Join Us

We are 218,193 members in 84 forums discussing 160,935 topics.

Help with Abbreviations

Topic: Will I ever stop itching?

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

Posted on: Sep 21, 2008 07:34AM - edited Sep 21, 2008 07:36AM by Held

Held wrote:

I had my bilat in 10/07 with tissue expanders.  Starting with the last 2 fills on my right side (end of January), my skin on the top of my breast, towards the center started to itch like crazy.  My exchange was the end of July, and the itching decreased slightly, but continues.  Nothing relieves the itch for long.  I just want to dig my fingernails into my chest!  The itch reminds me of the itch on my belly when I was pregnant with my second.  At least I could see the light at the end of the tunnel with that one!  If this is itching related to my skin stretching, shouldn't it have stopped by now? Any words of wisdom?

A good friend will come and bail you out of jail....but a true friend will be sitting next to you saying.....Damn....that was fun! Dx 9/6/2007, DCIS, 6cm+, Grade 3, 0/3 nodes, ER+/PR-
Log in to post a reply

Page 1 of 2 (56 results)

Posts 1 - 30 (56 total)

Log in to post a reply

Sep 21, 2008 09:38AM Beesie wrote:

Held,

It may be phantom itching.  This isn't something that's discussed very often - or at all by most of our doctors -  but it's not all that unusual.  I'm not sure when mine started, but I'm now a few months short of 3 years since my mastectomy and a few months past 2 years since completion of my reconstruction, and I still get occasional itching.  The good news is that I don't get it nearly as often or for as long.  And for the most part, it doesn't drive me absolutely nuts like it did before. Many websites talk about phantom pain or itching as a normal side effect after a mastectomy.  Most aren't too specific on how long it may last, but the article belows suggests that the average length of time that women experience phantom symptoms is 20 months post surgery:

http://www.imaginis.com/breasthealth/news/news10.23.00.asp

I hope that yours goes away soon! 

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Sep 21, 2008 09:51AM Held wrote:

Thanks for the info Bessie.  At least now I know I am not alone (or crazy) and that it isn't going to last for forever!  Maybe the reason it is only on one side is that they did a different procedure on the non-cancerous side.  Thanks again for the info!

A good friend will come and bail you out of jail....but a true friend will be sitting next to you saying.....Damn....that was fun! Dx 9/6/2007, DCIS, 6cm+, Grade 3, 0/3 nodes, ER+/PR-
Log in to post a reply

Sep 23, 2008 02:30AM mamaotis wrote:

Held and Beesie

I can sure sympathize!!  I had bi-mast on 8-15-08 with expanders; started fills on 9-11-08.  I've been attributing mine to phantom itching also~  However my plastic surgeon says any time collagen is forming in the body there can be itching.

I'm like you guys........it's good to know we're not alone (or crazy Laughing )  But I had sure hoped it wouldn't last THAT long!  I totally understand the feelings "driving you absolutely nuts"  and wanting to drive my fingernails into my chest!!

Best itch-less wishes to all of us!

Nancy

Log in to post a reply

Sep 23, 2008 05:33AM JustTurnedForty wrote:

Is the itching in a numb area?  I have itching where I can't feel it when I scratch it, so there is no relieving it!  Luckily, it comes and goes, and doesn't usually last in 1 spot for 2 long.

Janine, who is now 43 Dx 1/15/2007, DCIS, Stage 0, 0/3 nodes, ER+/PR+
Log in to post a reply

Sep 23, 2008 06:21PM Held wrote:

I can feel when I scratch.  I itch at the top inner edge of my right breast. I don't itch  24/7 anymore, but when it is there, it is pretty intense.  I think I irritate my skin when I scratch, so I get some relief of that with some lotions  I use.  They seem to cool my skin for a bit.  I can't wait for it to stop!  I know I told my PS about it before - I came for a fill once covered in bio-oil!  My onco was a little concerned but when I told her it was in that one particular spot she seemed blow it off. 

I have to stop thinking about it! It just makes me itch more!!!!!!!!!!!Smile

A good friend will come and bail you out of jail....but a true friend will be sitting next to you saying.....Damn....that was fun! Dx 9/6/2007, DCIS, 6cm+, Grade 3, 0/3 nodes, ER+/PR-
Log in to post a reply

Oct 10, 2008 12:45PM SUEFINE wrote:

I also have itching where I can't feel the scratch.  I have found two methods that help--one is to use ice packs, the other is to slap the skin with my hand.  Not sure why it works, but it seems to help a little.  Horrible feeling, but it does pass.  Seems like forever, though.

