Post Mastectomy Pain Syndrome (PMPS)

magiclight

I agree that people need to be as informed as possible re: treatment options. However, I do not agree that patients are to blame for doctors who are too often lousy at communication. They are trying to sell you on the procedures they perform and then when the outcome, in my case, PMPS, they claim ignorance of its prevalence. Additionally, everyone does not get paid time off work to visit many doctors and some people do not understand the medical lingo. Prior to surgery, I reviewed the major hospital sites information about my planned surgeries and did not find any information about PMPS as a highly likely potential side effect. Even on this site, when I looked at the comments to people preparing for surgery was unable to find anyone who suggested asking the drs about PMPS.

PMPS is, according to the doctor listed on the opening page of this thread, not a diagnosis until 3 months after surgery. By that time, if you are not have reconstruction, one is long past your surgeon being interested as long as your external surgical site is not the problem

Was anyone here given information about PMPS prior to surgery? If so, what was the information?

redhead403

I am a health care professional and no, no one mentioned it. I like to think that I am informed. Never saw it mentioned in any information I have read

Aussie-Cat

magiclight, my breast surgeon did tell me that some women get nerve pain after a mastectomy, especially when you have fibromyalgia like I do. I saw an anaesthetist beforehand and they put me on Lyrica the day of my surgery "for 2 weeks" to try to prevent it, but I got nerve pain anyway and am still on Lyrica a year and a half later. I wasn't told that Lyrica is hard to get off and can cause side effects when you try. I wasn't told that there are support groups or that it's called PMPS.

magiclight

Although I have not seen my surgeon since about 1 month post op when I learned about PMPS from online sources, I do send him a letter each new year as a reminder than he cannot deny knowing any of his patients have PMPS.

Aussie, My internist put me on lyrica, could not tolerate and switched to Gabapentin. Now am off that just because of its side effects. Symptoms the same on/off Gabapentin. I did see a pain specialist but no relief.

Here is what BC.org writes to inform pre-op patients

You may have "phantom sensations" or "phantom pain" in the months after mastectomy: As nerves regrow, you may feel a weird crawly sensation, you may itch, you may be very sensitive to touch, and you may feel pressure. Your discomfort may go away by itself, or it may persist but you adapt to it.

My interpretation about "adapt to it" means that there is no effective treatment for PMPS available. Also, note that that they call it phantom pain, not PMPS or neuropathic pain. When one gets a dx of PMPS then they can find this thread.

magiclight

Facebook is the place I go to for info/support on PMPS. If you are looking for it type: Facebook Post Mastectomy Pain in a Google search and it will come up. Joining Facebook is not so scary and I've seen dozens of other references to Facebook on this BC.org site.

magiclight

Some newer treatment explorations for PMPS that might be beneficial for the 40-50% post mastectomy incidence of this painful syndrome. Staying hopeful!

Serratus Plane Block

https://www.ncbi.nlm.nih.gov/pubmed/28079733

https://www.asra.com/asra-news/article/180/postmas...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC61579...

https://www.nysora.com/regional-anesthesia-for-spe...

magiclight

A continuing post surgical side-effect with the rates not decreasing; Postmastectomy pain syndrome (PMPS) is defined as a chronic (continuing for 3 or more months) neuropathic pain affecting the axilla, medial arm, breast, and chest wall after breast cancer surgery. An incidence of 36% or higher is important to consider.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC60681...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC47975...

Domzie30218

Hi All, the last couple of days I started experiencing some weird sensations on the top of my left boob (cancer side). It's a weird sensation, and it feels like it's on the skin (hard to tell with all the numbness). If I push down on it, it doesn't hurt, but when I slight graze my fingers in the area, that's when I feel it, almost like a sore pain as if it's a bruise or nerve pain. I can also feel it in the shower when water lightly taps on it. There are no lumps or skin changes but I am concerned since it's a new sensation that just started a few days ago. I'm 2 years and 5 months out of my bilateral mastectomy surgery so it seems odd to have a new sensation pop up. I've emailed both my MO and PS and neither seems particularly concerned and just told me to let them know if it gets worse-which to me doesn't seem particularly helpful.

