Post Mastectomy Pain Syndrome (PMPS)

Dontdoalnd, I took Gabapentin 3X a day for several months until my nerves calmed down. I also found a second PT who specializes in MLD massage, scar tissue massage, and breast cancer patients in general. The PT and Gabapentin helped me feel like myself again. (I did not have reconstruction, though) Best Wishes

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!

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)

msphil--So glad to hear from a 21-year survivor!  Congratulations.  I am sorry that you are still having discomfort, however.

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.

Deborah - that's a most interesting article. Thanks for posting. Jan

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 : )

SoniaToronto: How many times did they do this procedure?

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!

amy-I just read that and came on to post the link. It's about time.

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

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.

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.

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.

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.