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Topic: Phantom Itching 2 years post reconstruction

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

Posted on: Dec 4, 2013 12:46PM

myhazeleyes wrote:

I still have horrible phantom itching. I was so hoping that was going to go away by now. Does anyone else have this same problem this long after the reconstruction surgery. Do you know some ways to relieve the itching, I've tried so many things from creams to ice packs, nothing seems to help.

Dx 6/15/2011, Stage 0, Grade 1 Surgery 10/8/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Dec 4, 2013 01:03PM Beesie wrote:

Yup, I had the same problem. I'm 8 years out now and still get the itching, but it's much less frequent these days. For me it continued pretty bad for probably around 5 years or maybe 6.

Sorry, no suggestions on what to do. I would try just gently rubbing the itchy area and sometimes that would help a bit (or take my mind to the rubbing rather than the itching) but something there was nothing that help at all. Nothing worse than when it would wake up me and keep me up in the middle of the night!

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Dec 4, 2013 02:39PM myhazeleyes wrote:

Bessie, what about the feeling of having a heavy breast plate. Will that ever get better. It's like a constant awareness that there is something heavy on my chest. I'm trying not to regret having the reconstruction, but it is hard sometimes wondering if I made the right choice for myself. I keep telling myself you know it is worth it!

Dx 6/15/2011, Stage 0, Grade 1 Surgery 10/8/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Dec 4, 2013 02:49PM Tomboy wrote:

I only had lumpectomy. But the itching drives me crazy, and it is not phantom. it is real. the only thing that helps is lying down and rubbing. And pain pills, which i still do take for other pains, but i notice it lowers the itching level too, which ibuprofen or anything else does not. i thought it was LE in my breast. but i just saw LE therapist this week and she said it is free fluid causing it, in her opinion. my seroma there has never resolved. i got it drained once over a year ago but it is increasing and really driving me nuts. i am supposed to see my bitch ass surgeon (nother story) in january, when i will probably not be able to convince her to aspirate fluid. because it can introduce bacteria into what is a sterile environment. I dont know if that is what is happening to you though. i am so sorry as it is no fun. All i know is if i ever have to do BMX, i will NOT do recon.

"I will sit right down, waiting for the gift of sound & vision" David Bowie, Rest in pax, my beloved changeling... Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+
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Dec 4, 2013 03:23PM Catie2013 wrote:

I had my last surgery on 7/11 and couldn't take the horrible itching I had behind my shoulder blade, did a google search and saw someone say that citric acid caused their itching post mx years later. Not sure if Dr. Google has it correct or not, but I cut down my Vitamin C (was taking 3 a day ) and the itching went away. Now I take 1 and separate from my multi vitamins - so maybe something to it? Or maybe was going to go away anyway - but that itching is horrific!!!! I too took either an ibuprofen or Tylenol thinking the itching is a pain response, but that only worked for a short period of time until I cut back the citric acid. Just a thought.

Don't worry about tomorrow, God's already there! Catie Dx 11/6/1994, IDC, Right, 2cm, Stage IIIA, Grade 3, 0/17 nodes, ER-/PR- Chemotherapy 12/28/1994 CMF Radiation Therapy 3/1/1995 Breast Dx 2/28/2012, DCIS, Left, <1cm, Stage 0, 0/2 nodes, ER-/PR-, HER2+
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Dec 4, 2013 03:34PM Beesie wrote:

Some itching after surgery is real - itching can happen when nerves regenerate - but phantom itching is different. It feels just the same and it feels just as real, but there is no physical cause for it. And that's why it's virtually impossible to get rid of.

myhazeleyes, I don't have that heavy breast plate feeling so I can't offer advice about that. What I get are muscle aches (or breast aches, since the muscle is over my implant) when I do something unusual with my pec muscle. And sometimes I just get these weird unnatural sensations. Let's face it - there's nothing natural about an implant reconstructed breast so it's not strange that it sometimes feels unnatural. Some women are spared and have few of these feelings/problems while other women experience problems or side effects for years. Until you have your surgery, there is no way to know what your experience will be.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Dec 4, 2013 04:15PM myhazeleyes wrote:

Catie, I will try limiting my vitamin C and see if that helps. Bessie, I also get the muscle aches, It seems to help when I massage that area and it does subside. It just takes a while for the itching to stop. Doctor said it was also normal and recommended using benadryl, but it makes me so sleepy....I'm such a medicine wussy! It does help knowing I'm not the only one going through these crazy things. Thanks ladies!