Log in to post a reply

Oct 10, 2008 12:50PM lewisfamily503 wrote:

Count me in for the itching.  Mine is not really relieved with scratching since it is in a numb area.  The WORST part is when it happens and you are with people and you can't do anything.  Luckily it is sporadic.  I also get phantom pains that come and go.  And......since I am complaining, I will add that I still have muscle tightness, especially when I am in bed.  I am hoping this will all pass.  After all, it's not even a year since my bilateral mastectomies.  I guess it's just a price we have to pay.  I try to ignore this all and not worry!!!

Anne 

Anne Dx 10/19/2007, Grade 2, 0/2 nodes, ER+/PR+
Log in to post a reply

Oct 10, 2008 01:13PM Beesie wrote:

Anne, I'm over 2 years out since my exchange surgery and almost 3 years since my mastectomy and I still get itching and muscle tightness.  Both come and go.  There can be weeks when I don't have either problem, and then suddenly one of the problems starts up and it might continue for a week or several weeks before it eases off again.  With the muscle tightness, sometimes I know that I did something - heavy lifting or stretching - that causes the muscle to react, but then I could do exactly the same thing another time and the muscle doesn't react at all.  Frankly, it's a pain in the butt (well, not really the butt).  At this point, I figure it's not going to change and it's just something I have to live with.  Fortunately the one problem that I have not had is phantom pains.  And hopefully I didn't just jinx myself by saying that!  Undecided
“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Oct 10, 2008 01:28PM Sociologist wrote:

Palmer's Cocoa Butter (in the tub not the lotion) really helped me through the itching, especially during the expansion process. I occasionally have phantom pain where the nipple used to be...I just scratch it when I need to...the hell what other's think! 

Margaret

Dx 6/14/2007, DCIS, Stage 0, Grade 2, ER+/PR+, mastectomy 07/12/07; silicone implant 12/18/07; implant removal 06/22/09; lumpectomy on mx side 06/21/10, PAP flap 05/2012
Log in to post a reply

Oct 10, 2008 02:15PM spar2 wrote:

I finished recontruction in dec 2007 and still itches with no relief since it is numb.  It is irritating.  Do you just pour some coca butter lotion in a tub on water?  Thanks

www.spar2.multiply.com Lets help make each other's life better
Log in to post a reply

Oct 10, 2008 05:57PM mradf wrote:

Thank you!
So it isn't just me!
What a relief. I'm scratching right now.  I sometimes get little bumps that look like they want to turn into hives.  Maybe I do have hives.  Who the heck knows.  I went through two tubes of prescription ointment this past summer when my primary thought I was having a delayed reaction to surgical tape, or sweat from walking, or maybe just the stresses my body has been through.  There is one part near the middle of my chest where I scratch or rub, and I feel the sensation near my armpit.  I guess it's nerve regeneration.  I pretty much think I scratch and rub and feel myself up as needed no matter who is around.  It's not like they all don't know what's going on under my shirt!  This too shall (hopefully) pass.

Be well,

Maria

ALL WILL BE WELL. - Julian of Norwich Dx 11/19/2007, DCIS, 4cm, Stage 0, Grade 3, 0/7 nodes, ER+/PR+
Log in to post a reply

Oct 11, 2008 04:01AM Sociologist wrote:

Hey Spar2,

I meant buy the cocoa butter that's in the white tub. They also make a lotion but I found it not to work nearly as well for me. What I usually do is put it on first thing in the morning, when I get home in the afternoon, then after I take my shower at night.

Maria, I still have these issues (I had recon in December). I had a rash under the mast site until I got the implant. It finally went away but I still have nerve pain everyday...hopefully the ps will take the implant out in December. I've just never adjusted to it.

Margaret

Dx 6/14/2007, DCIS, Stage 0, Grade 2, ER+/PR+, mastectomy 07/12/07; silicone implant 12/18/07; implant removal 06/22/09; lumpectomy on mx side 06/21/10, PAP flap 05/2012
Log in to post a reply

Oct 11, 2008 06:13PM mradf wrote:

Margaret,

Do you mean to say you are going to de-construct? 

