and oncologist every three months for the next two years to keep an eye on things. Anyone had similar situation? Sorry for my ramblings! Thanks in advance for any comments :)