Note: this is all behind me now and I feel great. I had four surgeries in the end, the last being a mastectomy. Recovery was pretty easy and I now have my external prosthesis, and noone would even know! 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.

This is the conundrum of Breast cancer. We might be diagnosed with DCIS and or IDC, but each of us will be different and we listen and try to absorb the information that is given to us at our appointments and reviews and decide ...what next. Each day is a different adventure or trial, it is great to be able to share, but this, too, brings confusion when advice is contra your surgeon's.On our "bad" days, we look back at "what was", was something missed etc. Still being here, albeit minus a 14DD left boob, I am getting ready for fitting for prosthesis and new bras. I never contemplated a double mastectomy as it wasn't warranted after all clear contrast MRI and no lymph gland involvement. I will be more aware as there is no guarantee that I won't get a recurrence or a new cancer, these are part of the disease. I will continue with my Letrozole, despite the unpleasant side effects and the worsening of my fibromyalgia symptoms. I will seek treatment for the pain and stiffness.I was delighted to listen to a segment on ABC National's Health Report, where fibromyalgia was a topic discussed, with research finding neural involvement and certain genes in play. At nearly 80, I possibly won't be around for a cure/ specific treatment to be developed, but, at last, it is getting due recognition. I wiĺl try to keep calm and carry on.

Hello, Thanks for your message. I hope you continue to recover well and have no issues. I am all set for my mastectomy next week. No regrets, we tried everything to save the boob 😁

Hi Bren. It went well and I feel great. Not much pain after the surgery, as they put pain blockers in. The drain was a nuisance, but didn’t hurt. They give you a fabric bag to carry it around in, but I had made my own to use, as a cross body bag. I was in hospital for five nights, couldn’t go home until the drain was reducing less than 50 mils in a 24 hour period. I believe that public hospitals will often send you home with the drain in, and a nurse comes to visit your own, but I was in a private hospital. They were happy for me to stay there. I was very well looked after, the food was amazing, but I was ready to come home after those five nights. I wasn’t allowed to have a shower while the drain was in, just had to have a wash each day, and after about four days, my hair was disgusting, so they gave me this shower cap thing, that you just put over your hair and massage it through for a couple of minutes and then take it off. Towel dry and style your hair. They’re actually designed for people that are bedridden, to be able to wash their hair without water.So keep that in mind if you have the same situation, or just throw some dry shampoo into your toiletries bag.I had a little bit more pain after the first couple of days, but it was really nothing to worry about. I’m two weeks out tomorrow, and I don’t feel that I’m very limited in doing things. I have been tired most afternoons and have had a lie down or a sleep a few times. I’ve felt really good since I came home, I was given a little sort of horseshoe shape cushion in the hospital, and that’s been really, really good to help me sleep at night. I’ve only been taking a couple of Panadol maybe twice a day. And the pain is really nothing to worry about.My scar looks pretty good, it was covered by dressings for the first week and now I still have Steri-Strips on, although they are falling off, a couple every day now.Ive been walking most days, just 15-20 minutes, but I feel that’s enough for me right now.I see my surgeon tomorrow for a wound check, as she didn’t want to remove the dressing last week because it was still fully intact, and had just been changed the day before at the hospital when they removed the drain (which didn’t hurt).I don’t have any emotional or psychological issues looking at my scar, I didn’t have large breasts, but the left one does look a bit weird there on its own.The Breast Care Nurse at the hospital gave me a soft prosthetic to use in my bra for the meantime, until I can be fitted for a proper prothesis, which can’t happen for about six weeks.When I’m at home, I’m not bothering with putting that in my bra but when I go out, I do, and no one would ever know. Best of luck for your surgery. Mine was DCIS as well, and I had low-grade, immediate grade and high grade. Luckily, after my fourth surgery, (the mastectomy), they got clearances, and my surgeon is confident that there is no more disease, and I don’t need to have any further treatment.So I’m actually very lucky.I don’t have an issue staying flat. Perhaps if I was young, and single, then I would have a reconstruction, but I’m quite happy the way I am.My husband‘s also been very very supportive. Before I had it done, I thought I would be hiding myself from him when I came home, wearing T-shirts to bed or whatever, but I’m really not, and I’m quite open about showing him my scar and letting him touch it if he wants to, (not in a sexual way ha ha)!Best if luck … you’ve got this!!

