Information on reconstruction after Mastectomy please

Joanne66 Member Posts: 8
edited August 2023 in Newly diagnosed
Hello and thanks to all on this forum. I was informed on Wednesday that instead of having 2 lumpectomies on 10/2 on my Lobular cancer they will have to perform a Mastectomy as MRI showed more cancer than Ultrasound. I need to decide by Tuesday 31/1 about a reconstruction (if that’s even possible) can anyone help with their experiences please? I am a bit of an emotional wreck, 66 years old. Thank you


  • Afraser
    Afraser Member Posts: 4,388

    We can all understand what a shock it is and making decisions is the last thing you want to do right now. It’s usually possible to have some type of reconstruction long after the mastectomy, just as it’s possible to have immediate reconstruction. My surgeon preferred to wait which suited me well as I wasn’t sure (I was 67 and ultimately decided against reconstruction). Your best option for reconstruction may need an immediate decision, but maybe not. It’s important to have a discussion with your surgeon about all your options as soon as possible, so you can make an informed choice. Best wishes. 
  • Julez1958
    Julez1958 Member Posts: 1,149
    My cancer was also lobular - called the “ sneaky” breast cancer as it often doesn’t show on a mammogram and also often ends up more extensive than first thought.
    Initially my breast cancer surgeon was discussing a choice of a lumpectomy or a mastectomy but after the MRI the advice was firmly in favour of mastectomy due to the size of the tumour.
    I ended up having double mastectomy  with delayed DIEP flap surgery 8 months after my radiotherapy was finished ( most don’t have radiotherapy after a mastectomy but I was recommended it due the size of my tumour).
    I was 62 on diagnosis and asked my plastic surgeon if I was too old for reconstructive surgery and he said he had done women in their 70s and general health was just as important.
    These are difficult decisions made at a time of extreme emotional upheaval .
    If you ask to join the private group on here “ Choosing Breast Reconstruction “ there are lots of personal stories and photos I found very helpful in coming to my decision.
    I talked to my GP, breast care nurse and also was lucky enough to have a friend who knew some one who had recently had a double mastectomy with DIEP flap surgery and I was able to tell with her which was extremely helpful.
    I am happy with my decision but many women choose to go flat as well and that’s fine too - these are very personal decisions.
    I had always been big breasted so the idea of going flat was a bridge too far for me but with my age I did go through a lot of anxiousness in coming to my decision.
    Also  double  mastectomy versus single is also a big decision not for everybody .
    Take care .
    If you add your location yo your profile others may be able to give more targeted advice.
    I am in Sydney and had my operations at St Vincent’s Private.
  • Julez1958
    Julez1958 Member Posts: 1,149
    Sorry I meant to say I had skin soaring mastectomy with insertion of tissue expanders to “ hold the space” for later reconstruction - so you do need to have the conversation with your surgeon about keeping your options open.
  • Abbydog
    Abbydog Member Posts: 482
    My BC story is covered by my profile.
    My breast reconstruction story is on 'Choosing Breast Reconstruction' Group, here online.
    I've included photos on that story.
    I think the big factors influencing your choices are age, body shape and most important is if Radiotherapy is planned. Also if Autologous or implants are a choice for you to make.
    My reconstruction was delayed. I was just happy to get my cancer out ASAP. I was Stage 2, Grade 3.
    I was not offered reconstruction advice at time of diagnosis, which was probably appropriate at that time.
    I have no regrets. 
  • Rowey
    Rowey Member Posts: 37
    Hi @Joanne66.
    I too was diagnosed with lobular cancer and needed a mastectomy due to the size and position of the tumour. I am 65. My surgeon asked me about my thoughts on reconstruction at my first visit and referred me to a plastic surgeon at the same time. After discussions with the surgeons and my wonderful breast care nurse, I was assured that I didn’t need to make any immediate decisions. Most types of reconstruction can be done at a later date. We didn’t know if I would need radiotherapy until after the surgery ( which can affect reconstruction), so I chose the “one thing at a time approach”. My surgeon did skin saving surgery and I have now decided to have DIEP flap and am on the waiting list. I won’t need tissue expanders. I am very happy that I have done things the way I have. The best piece of advice I was given was that I didn’t have to make any immediate decisions about this next step so that took the pressure off. Perhaps you could clarify this with your treating team.
    Very best wishes.
  • Joanne66
    Joanne66 Member Posts: 8
    Just an update on diagnosis and decision, it’s not known yet if I will need radiotherapy or chemo so the advice from surgeon was SMX or DMX with prospect of reconstruction at a later date. It’s been a tough decision but having a bilateral mastectomy next Friday. Can’t deal with one breast as size D and mentally for me being flat on one side would be to hard. This was a very hard decision and I hope I can cope with going flat (budda tummy) if I can’t I do have option of reconstruction later in the year depending on pathology reports on lymph nodes etc. Could have risked immediate reconstruction with breast reduction in other side but the longer recovery and unknown risks of further treatment was too much for me. Hoping I can live with this decision and cope ok🙏🏻 Thank you to all the warriors on this site, you are amazing!
  • Abbydog
    Abbydog Member Posts: 482
    It sounds like a good decision.
    At least you have options later.
    I hated having one breast only. Mine was 18.DD
    One step at a time.
    Recover the surgery first.
    You will be fine.

