When to expect any sensation after Mastectomy?

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travelgal6979
travelgal6979 Member Posts: 160

Hi.  I had a bi-lateral mastectomy on Feb 3.  I knew when I had the surgery that loss of sensation was part of the surgery and actually didn't expect to get any sensation back ever.  I was just told by a doctor yesterday (not a breast surgeon or plastic surgeon) that some feeling/sensation may return after time.  She said that it may take a long time because nerves are slow to regenerate.  My question:  is this true and has anyone experienced a return of feeling/sensation in their breast area?  If so, how long was it?  Thank you.

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  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited March 2010

    I had my bilat surgery with implants done June 2007, as of now I have very little sensation in the  center of my breast. Although when I was 11 I had major spine surgery and my back was numb for several years (feeling the same as my boobs now), gradually I did regain the sensation in my back where I could feel when something touched my back rather than a dull feeling when I was touched there. I don't know exactly how long it took but it was years.

    Sheila

  • badger
    badger Member Posts: 34,614
    edited March 2010

    Hi travelgal, I had a bmx without recon on Feb. 2, the day before you.  Other than right along the mast incisions, I have full sensation in my chest.  The "zaps" of nerves growing back had been tapering off and come to think of it, they've stopped!  Couldn't tell you exactly when but it's been a week or so now.  Hope you're feeling better and better every day!  

  • ailenroc
    ailenroc Member Posts: 308
    edited March 2010

    My guess is that there is much individual variation and variation by procedure and surgeon. I was very scared that mx would leave me sensationless. I had read a lot of horror stories: that women could not even feel if they burned their post-mx reconstructed breasts. That was not the case for me; I had decent sensation in almost all areas after bilateral mx from the beginning and now, 1.5 years later I have near normal sensation in most areas; the little bit of areola that is left has original sensation. I wish I had done a nipple sparing mx - may have retained perfect sensation there. I had requested that the intercostbrachial nerve would not be cut - I don't know if that made a difference. The area that is the least sensated is the area around the SNB site and the upper interior arm has dull skin sensation.

  • Kate0574
    Kate0574 Member Posts: 120
    edited March 2010

    HEllo, I had my mast in 2007 and still no feeling, I have just a tingly feeling over the whole area, I just had my permanent inplant put in last week.... veyt excited, my dr said everyone is different when it comes to this.... I had all lymph nodes removed, I have no feeling under my arm, armpit or breast... it sucks but you do get used to it... take care!!

  • travelgal6979
    travelgal6979 Member Posts: 160
    edited March 2010

    Thanks everyone for your replies.  I have no sensation whatsoever.  I haven't had any sharp nerve pain since the surgery, "zaps", so I don't know if that means the nerves aren't regenerating.  I sure do hope that I get some feeling back. 

     Right now, it feels like my breast area has been completely shot up w/ novacaine.  Oh well, it is what it is.  I knew that this was a possiblity.  As long as I got rid of the cancer, that's all that matters. :-)

  • Beesie
    Beesie Member Posts: 12,240
    edited March 2010

    The question of whether or not sensation returns is an interesting one.  Clearly this is different for everyone.  Some women get back a lot of sensation, some get back a little, some get back none.  Personally I have quite a bit of sensitivity on the skin of my breast.  Of course, since I don't have a real breast (I have an implant instead), there is no feeling in my breast.  Or at least, no real feeling. 

    Something interesting that often isn't factored into this discussion are phantom sensations.  I've read that a high percentage (I think I've seen numbers in the range of 40% - 60%) of women who have mastectomies experience phantom sensations.  These feelings may be pleasurable or they may be painful.  I've had both.  I sometimes get sharp pains that feel like they are right inside my 'breast'.  Not pleasant at all.  When I'm cold, it often feels like my nipple is hardening.  That's definitely a phantom feeling, since I don't have a nipple (not even a reconstructed one).  I also get pleasurable sensations when my breast is stroked; I think those are a combination of real feeling (on the skin surface) and phantom sensations (within the breast).

    Whether a feeling is real or phantom can be difficult to know, since the feeling is the same in either case.

  • apple
    apple Member Posts: 7,799
    edited March 2010

    i haven't had much sensation come back.. it's been about 18 months and i do feel things here and there now.. .. like a twinge.

    it's odd isn't it?

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited March 2010

    I had some when my PS was trying to reclose my incision when my implant was exposed I has to be numbed. I could feel it and it was not a good feeling. My nerves are still regrowing as I can feel the burning from the nerves.

  • Kayleigh3483
    Kayleigh3483 Member Posts: 131
    edited March 2010

    Hi,

    I have more sensation than right after my mx (7/09) but certainly way less than before it.  I had a pedicle TRAM w/nipple/skin sparing so even some of my belly is numb.  At first it freaked me out, especially the breast -- it felt like a foreign object on my chest.  But for the most part now I am used to it.  I expect perhaps a little bit more sensation to come back, but not a significant amount. 