Has anybody else experienced this? I didn't even know about PMPS until I started looking up what this could be. Thanks in advance!

megryan57

Hi Domzie, It doesn;t sound like PMPS it sounds like nerve pain. The chronic pain starts with surgery and doesn't let up for a long time. I'm 12 years out of my double mastectomy with immediate implants and will still get weird nerve sensations in and around that entire area. I also still think that anything around that area is surgery/cancer related. I'm not wrong! But over the years the docs seem unconcerned with these concerns as well. Not a great feeling to be dismissed when my fears are legit! Hopefully this is what it is for you as well:)

Ginger48

Hi Domzie,

It can be that some of your nerves are starting to regenerate in that area. It’s a weird sensation for sure. If you continue to be concerned about it then I would push your doctors to listen to your concerns. I have definitely learned to advocate for myself through this process. Don’t hesitate to trust your gut.

Domzie30218

Thanks Megryan and Ginger,

I’m pretty sure it’s nerve pain but definitely getting it checked out. My goodness, I hope that I get to a point where I don’t freak out because of every little thing! It’s so bad for my mental health

magiclight

Today I came across a story about Pete Eckert, a blind photographer and then linked to his portfolio where I found an image that visually describes my PMPS pain.

https://peteeckert.com/portfolio/neurologic-galler...

https://www.cnn.com/style/article/pete-eckert-blin...

WordGirl1968

Hello! I’m 17 days post-op from a bmx, no reconstruction. I would say that my pain is ten times worse than it was during the first couple of weeks and this is really throwing me for a loop. I’m experiencing several different kinds of pain: a constant ache across my entire chest and under arms, sudden stabbing pains behind the incision, skin that is very tender to the touch along my upper chest, and a tightness in the incision that feels like I’m being squeezed by a very taut band. Would you say that increasing pain is normal? At first I was pleasantly surprised by the manageable pain of the first couple of weeks (nausea and fatigue from anemia were bigger problems) but now I’m in constant pain that is fairly excruciating. Both of my drains are now out and I saw the nurse practitioner on Thursday because of new swelling and redness on one side. She drew fluid from the edema and that has caused worse pain. I’ve been diligent about not over exerting but I’m not sure I can handle more pain. I’m taking alternating Tylenol and Advil during the day with Vicodin at night but it’s clearly not enough and opioids make me nauseated. Any advice would be greatly appreciated!! Be well, everyone.

MinusTwo

No I would not expect the pain to get worse. The rule of thumb is if something still hurts after 2 weeks, call the doc. You certainly should investigate further & yell louder so they hear you. If it's an infection, you need to be on antibiotics. It not - the root cause needs to be identified. Please do come back & let us know.;

I wouldn't expect that kind of pain to be from lymphadema. But it could be a side issue. Most docs either don't recognize or know much about lymphadema. You should get a referral to a certified, trained LEPT - not just an NP. Below is a link that has great information as well as how to find a certified LE specialist.

https://www.stepup-speakout.org/

WordGirl1968

minustwo: Thanks. I do have an appt with a pain mgmt doc on Nov 5, specifically to get certified for marijuana use. I’ll have to get a more comprehensive strategy before then, though. You are right.

MinusTwo

Yes you do. Pain management is one thing, but I don't think this much pain is normal. Good luck.

magiclight

Wordgirl, so sorry you are suffering so much this far out from surgery. I think Minustwo has a great point. Need to find out cause of your pain, and do shout louder. PMPS is not usually diagnosed as such 17 days post op. The sooner you can get to cause and treatment the better. Do come back to this tread with your follow-up news.

Rah2464

WordGirl I actually struggled the most about week four or five during my recovery. I experienced what I now know to be hypersensitivity. The pain was more of a constant "buzzing" - not an ache or quick zinging pain. Any garment touching me was miserable. I lived in my surgical compression garment for a long time until my nerve response quieted. As others have said, speak up loudly to see if there is an identifiable source of the pain (ie infection). Otherwise ask for help in desensitizing the area. My PS had me start with a very soft washcloth in the shower, transitioning to a dry wash cloth massage. She also had me use a mini vibrator in my pit where the lymph nodes were removed (I wound up having to get a cortisone shot in there it was so fiery). So there are some techniques/things to help but time and in my case compression will be your best friend on this one.

The tightness you describe I think is pretty normal. I know I felt like I had an iron bra on for a while.

