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Chances of phase 2 of DIEP flap reconstruction
Hi all, I am considering doing Diep flap reconstruction after a Mascetomey tissue expanders. But I've heard from other chats that women have had to do "phase 2" of diep flap reconstruction, my PS hasn't mentioned this. I was under the assumption that if all goes well, that it was only one surgery to transfer tissue to reconstruct the breasts. I am feeling a bit anxious with the chances of having to do more than one surgery and thinking of implants now. I'd love to hear from any women who've had diep flap reconstruction and implant reconstructions. Thanks 😊
Post surgery / cancer follow up.
Not sure where to write this one! If anyone has suggestion on where please let me know and I'll put it in there. So I have had a shockingly bad journey. TNBC. Stage 2-3 when started...so they said. Long story....Finally culminating in a Left Mastectomy. Histology shows they definitely got it all and there was NO lymph node involvement. But I can never have Chemo again. And I can't have Radium anywhere on my left side as I had to have a ICD Internal Cardiac defibrillator implanted. SO...in terms of cancers? No more treatment options for me really. And according to what they say? I have no greater chance of my cancer reoccurring than risk of cancer generally. Don't really believe this, but they got it as well as it can be done. Because of my Heart problems and Sarcoidosis. I will have another PET scan end of Feb 2026. Ordered by my Immunologist. Then hopefully if all is well? That should be it. Probably yearly visit to Cardiologist for a few years with him doing Cardiac Echo's. I have a good GP. So...I see no point in going back and seeing the Oncologist. There's nothing more the oncologist needs to do for me that I can think of. And I'm very pissed off at her. I think she was negligent and all that happened is because she was not monitoring my Chemo closely enough. I should not have gotten to where I got to and I should not have nearly died. So, I'm wondering? What is the usual post cancer follow up process? Who do people see and what tests in what time frame is done? Do you have regular PET Scans? MRIs or what? And who generally orders these tests? How often do you have follow up appts and with whom? I am wondering if I just find another Oncologist if it's the oncologist I am supposed to continue to follow up with. Anyone shed any light on this?
One week until my surgery....
Hi Everyone! Reaching out to my online friends. Today marks one week until my surgery for the bilateral total mastectomy and left axillary dissection. I have chosen to go flat and Im ok with this decision. Any words of advice, encouragement, essential items you packed when you had surgery? I have the button up PJs. My surgeon said I will be in hospital for 4 nights as he wants to monitor the drains and hopefully remove them before my discharge home. But any advice to help me mentally, any tips support would be appreciated. Physically I am going ok, I have finsihed 4 rounds of the red devil; 1st milestone done! Now Im mentally preparing for next week. At least I get to have a lovely Easter break with my family prior to surgery. (no horror stories please.....Im trying to stay positive and resilient). Thanks my friends xx Post my surgery recovery I will need 15 sessions (1per day x 3weeks) of radiation. But first my mind just needs to deal with the surgery next week as the next milestone.
