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Post Mastectomy Pain Syndrome: How are you coping?

Breast Cancer | Last Active: Aug 18 4:53am | Replies (31)

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@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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Replies to "Fifteen years ago I had a bilateral mastectomy with latflap reconstruction (looks good but doesn’t feel..."

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.

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.

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.........

I was not given any exercises to do, but my surgery did not include lymph nodes.

Actually, it's good you had no lymph nodes messed with. They are pesky little devils.
I highly recommend seeing a PT as well as the massage therapist. I found both helped. As few as 2-3 visits with a PT would give you some insight into the muscles and nerves involved and options on exercise and movement that might help. I hope you find some relief. Keep us all posted.
I am researching the use of marijuana for my husband who has Stage IV cancer. In my research through the National Cancer Institute and other sources of good reputation (provided via links from our moderator, Colleen) I read that certain properties of marijuana (CBD and THC) there is a very powerful combination of anti inflammatory and pain reduction. It's fortunately legal where I live, both medically and recreationally. We are trying different strengths and combinations for my husband's severe pain. He is on pain medications but the marijuana seems to be both working as well, if not better, and seems to be enhancing what he is already using. This is all under the watchful eye of our doctors. The research is still small because of the legal issues, but it might be something you could consider? I'm not personally a fan of the effects of marijuana BUT, I am considering it as it seems to show promise with tumor suppression in breast cancer and metastasis. Side effects seem to be minimal. Think this natural substance may have gotten a bad name it perhaps doesn't deserve. Just an option to manage the pain as you work through the massage and pt?