Maria

ALL WILL BE WELL. - Julian of Norwich Dx 11/19/2007, DCIS, 4cm, Stage 0, Grade 3, 0/7 nodes, ER+/PR+
Log in to post a reply

Oct 12, 2008 06:02PM Sociologist wrote:

Hey Maria,

Yes, I am going to deconstruct in December if I can talk the ps into it. I saw him in May to see if it could come out during the summer but he said it was too soon (6 months after it was implanted). It looks great but feels awful! It feels like it's under my armpit, just like the expander felt. I just have  one implant thank goodness (had a reduction/lift on the R breast at the time of the mast).

As far as the rash...I've talked to several women that had this issue after a mast and it seems to happen to those of us undergoing recon. My rash never itched but did look like hives, just the skin stretching during expansion was itchy. It did freak the docs out though because they kept giving me antibiotics for it because they thought it was an infection of some sort. It did go away  about a week or so after the switch.

Take care.

Margaret

Dx 6/14/2007, DCIS, Stage 0, Grade 2, ER+/PR+, mastectomy 07/12/07; silicone implant 12/18/07; implant removal 06/22/09; lumpectomy on mx side 06/21/10, PAP flap 05/2012
Log in to post a reply

Feb 2, 2012 08:55AM ILwoman wrote:

Does the itching seem to be deep in the tissue?

I had right mastectomy 4.5 months.  Today I had itching deep in underarm by remaining breast. I realize that itching can be a sign of breast cancer.  I don't know if I should be alarmed by this itching.  Is it normal to have it on the opposite side from surgery? 

Dx 9/13/2011, IDC, 2cm, Stage II, Grade 2, 2/5 nodes, ER+/PR+, HER2-
Log in to post a reply

Mar 14, 2012 08:08AM - edited Mar 14, 2012 09:27AM by Baldwin

I had a double mastectomy in April of 2011 and ths past January 2012, I started having terrible itching. My Plastic Surgeon claimed he never heard of this 7 months post surgery. I found that hard to believe since he had been doing reconstructions for 30 years. 6 days ago, I had my swap with the expanders for the implants and two days after that, I had itching so bad that I just wanted to rip my chest off. Once again, no doctor could help me. Benedryl pills and cream did nothing! My neighbor's son is a Doctor of Pharmacy and he told me to use a cortisone cream, ( I had a tube of prescription cream in the house) and to chew 3-4 Pepcid tablets! Bingo!!! Within minutes the itching stopped and has not come back! The Pepcid's main ingredient is a histamine blocker!! Most doctors do not know to tell their patients this and we suffer like dogs for no reason! Thank God I just happen to know this doctor of pharmacy!

Log in to post a reply

Mar 14, 2012 11:37AM - edited Mar 14, 2012 11:39AM by Pelicangirl

I was so relieved to find this thread. I have been going mad with itching all over since my BMX wih recon but mostly on the reconstructed breasts, on my abdomen above and below the scar where the tissue was taken to reconstruct the breasts, anywhere where there was surgical tape to cover wounds, etc. I have attributed most of it to allergies to surgical tape but that doesn't explain the bumps and hives I have been getting in places where no tape has touched! I have gotten some minor relief from Benadryl and hydrocortisone cream alternated with Caladryl Clear, but I am willing to try the Pepcid tablets. Neither the BS nor PS has had any explanation.. The PS said it looked like some sort of contact dermatitis but I don't think that is it at all. I think some of the theories you ladies have posed make more sense...phantom pain that manifests as tingling or itching, nerve regeneration, skin stretching and sutures healing causing a sensation of itching...those all make more sense to me. I am surprised physicians don't pay more attention to this problem post-surgically. Oh well, at least we have each other to network with and share possible solutions! I will try the Pepcid along with continuation of he hydrocortisone cream and Calydryl and report back.

Pelicangirl Dx 12/8/2011, IDC, 1cm, Stage IIA, Grade 2, 1/9 nodes, ER+/PR+, HER2-
Log in to post a reply

Jan 12, 2013 07:36PM Baldwin wrote:

I had my reconstruction in March of 2012 and was going insane from the itching. It let up for months, but now is starting on the left side. I had a double mastectomy in April 2011. The cancer was only on the right side. The pepsid helps, but not as well as it did at first.

Log in to post a reply

Feb 26, 2014 12:19AM Amichan wrote:

I am so glad to find these posts, thank you so much!

