Hey everyone,
My name is Debbie and I am new here.  I introduced myself yesterday in the other forum but found that alot of you come to this forum as well.
 
I had a bilateral mastectomy with tissue expanders inserted on Thursday, October 29th.  I was diagnosed with stage 1, IDC in my left breast on Sept. 23rd.  My lymph nodes are clear thank GOD!.  I go for my first appt. to my plastic surgeon on Wednesday and then to my breast surgeon on Thursday.
 
I am experiencing a pretty intense burning sensation in my left arm and under it around the incision site of the lymph nodes.  The nurse said it was normal and that my nerves are regenerating themselves.  Has anyone else experienced this?  Any suggestions to make it better.
 
I am anxious to hear some of your stories that are similar to mine and getting to know you all better.

Hi Debbie--I just want to welcome you to the board and tell you how sorry I am that you need to be here.  The sensations you feel are normal.  Some of us get burning and some of us have a numbness.  I was a neuro and spinal cord nurse for awhile and, yes, some of the nerves that were severed in surgery reconnect and it can be a slow process.  While they are trying to do this, they really complain and spasm and that is probably what you are feeling.  I still have some mild residual numbness on the upper part of my left arm and at the mastectomy site.  But for the most part there is sensation and the burning has long stopped.  Good luck.
                                                                        Ann B.

Ann B.
12/89--Lumptectomy of left breast for 2 sites of DCIS followed by radiation and 5 years of tamoxifen. ER/PR +
12/2002--Mastectomy of Left breast for recurrence. Nodes negative. ER/PR+ Her2-. Arimidex.

Hi Debbie,

I just wanted to welcome you here but sorry I can't help with your problem as I had a lumpectomy.
I'm sure many other's will advise but also check out the surgery/recon forum where you may find some more info on this:)

Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex
Carepage- survivortricia

Hi Debbie and welcome, sorry you have to be here. I didnt have a mast but did have lumpectomy and did have some numbness going on due to the nerves regenerating themselves. It really can take quite a while for your body to recover from all it's been through. I am sure some of the ladies who had mast will be along.

hugs,
Betsy

Betsy, 51, from NH
Stage I, grade 2 IDC. ER/PR +. HER2/neu -. Lumpectomy 4/30/07. 1.4 cm tumor, 4 nodes, all negative. Oncotype score 17. 4 TC done 9/18, 33 rads-done 12/6/07. Arimidex for 5 years. TailorX clinical trial. 4/08/09 TWO YEARS CANCER FREE!

Hi Debbie,
 
welcome, and yes it is normal, I had a bi-lat in October last year and it took almost 6 months for me to be able to even wear a shirt without wanting to go through the roof, my underarms are still numb and may never get back feeling from that.  I did not have the expanders done but did have some clean up surgery done just a couple of weeks ago and am now back to the same pain as I was last year but hopefully it wont last as long because it was not as extensive as the last time.
 
good luck and again welcome
 
kim

mom of 2 kids
single after 31 years
Oregon City, Or
ILBC dx 9/30 with 2 nodes affected
progesterone/estrogen positive
her2 neg
double mast 10/20 no reconstruction 
no chemo 11/25
started tamoxifen 11/27 

Hi Debbie - from another Debbie!  I'm sorry you had to join the club - but relieved you have caught it so early!  The burning in your arm is probably from the nerve damage during surgery/lymph node removal.  I'm a year out from surgery and still have some numbness and sometimes a burning (not often and not unbearable).  I hear it can take a year or more to "heal".... all the nerves have to find their way back to their rightful place.  Hang in there but do mention it to your docs.....

Best of luck with our upcoming Recovery!

Debbie P in Dayton, TX
Diagnosed Stage II Oct 2008
Mastectomy Nov 2008 (2 lymphs removed)
After initial clean lymphs, 1 found cancerous so
Lymph removal Dec 2008 - all clear 
Cytoxin/Adriamycin 6 rounds started 12/08
    Final Chemo 4/2/09!  Femara started 4/16/09 for 5 years.

Hey everyone,
Thank you all so much for making me feel welcome and sharing your thoughts as well.  I went to my first post op with my PS this afternoon.  He changed my antibiotic because I have a bit of redness in the left side and my drain wasn't draining on that side.  The nurse stripped the tube and worked with it a little bit and it started draining again.  So I go back in 2 weeks to him instead of one to get the new antibiotic going and see if the redness gets better.  He did say also that all the burning and sensations that I am having is all normal like ya'll said.  So now tomorrow morning I go to my breast surgeon so not really sure what they will do.  I'm thinking that I will be referred to an Oncologist and if my path report is back we will talk about that.  Anyone know what the usual protocal is?

Debbie Bailey-45
Married 27 yrs, 2 Children
Acworth, Georgia
Diagnosed w/Stage 1/IDC 9/23/09
Bilateral Mast. w/tissue expanders
10/29/09

Debbie,

You'll have a better idea of what comes next depending on the path report.  I had a few positive lymph nodes so was referred to an onc straight away.  If your path is really good and this caught early an onc may not be neccessary unless you're hormone positive and may need some hormone therapy.
Good luck for clear results!

Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex
Carepage- survivortricia