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Topic: Hypersensitive skin/nerves after mastectomy

Forum: Surgery - Before, During, and After — Surgical options and helpful tips for recovery and side effects.

Posted on: Nov 12, 2017 07:35PM

az2017 wrote:

Hi, I am new to the forum, so I apologize if the question has been asked and answered in the past.

I had a double mastectomy 7 weeks ago (no recon) and the second week after it I started experiencing a strange kind of pain in the upper chest area and armpits. It feels like a bad sunburn being rubbed over with sandpaper. It only happens when clothes rub over it. I feel it is right along the part where the chest binder was. Surgeon said to give it a month as it will most likely go aware. 6 weeks after the pain started it hasn't gotten any better and desensitizing massage hasn't been that helpful. Unfortunately I had to go back to work last week and it has proven excruciating to wear clothes even for a couple of hours (not wearing a bra yet as the pain is worse where the bra straps meet the bra).

Doctor has now put me on nerve block medication (Gabapentin), 300 mg at night, not much difference after 3 days of taking it (and not liking the side effects so far). Has anyone experienced this side effect after their surgery (I didn't even know it was a possible side effect, the only nerve damage related issues I was warned about were pangs of pain or zingers while nerves regenerate or die and numbness in part of chest area)? If so, how long did it last? Does it ever get better or go away? Does anyone know of any non-medication remedies for it (my doc said acupuncture might help)?

Thank you in advance,

Anna

​Prophylactic BMX no recon in Sep 2017 due to ADH and strong family history
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Sep 5, 2020 06:16AM Rah2464 wrote:

Acryan, I too had this issue for several months. Literally the only thing I could tolerate for a while was the surgical garment they sent me home in. I began experimenting with different (cheap) stretchy tank tops that I purchased at wal-mart. Some days these worked for a few hours. I also purchased a compression bra online that really helped me. It was just enough compression not to irritate. The compression also worked to calm the nerve responses.

My PS had me start to desensitize the area trying manual gentle massage, a damp soft washcloth stroked over the area progressing to a dry washcloth. Organic castor oil is great to use as part of your massage as well, anti inflammatory.

I so feel for you right now, this was awful for me but it will get better. Is it possible for your PS to refer you to a lymphatic massage therapist once you are further out from your surgery? That may help as well.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 5, 2020 10:17PM WC3 wrote:

acryan:

The skin on my chest in the weeks after my bmx felt sunburned but I've heard others describe it as a sandpaper feeling. I think it's some of the nerves regenerating.
Pathologic complete response (pCR) to chemotherapy. Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 6, 2020 10:59AM acryan wrote:

Thank you for the positive words of encouragement. Since reading the posts in this thread I've been trying the gentle massaging and it does alleviate the sensation temporarily, which is better than nothing! I'm trying Aspercreme which has Linocaine in it and that too seems to be helping. Can't wait to have this gone!

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Sep 6, 2020 11:01AM acryan wrote:

Thank you for the positive words of encouragement. Since reading the posts in this thread I've been trying the gentle massaging and it does alleviate the sensation temporarily, which is better than nothing! I'm trying Aspercreme which has Linocaine in it and that too seems to be helping. I am supposed to start some sort of PT soon, I'll ask about the lymphatic massage. Can't wait to have this gone!

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Sep 6, 2020 11:02AM acryan wrote:

Yes, I believe it's the same thing. How long did it last for you? Did you do anything that made the sensation subside?

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Sep 7, 2020 11:17AM - edited Sep 7, 2020 11:20AM by abigailj

I'm so glad I found this thread - I had skin/nipple sparing BMX with immediate DIEP recon about 10 weeks ago, 2 weeks After that had follow on to remove the flaps since thankfully my skin survived. But I had some wound healing issues On part of the bikini line incision (I'm 63 and a former smoker) and an infection in one reconstructed breast so had another surgery to revise abdominal scar and clean up infection (yeah, had a drain for a week after that one) August 10. And since that surgery which stretched me tighter in the abdomen I've had that bad sunburn/ awful sensitivity feeling acrossa good portion of my abdomen.

PS prescribed 100 mg Gabapentin 3x/day - I took it for a week, didn't do much and I prefer to avoid prescription drugs. Told PS who said to “massage the area gently “ - that didn't help me much

Well I read this whole thread and what has started working for me to reduce this pain is using the needle spray and then the pulse massage setting of my handheld shower head twice daily as one sister on this thread recommended and taking magnesium and turmeric as one or two others suggested. I'll be adding a few other supplements that some reputable studies say help with neuropathy and will post results if that improves things further.

Thanks to everyone for sharing what's worked and what hasn't for them, I really appreciate it!

Ab

Dx 1/2020, ILC/IDC, Both breasts, 2cm, Stage IB, 0/4 nodes, ER+/PR+, HER2- Surgery 6/23/2020 Mastectomy: Left, Right; Reconstruction (left): DIEP flap, SIEA flap; Reconstruction (right): DIEP flap, SIEA flap
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Sep 8, 2020 05:40AM Lanne2389 wrote:

Hi acryan

I had what you describe - it's horrible! I initially relied on 1/2 an oxy until those ran out then I had to get an Rx for Gabapentin. That worked well but left me a little sleepy (I think I was taking 300mg/day). I eventually switched to Cymbalta as that helped with both nerve pain and anxiety.

