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Post Mastectomy Pain Syndrome: How are you coping?

Posted by madijen @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.

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fank | @fank | Aug 18, 2024
In reply to @cindylb "Thanks for your post. In the stress of the moment - diagnosing and treating the cancer..." + (show)
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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.

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What kind of second surgery did you have to treat the lymphedema?

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ohelizabeth | @ohelizabeth | Jul 25, 2025
In reply to @baynie "I've had treatment for this since 2012. Various treatments don't work. I am hoping to get..." + (show)
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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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Hi @baynie
I'm hoping you had good look at Emory! I'm fighting unbearable pain and looking for answers. Could you please share any successes you have had?

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madijen | @madijen | 1 day ago

I have had post mastectomy pain syndrome since my bilateral mastectomies 12 years ago. I take a very low dose of gabapentin and just recently went through 3 months of PT that helped until I pulled a muscle in my chest and am limited to what PT exercises I can do. Had a pain block in one nerve in my chest that didn't do anything for the pain so didn't go for more injections. I use a lot of heat and sometimes use a muscle relaxer at bedtime.
Karen

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fank | @fank | 19 hours ago

I’ve had terrible tightness ever since my bilateral mastectomies, tissue expanders, left sided radiation, reconstruction. Physical therapy and gabapentin have helped only slightly. I recently had my implants removed hoping for more relief but I think it is minimal. I’m still healing from the surgery.

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