Reconstruction Fail--Need Advice About Prosthetics

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dono7392
dono7392 Member Posts: 28
edited July 2020 in Breast Reconstruction

I had a bilateral mastectomy with immediate tissue expanders--on one side, the skin failed and the expander need to be removed urgently. I can't put in an implant on that side and I am not interested in a flap procedure, so I plan to go flat on that side and wear a prosthetic. For the opposite side, I don't know whether to go ahead with the implant exchange or just have that expander removed too, and go flat on both sides. One person told me it is easier to wear a prosthetic bra if there is one breast. I would appreciate any input on whether, from a prosthetic perspective, does it make more sense to go flat on both sides or try to keep one in place with an implant? Any advice would be appreciated!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited May 2020

    dono - I lost an expander after BMX and it was out during the six months of chemo, while the other side remained in place with a surgical fill amount, I believe 200ccs. It was relatively easy to camouflage with extra padding or one of those "chicken cutlet" boosters you can get at a department store because the side with the remaining expander was small. After a new expander placement, fills, and exchange, I had implants that were considerably larger. At the two year point I had a surgery to fix the allograft material that resulted in several more surgeries for skin repair and ultimately lost the implant on the same side as the previous issues. It was out for 18 months. So, I had a 650cc implant on one side and was flat on the other. This presented problems in finding a prosthetic for several reasons. Prosthetics are made to mimic a "natural" breast, not an implant. It was hard to find one that made me look symmetrical, the best result was achieved by either wearing a mastectomy bra with substantial structure (not that comfy or cool in summer heat) or with a Knitted Knocker. Knitted Knockers allow you to adjust the puffy filling yourself and I could put more in the upper pole area so it matched the implant shape more closely. The problem with this arrangement was that the Knitted Knocker was essentially weightless and the implant side felt heavy, so I always had that awareness - or imbalanced feeling, so to speak. I think the recommendation about having one side intact making it easier to wear a bra may have to do with holding the bra in place - some people have trouble keeping the bra in place without a breast anchoring it, they can ride up depending on your anatomy. It might be a good idea to go talk to a mastectomy fitter and get some perspective from someone who does this day in and day out. If you go with one reconstructed side I would say it might be easier with a smaller implant, if that is appropriate for your body type, as trying to match a larger one means you need a larger prosthetic - they can be heavy, make you feel overly warm in hot weather, etc. I did eventually reconstruct again, and did it bi-laterally as I downsized to implants that were more appropriately sized for my frame, 435ccs. This is just my experience, others may hopefully chime in with a better one-sided situation than I had. Wishing you the best - I know this is a difficult decision!

  • dono7392
    dono7392 Member Posts: 28
    edited May 2020

    SpecialK, Thank you so much for this. I thought at this time I would be exchanging for implants and done with my surgery...so this is quite a shock, and I never thought through my options for an outcome like this. Your insight is such a help! Still not sure what I’ll do but I’m just so weary of this entire process already. (My expanders are pretty small at 280cc.)

  • OnTarget
    OnTarget Member Posts: 447
    edited May 2020

    Not really the same, but I lost one of my implants to infection.

    I have a 600cc on the left, and I'm sort of flat on the right. I still have a capsule, so I have a bumpy ridge and a central divot on the right.

    With the COVID situation, I don't go out as much, but I've been to the store, seen my friends, seen my neighbors, and been on a ton of work Zooms. I haven't even tried my knitted knocker yet.

    I walk around half flat and I totally forget I am missing 1 boob. I can't feel the difference and it is a non-issue for me.

  • allyncics
    allyncics Member Posts: 4
    edited June 2020

    Hi,

    I had a TRAM which I regret. If I had a choice to do the reconstruction again I would have done the flap. But I was in my early 30’s having reconstruction. Now I would choose neither. Though if I had to choose I go with one flap & a prosthetic. Get them to correct what needs to be done then prosthetic. There should be a place where you live or another town where you can get a mastectomy bra along with A prosthetic. The bra is not your typical bro you would normally wear if you had breasts but it worked out fine for me. I had the tram done I regret it due to the fact that I was never explained all the downfalls. After my tram which I did not finish the complete reconstruction process. I got a

  • ChiCat25
    ChiCat25 Member Posts: 10
    edited June 2020

    OnTarget you’re just the person I’m looking for! I too had my implant removed due to infection, and I’m wondering what to do next. Are you content with leaving your capsule empty? I know I do not want another implant and I’m thinking a flap surgery is more than I want to undertake too. My biggest concern is the radiated skin and the higher risk of infection. Do you know if FG is an option or do you have to have an implant in and then they just do filling? I’ve delayed on going to PS appointments due to COVID.

    I’d appreciate your thoughts/advice. Thank


  • startingchemo
    startingchemo Member Posts: 10
    edited July 2020

    Hi ladies -- I likely will have to have my left implant removed tomorrow because my previously radiated skin is not doing well plus my current chemo is not helping. Once it is removed, I'll have to figure out a prosthetic for the left breast. Is there a good website to make a purchase? I'm kind of devastated because the last thing I thought of during chemo was that my implant would be removed.

  • Sunshine99
    Sunshine99 Member Posts: 1,680
    edited July 2020

    Hi starting... I'm so sorry your reconstruction failed. I'm flat on one side, size A/B on the other. I never liked the silicone/molded prostheses. They were hot and uncomfortable. I found that an insert from JoAnn's Fabrics was quite comfortable. There is also an organization called Knitted Knockers. They distribute breast prostheses at no cost. They're super light weight and very soft against the skin. I believe they have sizes up to a G cup. If you go to www.knittedknockers.org you can take a look at their organization. If you are a knitter, you can also download the pattern for a knitted knocker and make one yourself. I've made a few.

    I wish you the best with your surgery and treatment.

  • startingchemo
    startingchemo Member Posts: 10
    edited July 2020

    SunShine99: Thank you so much for the advice. What type of insert should I get at JoAnn's Fabrics?

  • dono7392
    dono7392 Member Posts: 28
    edited July 2020

    Startingchemo: I would also check out Busted Tank online. Their bras/inserts are comfy and lightweight and, in my case, the shape matched my remaining implant well. Athleta has some comfortable inserts that I use in the Busted Tank bras. I am very sorry you have to go through this.

  • Sunshine99
    Sunshine99 Member Posts: 1,680
    edited July 2020

    Starting chemo, here is a photo of mine. The photo doesn’t show it well, but it’s kind of bulged on the bottom.

    image

  • startingchemo
    startingchemo Member Posts: 10
    edited July 2020

    Dono7392 and Sunshine 99 -- Thank you so much. The implant was removed last week and it was a very unpleasant experience. I'm still in shock this happened to me. I think it could have been avoided, which is unfortunate.

  • OnTarget
    OnTarget Member Posts: 447
    edited July 2020

    ChiCat,

    Sorry, I didn't see your question back in June!

    I very much want to have my implant replaced, but I'm not sweating it being gone for now. I don't mind the half flat approach short term, but I am going to exercise all of my options to have it replaced.

    I would even do a flap if for some reason it was not fixable, but the doctor says he doesn't expect to have any trouble on the replacement.

    I'm planning to have a new TE put in this fall (after I enjoy the heck out of the summer)!

    There are some docs who will do FG only, but I'm not sure if they do it on radiated breasts or not. I saw some pics that looked ok some that were very unappealing to me. My doc said that he felt that it would be hard to maintain the shape with FG alone.

    @StartingChemo- I'm really sorry that you lost your implant. It is awful when you think everything will be ok, and then it isn't.

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