Dx 6/15/2011, Stage 0, Grade 1 Surgery 10/8/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 4, 2014 12:43AM donaldtrump369 wrote:

Sometimes the cause of itch is stress, anxiety, nervousness. So if you have such problem then make it cure.

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Feb 4, 2014 01:11AM Ariom wrote:

I have phantom itching fairly regularly, and I didn't reconstruct. My Surgeon told me it would diminish in the first year, and it probably has, but I still have it.

I find if I scratch my shoulder or arm while it is happening somewhere in my chest, it seems to calm it down. I think it may just be a distraction, but whatever works, is good for me!

Dx Mondors Disease (cording) after Umx and "Dog Ear" removed 14 months post UMx .................. The Dx shuffles you like a deck of cards and then deals you a new hand! Dx 11/2012, DCIS, 1cm, Stage 0, Grade 3, 0/1 nodes Surgery 12/18/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right
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Feb 4, 2014 04:58PM DocBabs wrote:

I'm almost 4 years out from my BMX with reconstruction and every now and then I'll have a bout of itching that no amount of scratching cures. It just comes and goes.I've learned to live with it.

DocBabs Dx 4/28/2011, IDC, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 5/13/2011 Lymph node removal: Right; Mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 5/13/2011 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Hormonal Therapy 7/15/2011 Aromasin (exemestane)
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Mar 16, 2014 06:31PM 1953kd wrote:

I had a mastectomy rt side in 1998 and have done well over the years but phantom itching does come back every once in a while. It is maddening...skin numb, scratching doesn't help. I have learned to use a cortisone cream on the reconstructed breast. It helps but never completely. It just comes and goes. I do take Claritin and Singulair for allergies and I try to be really consistent in taking my allergy meds. I do have very sensitive skin and I try to do whatever I can to help my body feel relaxed and happy...the itching is hard to take at times but I feel better knowing I have done all I can to alleviate it. I am wondering if a hot shower would help the itching go away...not too hot but just stimulating. I will try it. I googled "Phantom Itching after mastectomy" and found this site. I am happy to read others thoughts and help if I can with my own experiences. God bless us all and let's keep on keeping on. xoxo

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Mar 16, 2014 08:28PM Golden01 wrote:

So glad I spotted this thread. I am a little over two years out from getting my permanent implants and developed terrible itching on Thursday that was pretty much constant for two days. Glad to know I am not alone. The pain was deep and intense. Figured out yesterday that I had a really-really stressful day on Thursday. I often feel the "stress" in my pectoral muscles much like others get tight shoulders. I consider it an "early warning" sign that I need to pay attention to how I am feeling. Thursday, I didn't have time to notice anything. I think the muscles just tightened up to the point I had spasm-like pain with intense itching. Once I figured that out yesterday, I took a couple of doses of muscle relaxants left over my surgeries and seem to be fine today. My right one feels like it had a workout yesterday. Go figure. 

Mucinous Carcinoma, Hypercellular Variant; Oncotype DX 27, Dx 7/8/2011, <1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR-, HER2- Hormonal Therapy 7/20/2014 Arimidex (anastrozole)
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May 17, 2014 12:09PM - edited May 17, 2014 12:09PM by Jesusisthekey

I had a bmx in 2011 and did not reconstruct.  I have phantom itching.  In fact, I had its so bad last night it kept me up for over an hour. I've found that the only thing that helps me, and it sounds crazy, is to lightly slap the area that is itching. Scratching it almost makes it worse but slapping it lightly somehow soothes.  I've tried everything from bristle brushes to my facial exfoliator! But the area is Numb and the only thing that breaks through the numbness is tapping it or slapping it. Sounds crazy but it works! I am now considering reconstructing and the only thing that terrifies me is that I will have the same phantom itching as really won't be able to do anything about it.

