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madijen
@madijen

Posts: 2
Joined: Sep 26, 2017

Post Mastectomy Pain Syndrome

Posted by @madijen, Sep 26, 2017

Has anyone been diagnosed with post mastectomy pain syndrome and how are they coping with it? I had bilateral mastectomies almost 4 years ago and radiation on right side. Have had daily pain on both sides the right side being the worst. Finally have been put on Neurontin which helps.

REPLY

Hi @madijen, welcome to Connect.
I have heard about post-mastectomy pain syndrome (PMPS). Here’s an article from the American Cancer Society describing PMPS https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/pain/post-mastectomy-pain-syndrome.html
I’m tagging a few members, @elvandi @donnay @cindylb @leannz @lchavez @kathleensunshineobrien @deniseestrada, who have had breast cancer surgery to see if anyone else here has experienced PMPS or nerve pain related to surgery.

Madijen, I’m glad that you’ve finally found a medication that helps. Is your pain caused by nerve damage? Did you have a full axillary lymph node dissection?

I had the sentinel node removed. Due to the fact that my margins were positive as the tumor was on the chest wall I had 33 treatments of radiation 8 of those being boost treatments. The pain is due to nerve damage as it’s even on the side that didn’t receive radiation although not as bad. The neurontin helps some but each day is different with the pain. Some days worse than others but I have learned to manage as best I can. One day at a time.

@colleenyoung

Hi @madijen, welcome to Connect.
I have heard about post-mastectomy pain syndrome (PMPS). Here’s an article from the American Cancer Society describing PMPS https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/pain/post-mastectomy-pain-syndrome.html
I’m tagging a few members, @elvandi @donnay @cindylb @leannz @lchavez @kathleensunshineobrien @deniseestrada, who have had breast cancer surgery to see if anyone else here has experienced PMPS or nerve pain related to surgery.

Madijen, I’m glad that you’ve finally found a medication that helps. Is your pain caused by nerve damage? Did you have a full axillary lymph node dissection?

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I have chronic post mastectomy pain and talk opiods. Looking for others who are dealing with this.

Need information from others about this chronic pain

@baynie

Need information from others about this chronic pain

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Hi @baynie, welcome to Connect. I'm hoping @madijen will return to share her experiences with post mastectomy pain with you.
Baynie, How long ago did you have surgery? Did you have other treatments before or after surgery?

I've had treatment for this since 2012. Various treatments don't work. I am hoping to get into a research study at Emory University soon. The pain is unbearable. Experiencing a flare up now.

Have had chronic chest pain post mastectomy & radiation plus heart probs –its hard for me to tell if it's pmps or heart sometimes — any suggestions?

Curious………..I had a bi lateral mastectomy and only sentinel node removal going on 3 years ago now. I had no radiation. I have some twinges of pain off and on, nothing serious. The pain is primarily in my axilla area. Wonder if the pain people experience might be more from the radiation? I had a second surgery to my chest wall to remove additional tissue left behind from the original surgery. That surgery has caused me more problems (but pretty much eliminated my lymphedema, which is great). The problems I experience now are the off and on twinges of pain and itching on my chest wall as well as an odd rash (going on 2 years now).

Fifteen years ago I had a bilateral mastectomy with latflap reconstruction (looks good but doesn’t feel good) and woke up with the same nerve pain I have today. I have constant jabbing in my armpits and the feeling that my beasts are suctioned to my chest and I am wearing a bra that it too tight all the way around my back. I have seen numerous plastic surgeons and finally saw a pain specialist who diagnosed it as intercostal neuropathy and advised me not to let anyone cut the nerve, which had been advised. It is the same type of phantom pain experienced by amputees and found in the the same percentage of patients. Perkins literature shows that most plastic surgeons are unaware or deny its existence, which was my case. I have tried neurotin, lyrica and now use a little topiramaye, not sure it helps much. A really good PT might be able to show you what exercises/muscle groups to avoid.

