Post Mastectomy Pain Syndrome (PMPS)
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about the pain... I'm 4 1/2 years out and still have severe pain. BUT radio frequency ablation, AKA neurotomy AKA Rhizotomy has saved my life! I never slept longer than 2 hours before I had my first one April 2014. Now I am finally mostly pain free in between treatments. It literally saved my life. I had my entire funeral planned and after seeing the 11th pain specialist, he agreed to "try something outside of the box." They've done it for years for back pain sufferers. I simply have the nerves that were damaged by the bilateral mastectomy and lymphendectomy burned off where they come out of the spine. Thoracic Vertabrae facet joints T 2-5 on right side and T 2-4 on the left. It hurt like hell, but the prize is minimal pain for 6 months or so, however long it takes for the nerves to regenerate.
DONT GIVE UP! Keep going to pain management, specifically spine and nerve, until someone helps you.
Private message me if you want more details. Cyber hugs!
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Dear Warrior Princesses
I belong to a group of support for women with PMPS. We give support and we share information about POST MASTECTOMY PAIN SYNDROME.
If you are in pain, or maybe you don't know you have this syndrome, please send me a private message.
The MORE, the BETTER. Any woman can help you, or any other maybe your advice can help somebody.
Thank You!!The group's address is
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hello all, i am a long term Survivor 21 yr this yr, and i too had and still have some discomfort,But i was diagnosed with Fibromyalgia, which is what they called it, but it is due to cancer treatment, i am so happy to still be here and thankful. msphil( idc,stag2, 3 nodes, L mast, chemo andrads and5 yrs on tamoxifen)
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Would you want to join the PMPS group?
https://www.facebook.com/groups/759940397434876/?f...
Looking forward to see you there!
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msphil--So glad to hear from a 21-year survivor! Congratulations. I am sorry that you are still having discomfort, however.
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Glad there are people still posting here sometimes since I don't do Facebook.
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Yes--get right in there!! They'd probably do an MRI. That is a common area for tumors--the brachial plexus. I hae a tumor that keeps growing and sits on this area--major arteries and neres. They are inoperable, can't be radiated, and are considered seerely painful when they get big.
The last thing my new primary said to me last year was, 'How long has that tumor been on your neck?" 'Where?" "At your collarbone." I reached and felt it, then felt for the margins. I looked at him and said "Ohhh, shit."
Despite my history, he says to wait 6 months to see if it changes. I was in shock. The next morning, I called the office and asked for an order for an MRI stat. Sure enough, it warranted to be excised. Rad, the neck surgeon and my former onc were more concerned with getting paid and didn't think I needed to be fast-tracked... It took 5 months to get me on the table. By then it had tripled in size and was inoperable.
The rest is history. I was sent for a PET scan, and some areas lit up like a Christmas tree, where there was focal uptake. If you run a search for my posts today about pain and bone mets, there's more on the subject.Hope you get good news.
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ASCO News re: Treatment for PMPS
I have not been to this thread for awhile, so I apologize if this is "old" news. In the event it is not, it is worth pursuing as a solution to chronic PMPS pain. A non-surgical, non-invasive treatment and so simple if it works.
Deborah
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Deborah - that's a most interesting article. Thanks for posting. Jan
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I went to my Pain Clinic and they did this injections, but unfortunately it did not help!
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Hello fellow survivors. I would like to invite women with Post Breast Therapy Pain Syndrome (including: chronic chest wall pain, scar pain, arm pain, and/or neuropathy following breast surgery and/or radiation) to join the Facebook Post Breast Therapy Pain Syndrome support group: www.facebook.com/groups/265320... You are not alone. We have over 300 women in our group. All are welcome.
Here are some informational links regarding PBTPS:http://www.cancerlynx.com/pbtpspage1.pdf
http://www.cancerlynx.com/pbtpspage2.pdf
http://news.bbc.co.uk/2/hi/health/7844435.stm
Thank you : )
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I get lots of great info off of the FaceBook page that ReeseeB mentioned above and....
Another great FB page just started - Surviving Post Mastectomy Pain Syndrome - https://www.facebook.com/groups/759940397434876/
They are both a great support!!! and so many women to answer questions and support each other.
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SoniaToronto: How many times did they do this procedure?
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Thank you Whippetmom- Great article. That is my next step on May 22. The only question I have is that my Dr wants to do the T2 and from what I'm reading most do the T4 and T5, I believe. Do you know any thing about the difference in location?
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Sorry for the delay in responding....but no, I do not know anything about the differece in location. Something to discuss with your physician. Let us know if it helps!
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Just read this article from the NYT about PMPS - finally someone is taking it seriously.
Amy
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amy-I just read that and came on to post the link. It's about time.
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This is a good article as well. It is nice to see surgeons worried about our QOL
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First of all, let me say how sorry I am that you feel so lousy. What are you currently taking for pain relief? From my own personal experience, the last thing I would do is any kind of surgery. More surgery creates more scar tissue and that can make things worse. In addition to this, more surgery can make you at risk for infections.
I had a bilateral mastectomy 6 years ago with reconstruction/ deconstruction and I think I've tried just about everything from PT, trials with different meds, acupuncture. I currently take a combination of 450 mg of Lyrica, 60 mg of Cymbalta and OxyContin, 30 x2 per day. I can say that this combo takes the edge off but by no means am pain free. Some days are way better than others. I do try to exercise regularly like the treadmill, Pilates or a low impact toning. I've been battling the scale with the Lyrica! If anything, it helps me mentally.
