Itching

I had insane itching during the initial healing period. I thought I was going to lose my mind because I didn't want to scratch the raw scars and the itching was ferocious. It seemed to be linked to a rash that moved around my chest for a few months. In my case, the whole syndrome seemed to be caused by the oil-based moisturizer I was using. All gone now, thank goodness. My dermatologist suggested I switch to something called Calming Creme. I think it's made by Eucerin. It's kind of thick and pasty though, so convenient for winter only. Anyway, may I suggest a visit to a dermatologist?

I have itching--especially in the summer and when I have had prosthesis on for a long time.  I wondered if I was allergic to the silicone.  It seems like the factors of heat and time play into it.

Candyce

I'm almost 2 years out and I still have severe itching.  It's not constant - it tends to come and go - but right now I'm in one of those stretches where I'm getting the itching every day.  Thre's nothing I can do to stop it and it drives me crazy.

This seems to be one of those things that the docs never tell you about.  In fact, from earlier threads, it seems that most docs don't even know about it, or deny that the itching has anything to do with the mastectomy.  But it happens to too many of us for it to be a coincidence.  It's got to be phantom itch. Ahhhhhh!   

Hope, I get that too. It is sort of funny but very strange.   I had a single mastectomy so I have one natural breast & nipple and one implant reconstructed breast with no nipple.  (I replied to this post because the itching problem happens to some of us whether we've had reconstruction or not).  When I get cold or get a shiver, I get exactly the same "nipple" feeling on both breasts.  It's so weird.

I agree with sam this must be contagious, as I was reading the post I started itching also. I also find myself wanting to scratch at inappropriate times.

Sheila

I have to laugh, even though like I mentioned I itch too, almost feel like a monkey in a zoo!  I dont wear a bra, as none is needed, but make sure what ever top I wear is extremly soft, winters I wear cotton camesoles or the satiney ones or the stretchy like ones, do have 2 very pretty ones  that are dark skin tone, one has lace around the front and I use to wear when i had boobs,

This past year I wore one in the winter as its by a co. that makes like soft womens thermals etc and cami's a tiney bit of the black lace,  as my top had a zipper, I kind of wanted to feel "sexy" or something ,heck i dont know, it did make me feel prettier, as prior to BC being an -A cup, they say if you have it "flaunt it" well I never flaunted it...but I have a nice set of legs so I wore skirts, keeps the distraction from up above, but now, I could care less.. as after I have read of SOOO many having many more surgeries and diff things happing w/reconst.  Im really pleased I did not.

as of the itching still, I am using a new thing of babypowder, Johnson and Johnson "melon" scent..its great, especially with the heat we have been going thru in summer..

thats it for now.

Ter 

LilyMae,

I have a spot on my right mast scar that itches quite frequently.  I use a very small amount of 1% hydrocortisone cream on it - usually morning and night, and while it doesn't take care of all the itching, it does relieve most of it.  The scar is numb, and yet I get relief. I didn't think it would work, and others have said it didn't help them, but it is a fairly inexpensive thing worth trying.  And good luck!  This itching is awful when you can't even touch it!

I just started this itching a couple of days ago and it's definitely not the skin that's itching. It's coming from inside like LilyMae - no way to get to it. I had a bilat diep. It's awful. Luckily, so far it's only on one side. It's driving me wild. It doesn't seem to be affected by the bra or no bra - yikes! I hope it goes away soon before I go out of my mind!

I'm new to the discussion forum and think it's wonderful how you all support one another and share so much good info.

I too had TERRIBLE deep down inside itching - it made me crazy! sometimes rubbing it with pads of fingers helped but often the skin felt "numb-sore" if that makes sense (numb but sore at the same time). Finally after several years, it got better. Now I occasionally have the itch or a almost sharp pain or just a muscle cramp but nothing like I used to have - I'm 10 years in February. It will get better! Some folks sooner than others. my surgeon said it was nerve damage - but some of you say nerve regenerating which sounds sensible. our bodies are amazing!

Hi

I had a left mrm 2 1/2 years ago, and still have some itching, and it is really irritating.  I thought it was just due to the heat of my prothesis, but maybe not. 

Beesie and Hope: I didn't have recon, but the weird thing is, I get the "phantom nipple" if I get really cold. Said something to my dh about it, and he looked at me oddly, then burst out laughing.  Then, he had a coughing fit, so I felt vindicated!

Jennifer

If I wear a heat pad between my prothesis and skin I don't get so itchy. Sometimes it gets really itchy along the scar line and it's two years sincwe I had the single mast - will ask the BS next week when I see her. Baby powder seems to work well though.

I am so pleased others have phantom boob syndrome as well. It is quite an odd sensation and will go right to my non exsisting nipple, sometimes its quite sore.

Alyson 

PERHAPS AN ANSWER ?

Lilums  and everyone: I have spent months trying to find the answer for never ending uncontrollable itching that appears out of the blue. It's a deep itch, if I could scratch underneath my reconstructed breast (2 years ago) I would. Exactly as Lilums (dec 21st) described. I wanted to scratch the bones under my breast. I was SO relieved when I found this website and forum,as I thought I was going mad.

I had a latissimus dorsal flap reconstruction and I have ripped and torn the skin on the back shoulder; so badly the skin is bruised and bleeding. Radiologist said no one else had ever complained about this. She said the bone has no sensation and itching can only exist only on the top two layers of skin.  But my itching was "deep" ( and I am numb to the touch which made no sense to anyone) and I would bruise and rip my skin to try to get to the centre of the breast.  My internist changed all soaps, lotions etc and when it had no effect, referred me to a dermatologist.  The dermatologist also said this was new to her (I was worried they were going to think I had a  psychiatric condition!)  and no one had ever complained of this at all.

I begged for answers, as everything had been tried - antihistamines, sprays, lotions. She prescribed Vanos. It is  fluocinide cream (1%) and relief at last.  It's not perfect, but it does dull the insane deep itch that gave me no rest. If you trace the research through pruritis, one of listed reasons of course is radiation. But that didn't explain my shoulder. So I checked on peripheral neuropathy and while not a match for all symptoms, it is the closest in terms of the symptoms. Vanos is not an antihistamine, it's a strong PX corticosteriod, and that seemed to work for me.  Oh and sleep in cotton and on cotton sheets. Hope this helps, Alison

There seem to be many sensations we get, itching, phantom pains, itching even though it is numb, tightening in nipples that aren't there anymore, and a "let down" feeling of milk coming in when nursing.

Sometimes i am glad to be feeling 'something" as opposed to nothing, and if it gets bad, I use a cold gel pack and 5 minutes of that seems to stop the sensation.

Hi - I had single mastectomy, no recon June 1/10.  OH YAH, there's itching, all right!  If this weren't related to the mast., then the OTHER boob would itch sometimes, too...and it doesn't!

One other thing...even after 2 years, my left chest area is still tender and sore.  Anybody else have that?  It's not extreme, but it is pretty sensitive.