@wendyh

Fifteen years ago I had a bilateral mastectomy with latflap reconstruction (looks good but doesn’t feel good) and woke up with the same nerve pain I have today. I have constant jabbing in my armpits and the feeling that my beasts are suctioned to my chest and I am wearing a bra that it too tight all the way around my back. I have seen numerous plastic surgeons and finally saw a pain specialist who diagnosed it as intercostal neuropathy and advised me not to let anyone cut the nerve, which had been advised. It is the same type of phantom pain experienced by amputees and found in the the same percentage of patients. Perkins literature shows that most plastic surgeons are unaware or deny its existence, which was my case. I have tried neurotin, lyrica and now use a little topiramaye, not sure it helps much. A really good PT might be able to show you what exercises/muscle groups to avoid.

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Thanks for your post. In the stress of the moment – diagnosing and treating the cancer I think the long lasting physical effects of the surgery are sometimes overlooked. For the first year I had the same sensations to my chest I would have had if my breasts were still there. I continue to have some tightness in my chest area but because I developed lymphedema (which the surgeons said I couldn't have because I only had the sentinel node removed on both sides) I got both massage and physical therapy. Turns out I did have lymphedema which was confirmed by my oncologist during a regular check up and a second surgery helped immensely. The physical therapy and massage therapy were not recommended or supported by my doctors. It was something I took on for myself and I recommend everyone look into follow up care in these areas.

@baynie

Need information from others about this chronic pain

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I had right mastectomy May 2015, and have severe nerve pain.

@baynie

I've had treatment for this since 2012. Various treatments don't work. I am hoping to get into a research study at Emory University soon. The pain is unbearable. Experiencing a flare up now.

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I have severe nerve pain. Are you in the Emory study yet? What can you tell me about it?

@wendyh

Fifteen years ago I had a bilateral mastectomy with latflap reconstruction (looks good but doesn’t feel good) and woke up with the same nerve pain I have today. I have constant jabbing in my armpits and the feeling that my beasts are suctioned to my chest and I am wearing a bra that it too tight all the way around my back. I have seen numerous plastic surgeons and finally saw a pain specialist who diagnosed it as intercostal neuropathy and advised me not to let anyone cut the nerve, which had been advised. It is the same type of phantom pain experienced by amputees and found in the the same percentage of patients. Perkins literature shows that most plastic surgeons are unaware or deny its existence, which was my case. I have tried neurotin, lyrica and now use a little topiramaye, not sure it helps much. A really good PT might be able to show you what exercises/muscle groups to avoid.

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I've had two massages, and it helped a lot, along with heat/ice. What is involved with the physical therapy, and does insurance pay for it? Thank you.

@wendyh

Fifteen years ago I had a bilateral mastectomy with latflap reconstruction (looks good but doesn’t feel good) and woke up with the same nerve pain I have today. I have constant jabbing in my armpits and the feeling that my beasts are suctioned to my chest and I am wearing a bra that it too tight all the way around my back. I have seen numerous plastic surgeons and finally saw a pain specialist who diagnosed it as intercostal neuropathy and advised me not to let anyone cut the nerve, which had been advised. It is the same type of phantom pain experienced by amputees and found in the the same percentage of patients. Perkins literature shows that most plastic surgeons are unaware or deny its existence, which was my case. I have tried neurotin, lyrica and now use a little topiramaye, not sure it helps much. A really good PT might be able to show you what exercises/muscle groups to avoid.

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My physical therapy was both for post surgery pain, range of motion and lymphedema. My insurance paid for it because I had lymphedema BUT, I think if you explain that you are having pain the doctors should be able to get you insurance approval. (Sometimes you have to fight a little for the extra…but needed….services but it's worth a little tussle). I had about 5 sessions where the PT showed me several exercises to do on a regular basis and gave me a packet of information with the exercises. They really helped. Post mastectomy they will usually give you a sheet or two of exercises to do and a schedule of when to do them and how much. You don't want to over-do but you want to get all the parts moving and supple as well as possible.
It can't hurt if you follow the 'easy directions' and not doing them can cause longer lasting pain and tightness. I'm afraid that sometimes the pain is due to nerves that were disrupted during surgery and you might always have some pain or twinges. I still do sometimes but mostly I've healed up ok so I think it helped. Massage is great too and you can get massage therapists who specialize in post mastectomy and coordinate with your PT's plan. Hugs………

Thanks…I have tried massage, and it helped. I also alternated between heat and ice. I think it flared up worse than usual because I hadn't kept up the self-massage and heat/ice treatments. I've just now taken gabapentin, so I'll see if that gives me relief. Thanks again!

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