Post Mastectomy Pain Syndrome

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.

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

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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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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?

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Hi @madijen,
I just joined this group because I have been taking gabapentin for pmps for a few months following a bilateral mastectomy. I have what I call taser pains and horrible internal itching that’s driving me crazy. I’m thinking I need more gabapentin, taking 300mg currently. I know this is making me so uncomfortable and I’m so sorry you’re having the same problem. I have yet to find anything that totally stops it.

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I’ve been continuing to search for some help for post mastectomy pain syndrome. I had 7 surgeries after a bilateral mastectomy because of an infection and radiation causing my skin to be compromised and not able to heal. I now have one implant and a gnarly scar. The pain and itching are extremely uncomfortable. I’m taking 300mg of gabapentin but don’t like the side effects. I’ve recently had some acupuncture tx and massage which have helped. I’m exploring medical marijuana and found a lotion containing THC that seems too be helping with the pain. I’m going to try a combo of THC and CBD that is supposed to help with pain and inflammation. Has anyone else tried this?

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@beku

I’ve been continuing to search for some help for post mastectomy pain syndrome. I had 7 surgeries after a bilateral mastectomy because of an infection and radiation causing my skin to be compromised and not able to heal. I now have one implant and a gnarly scar. The pain and itching are extremely uncomfortable. I’m taking 300mg of gabapentin but don’t like the side effects. I’ve recently had some acupuncture tx and massage which have helped. I’m exploring medical marijuana and found a lotion containing THC that seems too be helping with the pain. I’m going to try a combo of THC and CBD that is supposed to help with pain and inflammation. Has anyone else tried this?

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My husband has a Stage 4 cancer of unknown primary (in other words they don't know what type of cancer it is). He has started on medical marijuana (CBD and THC) for inflammation due to the cancer and also due to severe foot pain (caused by a previous injury). It has only been 9 months but…..he continues to use the Gabapentin for pain with some relief…..and his tumor has shrunk, the overall cancer activity is going down and his pain is much better due to the combo of the gaba and marijuana. It's too early to tell but he has found relief from the pain. I'm hopeful that we might someday be helping our oncologist write a paper on the positive effects of CBD and THC on marijuana progressions ( ha ha). He uses the capsules and chewables at night just before sleep and it hasn't interfered with his daily routine. As a breast cancer survivor I am seriously considering using marijuana as a preventative as well. There are few overall studies as to the positive effects of THC and CBD because of the illegal status of the herb nationally, but there is an interesting study by the National Institutes of Health you might look at. There is some scientific evidence to suggest it has positive properties for both inflammation and cancer. Hugs.

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Thanks so much for this information!! I can’t get edibles where I live but I can get tinctures of a CBD and THC combo. I hope you can help your oncologist write a paper about CBD and THC benefits for cancer patients!! I will look at the info on the NIH site. I had breast cancer in 2012 and had a partial mastectomy. But after testing positive for BRCA2 I had a bilateral in 2016 to prevent a recurrence. I’ve had many complications including post mastectomy pain syndrome. I still have my ovaries and because I took Tamoxifen, my uterus is pre cancerous. So the recommendation is for a full hysterectomy. I’m dreading more surgery after the 7 I’ve had in the past two years but I also don’t want cancer again. At my appt wiith my gyn oncologist next week I’m going to ask about CBD/THC for pain and prevention. I’m so sorry about you and your husband suffering so with this awful disease. I’ll pray for you both.

Liked by cindylb

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@beku

Thanks so much for this information!! I can’t get edibles where I live but I can get tinctures of a CBD and THC combo. I hope you can help your oncologist write a paper about CBD and THC benefits for cancer patients!! I will look at the info on the NIH site. I had breast cancer in 2012 and had a partial mastectomy. But after testing positive for BRCA2 I had a bilateral in 2016 to prevent a recurrence. I’ve had many complications including post mastectomy pain syndrome. I still have my ovaries and because I took Tamoxifen, my uterus is pre cancerous. So the recommendation is for a full hysterectomy. I’m dreading more surgery after the 7 I’ve had in the past two years but I also don’t want cancer again. At my appt wiith my gyn oncologist next week I’m going to ask about CBD/THC for pain and prevention. I’m so sorry about you and your husband suffering so with this awful disease. I’ll pray for you both.

