New here - questions about BPM & reconstruction

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LL99LL
LL99LL Member Posts: 15
edited December 2017 in Surgery - Before, During, and After

(cross-posting from Breast Reconstruction forum)

Hi everyone,

I'm new here and I'd love to learn from you all about some things I'm trying to sort out. I'm strongly considering bilateral prophylactic mastectomy (w/ either DIEP, implants or no reconstruction). This is due to family history, a recent LCIS dx, increased risk due to genetic issue/possible neurofibromatosis type 1, and wanting to be around & healthy for my toddler son. Can you share your thoughts about the following?

  • I think I'd be a candidate for nipple and skin sparing since no cancer has been identified at this point. But I've heard it also has to do w/ breast size? Any other factors to consider?
  • I've heard tissue expanders can be really painful. Are they only used for implants? Ever used for DIEP?
  • Have you asked DIEP surgeons what their failure rate is? (I think this means how often the blood vessel connections fail and some tissue dies?) What range of failure rate are you comfortable with?
  • With BPM (no cancer yet identified), is there risk of lymphedema? Are lymph nodes ever removed?
  • What are the potential long term problems resulting from BPM apart from appearance and lack of skin sensitivity? I've heard some women mention continuing pain even several years later, or long term loss in muscle strength even when abdominal muscle is not used w/ DIEP or implants…
  • Can anyone with Kaiser in the SF Bay Area let me know what facility/doctors you had for mastectomy and/or reconstruction, and how you felt about them? (We can private message if you prefer.)

Thanks so much for your help!

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  • NotVeryBrave
    NotVeryBrave Member Posts: 1,287
    edited December 2017

    With a diagnosis of LCIS, I'm not sure that you're completely prophylactic so that may have some bearing on your options and treatment.

    Most women can probably do skin and nipple sparing if the skin and nipple are not involved. The concern is for clear margins and good healing. Size is mostly a problem if you are choosing to go much larger or smaller - especially if you want to skip TE's.

    TE's are required if your skin can't be saved, in order to grow more skin. They're also necessary for larger size placements and often if radiation is going to be needed. I would expect they'd be need with DIEP for those same reasons.

    I'm not sure if they would do a SNB with LCIS. Technically it's contained and shouldn't have been able to leave the lobules. However - once the breast is removed, you can't do a SNB. Good question.

    I'm sure more people will be along to answer your questions. Good luck!


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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited December 2017
    I'll chime in.

    I did nipple/skin sparing. I was very small-breasted. And cancer not near the nipple. I think much has to do with tumor location. Not sure about breast size being an issue. Idk. PROS: Scars likely in the IMF (fold), so the breasts look pretty good, even after surgery. Your skin and nipple still there, even without tissue. If that makes sense. CON: Nipples may not be exactly where they were originally. Mine are a little to the sides now (not bad) but my PS said they cannot completely control this. I went from small to a bit larger (B cup), so the nipples adjust to the expansion.

    Tissue expanders are doable but fairly uncomfortable. I was glad to get my implants, that was for sure. 6 months in TEs. I don't know about DIEP, as I did not have that.

    I only have lack of sensitivity in some areas and occasional pings/pains (minor). No muscle issues that I have identified. Or weakness. But it's been 10 months since my surgery. This did take time.

    Good luck! Hugs to you.

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited December 2017

    I will add my 2 cents as well. They did SNB on me, as you aren't able to find the sentinel nodes later (if there is a problem) so they are typically removed if there are any questions. They may or may not recommend that to you. ANY major surgery to the chest (mx alone or with SNB) raises your risk for LE. That risk is not limited to immediately after surgery. Your risk goes up a tiny bit each year after, so you will ALWAYS need to be careful. A referral to a certified LE specialist would be important to get good education on what you should/shouldn't do and what to watch for. I had a TE, and did not find it painful at all. At the end, when it was really full (and looked a bit like a dirigible sticking off my chest) it was tight so I felt pressure, but no pain. I was not able to have anything spared, so have an implant and had my nipple reconstructed. At first I had complete numbness, ranging across my chest and extending fully under my arm (it was wicked weird to shave - although I hear now that is NOT recommended due to risk of LE). The numbness actually faded over time and I have full feeling back in the skin over my foob. I think that meeting with a PS to get their opinion on your specific case (do they want to do SNB?) will be helpful. Best of luck!

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  • Meshell5324
    Meshell5324 Member Posts: 54
    edited December 2017

    Hi, I had the skin sparing umx direct to implant over the pectoral. In this surgery my pectoral muscle was not cut. I’m small, a size B but was told that it could be done up to a C. (If needed My surgeon does TE’s over the pectoral too-that was my back up plan) I liked this option because of the quick recovery and only one surgery. It was nice to wake up with both breast there. It doesn’t feel foreign and matches well in shape and size to my non cancer breast. I had full range of arm motion and didn’t loose any arm strength. I was numb on the reconstructed side for about 2 weeks but that has gone away completely (weird sensations while nerves are reconnecting). I agree with MT women, you need to have a consult with a PS. They can give you all kinds of options. Best wishes.


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  • LL99LL
    LL99LL Member Posts: 15
    edited December 2017

    Thanks NotVeryBrave. I didn’t realize a SNB couldn’t be done after the breast is removed. I’ll definitely ask the doctor(s) about that.

    EastCoastTS - That’s good to know that the scars can be in the fold below the breast with nipple and skin-sparing. That would be nice, especially since scars on my skin don’t seem to fade well. Thanks for the heads up about nipple location. I’m glad you’re past the TE phase, your strength is good and the pain is not too bad.

    MTwoman, I didn’t realize LE could happen with any surgery in the chest area, and that the risk continues over the years. I’ll definitely ask about an LE specialist referral. What type of provider is that, maybe a physical therapist? I’m glad the TE’s were not painful for you and that you got feeling back with time.

    Meshell5324, Thanks for sharing your experience. It does sound good to have it all done with one surgery with quicker, less complicated recovery. So great that your strength, range of motion and skin sensitivity are good.

    Thanks everyone for being here for support!

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  • acesmith
    acesmith Member Posts: 11
    edited December 2017

    hello! I actually just underwent a BPM with recon this past Monday. I also have no identified cancer although it does run in my family and I am BRCA1+. All tests, imaging and screening were done prior and everything came back clear.

    I did nipple and skin sparring, they said I was a great candidate because I was not yet diagnosed. I did straight to implant. I think it help also that I was not going very big for recon. I am very flat chested and have a tiny frame, I'm only 5' and went to a B. I personally decided this one was the one I wanted to do (after given the options) because I wanted to be one and done ( of course I know things can go wrong and would take any precaution I would need if necessary) I personally didn't want to go through expanders or extra recovery for the flap.


    I wish I could help more about long term however its only been a week for me. best of luck!

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  • LL99LL
    LL99LL Member Posts: 15
    edited December 2017

    Hi acesmith,

    Thanks for your message, especially so soon after your surgery. I’m wondering since your mastectomy was prophylactic and you didn’t have any cancer present, did they do a sentinel node biopsy or remove any lymph nodes? Did they let you know whether you’re at risk for lymphedema? I’ll talk to the surgeon about that but just trying to gather more info in the meantime.

    I’m glad your surgery is all done and I’m sending good wishes for a smooth recovery.

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