WordGirl1968

thank you!! My surgeon just prescribed Gabapentin (he called on a Sunday morning, very sweet) for nerve pain but said that it can take up to a week to become effective. It’s so bizarre because I had such manageable pain for the first two weeks and now it’s awful. I’m very skittish about medication and its side effects. I didn’t have reconstruction (just “going flat”) and I wonder if the pain is worse because the incision is so tight across my chest.

RAH2464: yes, I can identify with the buzzing feeling but I’d also add a razor blade sensation. You are absolutely right that it’s much worse when it comes into contact with fabric. On my upper chest, several inches above the incision, it almost feels like a bad sunburn. Closer to the incision and around my former breasts is where the constant razor pain is happening. I’ve taken to hugging a pillow when I’m sitting and trying to stay super still. Of course, that runs counter to my need to start moving and doing gentle exercise in order to promote healing.

MAGICLIGHT: yes, I will report back about this. I’m seeing another pain mgmt doc this week and I also have iron infusions scheduled. I’ve been super anemic since surgery and I’m wondering if that’s implicated in my experience of the pain.

magiclight

wordgirl...again so sorry you are experiencing so much post operative pain that you need to be prescribed Gabapentin. Have you looked up that drug and its usages? Research as to causes and treatments are miniscule, so be prepared for a variety of treatments. Hope that gabapentin works for you even if you need increasing dosages.

I have been wearing the Breast Binder with Dri Release for 5 years and that does provide some relief.

Maybe the moderators have posted more current research and treatments that are not experimental but have demonstrated extensive effectiveness about this all too common side effect of cancer treatment.

Many of the PMPS users of this site have gone over to the Facebook Page --Surviving Post Mastectomy Pain Syndrome. Maybe the Mods can explain why that is.

WordGirl1968

MAGICLIGHT: Based on cultures from Thursday it looks like I have an infection that is likely causing the pain and swelling, both of which have only gotten worse. I’m starting antibiotics today and hope they kick in right away. Thanks.

MinusTwo

Good luck WordGirl. Keep monitoring things. It may require a different RX. Hopefully you won't have to end up with IV antibioics.

magiclight

wordgirl...hoping you move in right direction of feeling better. Hmmm Gabapentin rx before diagnosis of infection!!

WordGirl1968

yes, sounds not quite right! I could only take the Gabapentin for 3 days because it gave me horrible nightmares. As if I need that.

magiclight

wordgirl, I saw your post on another thread, so sending wishes that you get pain relief before starting chemo. (((Hugs)))

Rah2464

Wordgirl so glad you finally have the medicine protocol you need. I hope you feel better very quickly.

magiclight

I found this website for constrictive chest products that may help with PMPS pain. Unfortunately, they would not work for me because I cannot wear anything tight under my arms, thus have only found the Expand a band breast binder helpful. Note that they are designed for the Trans community, but hey may provide another source for products to relieve the side effect of breast cancer treatment

https://www.gc2b.co/

TectonicShift

What about pain nine years out from mx? I have little twinges and vague pain in the area of my mastectomy scar. Sometimes I think it's nerves regenerating or scar tissue just being scar tissue. Sometimes I have vague pains in what feels like the ribs. It scares me sometimes. But then I realize that I sometimes have pain in the remaining breast too and have my mammograms and so far no contralateral cancer.

Is pain far out from the mastectomy in the general area of the scar normal? Cartilage? Nerves? Bones?

I also had the full radiation treatment on the ribs nine years ago. Can radiation pain linger?

Just random thoughts this morning as I monitors the twitches and twinges and tightness and yes slight vague pain in my chest.

Castigame

I thought I was abnormal regards to PMPS. It has been full 3 yrs for treatments. I know I am blessed and feel blessed it is not legit strong pain per say but totally unexpected. It feels like some bug crawls on my chest and pricks whenever possible.

magiclight

PMPS continues 5 years out from my surgery. So many bad side effects from cancer treatments. My neighbor just developed diabetes and her MD said it was probably from her chemotherapy. My neuropathy is also a side effect of chemo. Intriguing that there are ever better treatments for the cancer, but there are essentially no treatments for the diseases that are caused by by initial cancer treatments. Feeling everyone's frustration.