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All Marijuana is legal where we live in Colorado and it's been so good for so many. I hope they will start legalizing at least the medical everywhere soon. I think the tinctures should work. From what I know (not that much really, still studying this), the CBD is the part that works well for pain and inflammation (the THC is the psychoactive part and the part that is often outlawed). Together (both CBD and THC) are what they feel works best for cancer prevention but CBD alone also has benefits. I am so sorry to hear about your uterus (sigh). Those hormones are so pesky. I don't blame you for getting tired of surgery. It makes us all so tired. But, removing all you can to keep the cancer at bay is such a strong motivator. I hope I won't have to do the hysterectomy at any point but…….I often imagine to make myself feel better that it's just like getting to be a young girl again without all the trials and tribulations of hormones and all that go with it. You get to be a 7 year old girl again, ha ha……..Hugs and keep me posted if you have time and energy. We'll include your success in the paper our doctor will be writing!!

Liked by Jamie Olson

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Hello…
On September 15, 2017 I had a left side mastectomy with 27 lymph nodes removed. I underwent 6 months of chemo but no radiation. I definitely have lymphedema. My arm is not enlarged but my armpit feels like it has a metal claw clamped down on it 24/7. I have significant numbness to the area below my armpit and around to my back. I try my best to do self lymphatic massage and breathing exercises to manage the discomfort but this is different from the pain I have at the my incision site.
I have been diagnosed with Post Masectomy Pain Syndrome brought on by damage or disruption to the nerves at my incision site. One year plus post surgery I can not wear my prosthetic. Anything remotely touching my skin at my incision site is very painful and sensitive. Wearing a bra is an extreme challenge.
I have had physical therapy, acupuncture, and massage with no positive results. I have been taking Gabapeten and Nortriptyline for 4 months, again I am seeing little relief. I am now working with the Pain Management Dept to next try an intercostal brachial nerve block. I think the lymphodema I’ll always have to self manage but this nerve damage pain is another story.
I will report back after I have undergone the procedure. Hope to have some encouraging news to share.

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@stansgal

Hello…
On September 15, 2017 I had a left side mastectomy with 27 lymph nodes removed. I underwent 6 months of chemo but no radiation. I definitely have lymphedema. My arm is not enlarged but my armpit feels like it has a metal claw clamped down on it 24/7. I have significant numbness to the area below my armpit and around to my back. I try my best to do self lymphatic massage and breathing exercises to manage the discomfort but this is different from the pain I have at the my incision site.
I have been diagnosed with Post Masectomy Pain Syndrome brought on by damage or disruption to the nerves at my incision site. One year plus post surgery I can not wear my prosthetic. Anything remotely touching my skin at my incision site is very painful and sensitive. Wearing a bra is an extreme challenge.
I have had physical therapy, acupuncture, and massage with no positive results. I have been taking Gabapeten and Nortriptyline for 4 months, again I am seeing little relief. I am now working with the Pain Management Dept to next try an intercostal brachial nerve block. I think the lymphodema I’ll always have to self manage but this nerve damage pain is another story.
I will report back after I have undergone the procedure. Hope to have some encouraging news to share.

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I will be very interested to hear the results of your procedure and wish you good luck. I had a bilateral mastectomy in 2002 with lat flap reconstruction (uncommon now) and 11 nodes removed on one side, chemo, no radiation. I have been uncomfortable since day one and it has never changed. Tightness in a band all around my chest, jabbing in my armpits, all 24/7. I tried gabepentin, lyrica, now take a bit of topiramate but nothing helps. I finally was diagnosed with intercostal neuropathy, which is much like what happens to amputees but surgeons deny the existence of it in mastectomy patients, or at least they did. Maybe times are changing…I hope so.