I have been suffering from the intense itch on my right side (the original cancer side), with no relief from scratching due to numbness..  I am glad to know that I was not alone (and that I am not crazy!)  My final bilateral reconstruction (tissue expander to implant switch) was January 2013, so it's been a year.  The itching is not constant, only once in awhile, but it's very intense.  So frustrating when no relief comes from scratching the area.  

And thank you for all the suggestions.  I have been pinching myself till it hurt in the area near by the area to distract from the numbness.  I think the ice might work, and I will also try the cortisone and pepcid and the palmer coco butter bath...

Dx 8/22/2011, IDC, 4cm, Stage IIIA, 6/17 nodes, ER+/PR-, HER2- Surgery 10/6/2011 Mastectomy: Right Surgery 10/19/2011 Lymph node removal: Right, Underarm/Axillary Chemotherapy 11/6/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/1/2012 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 5/8/2012 3DCRT: Breast Surgery 1/9/2013 Reconstruction (left); Reconstruction (right)
Log in to post a reply

Feb 26, 2014 08:08AM sarahjane7374 wrote:

The itching drives me CRAZY.  It only happens on my left side, kind of under my arm.  I still have swelling there that goes around to my back, and my PS says it may take years to resolve. YEARS.  But that the itching indicates feeling that is returning to the area.  It's still numb, so jury's out on that, but hopefully he's right.  It's like a deep itch, way under the skin, that you can't do anything about.  So annoying!

Surgery 6/6/2013 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary Surgery 6/6/2013 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/10/2013 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 11/5/2015 Reconstruction (left); Reconstruction (right)
Log in to post a reply

Mar 1, 2014 05:35AM Baldwin wrote:

I hope you are getting some relief from the itching. Mine has been fine for about 6 months, but has started up again 2 days ago and is keeping me up. When it happens, it is very intense.

Log in to post a reply

Mar 27, 2014 05:46AM McKatherine wrote:

I started itching last night.  It's on the side where the lymph nodes were removed.   That whole area is still numb, so scratching is useless . . . Going to try the ice suggestion.  

Dx: 1/2/13 IDC (w/ DCIS) 12 invasive tumors (3 largest 2cm+), Stage IIb, Grade 2, 3/19 nodes ER+PR+HER2+ Targeted Therapy 2/4/2013 Herceptin (trastuzumab) Chemotherapy 2/4/2013 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 6/26/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 9/18/2013 Breast, Lymph nodes Hormonal Therapy 11/17/2013 Surgery 4/23/2014 Reconstruction (left); Reconstruction (right)
Log in to post a reply

Sep 26, 2014 10:45AM MaggieNeb wrote:

It was my husband who suggested I "google it" when I started developing the extreme itching.  Right after my bilateral surgery 10 months ago, I experienced the phantom nipple itching and it did not last long, but this itching is much worse and after reading several different blogs, I realize it may be something I will just have to live with. The first blogger said she was a year post surgery, another said 2 years, 5 years, 7 years and one was 9 years post surgery! Yikes!  The itching is in the left breast area about where my nipple would have been to under my left armpit.  Now I did experience a severe infection in that part of my incision and it sort of "ate" a tunnel from the breast to behind the armpit...when I first felt the itching my initial thought was, "ok good it's finally healing..." but the itching is just short of manic.  I have never been a panicky person but this itching could very well drive me totally batty. Sad

Surgery 12/4/2013 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
Log in to post a reply

Oct 10, 2014 02:34AM clarrn wrote:

Add me to the list! 3:30 and I am going nuts!   Phantom itch I guess because I can't feel myself scratch :(   It does feel like what my DCIS with significant necrosis felt like (, so of course my mind wants to worry.  So glad to find a better explanation!   Boo to you phantom itch! 

