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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 you
Zoladex 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?
Hormone Blockers
Hi. I was diagnosed with early invasive carcinoma with lobular & ductal features, grade 2, ER/PR + and HER2- on 3rd March. I had a lumpectomy on 9th March and subsequently developed a large - 94mm - haematoma which popped on 4th April and has been bleeding since. It is not losing much now, but still enough to have delayed radiation. There have been 2 unsuccessful attempts to drain it, but it remains solid. I am currently now scheduled to start radiation on 5th May and had the planning scan last Friday. I'm then due to start Letrozole 2 weeks after radiation finishes. My big concern at the moment is the Letrozole and the potential side effects. We have a 7 week trip to Europe booked to leave on 31st August and I'm terrified of side effects kicking in and affecting our holiday. There are plenty of stories on BC forums indicating how awful those side effects can be. What would you do?
Stopping hormone blockers
Hi I was diagnosed with BC at the age of 40 in 2022 and have had surgery, chemo, radiotherapy and have been in remission since May 2023. I went on hormone blockers straight after my active treatments finished. and was on them approx 8 months. I tried 3 types of hormone blockers - Letrozole, exemestane, and Tamoxifen. The adverse side effects were too much for me, and I chose to stop the tablets, chosing my quality of life over the possible the risk of recurrence. I also had one zoledronic acid injection (as I was forced into menopause, having my ovaries removed), but have recently been informed that there is no benefit for me to continue the injections as I am no longer taking tamoxifen, and have not been on tamoxifen for over 6 months. I made the choice at the time which was best for me. At first it was to take a break, and maybe return to taking my meds which did not eventuate as I felt so much better not on them. I did not realise or maybe did not listen that the break could/would compromise the benefit of taking the meds, and that I couldn't just pick them up in the future. I have some regret, but now feel like I have to live with the decision I made, which at the time was made when my life quality was not good, nor was my head space. I was also told that without taking any treatment, I no longer need to see my oncologist is that right? I guess I just wanted to share my story and see if anyone else could share if they decided not to continue with hormone blockers within the first year after active treatment. Take care everyone 🩷
Another Re-Excision or Mastectomy?
Well, here I go again. I was diagnosed with DCIS in December. It has been a long path, but I eventually had a double lumpectomy on my right breast on 26 March 2026. A week later I was told that although they got clear margins, three of the margins on my largest lesion (4 cm) were less than 1mm. So, I had a re-excision on 15 April to get wider margins. I saw the surgeon this morning, who told me they found more disease and the new margins are still less than 1mm in two places. I have to have more surgery next Wednesday but have to decide (by Friday) whether to have another re-excision (and my breast will be starting to look a bit sad after that) or go straight to a mastectomy. She said it was quite feasible to try a re-excision again, to preserve the breast if I want to, but if they still find disease or don't get good clearances, then I have no choice but to have a mastectomy. If I have the re-excision, I have to have radiation treatment for 3 weeks, 5 days a week afterwards. If I have a mastectomy, then it's all done. No radiation and no lymph node involvement. Does anyone have any advice on what I should do / or want to share your story if you've had a similar experience? I know it's my decision, but your advice is appreciated, thank you.Hormone Blockers Weight gain & GLP-1s
Hi Everyone, I am 53 yeards old and 3 years into hormone blockers and am managing (barely) all the side-effects except for one. Weight gain. I have always been fit and active and I am working out more than ever and eating incredibly healthy and nothing seems to make a difference. I have slowly increased from a size 10 to almost a 14 since commencing hormone blockers. I have seen some medical evidence that GLP-1's at a low dose have been helpful for not just weight loss but also a reduction in other side effects as well. Has anyone else had a conversation with their oncologist regarding using GLP-1's and potential benefits? I don't like the thought of taking yet another drug but I am getting to the point of worrying about everything I eat and also cannot afford to keep buying another size up! If anyone has any info on this topic or knows of any specialists in this space I would appreciate it very much, Thanks!!
Post mastectomy and auxiliary clearance concerns ?
Hi I am a 45 yr old post single mastectomy on my left breast and also full auxiliary clearance and was hoping for some advice from those who have gone through the same ! I am still struggling to be able to lift my left arm to a full reach and also have some weird sensations in different parts of my under arm and also my upper arm and from where breast was ! I haven’t left the house much and can feel my mental health heading down ! I’m just curious as how long it took others to be able to be at full arms reach after surgery and or any tips regarding this ! I am following the after drain removal exercises but still quite painful for me is this normal for 2 weeks 3 days post surgery ? Feeling quite lost with it all so thought would reach out to others for some or any advice ? Thanks a lot for taking the time to read !!
Unilateral mastectomy with delayed reconstruction
Hi everyone, I’m currently in treatment for TNBC and starting to plan my surgery and reconstruction, and I’m really hoping to connect with others who have had a similar pathway. Others who chose unilateral mastectomy with expander/implant reconstruction I’m 41 and currently undergoing chemotherapy (AC followed by weekly Paclitaxel). Surgery is planned after chemo finishes very soon. My current plan, pending final discussions with my surgeon and a plastic surgeon, is: Unilateral mastectomy (left side) Nipple removal (due to previous lumpectomies and blood supply concerns) TExpander placed at the time of mastectomy Later exchange to a permanent implant (skin is tight and I'm too small for immediate reconstruction/DIEP) Possible fat grafting and/or minor adjustment to the natural breast for symmetry Genetic testing was negative, so my surgeon feels comfortable with a single-sided mastectomy rather than bilateral. One of my biggest challenges right now is that most of the stories and photos I find online seem to be double mastectomies and DIEP, and I’m finding it hard to visualise what unilateral reconstruction looks like long-term. Some things I’m especially curious about: How close did the reconstruction get to your natural breast over time? Did you end up having adjustments to the other breast? What did the expander stage look like under clothes? Were you happy choosing unilateral rather than bilateral? Anyone who slightly increased their size with implant? Did anyone here go on to have fat grafting to improve symmetry? I’m quite small-framed and originally around a B/C cup (medically-induced menopause and weight loss have decreased this somewhat), and ideally would love to maintain a similar size and shape if possible. I’m also trying to understand what the timeline looked like for others, particularly between mastectomy, expansions, and implant exchange. I would really appreciate hearing from anyone who has taken this path, especially if you: had unilateral reconstruction had expanders then implants were younger (30s–40s) when treated Even just hearing your experience would help me feel a little less like I’m navigating this blindly. I’m finding the lack of similar stories and images a bit overwhelming, so I’d really value hearing from anyone who’s been through something like this. Also, anything to potentially be aware of for out-of-pocket expenses. Thank you so much in advance.Chemo dilemma
Hi I'm struggling to get the information and support to make a decision on whether to have chemo prior to radiotherapy. Wondering if anyone has any thoughts from a similar journey or ideas of where I can go for help? Her2 negative hormone positive 15mm grade 2 on biopsy grade 3 following lumpectomy with clear margins and clear lymph nodes. Ki67 was 5-10% at biopsy not tested on tumour so possibly higher. Would like genome testing advised to have ProSigna which is for post menopausal women I'm pre-menopause (?!) Struggling to get hold of anyone to give me answers or advice I understand its my decision and I'm in the borderline/grey area but want all info possible to make an informed decision 🤔