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I have been dealing with post mastectomy pain for 12 years. I had a bilateral mastectomy with tissue expanders. My plastic surgeon couldn't understand why I was still complaining. I felt like I had a very tight bra on at all times, lots of pressure. He sent me to a pain specialist that did not help very much, I tried intercoastal nerve injections, acupuncture and chiropractor. I went to a another plastic surgeon who was no help. I finally decided to have the implants removed but first I went to a neurologist. He told me he didn't think removing the implants would help. He put me on Lyrica and cymbalta and at last I got some relief. It is not perfect but better. I am now trying myofascial release with a physical therapy. She explained the fascia that surrounds our muscle contracts after surgery sometimes and irritates the nerves. I have been going to her for about 4 weeks and I think it is helping but at I am willing to try anything at this point. I was taken off of Lyrica and put on a long acting gabepentin but it was so expensive so I am now just trying to take the gabepentin with the cymbalta and see if I can live with that. I hope all who are suffering from this get some relief.

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Hi my name is Allison and I was diagnosed with invasive lobular carcinoma. I had a bilateral mesectomy with reconstruction and an axillary dissection with 0 nodes testing positive. Then I had chemotherapy and radiation. My implants hurt so bad that I finally took them out. I recently had several neuromas taken out of my chest wal. My chest feels like I am wearing an iron bra. It hurts so bad. I’ve tried acupuncture, pt, ot, pumping, acupuncture, kt tape, ice, pain meds oh and cpd oil. This list goes on.. does any one have the same problem? Can anyone offer help? Does the Mayo Clinic treat patients like me?

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Hi @bowhunt1969,

I moved your discussion and combined it with this existing discussion on Post Mastectomy Pain Syndrome so that you could meet other Connect members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members.

Here’s some information from Mayo Clinic about “Coping with Pain after Breast Surgery"
https://www.mayoclinic.org/tests-procedures/mastectomy/expert-answers/pain-after-breast-surgery/faq-20058049
I also want to mention that Mayo Clinic breast surgeons are leaders in breast cancer and breast surgery research. You can watch surgeons discuss breast cancer surgery, mastectomy with reconstruction, post-surgery pain and much more, here:

Allison, If you would like to make an appointment at Mayo Clinic, you can call one of our appointment offices, or you can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments

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@ensupar

I have been dealing with post mastectomy pain for 12 years. I had a bilateral mastectomy with tissue expanders. My plastic surgeon couldn't understand why I was still complaining. I felt like I had a very tight bra on at all times, lots of pressure. He sent me to a pain specialist that did not help very much, I tried intercoastal nerve injections, acupuncture and chiropractor. I went to a another plastic surgeon who was no help. I finally decided to have the implants removed but first I went to a neurologist. He told me he didn't think removing the implants would help. He put me on Lyrica and cymbalta and at last I got some relief. It is not perfect but better. I am now trying myofascial release with a physical therapy. She explained the fascia that surrounds our muscle contracts after surgery sometimes and irritates the nerves. I have been going to her for about 4 weeks and I think it is helping but at I am willing to try anything at this point. I was taken off of Lyrica and put on a long acting gabepentin but it was so expensive so I am now just trying to take the gabepentin with the cymbalta and see if I can live with that. I hope all who are suffering from this get some relief.