I had expanders Initially - ugh. The broken glass feeling was so SO uncomfortable I changed reconstruction plans from implants to DIEP. Even after DIEP it felt like (And sometimes still feels like) I'm wearing a chest harness but the broken glass feeling is gone - that took about 14 months to slowly subside (for me).

Don't let your Dr ignore your complaints on this - it will calm down eventually but might be a month or might be many months and there are drugs that make it bearable. Don’t under report your pain. At 2 weeks post BMX, mine was definitely a 12 out of 10. You want to curtail the pain so you feel like and do get moving around - and not sitting on the couch perfectly still so your chest isn’t scritching.

Once you can wear a non-medical bra, try anything that isn't tight made of soft cotton, or try the
Bali Women's Comfort Revolution Easylite Seamless Wireless Bra (on Amazon) one size up. It is silky smooth and you can barely feel it on if it's not too tight. It's still my favorite bra

Pls don't hesitate to ask more questions - I know how miserable you're feeling.

Lanne

Lanne Dx 11/20/2016, IDC, Right, 3cm, Stage IIB, Grade 1, 3/17 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 1/3/2017 AC + T (Taxol) Surgery 6/14/2017 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 8/8/2017 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 9/15/2017 Femara (letrozole) Surgery 7/17/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Dx 3/25/2021, Right, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Targeted Therapy 4/15/2021 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Sep 12, 2021 11:06PM LW422 wrote:

Bumping this older thread because it has a lot of good information. I'm almost 3 weeks post-op and having the nerve pain on the back of my upper arm, "bag of golf balls" feeling in my armpit, extreme sensitivity and "sticky" skin feeling under arm. All of this is quite miserable and I'm doing the range-of-motion exercises for my arm. I had a single mastectomy (right) and 32 lymph nodes removed, so I expect to be miserable for a few more weeks.

If you have had any of these symptoms and treatment helped, please share what worked for you.

Dx 1/20/2021, IDC/IBC, Right, <1cm, Stage IIIC, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/8/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right
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Sep 13, 2021 12:54PM Ann47 wrote:

Hi, LW422,


The only thing that improved my hyper sensitivity was the Gabapentin after about a month of use. Word of caution, it has some side effects that may not be easy to deal with so hopefully your doctor starts with low dose. I had a foggy brain and memory problems while on the initial high dose (where I couldn’t remember why I went to a store). I asked the doctor to decrease the dosage and did relatively ok with 100 mg per day.


Also, if you do decide to go that route, don’t stop it cold turkey as it has lasting effects. Try to reduce the dosage each week until you get to 0. You’d be surprised how many doctors won’t tell you this.


I am out 4 years now and while I don’t have the initial skin sensitivity I had (where I couldn’t wear clothes at all), I still have a strange sensation that when I touch my chest skin around the incision, I feel like I have ants crawling in my armpit. It takes a while to get used to it, but considering the big picture, it is small price to pay.


I hope this helps a little and wish you a fast recovery andall the best.

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Sep 13, 2021 01:46PM - edited Sep 13, 2021 01:46PM by LW422

Thanks so much, Ann. I'm three weeks out from surgery today, so I suppose I just need to be patient and give it some time to heal. It's frustrating to have to deal with so much discomfort from our treatments, though.

I took Gabapentin in 2017 for shingles and don't remember any significant SEs from it, so I wouldn't hesitate to take it again if my doctor recommends that I do.

Dx 1/20/2021, IDC/IBC, Right, <1cm, Stage IIIC, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/8/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right
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Sep 13, 2021 03:04PM Rah2464 wrote:

LW22 I am going to second trying the gabapentin. My first surgery (direct to implant, double) i had terrible hypersensitivity. I could only tolerate the surgical garment they sent me home in. I struggled with cording, spasms, iron bra, the whole bit for a long time. I was able thru massage, acupuncture and time to get it improved but finally gave in and had all the scar tissue removed and the implants replaced this past November. The other reason I went ahead with the redo was that I had also developed a neuroma that could only be accessed if they opened things up again. Needless to say I was very anxious about it wondering if I would have a repeat of the hypersensitivity. This time, I was given Gabapentin pre op and post operatively. Made a world of difference for me. I couldn't believe how easy the recovery was.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 13, 2021 05:07PM LW422 wrote:

Thanks, Rah. Does Gabapentin actually help the "iron bra" thing or is it more for the skin sensitivity? Also, I will be starting radiation in a couple of weeks; can Gabapentin be taken during rads?