Hoping that you find some relief!
Mary Lou Pavone
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I had a mastectomy Nov 2013 and had decreasing pain as time went on. After about a year I had pain very rarely. However in the past month or so I have been having constant, daily pain. Not the shooting zapping nerve kind...more like a constant deep ache and tightness, like my muscles are all clenched up. I thought I was having a heart attack! I notice also that when I wear a bra and prostheses it makes it worse. Does this sound like PMPS? Or should I be worrying about recurrence?
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Debic, so sorry to hear about what you are experiencing. I am two years post surgery and have found that I too am experiencing more pain but thankfully my bra and prosthesis seem to help me to feel less discomfort. What we are experiencing, in my opinion, is nerve damage and disturbance. My DH rubs my back and massages my scar area each night which I have found to bring much needed relief. Still, sleeping through the night because of enough pain to disturb me but not enough to seek drugs is slowly driving me bonkers. I am seriously considering getting message each week.
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Thanks for replying Honeybair, the worse is not knowing what is causing the pain. My surgeon acts all shocked whenever I tell him about pain. Even just two weeks after surgery his attitude was that I was the only patient he had that complained about pain !!!! And now, over a year later, he claims that nobody has pain this long after the surgery. So he wants me to do scans. I don't want to do unnecessary scans, but I just don't know if this is post mastectomy pain or some thing else.
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Deb - looks like you're almost year out from Rads & finished with Herceptin. If you haven't had any scans since you finished treatment, I'd personally be pushing for scans since I'm also a Stage 3 patient. I'm getting a CT w/contrast every 6 months & pushing for a PET once a year instead of just the CT.
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Thanks Minus. My MO does not do scans after treatment unless there are symptoms, and I was OK with that, for various reasons. But I guess pain is THE symptom, so I should be looking into it. I just don't want to, because I finished treatment not too long ago, and should they find anything, I am in no frame of mind to go back into any treatment !
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Debic, my surgeon also had a blase attitude when I complained about pain, but wrote me a prescription for Neurontin which I did not fill after reading all the side effects. If you are in pain at your surgical site, then my guess would be pain syndrome. You learn more about everything pertaining to this disease, treatments and side effects than any doctor is going to admit. Their major concern was saving our lives, no matter what we have to live with each day. I do hope you can find relief in some way from your suffering.
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thanks Honeybair !!
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Honeybear: Maybe we have the same surgeon - the 'Oh I only had one pt with this and she had some unexplained overnight recovery.' Yeah, like I believed him when he also did not know the origin of a burn on my side or who put the stitch under it. His reply was Neurontin which I am taking at 900mg/day with no side effects so far. Chest tightness and burning continues. My PCP agrees with the Neurontin and at least acknowledges the wide spread problem of various kinds of post surgical pain and that there really is no definitive explanation as to cause and treatment.
You are right about patients having more knowledge about pain than most doctors yet, as you say the pain drives one bonkers. Sorry you are having pain of undetermined origin.
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Thanks, magiclight. I use heat and massage for most of my pain relief. Some days the pain is less than others. Who knows why? All I know is that this disease and its treatments radically change our bodies.
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Honeybear: You are so right, this disease radically changes our bodies and I'll add that it does so in ways never imagined or for the most part not reported in the professional literature. BCO is one of the few places where the real story is not only reported but also supported by others with similar experiences. There is a poem by Danna Faulds in her book Poems from the heart of yoga that I have turned to in the past and find it again resonating with the life I'm living in this moment.
"In the willingness to feel there is healing. In the choice not to closet, cast aside or deny experience energy is freed and I dive deeper into life..."
BCO is a place where women are free not to closet their experiences. Thank you for sharing yours.
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hello Everyone,
I had my double Mast May 13, 2015 and have expanders in. I am full up to about 500ccs. I have a lot of pain. I also have chronic pain problems anyway for years, spinal issues, Radiculopathy and CRPS/RSD (Chronic Regional Pain Syndrome/Reflex Sympathetic Dystrophy). My pain management Dr. is trying tohelp me with everything given that he knows my history and he is now helping with managing the pain through the cancer/reconstruction, etc.
My question to all of you is, how bad is your pain? I know everyone is different but I was told after a fill you will be "sore" for up to 48 hours or so. Then some have said it is extremely painful. Well, I go with the "extremely painful" line. Do any of you ever get the pain in your BACK???? After a fill, doesn't matter a little or a lot I feel like I had the muscle pulls, then stretching, which I expect. But then it feels like I got speared through my breast, chest right out through my back! I can hardly life my arm. This time only the right one. Last time it was the left one. I can't sleep, it's so hard to breath deep. My sternum even hurts. I feel like I was beat up and almost stabbed to death by four or five men! I know I am exaggerating but that is how bad it gets. It takes about a week to calm down! Luckily I am filled to where I want but they have to do 2 more fills for the dr to have his extra room for the surgery??? Whatever. Just two more and I'm done. Then I am going to take a break for a while before I get the implant surgery. I REALLY need a break from the hospital and doctors!!!
Thanks for listening to my rant! Any responses about your experiences, especially back pain would be appreciated.
Teri
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