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Another long term sufferer, but I have you beat by two years, not a distinction I enjoy. I have been so frustrated trying to get care for my PMPS and it is at the point where I am almost completely disabled. I first had a left side lumpectomy in Dec. 2002 then full left side mastectomy in 2009 followed by six weeks radiation. What luck, all bad, I had two tumors located on the outside left quadrant, one on top of the other and I have pictured lots of digging going on plus removal of lymph nodes. I suppose I had a normal recovery but had already been fighting neuropathy from my previous lumpectomy which had been done in same location but left only three clean margins. It wasn't too long before the PMPS increased with serious Intercostal neuralgia. I was receiving injections every three months and they helped and I was on an anti-inflammatory, anti-depressent, and opiate pain medications I also have severe Degenerative Disc Disease so that was and is a huge contributor to my problem. While my healthcare was at UCSD my post mastectomy pain was treated but since I am now on Medicare even with an Advantage HMO I have been almost ignored. My pain specialist (joke) wouldn't even perform an exam, I had to pull up my shirt to even get him to acknowledge the issue. I am in so much pain it hurts to breath and the referred abdominal pain is absolute hell. I had lidocaine patches that helped but now the insurance company won't pay for them. I really am desperately seeking help so let me know as your treatment progresses, I hope you have success. I see a neurosurgeon next week regarding possible back surgery and I am going to see if he can help me with this too or I have to go thru the hassle of getting a referral from my primary then hoping insurance will approve it. Poverty sucks and I am poor but just not poor enough for Medicaid and at 75, Social Security is all I have. Hopefully more help will be available for us soon, we have been ignored too long. This disability goes right along with the MeToo Movement, mostly affects women so not a top priority maybe. Keep me informed. 😼 🙏 💞

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@dlw0221

Another long term sufferer, but I have you beat by two years, not a distinction I enjoy. I have been so frustrated trying to get care for my PMPS and it is at the point where I am almost completely disabled. I first had a left side lumpectomy in Dec. 2002 then full left side mastectomy in 2009 followed by six weeks radiation. What luck, all bad, I had two tumors located on the outside left quadrant, one on top of the other and I have pictured lots of digging going on plus removal of lymph nodes. I suppose I had a normal recovery but had already been fighting neuropathy from my previous lumpectomy which had been done in same location but left only three clean margins. It wasn't too long before the PMPS increased with serious Intercostal neuralgia. I was receiving injections every three months and they helped and I was on an anti-inflammatory, anti-depressent, and opiate pain medications I also have severe Degenerative Disc Disease so that was and is a huge contributor to my problem. While my healthcare was at UCSD my post mastectomy pain was treated but since I am now on Medicare even with an Advantage HMO I have been almost ignored. My pain specialist (joke) wouldn't even perform an exam, I had to pull up my shirt to even get him to acknowledge the issue. I am in so much pain it hurts to breath and the referred abdominal pain is absolute hell. I had lidocaine patches that helped but now the insurance company won't pay for them. I really am desperately seeking help so let me know as your treatment progresses, I hope you have success. I see a neurosurgeon next week regarding possible back surgery and I am going to see if he can help me with this too or I have to go thru the hassle of getting a referral from my primary then hoping insurance will approve it. Poverty sucks and I am poor but just not poor enough for Medicaid and at 75, Social Security is all I have. Hopefully more help will be available for us soon, we have been ignored too long. This disability goes right along with the MeToo Movement, mostly affects women so not a top priority maybe. Keep me informed. 😼 🙏 💞

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The only thing that has never been mentioned on this site that a plastic surgeon suggested and was willing to research for me was Botox. I never pursued it but he is highly regarded in my area and was trying to brainstorm as to what might work, knowing how difficult it is to treat. It was at least ten years ago, he knew it would have to be large amounts and wouldn’t be a long term fix, but I have recently thought about returning to him to discuss current thoughts about it. Some of you may be interested in asking about it as it is used so much more now.

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@cindylb

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).

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@cindylb I was reading through this post to see if anyone mentioned itching. I had a bilateral mastectomy 11 months ago with no reconstruction. I have healed nicely. I had 23 nodes removed so range of motion was an issue but PT helped. However. I continue to have intense, deep itching sensation in my chest particularly when I am laying down. Doctor and surgeon have no explanation for it other than healing nerves. Id love to know if others experience this and if anyone has any techniques for dealing with this.

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