I can do all things through Christ who strengthens me!
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May 25, 2014 12:23AM Ozzygirl wrote:

This is going to sound really weird but I am 10 years out from my original mast and I too get the phantom itching. I had a lady tell me the following once. 

If you get the phantom itching on the front ie where the boob used to be or where your reconstruction is..try scratching yourself in the same spot BUT ON YOUR BACK. 

Apparently there are nerves that are involved that are severed in a mast that are connected in the back.  I know it sounds crazy but it really does work most of the time.

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May 25, 2014 08:03AM Ariom wrote:

I agree Ozzygirl! I had a Umx about 18 months ago and I still have Phantom itching, but not as often as in the beginning. I discovered that scratching my back. when it starts on the front, is the only way to relieve it too. Sometimes I will get it after a hot shower and the best way to relieve that is to use a rough towel to dry my back. 

I quizzed my Surgeon about it, soon after my surgery and he said it was all regenerating and damaged nerves, but it should disappear by the end of the first year. It is certainly better, but still there occasionally. 

Dx Mondors Disease (cording) after Umx and "Dog Ear" removed 14 months post UMx .................. The Dx shuffles you like a deck of cards and then deals you a new hand! Dx 11/2012, DCIS, 1cm, Stage 0, Grade 3, 0/1 nodes Surgery 12/18/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right
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May 25, 2014 07:53PM Wilsie2 wrote:

it had been 16 years since bilateral mastectomy with tram reconstruction, so my itching may not be realted  my midriff started itching about 6 hours ago, and nothing is helping! I took Benedryl, put Gold Bond lotion, baby powder, and Benedryl cream. Nothing is helping!  I know this is nothing serious, but I have no rash or anything visible.  I actually was surprised to see the topic in so many discussions. Just wanted to chime in, since it has been so long and never experienced this.  Wilsie

Dx 6/1/1997, DCIS, 4cm, Stage IIB, Grade 2, 11/19 nodes, ER+, HER2+ Surgery 6/17/1997 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Radiation Therapy 11/14/1997 Lymph nodes Chemotherapy 11/19/1997 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Mitomycin (mutamycin) Dx 1/4/2012, DCIS, 4cm, Stage IV, Grade 2, 11/19 nodes, mets, ER+ Chemotherapy 3/13/2012 Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy 6/30/2012 Aromasin (exemestane) Hormonal Therapy 1/20/2014 Faslodex (fulvestrant) Chemotherapy 10/7/2014 Taxol (paclitaxel) Chemotherapy 12/14/2014 Gemzar (gemcitabine)
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Jun 23, 2015 01:55PM ilovetulips wrote:

I am so glad I decided to google this subject again. The itching has happened off and on since the first surgery but this week it has been driving me crazy! I'm wondering if there isn't something to the stress connection. I had to go babysit my three grand daughters last week and even though they are great it's still stressful. I have to be mindful of rubbing, scratching etc. because I'm so itchy I'm don't think about it even in public!! Probably not what people want to see!! The back scratching sounds plausible so I'm going to give that a try. Thanks so much for sharing ladies

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Jun 23, 2015 02:53PM Mommy2Six wrote:

i didn't have reconstruction, and I'm only 6.5 out but the itching is UNBEARABLE sometimes. :(

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Aug 4, 2015 08:11PM booksfallopen wrote:

Just about 7 1/2 months past LB reconstruction & RB tuck up, and have had real itching tapering to phantom itching. Have followed doctor's instructions on desensitizing the breasts for the nerve pain, but just yesterday & today it was pounding pain & itching on the reconstructed side & constant itching on the other breast. I had a few low dose hydrocodone pills left from surgery so I took one with Benadryl & used an ice pack all night. The intensity is about the same today, so I tried the same dosage mid-day. Late day & things seem to have improved a little. I can only empathize with those fellow sufferers & hope not many of us are still suffering with this years from now!! I am going to try scratching the back opposite the painful front spots & hope that works for me.

If any one else is monitoring this discussion, have you had any response from topical creams or anti-itch products? I picked up a generic Walgreen's hydrocortisone cream with other lotions to try tonight. After looking at all of the different products I wondered if any anti-itch creams would work since the pain is real but there is no outward sign like a rash, redness, etc.