30 years old at dx, Implant lost due to infection. Open wound packing for 108 days :( now onto a Free Tram Dx 12/4/2013, DCIS, 6cm+, Grade 3, ER+/PR+ Dx 1/29/2014, IDC, 1cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+ Surgery 2/27/2014 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/7/2014 AC + T (Taxol) Radiation Therapy 10/14/2014 Breast, Lymph nodes Surgery 2/27/2015 Reconstruction (right): Silicone implant Surgery 3/22/2015 Reconstruction (right): Silicone implant Surgery 8/23/2020 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap
Log in to post a reply

Oct 12, 2014 02:55PM whatnow wrote:

I still have a crazy intense itch in the axillary area on the side where I had my mastectomy and lymph nodes removed.  I hate to say this but I'm 9.5 years out!  However, it's not the annoyance it was in the beginning. And, though there is numb"ness," it is not completely numb and I absolutely dig my nails in to relieve it.  But I know what y'all are saying about not being able to relieve it.  I'm more like that around my back. Kind of like that itch that is somewhere between your ear and your mouth...in between and drives you crazy.  I've assumed my axillary itch is in the area where my few nodes must have been removed. Definitely the least of our problems, eh?

Age 46 at dx. Initial finding 1.8 cm. MRI found a 2nd, smaller primary tumor in same breast the day before mastectomy ("close to, but not touching chest wall"). Stopped chemo after 1 treatment due to unease with risk:benefit ratio. Dx 4/1/2005, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Surgery 5/1/2005 Mastectomy: Right Chemotherapy 7/1/2005 AC + T (Taxol) Hormonal Therapy 1/1/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/1/2008 Aromasin (exemestane)
Log in to post a reply

Oct 21, 2014 09:17AM gk2bc0 wrote:

I am experiencing the phantom itch in my armpit in the area of the SLN biopsy, and the last surgery I had there was over 6 years ago!  It  comes in waves and I try to  scratch, but to no avail, the skin is  numb and the itching is internal.  I have the same itching in my abdomen around my scar for my tram surgery, again in waves and the scar is hypertrophic since the first revision (i've had three) and it too comes in waves.   I've had the doc give me thirty steroid shots in the scar  more than once, but it doesn't help, so no point there.  Does anyone have any success in relieving this?  heat, cold?  Its been suggested that I take benadryl. Sigh, yet another daily reminder, but i am glad I am not crazy as you all have experienced this too.    

1/2005: 7mm, lump, rads, tomax; recurrence 5/08;mast, TRAM, TCH
Log in to post a reply

Oct 21, 2014 08:46PM Blessings2011 wrote:

Ladies - just a warning!!!! 

Ice packs can cause frostbite on a reconstructed breast in a VERY short amount of time!  Bawling

If you have had a mastectomy, that means that all the breast and fatty tissue has been removed as close to the skin as possible, and the skin is much more vulnerable.

Muscles and nerves have been cut and sutured, and your ability to perceive that burning sensation of too much cold has been compromised.

I learned that the hard way when I sunburned my TEs THROUGH a white T-shirt. I was bright red and miserable, and thought ice packs would help. Fortunately, I called my PS who read me the riot act. Cool compresses, yes; ice, NEVER.

As for the Pepcid helping with itching - yes - it is a Histamine II Blocker, and Benadryl is a Histamine 1 blocker. Taken together, the Pepcid enhances the efficacy of the Benadryl. Pepcid alone usually won't help, unless you have heartburn!

Dx 9/15/2011, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/4/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/21/2012 Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/4/2012 Arimidex (anastrozole) Hormonal Therapy 10/21/2013 Femara (letrozole)
Log in to post a reply

Oct 22, 2014 03:20AM Ariom wrote:

I had Phantom itching for about the first year after my Umx. My Surgeon said it usually resolves in the first 12 months, so I was glad when mine stopped being regular. I still have the odd itchy day. I have found if I scratch my shoulder or around onto my back it can make it disappear. Even using a rough towel on my back will help it. I was told that the affected nerves, which are causing the itch, actually go all the way around and can be satisfied by scratching the remaining part of them. Works 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
Log in to post a reply

Nov 16, 2014 07:32PM Lorrilye64 wrote:

The itching just started for me last night on my non cancer breast. I kept waking up all night from it. It's continued to itch all day. I still have expanders.

Thank you all for sharing yourexperiences and ideas. I will definately try them.

Log in to post a reply

Jan 9, 2015 11:01PM Baldwin wrote:

I had my double mastectomy in April of 2011. I had no itching until I swiped the expanders for the implants in March 2012. I will be fine for months and then it starts up with a vengance. Tonight it is bad again after being fine for about 6 months. It is mostly at night. I can see it will be a sleepless one. I am holding an ice bag on, have taken the Pepcid and applied the cortizone. Benedryl does not help , but Afrin tablets do. It is easing up a touch

Page 1 of 2 (56 results)