Post mastectomy pain syndrome

New to this site & looking for help!!!
I have heard of this syndrome. A darn shame that American Cancer Society only acknowledges "may experience painful sensations after surgery." ReeseeB.....I am at the exact same place in life that you are! I am 15 months post-op bilat mastectomy. Fortunately no chemo, no radiation but the neuropathy is awful. Feels like a 2nd degree sunburn that has been scraped with a wire brush. Painful Burning, tingling. Can;t wear a cotton or silk shirt next to my skin. I understand studies are being performed but no one yet has identified any risk factors or treatment for long term pain relief.

Oct 2011 seems to be the latest posting I have found here. Is there a better way to search the posting by dates?

I have found a group on Facebook "Post Breast Therapy Pain Syndrome" this week. I call the affliction The Dragon. I have also searched medical sites for information. Australia, Scotland and Sweden have done research on this topic. Was formerly believed neuropathy was caused by chemo. Not so. Other countries are reporting that this is common in 40-70% of mastectomy, and some lympectomy, patients whether they received chemo, radiation, or surgery; whether surgery involved 1 sentinel node or removal of all lymph nodes. Doesn't matter if cancer was Stage 0 DCIS or Stage 4. HOWEVER, no one yet has a good solution or a clue regarding the cause. It is the typical topical anesthetic cream or Lidocaine patiches, narcotics, NSAIDS, massage therapy, acupuncture, "nerve" meds such as Lyrica. None of the studies have found a common set of risk factors either. Initially they said young, overweight, extensive surgery. I am 61, reg weight, and plain double mastectomy with 1 sentinel node removed Oct 2010. Had a lumpectomy July 2009; same symptoms with that.
I don't have a cure either but have learned to cope with the symptoms. I am like ReeseeB who posted Sept 2011. I have tried about everything. Initially wrapped an Ace around my chest as tight as possible; could stand this for about an hour. Sometimes I just went topless. Narcotics did not touch the nerve pain and Lyrica gave me a high and my brain did not function. I acted like a drunk. I asked my husband to form a stiff coat hangar into an oval, which I then place over my head, and slip under a stretchy t-shirt. It lifts the shirt off my skin. "The Wire" is my best friend. I had 8 acupuncture treatments and can stand to wear a breast form for several hours/day. Sometimes I last 3-4wks before I need another treatment. Some days a warm rice bag feels good. Other days I can wear breast forms and place a cold, not ice, pack between the form and my skin. I have 4 different types of forms; each day differs regarding which I can tolerate. So I either wear something very tight which compresses the skin, or just a t-shirt with The Wire. I can touch my skin with my hand. It doesn't hurt or burn. Let silk, cotton, even a cold breeze....and The Dragon is released.
Again this neuropathy is not new news. Painful skin sensations are very old news, especially when you are the patient. Wish they would find a cause and a cure.

Hi Ladies,

I have suffered from PMPS for probably about 5 years now.....but I just found out what it is YESTERDAY! All these years I've been freaked out that I was having a recurrence and that the cancer had spread to my bones. I've gone to see my oncologist periodically in a state of panic, and they've reassured me that it's neuropathy, but until I did a google search yesterday, no one has told me that this is common and, indeed a real syndrome. My pain is tolerable, compared to what I have read that some of you endure. