Phantom Itching 2 years post reconstruction

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.

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!

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

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 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. 

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

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.

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.

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

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???

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?

I rub my boobs to try to alleviate the itch at the most inopportune times 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.

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