    I've read that it can take as long as 2 years for whatever sensation you're going to end up to return.

    HTH!

  • AStorm
    AStorm Member Posts: 1,429
    edited March 2010

    I had my bmx in June with implants in January and new headlights last week (nipples and skin graft areolas). There are staples holding the dressing to them right now so I'm happy to have no sensation there. I have more sensation on the skin that actually covers the muscle but very little sensation where it is just my thin skin over the implant.

  • jezza
    jezza Member Posts: 698
    edited March 2010

    I am 18 years out. I have implants, I would say I have about 80% feeling back when my breasts are touched but no "sexual" feelings there.....zilch! I had nodes taken under one arm and it took years to get feeling back. Could never feel deoderant going on...or hot or cold. I would say I have 90% back under my arm but as I said it took quite a few years.I didn't expect to get it back really after that time.

    I agree with other posters...we are all different but even if it has been some time...don't give up hope...it may still happen.

    jezza

  • 123meesha
    123meesha Member Posts: 16
    edited July 2017

    Hi Ailenroc - Do you still have good sensation? I am interested in the conversation you had with your surgeon regarding the nerves. Every doctor I have asked to try to spare the nerve has said that the nerves are buried in the breast tissue and can't bee seen during the surgery. I have not yet selected a surgeon and will meet with more. I am hopeful that I can find one who is willing to try to spare the nerves. Would you mind sharing the name of your doctor?

  • Artista928
    Artista928 Member Posts: 2,753
    edited July 2017

    Ailenroc hasn't been on here since Oct 2015. You could send a private message and see if she answers.

    Also as to your inquiry, there is no way to spare nerves. There are many of them and are bound to be cut because the goal whether lumpectomy or mastectomy is to remove breast tissue, all of it that needs to be removed. Some people get sensation back while others don't or are somewhere in between. I'm almost 2 years out bmx and the bottom half of both are still numb.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2017

    I can only speak for myself that any skin that lacks breast tissue under it has no sensation. I had nipple-sparing and they have no sensation either. It's one of the big losses of a BMX decision. My PS says that sometimes if you have fat grafting, that, because of stem cells, you might eventually regain a bit of sensation but you can't determine where it will be ,or if at all. He said it's rare and can take years.

    Claire in AZ

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

    I can also only speak for myself, but I have all of the feeling back in the skin of my foob and underarm, except my reconstructed nipple does not get stimulated like a real one. It took over a year and slowly, slowly came back.

  • Sunrisefish
    Sunrisefish Member Posts: 67
    edited July 2017

    Hi 123, I feel very fortunate. I had skin and nipple sparing BMX with direct anatomical implants placed over the muscle 7 weeks ago. I also had previous radiation 2 years ago. I have full feeling in both breasts. My non radiated nipple is completely normal, just a little sore. My radiated nipple is numb with partial erectile function. My surgeon is considered quite gifted with masectomy. A friend of mine who had her also has full feeling in both breasts. My surgeon does admit this is rare, but is happy to hear it. I am out of Seattle if you are close and want her name. Good luck!

  • 123meesha
    123meesha Member Posts: 16
    edited July 2017

    Thank you all for your replies to my question! I am still researching options and trying to come up with a plan for BMX and reconstruction that I feel good about, while also trying to have realistic expectations.

    I have been reading about some reconstructive surgeons using special techniques to connect nerves during flap surgeries, but from what I am hearing the results are not at all reliable. Plus, apparently I am not an ideal candidate for flap surgery.

    Sunrisefish, its great to hear you have sensation and nipple function with implants, and only 7 weeks out! That sounds amazing indeed. I understand it may be luck, but I would definitely like to get the name of your Breast surgeon. I will send you a PM. Thanks!


  • Billivincent78
    Billivincent78 Member Posts: 4
    edited July 2018

    I unfortunately have had 2 double mastectomies in the last yr and expanders in also. Idiot oncology Surgeon did Not take out the lump with the metal marker in it and some tissue. But I personally can say that overtime I have regained some sensitivity and feeling in both of my breasts. I am actually currently laid up on the couch five days out from my nipple reconstruction surgery using tissue from my inner thigh to make the Ariola and skin on my breast to make the nipple one of them feels incredibly sensitive and makes me both cringe and laugh when it gets touched the other doesn’t appear to have any feeling yet I say yet because you just don’t know. You are along for the ride. P.s. if u do the nipple reconstruction be prepared for pain in your groin and about 8 inches on both groins of stitches. You will have to learn how to go to the bathroom and sit again because it’s truly freaking pain

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