Hello Swisha I am sorry to hear what you are going through but will share my story in the hope that it helps. Please know that these decisions don't come easy and you are allowed to take some time to think about what's best for you. In July 2025 I noticed a part of my breast had hardened (no lump), after an ultrasound scan I was told that every thing was fine and what I was feeling was ' normal fibroglanduar tissue". I went back for a review again in dec 2025 as symptoms were getting increasingly worse. My GP then sent me for an Urgent ultrasound. I left for my holidays a few days after my ultrasound. On holiday I received a 'NON- Urgent' message from the clinic to discuss my results. I assumed that since the message was non- urgent id finish my international holiday and then go visit the clinic. On visiting the clinic post holiday I was shocked to find that the ultrasound results actually suspected malignancy and had requested a biopsy and mammogram. Surprisingly my GP still insisted that a biopsy would be too invasive and referred me for another ultrasound and mammogram. Those results also indicated I needed to have a biopsy and an MRI and my GP was still not too keen for me to have a biopsy. I had to push to get a referral for a biopsy. This was in feb 2026.Long story short 7 months post me discovering the hardness in my breast - stage 3 Inflammatory breast cancer, which had spread to the nodes by the time biopsy was done.I was not given a choice of anything but mastectomy for my Lbreast. I am however large breasted (D Cup) so having one taken out with the other in would just be too lop sided for me. I considered a lot of factors, e.g. alignment of my shoulders, neck and spine, back/shoulder pain due to being lop sided, constant need to wear a prosthesis and of course the fear of reoccurrence. I was also told that immediate reconstruction would not be an option for me for medical reasons, but could be something I possibly could consider down the line.I decided on a double mastectomy and while it's a huge adjustment, I am slowly getting to be at peace with my self. I got operated a few days back and am now recovering at home :) it's weird being without boobs as it normally would be without something you are used to having with you for a long time. There have been lots of tears but I am still healing. I have had my amazing nurses direct me to some amazing people who offer bras and prosthetics so i'm looking forward to getting fitted once the bandages are off and i'm well enough to do so.I will still have to do radiation just purely because of the fact that there was nodal involvement and considering my cancer type. I am a mum with two small humans and an amazing husband, and what matters is I get to spend the rest of my life with them creating happy moments. I hope you find peace with the decision you make.

swisha I am so sorry you have to go through this experience 😞...it's a lot to process and can be very confronting. I have a similar story having had a DCIS diagnosis last October. I had Lumpectomy surgery on left breast which unfortunately didn't receive clear margins. My 2nd surgery pathology results identified disease anterior in my nipple so I had to go for round 3 of surgery to remove the nipple. Happy to say the final pathology came back all clear 🙂 and after 15 rounds of radiation I feel my breast looks and feels amazing for the 3 surgeries she endured. The 3rd round of surgery I really felt - it seemed to knock me around more than the prior 2. I had them in quick succession so assume the anaesthetic had an accumulative effect. At the beginning of my diagnosis I was all about a mastectomy and was extremely confused...totally normal. Whatever you choose, it is the right decision for you....trust in that 💕

Another Re-Excision or Mastectomy?

26 Replies

motton
Member
4 months ago
swisha I am so sorry you have to go through this experience 😞...it's a lot to process and can be very confronting. I have a similar story having had a DCIS diagnosis last October. I had Lumpectomy surgery on left breast which unfortunately didn't receive clear margins. My 2nd surgery pathology results identified disease anterior in my nipple so I had to go for round 3 of surgery to remove the nipple. Happy to say the final pathology came back all clear 🙂 and after 15 rounds of radiation I feel my breast looks and feels amazing for the 3 surgeries she endured. The 3rd round of surgery I really felt - it seemed to knock me around more than the prior 2. I had them in quick succession so assume the anaesthetic had an accumulative effect. At the beginning of my diagnosis I was all about a mastectomy and was extremely confused...totally normal. Whatever you choose, it is the right decision for you....trust in that 💕
- swisha
  Member
  4 months ago
  Hello, Thanks for your message. I hope you continue to recover well and have no issues. I am all set for my mastectomy next week. No regrets, we tried everything to save the boob 😁
  - motton
    Member
    4 months ago
    swisha sending you healing love for your journey ahead. You've absolutely got this!
arpie
Member
4 months ago
So sorry you are going thru this added stress & further surgery swisha You've been thru a lot already. I was lucky & only needed the original surgery.

It is a difficult decision to make and I do not envy you having to make it. There is a possibility of more disease being discovered in another excision, as the lesions appear to be 'long' instead of 'round' (given the latest lack of clearance.) ... Is your breast 'large enough' to have another bit taken out (without the need for building up again?)

How comfortable are you with the thought of having a mastectomy? When I was first diagnosed, I was happy to go the whole way, if the surgeon deemed it necessary. Luckily, that wasn't the case.

Maybe give our helpline a call for a confidential chat? Just talking it out with someone else might help with your decision making xx 1800 500 258

Take care & all the best
- swisha
  Member
  4 months ago
  Thank you arpie, for your reply. I'm leaning towards the mastectomy and am not even worried about having a reconstruction at this stage, if ever. I'm not large breasted, and so far the two surgeries have not made much difference to my breast. The surgeon did say that she would need to take a bit more tissue this time, and it will definitely make a difference, so I would probably need some sort of prosthetic afterwards. I didn't think about the helpline, I will give them a call. Thanks again.
  - arpie
    Member
    4 months ago
    To be totally honest, swisha - I'd be leaning towards mastectomy as well. Sadly, that 'puppy' isn't doing you any favours right now xx
    
    Also, Consider joining the following Private Groups (where you'll be able to chat in private with those who've gone before you xx):
    
    Flatchat Group (those who do not have reconstruction):
    
    https://onlinenetwork.bcna.org.au/group/flat-chat-no-breast-reconstruction
    
    Choosing Breast Reconstruction group (who DO have reconstruction) .....
    
    Group: Choosing breast reconstruction | BCNA Online Network
    
    Take care & all the best xx

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Another Re-Excision or Mastectomy?

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