Also has anyone had pain from the base of the prosthesis on the bottom next to the rib cage area? It feels uncomfortable when sleeping. I use extra pillows to try to prop the weight from that breast up and away from the side. It almost feels like a thick roll of rope [tissue] that goes from under the breast to the back. Per doctor's advice I have massaged that area & the pectoral muscle in front, but feel little change in these uncomfortable areas. Has anyone else experienced this after effect?

I tell myself not to complain since my chemo & surgery outcomes were all clear, but as I say to my family 'that phantom pain is real.

Blessings & prayers to other breast cancer patients.


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Jan 31, 2018 09:51AM Nettle wrote:

Hi, you area few years down the line and I wonder how you got rid of the problem, if you did!! I am so reassured by all the talk of itching as I am 10 weeks post reconstruction and last night was the first time it happened to me (maybe after wearing an under wired bra) and it was UNBEARABLE!! Scratching just made it worse and the intensity took my breath away. Had it again today and tried antihistamine tablet and cream, analgesic skin cream and ice pack!! Just praying it's going to go as quickly as it came but the threads from other people's stories are a bit daunting!

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Feb 14, 2018 09:14PM krhoton wrote:

I had a mastectomy with reconstruction 8 years ago and I'm still dealing with the itching. My surgeon says he has never heard of anyone itching after a mastectomy, but obviously he is wrong! Nothing seems to help. One night I was so miserable that I put Hot and Icy on them. It helped a tiny bit just to have that area burn instead of itch. My surgeon tried Botox injections around the implants to help relieve the itching, but it didn't work. He said that burn victims have a lot of itching and Botox injections help with that. I also itch at night. They don't seem to bother me much during the day, but at night it drives me crazy, especially between my breast. Any suggestions would be greatly appreciated.

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Feb 14, 2018 10:19PM Lula73 wrote:

Vagisilcream works wonders on this type of itch,

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/2/2018 Femara (letrozole)
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May 11, 2018 02:27PM Macushla wrote:

I haven't tried topical creams yet as I assime that as it's phantom itching it may not work. I'm only one month post op, left side, skin and nipple sparing mastectomy with immediate reconstruction. There's no sensation in the breast (will my nipple is still reactive to stimulation and cold which is kind of Awesome) and I don't actually have any breast tissue in there so I'm not going to bother with the creams because the Phantom itch makes it feel like it's on the inside. What I find does help is spreading my entire palm over the breast and holding it close to my chest. It's a temporary fix obviously but it does seem too help and the more skin I can touch the better. I guess this goes along with the people and Physicians who say it's the nerves regenerating and need to be retrained. Someone in above post also suggested tapping lightly on the breast when it's itchy and you know what? That actually helped me as well! Thank goodness I have a private office or people would be wondering what the heck I'm doing to myself, groping and patting my breast throughout the day 🙄lol

Dx 3/9/2018, IDC, Left, 2cm, Stage IIB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (FISH) Surgery 4/9/2018 Mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy 6/26/2018 Arimidex (anastrozole) Radiation Therapy 7/23/2018 Whole-breast: Breast, Lymph nodes, Chest wall
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May 12, 2018 07:42AM dtad wrote:

Hi everyone...it sounds like neuropathy to me and it is not uncommon after a mastectomy and reconstruction. I cannot believe your doc said he never heard of it! There are drugs like Neurontin that can help. Good luck and keep us posted.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jun 4, 2018 09:46PM Grandma62 wrote:

I have been itching for some time now, 2 yrs post op double mastectomy. My surgeon said it's very common, but no recommendations. I lotion up every night, seems to help some. We just put up with it???

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Jun 5, 2018 11:38AM mustlovepoodles wrote:

I had BMX in Feb 2017, no reconstruction. The itching isn't constant, but when it comes on it is maddening. I try to scratch the itch, but my whole chest is numb, so scratching doesn't relieve the itch. Rubbing doesn't help. Lotion doesn't help. I just have to put up with it.

