Struggling to make surgery/reconstruction decision
Hi everyone I have been diagnosed with high grade DCIS with an MRI showing a potential small spot of invasive cancer in my right breast. I have to have a mastectomy and I am booked in for surgery next Monday (8/9) but I am struggling to decide whether to have a bilateral mastectomy and what type of reconstruction to have. I have phone consultations with the plastic surgeon and the breast surgeon tomorrow and have to make the decision during these consultations. I am conflicted with what to do as I am waiting on the results of genetic testing (I had a tumour that was borderline cancer removed in December last year, which included removing an ovary and a fallopian tube) so am extremely fearful of having to go through this again. My initial reaction has been to get rid of both to be on the safe side which my surgeon was supporting but during a phone call with her yesterday she thinks my best option is to do only the affected breast and leave the other one. The reason she is recommending this is the left nipple can not be spared due to this breast being more saggy and the blood flow (don’t really understand it completely so that may not make too much sense) so at then end of the day if I choose to have the bilateral mastectomy I will have no nipples which she is worried I will regret. if I only do the one breast I may have enough fat on my stomach to do the flap surgery and they should be able to spare the nipple. I do not have enough fat on my stomach to do two breasts so would need to also take fat from my thighs. I have decided against this due to the scars that would be left in my thighs so if I have the bilateral mastectomy I would opt for implants. I would appreciate any input from anyone who has had a similar experience as I am at a loss what to do and only have tomorrow to decide. Specifically, if anyone has had to choose between a single or double mastectomy and has experience with nipple-sparing versus non-nipple-sparing procedures, or if anyone has had regrets about their choice, I would really value hearing your perspective. Any advice or experience would be a huge help right now. Thanks.436Views0likes13CommentsAnother 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.336Views0likes17CommentsMentally preparing for mastectomy
Hi everyone, I have just finished chemo and am having a single skin sparing mastectomy, with temporising implant, in June. Any handy hints on getting oneself mentally prepared? I am anxious, scared and all the emotions in between. Thanks in advance105Views0likes4CommentsPost 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 !!192Views0likes7CommentsUnilateral 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.42Views0likes0CommentsPost 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??252Views0likes4CommentsSecond mastectomy
20 years ago I had a tram flap reconstruction after a mastectomy on one breast. Since then I found I was BRCA2 and in the last week I have been diagnosed with cancer in my other breast. I am interested to hear the stories of anyone that had a reconstruction on one side and then had to look at getting a second mastectomy years later. Did you go the construction route or perhaps decide to get a prosthesis, or even remove the reconstructed breast and go flat? I am in my late sixties.128Views1like1CommentExtent of numbness following double mastectomy
Hi! I’ve recently been diagnosed with early stage breast cancer and require a double mastectomy. I’ve been trying to come to terms with the need for this treatment. I’m wondering if some of the lovely survivors out there would be able to tell me how it feels post mastectomy? How much of your chest is numb permanently? Does PMPS become mild long term?407Views0likes10Comments