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All TopicsForum: High Risk for Breast Cancer → Topic: When to expect any sensation after Mastectomy?

Topic: When to expect any sensation after Mastectomy?

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Mar 24, 2010 05:55PM

travelgal6979 wrote:

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.

Diane Dx 12/3/2009, ILC, <1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Mar 25, 2010 08:47AM lvtwoqlt wrote:

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

Women are like tea bags, we don't know how strong we are until we were thrown into hot water. Eleanore Roosevelt Diagnosed ADH Feb 2005, ADH Sept 2006 Surgery 2/12/2005 Lumpectomy: Left Surgery 9/10/2006 Lumpectomy: Right Hormonal Therapy 10/12/2006 Dx 4/27/2007, DCIS, Stage 0, Grade 1, 0/7 nodes Surgery 6/1/2007 Mastectomy: Left, Right
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Mar 25, 2010 09:46PM - edited Mar 25, 2010 09:48PM by badger

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!  

6,902.5 miles walked ~ Find your calm. Move forward from this place. Dx 12/22/2009, IDC, 2cm, Stage IIB, Grade 1, 1/4 nodes, ER+/PR+, HER2-
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Mar 26, 2010 12:52AM ailenroc wrote:

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.

Oncotype score: 1; BRCA neg; bilat bc & bilat mx w recon; Dx 5/30/2008, IDC, <1cm, Stage IB, Grade 1, 0/5 nodes, ER+/PR+, HER2-
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Mar 26, 2010 01:57AM - edited Mar 26, 2010 01:58AM by Kate0574

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!!

Dx 3/9/2007, DCIS, 4cm, Stage IIB, Grade 3, 3/16 nodes, ER+/PR+, HER2-
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Mar 26, 2010 08:20AM travelgal6979 wrote:

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. :-)

Diane Dx 12/3/2009, ILC, <1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Mar 26, 2010 03:30PM Beesie wrote:

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.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Mar 26, 2010 03:33PM apple wrote:

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?

peace and love, apple - ..... Mary Magdalen Dx 4/10/2008, IDC, 5cm, Stage IV, Grade 3, 4/9 nodes, mets, ER+, HER2+
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Mar 26, 2010 03:41PM Jaimieh wrote:

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.

Dx 12/24/2008, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2+ Dx 3/25/2014, IDC, Stage I, Grade 3, ER-/PR-, HER2+
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Mar 26, 2010 07:26PM Kayleigh3843 wrote:

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!

Dx 4/27/2009, IDC, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2-
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Mar 26, 2010 07:53PM - edited Mar 26, 2010 07:54PM by AStorm

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.

Gail “Friends are like bras: close to your heart and there for support.” Unknown
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Mar 26, 2010 09:06PM jezza wrote:

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

bi-lat mastectomies (one prophylactic) saline implants no chemo, no rads 21 years NED Dx 1/1992, IDC, <1cm, Stage I, Grade 3
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Jul 6, 2017 12:14AM 123meesha wrote:

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?

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Jul 6, 2017 12:31AM - edited Jul 6, 2017 12:41AM by Artista928

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.

Dx'd at 50. Doing it all, all by myself. Stopped Letrozole after 5 weeks. Debilitating se's. Back on Tamox now. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole) Hormonal Therapy 3/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/1/2017 Reconstruction (right): Fat grafting, Silicone implant
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Jul 6, 2017 09:19AM claireinaz wrote:

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

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Jul 6, 2017 11:31AM MTwoman wrote:

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.

Dx 12/10/2002, DCIS, Right, 1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- Surgery 12/19/2002 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 12/23/2003 Reconstruction (right): Nipple reconstruction Surgery Reconstruction (right): Saline implant Surgery Reconstruction (right): Tissue expander placement Surgery Mastectomy: Right
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Jul 6, 2017 08:29PM Sunrisefish wrote:

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!

Dx 10/2014, IDC, Right, 2cm, Stage IIB, Grade 2, 0/4 nodes, ER+, HER2- Dx 3/2017, IDC, Right, <1cm, Stage IA, Grade 2, ER+, HER2- Surgery 5/16/2017 Mastectomy: Left; Reconstruction (left): Silicone implant Surgery 5/16/2017 Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy: Right; Lymph node removal: Sentinel
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Jul 7, 2017 09:15PM 123meesha wrote:

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!


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