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All TopicsForum: Surgery - Before, During, and After → Topic: Post Mastectomy Pain what's normal?

Topic: Post Mastectomy Pain what's normal?

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

Posted on: May 7, 2012 03:54AM, edited May 7, 2012 08:03AM by Jayme33

Jayme33 wrote:

Hoping for some feedback on post pain. I am 3 weeks from my bilateral mastectomy. I consider myself to have a fairly high pain tolerance. I have had back pain for years that has helped me to tolerate pain day to day. In all honesty, from all my research and talking to others prior to surgery...I didn't think my post op pain would be this bad! A little history: for my 40th birthday, I bought myself breast implants...saline under the chest muscle, not too big (I only went from a B cup to a C cup). Jump ahead 10 years and I have BC. Because I didn't have access to a plastic surgeon in network, in my area, I chose to do reconstruction later. The surgeon who did my mastectomy said he could keep the implants in place during my mastectomy and this would help with my reconstruction later as the chest wall pocket that I already developed would stay in place.
I have so much burning and stabbing pain across my chest wall which has increased as the numbness is dissapating. It seems to increase or stay the same each day, and I expected the discomfort to decrease as time went by. Am I experiencing normal nerve regeneration? Am I just expecting too much too soon? Or do I have increased discomfort because the implants are still there? My surgeon has been no help, frankly a disappointment in terms of information. I have had no post op instruction other than no driving for 2 weeks and no shower till drains were out. I had an ultrasound last week to make sure the implants were not encapsulating (they weren't and lympheda was minimal). He told me to take Motrin (really???) which was no help what so ever. When Ilook to the internet for post mastectomy pain...so women complain that their pain is lasting for months or even years....I can't even imgine this discomfort will be that long.
Can anyone tell me what their recovery has been like? Anyone with nerve pain that has found something to relieve it on their own? Or am I just being impatient with my recovery timeframe? Any advice would be appreciated..
Dx 2/28/2012, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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May 7, 2012 05:14AM , edited May 7, 2012 05:17AM by cinnamonsmiles

Dear Jayme33,

It saddens me and angers me at the poor treatment  you have gotten from  your surgeon. There are  a multitude of post op instructions for a mastectomy (not lumpectomy)...not lifting your arms very  high (I think it was no more than a 45 degree angle for me) until the surgeon says it's ok, drain information, when you can start to do stretching exercises (they help prevent scar tissue from forming and have a certain order of progression to them as well).

IF over the counter pain relievers are not helping you, then of course something stronger should be prescribed.

After a mastectomy, everyone's experiences are different but similar. There is a topic pinned to the top of this Surgery forum called Post Mastectomy Pain Syndrome.

I have had a severe case of it from the moment I awoke from surgery 1/11/11. I am still being  treated for it at a Pain Clinic. I have not found anything that relieves it on my own. With the exception of learning that tighter camisoles helped and learning what clothes to wear.

I had and have the same symptoms you describe. I noticed that sometime closer to the year mark, I started to get some  normal feelings back in the chest. Some do, some don't. 

Some breeze through it afterwards with some discomfort, some more than others. Our timelines for healing varies greatly.

If I were you, I would get a second opinion from a different surgeon, talk to you primary doctor and read up on the PMPS thread here. I know it is long, but there is a lot of good information in there of what those of us with PMPS have gone through.

Did you have any node dissection? That is some info that would be good for us to know as well.

If your pain is much more than you can handle, see someone else. In order for my surgeon to take notice, I was very, very specific in exactly what I was feeling and and where and wrote it down so I could read it right off the paper.

Pleas let us know how  you are doing. Feel free to post under the post mastectomy pain syndrome thread, as well. I can not diagnose you, but maybe  you will have an "aha" moment while reading.

Mastectomy without reconstruction was NOT the worst or only available option. I chose it and am happy with my decision.
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May 7, 2012 06:38AM , edited May 8, 2012 06:49AM by Jayme33

Thank you Cinnamononsmiles for the response. Yes I had sentinel node biopsy on the right side. I started reading the PMPS section. It depresses me to see that this pain may be ongoing for months as well as years and that so few have found a way to relieve it. I think I'm pretty tough but the thought of this and possible chemo treatment in the next month is daunting...I will read on and see if there is anything that brings on that aha moment as suggested. The suggestion to see my primary care physicianis a good one...I will do that!  thanks so much for your response.

Dx 2/28/2012, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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May 7, 2012 06:50AM GODISGOOD2012 wrote:

Jayme33,  I also experienced the pain you are talking about in my right arm.  This was the side with the cancer.  I had a chorded vein in my arm to the point where I could barely raise my arm. The worst pain came from the latisimus muscle on the back.  OMG, I couldn't believe the burning pain that could come from the slightest wrong move.  Here is the best part.  I had my BMX on 2/13/2012 and the vein has softened and I have regained full range and motion in my arm without PT and most of that burning pain has gone.  I watched a few videos on youtube that show stretching exercises for recovering Mastectomy patients.  I am now in the reconstruction phase and am not doing them with having to recover from new incisions, but plan to get back on it as soon as I get the okay.  

Sandi Dx 2/8/2012, IDC, 2cm, Stage IA, Grade 3, 0/13 nodes, ER+/PR+, HER2- Surgery 02/13/2012 Mastectomy of one or both breasts: Mastectomy of my left breast, Mastectomy of my right breast Hormonal Therapy 03/15/2012 Surgery 04/09/2012 Reconstruction of my left breast: Tissue expander placement; Reconstruction of my right breast: Tissue expander placement Surgery 04/30/2012 Prophylactic (also called preventive) removal of the ovaries
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May 7, 2012 07:00AM , edited May 7, 2012 08:00AM by Jayme33

Thank you God is good....I hope the pain is temporary. I am going to look those up on YouTube right now. I have what I thought was a corded vein under my breast but the doc said it was just "thicker skin". Not sure if he was right or not, as he seems to take every pain complaint as a personal assault on his surgical skills! 

Dx 2/28/2012, IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-