Hi everyone from Halla, my story so far

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  • FLClover
    FLClover Member Posts: 1,536
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    @Halla they are supposed to be the same in terms of survival. I was also going to get lumpectomies, but surgeon changed his mind cos off all the changes. He said it wouldn’t be worth it as too much tissue would have to be taken out anyway. Im fine with having had the mastectomies. I had expanders inserted for later recon with implants. Usually if you have a mast you won’t need radiation. But do talk to your surgeon about it and ask what he/she thinks. I’m surprised so much was picked up in only a lumpectomy. But clear margins means they’re happy with what they got. They don’t suspect more is in there. But that could be just that quadrant. Did you do an MRI?
  • Halla
    Halla Member Posts: 185
    edited April 2021
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    Yes I had an mri before the surgery. But I don’t think it picked up the DCISs or two out of five of the lumps.  I think they were all quite close and on top of each other. According to the MRI my right breast was OK. How long was your recovery after the mastectomies? @FLClover
  • FLClover
    FLClover Member Posts: 1,536
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    @Halla so it didn’t pick up any of the DCISs at all?? Cos that would be a bit concerning. It doesn’t mean your right breast isn’t clear, but just monitor it. 
    It didn’t take me long to recover. I didn’t really need painkillers about 3-4 days post surgery, and once the drains were out I could move about more freely. I did all the exercises the physio in the hospital gave me, and I walked a lot every day. The expanders felt tight for about 6 weeks, then after that I couldn’t really feel them. But i was able to move my arms properly after about 3 weeks. Tbh I didn’t have any problems and didn’t feel like my recovery took long. 
  • Halla
    Halla Member Posts: 185
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    Wow, that sounds pretty good,  i still need painkillers from my lumpectomy 8 days ago! So if you work, how long did you need to take off?

    No I don’t think the DCIS were picked up with the MRI. They were never mentioned anyway. I had a biopsy pre surgery when they put in the clips and took tissue samples, but they identified 2 tumours only. From the MRI they thought there was one more, but they couldn’t see it with the ultrasound to put clips in it.  The surgeon still got it out though, with a bit of luck and guesswork. 
  • FLClover
    FLClover Member Posts: 1,536
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    @Halla maybe I have a higher pain tolerance than I think 🤔...🤷🏼‍♀️. I don’t like taking too many pills though, so only took Panadol if I really needed it, mostly at night cos I could feel it more and so i could sleep better. I still have more than half a packet of Endone left. 
    So lucky your surgeon found them all and got them out! 👌🏻👌🏻  Thankfully you’ve got yourself a good one 😀
  • Newymum
    Newymum Member Posts: 5 New Member
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    Hi @Halla
    just wondering how you went with your decision? 
    I have had two lumpectomies and am considering a mastectomy. I had one small 0.8mm tumor and a 6cm of DCIS in my left boob. Right boob is clear currently. 

    It’s all such a whirlwind!!
  • Halla
    Halla Member Posts: 185
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    @Newymum - I know , such a whirlwind!! And until yesterday I felt quite set adrift not knowing who to ask what. But yesterday I saw the nurse and she suggested I make another appointment with surgeon, so I will see her on Friday.

    I had 5 tumours over 3 different locations in the same quadrant of my left breast, 25mm max, and 9 patches of DCIS, max 4.2mm, right breast clear in mri.  The sheer number worries me, so the surgeon suggested genetic testing to help me make a decision. I spoke to the genetics people today and that takes about 3 weeks. 

    I don’t really want a mastectomy, because it may not come back, and if it does I can have more surgery then. But I am worried there are other cancers in there they can’t see from the outside. Have you talked it over with your surgeon? What do they say?
  • Newymum
    Newymum Member Posts: 5 New Member
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    @Halla yes going back tomorrow to chat to basically everyone! Just want everything on the table.... I really want to avoid future surgery, would rather get it all sorted now. But understand that isn’t always the best way. 

    Did you need a referral for the genetic testing?
  • Halla
    Halla Member Posts: 185
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    I had a referral from the surgeon but I’m not sure whether you need one.