Heavy lifting after surgery
Hi all Im 17 days post bilateral mastectomy and recon. I have a 3 yr old and a 1 year old. My husband is doing all the lifting etc but today I forgot myself and picked up my 3 year old. I instantly remembered and went to sit down with her. Im not in any pain and nothing on the outside seems to be affected. has anyone done this and if so, what signs do I need to watch out for with messing up recovery? thank youRadiation Therapy Omission
Hello, I have been informed by a radiation oncologist that I am at a increased risk of developing radiation-induced fibrosis (RIF) from radiation therapy (RT) due to my having a connective tissue disorder. Following research around this I am currently weighing-up the risks and examining my options. I find the decision-making around this challenging and would like to invite members to share their experiences with: Decision-making around RT omission Experiences with RT omission Experiences with RIF e.g. immediate and late-onset effects Please include as much detail as possible. All comments are appreciated. Thank you, 🌷KlioPost Mastectomy discomfort
HI, I had a left Mastectomy end Sept 2025. I have healed up okay. However, I have always had this really "tight" feeling under my arm and there appears to be a hard area, like a muscle that has been pulled really tight under my arm. Initially I was told to do plenty stretches etc, which I do. However, since surgery I have also had pain down my left arm, like nerve type pain. I am an RN and to me it seems to be neuropathic pain. It frequently is more painful at night and almost every day still wakes me up. And I cannot sleep on my left side, I used to a bit, but now if I try. after about 30 minutes I am in pain and have to roll back onto my back. I am also numb under my arm and across the left side going up to under my arm. My left side still feels really heavy and tight. I did not have any lymph nodes removed. Only breast tissue. I am a bit overweight so surgeon (very experienced) said it was hard surgery to do. I used to have very large breasts and had a reduction 10 years ago. I was supposed to go back and have further liposuction as in the initial surgery they could not do anymore liposuction under my arms. I had to wait until all bruising went down. That was so painful I never went back and have put up with having too much "Breast" under my arms for 10 years! Ironically at the beginning of 2025 before the TNBC diagnosis. I was thinking "this year I really must go back to the plastic surgeon and get the breasts fixed up better" as it did look a bit weird. Anyway. Does anyone else have this problem? Do you think it's just a "it takes time" thing as when I bought it up with Surgeon and Breast Cancer nurses Oct /Nov last year they just said recovery would take time. But it's now been almost 6 months and I am still having problems. Do you think I should go back to surgeon and follow up again? I'm just SO FED UP with seeing doctors!! I've had massive problems /complications from the Chemo & Immunotherapy and am just starting to get my life back. I want to avoid seeing doctors as much as I can to be honest. Anyone have anything similar??
Grade 3 Oncotype Test Chemo decisions
Hi all, I’m in the challenging time of making decisions about chemo and would love to hear experiences from others journey particularly with any similar cancer. I have had lumpectomy on left breast results showing- Stage 2A invasive carcinoma 25mm Grade 3, HR+ PR-HER2- with lymphovascular invasion but all 13 lymph nodes sampled as clear. I am 39yo and very active and healthy (apart from this)! I pooled my savings to get the oncotype DX ordered- I am now waiting for results. (Still can’t believe we have to pay $5000 for this). I understand the Grade 3 PR negative and lymphovascular invasion detected are likely risk factors that tip towards benefits of chemo. But I have been reading more about the effectiveness of hormone therapies like OS+AI and that perhaps I could avoid chemo. I will let you all know my score when it comes back- I hope it’s low but if it’s high I’m facing such hard decisions that any similar experiences may help! thank youZoladex 3 monthly available but not PBS covered for women
I wanted to share something I recently learned as it might help ease the burden of regular monthly injections. I recently learned that the goserelin injections many of us have monthly are actually available in a 3 monthly dose (10.8mg). I was a really hopeful thinking this could significantly reduce the stress, time and cost that comes with needing to have an injection every 4 weeks. However, my Med Onc informed me that in Australia, the PBS doesn't subsidise the 3 monthly dose for women, although it does for men (prostate cancer). The reasoning given that there's `insufficient evidence of reliable suppression of serum oestradiol' in women. What doesn't make sense is that there is evidence suggesting otherwise. Recent research indicates that the 3 monthly dose is non-inferior to the monthly dose for pre-menopausal women with breast cancer in terms of ovarian suppression. For me, the monthly injections come with a real burden: financially - GP visits and medication add up every month time wise - frequent GP appointments and pharmacy trips take time out of the week. physically and emotionally - injection itself is painful, it's a large slow release implant into the abdominal subcutaneous tissue. The main alternative - surgical removal of the ovaries is obviously much more invasive and comes with it's own risks and long term consequences. Given that the 3 monthly option is already in use, clinically tested and could ease the burden for many of us, I would really like to see equal PBS access for women. I'm curious, has anyone else looked into this and how to go about taking action?
Hot Flushes
After switching from Anastrazole to Tamoxifen I have turned into a volcano of hot flushes and I can’t cope with them any more. I’ve tried all the “things”, including acupuncture & hypnotherapy but still having so many to the point of dripping in sweat. Do they settle down at all (I’m 4 months on Tamoxifen) and whilst I don’t want to take yet another drug my doctor has suggested Veozah. Has this worked for anyone?