Oncotype 23. Positive for PALB2 & Chek2 gene mutations. My breasts are trying to kill me! Dx 7/20/2015, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/20/2015 Lumpectomy Surgery 9/2/2015 Lumpectomy: Right Chemotherapy 10/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 2/4/2016 Prophylactic mastectomy: Left, Right Surgery 10/18/2016 Hormonal Therapy Femara (letrozole) Surgery
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Jun 5, 2018 02:08PM Lula73 wrote:

the itch comes from nerves in tissue deeper than the surface of the skin. You can’t scratch deep enough to affect it. Holding/tapping can help because it causes internal tissues to rub together basically scratching the itch. Creams like Vagisil penetrate the dermis and can reach that itch in many cases. It can’t hurt to try. Cost for Walmart brand is under $2. What have you got to lose besides the itch?

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/2/2018 Femara (letrozole)
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Aug 18, 2018 07:49AM coachvicky wrote:

Hello. First time to post here and cross posting from the Triple Positive Forum.

Wanted to share this:

I still have some numbness on the back of my left arm and under my arms. This is where I itch.

My BMX was July 2016. Implant surgery was January 2017.

The back of my right arm just feels different. I used a coffee scrub on these areas once I healed and I think that brought back a lot of feeling. I still use a coffee scrub but not everyday anymore.

I can live with this and I don't want to live with this. So ... I asked my Physical Therapist if she thought dry needling would help. She made no promises but agreed to try it.

I had my first dry needling on Tuesday. I have not itched and I have a little greater feeling on the back on my left arm. The back of my right arm feels almost normal. I have three sessions, each a week apart, to go. She also recommends some home techniques such as gently rubbing a cotton ball over the areas followed by a sharp end of a paperclip. I have no idea if this will work for the long term. My insurance covers seeing the Physical Therapist and the exercises but not dry needling. The charge is $35.00 for the dry needling plus my co-pay of $30.00.

Coach Vicky


Dx 6/2016, DCIS/IDC, Both breasts, Stage IIA, Grade 3, ER+/PR+, HER2+ (FISH) Dx 6/7/2016, LCIS/DCIS/IDC, Right, 4cm, Stage IIA, Grade 3, ER+/PR+, HER2+ (FISH) Surgery 7/11/2016 Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 8/21/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 8/22/2016 Herceptin (trastuzumab) Surgery 1/20/2017 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 2/22/2017 Prophylactic ovary removal Hormonal Therapy 4/4/2017 Arimidex (anastrozole) Surgery 10/19/2017 Targeted Therapy Surgery
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Aug 18, 2018 08:12PM beach2beach wrote:

I rub my boobs to try to alleviate the itch at the most inopportune times Happy It just starts out of the blue, sometimes I can ignore it and sometimes I'm rubbing and wishing I could peel the skin back and scratch underneath!!! It's a long, slow torture for sure.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 29, 2018 06:27PM jen1 wrote:

Helloladies I had diep reconstruction in 2016. No problems. Then suddenly last night horrible itching on my reconstruct ed breast on the reconstructed nipple. I don’t know what to do.

Dx 10/11/2013, IDC, Stage IIB, Grade 1, 3/9 nodes, ER+/PR+, HER2- Chemotherapy 11/15/2013 AC + T (Taxol) Surgery 4/7/2014 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Radiation Therapy 6/22/2014 Breast, Lymph nodes Hormonal Therapy 8/1/2014 Aromasin (exemestane), Femara (letrozole) Hormonal Therapy 9/30/2014 Arimidex (anastrozole), Aromasin (exemestane) Hormonal Therapy 10/1/2014 Aromasin (exemestane) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane) Hormonal Therapy Aromasin (exemestane) Hormonal Therapy Aromasin (exemestane) Surgery Lumpectomy: Left; Lymph node removal: Underarm/Axillary; Mastectomy; Reconstruction (left): DIEP flap Surgery Surgery Lumpectomy: Left; Lymph node removal: Underarm/Axillary; Mastectomy; Reconstruction (left): DIEP flap Surgery Mastectomy: Left; Reconstruction (left): DIEP flap Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole) Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole)
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Jan 8, 2019 09:21PM krhoton wrote:

I’m now ten years out and still itching especially at night. I have tried many things, but nothing helps. Hydrocodone actually made it worse and Benadryl just made me tired and itchy. Has anyone tried Norotin

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