  • Fufan
    Fufan Member Posts: 123
    Seems you’ve worked this through to a sensible decision.  Best wishes for your procedure. 
  • arpie
    arpie Member Posts: 7,668
    edited February 2023
    All the best for your surgery next week, @Joanne66xx

    Who knows, you might feel extremely comfortable with being flat & not take the recon option further down the line?  Have you joined the Reconstruction group yet?  I am sure there will be lots of before & after pics for you to check out - and the new 'Flat Chat' group (or whatever the name is, to be confirmed) will be started soon too - you can get the Mods to join you up, if you like.  You can then discuss any query that you may have, in total privacy .... all the pros & cons of everything!  (All the other posts are visible to the general public.) 

    Check out this post for tips on what to take to hospital, self assessment 'tick sheets' that may help afterwards, when you see your Surgeon & other team members further down the track .... and other topics you might find of interest xx

    take care xx
  • June1952
    June1952 Member Posts: 1,859
    edited February 2023
    No, not 'Flat Chat' - yet to be confirmed - 'Not Under Reconstruction'  is a suggested group name because some people don't go flat - some end up lop-sided !!
  • Haiz
    Haiz Member Posts: 15
    Hey ladies. I’m just over 2wks post bilateral delayed reconstruction with expanders (under muscle).
    I was only a B cup before the chop so don’t know if there wasn’t much skin to spare but was really quite tight and worried bout the expanders going in. My PS only put about 100mls in both on the day of surgery. Was quite lovely to see that there was a teeny mound under the massive dressing😏
    Just had my first fill a few days ago was super tight and on the strong pain killers for a couple days but seems to be settling. Go back in on Monday for the next fill which will take me up to 350cc. The expander size is 350cc but the nurse told me they can actually overfill them, depending on how much I can tolerate😵‍💫. I’m thinking this might be the last one. My Left side seems to be sitting up higher than the right and looks bit bigger. This was the side that had the cancer so not sure if that has anything to do with it. 
    Not sure how long I’ll have to wait to do the exchange surgery. Would like to be a C cup as my final boob size. Think I’m opting for the teardrop shaped implants but wondering if anyone has advice/ recommendations on round ‘v’ teardrop shape. 
    👙 also has anyone tried the prosthetic nipples? Thought they might be quite fun to wear on the odd occasion🤗
  • Abbydog
    Abbydog Member Posts: 482
    My story is in my profile and my Reconstruction is in the group 'Choosing Reconstruction'.
    My Recon was delayed. I had Lat Dorsi And prophylactic to other breast. Both had tissue expanders and later Implants. They are under muscle. On day of first surgery the expanders had approx 130mls, and like you I was thrilled with my tiny mounds. My Plastic surgeon took 7 visits for fills to get to 460mls. That was an average of only 50mls per fill. Never had any discomfort. The size of my expanders was decided  by my surgeon, but to suit my own body/breast size. Your surgeon is filling you much faster. I could have gone larger but chose to stop at 460mls. I fill the same bra as pre cancer ie 18DD, but with a better shape. I go without a bra sometimes. At now 65 that is petty good. I was guided by my surgeon, and I think that my implants are round. I think I read somewhere that teardrop are prone to moving. Check this with your surgeon. I'm going to get nipple tattoos. I have tried the temporary tattoos, like the children's ones that they put on their arms. They last approx one week.