Dx 1/20/2021, IDC/IBC, Right, <1cm, Stage IIIC, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/8/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right
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Sep 14, 2021 06:36AM Rah2464 wrote:

LW for me it helped with both but I think targets the hypersensitivity more. I never had radiation so I would ask your medical team about it just to cover all the bases. I sure hope you get some relief soon. Hugs

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 14, 2021 09:05PM Bookpusher wrote:

LW,

I am 6 weeks out from BMX. I do have some sensitivity remaining, while unpleasant I can deal with it. It is the chest and underarm tightness that I am still struggling with. (Have that sticky underarm thing, too) Sometimes it’s not too bad, other times very uncomfortable and nerve-wracking. I do stretches and massages- sometimes I get relief, sometimes not. I just pray it will eventually go away.

Best of luck in getting relief. I keep researching to find something that will work for the tightness, but nothing has really solved the problem yet.

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Sep 14, 2021 09:25PM LW422 wrote:

Hey Bookpusher. I was wondering how you're doing these days. I'm hoping that we are just early in our healing process and that these SEs will resolve themselves in time. It seems to me that the tightness I'm feeling gets worse as the day progresses, so maybe it's just swelling or something. Maybe fluid...??

My biggest fear is that the tightness and sensitivity will get worse when I start radiation in a couple of weeks. :-s God, I HATE cancer so much.

Dx 1/20/2021, IDC/IBC, Right, <1cm, Stage IIIC, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/8/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right
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Sep 15, 2021 10:11PM Bookpusher wrote:

LW,

My tightness comes and goes during the day, but night time is definitely the worse. I wonder if we can do too much stretching?? I stretch every time it tightens up. I wish we had better info from our docs on this recovery process. Basically, we’re just left trying to figure it out on our own. Thank God for this site

I sure hope the radiation does not make the SE from surgery get worse. OMG, that would be awful. I hate cancer, too!! And this awful virus just complicates everything. Stay safe. It is raging here in my neck of the woods.

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Sep 16, 2021 12:16PM - edited Sep 16, 2021 12:18PM by magiclight

I've read most of the inputs and can't find any mention of the diagnostic name for what is being discussed and self-treated. Is everyone just guessing at treatment? What diagnosis do doctors give for prescribing Gabapentin?

Surgery 4/27/2015 Mastectomy: Left, Right Dx IDC, 1cm, Stage IA, Grade 1 Surgery
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Sep 16, 2021 12:31PM - edited Sep 16, 2021 12:46PM by LW422

Magiclight--gabapentin is prescribed for nerve pain. In breast surgery, there are a lot of nerves cut or disturbed, especially in the axilla (lymph nodes removed/dissected). There's really no diagnosis here; just post-surgical pain and discomfort.

If it goes on for months or years it's called "PMPS" or something like that... post mastectomy pain syndrome.

Dx 1/20/2021, IDC/IBC, Right, <1cm, Stage IIIC, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/8/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right
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Sep 16, 2021 03:39PM ARmom4 wrote:

Soo... hate to be a Debbie downer but I'm 20 months out from mastectomy, 3 months out from reconstruction. Had tightness the whole time I was flat and still have it now after recon. I also still have sensitivity and sometimes twinges of sharp pain. I wear a super soft sports bra and it helps because it keeps my clothes from rubbing against my chest and underarm/side. I suppose some people are lucky and their discomfort goes away but I wouldn't count on it.

Diagnosed age 35. ATM gene mutation.Severe reaction to Taxol and Taxotere. Just Tamoxifen now Dx 1/3/2020, DCIS/IDC, Right, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ (DUAL) Surgery 2/10/2020 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Targeted Therapy 3/26/2020 Herceptin (trastuzumab) Chemotherapy 3/26/2020 Taxol (paclitaxel) Chemotherapy 4/16/2020 Taxotere (docetaxel) Hormonal Therapy 5/28/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/30/2020 Prophylactic ovary removal Surgery 3/2/2021 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/7/2021 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 16, 2021 11:58PM Bookpusher wrote:

ARmom4,

Oh, my gosh! Have any of your docs given you any hope that the tightness will go away eventually? Have you had PT? This is so discouraging...I am 7 weeks out and was thinking it surely will let up before long. How horrible to have had it going on for 20 months!! Bless your heart

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Sep 17, 2021 04:54AM WC3 wrote:

Acryan:

I don't recall exactly how long the sunburned sensation lasted but I think a few weeks. I didn't find it intolerable though.

Pathologic complete response (pCR) to chemotherapy. Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 18, 2021 12:36PM LW422 wrote:

I'm at 3 1/2 weeks out from mastectomy and it seems that things are s-l-o-w-l-y improving. I especially notice that I feel better when I first wake up in the morning. As the day progresses, I have more tightening and sensitivity, so hopefully as tissue heals, settles, and all the fluid/swelling dissipates I will start feeling better.

ARMom--how terrible for you; I hope you are able to get some relief somehow. I didn't have reconstruction and don't plan to, so I "assume" my recovery will be easier (at least I hope so!) Of course none of this crap is "easy" so who am I kidding.


Dx 1/20/2021, IDC/IBC, Right, <1cm, Stage IIIC, Grade 3, 0/32 nodes, ER-/PR+, HER2- Chemotherapy 2/8/2021 AC + T (Taxol) Surgery 8/23/2021 Lymph node removal: Right; Mastectomy: Right

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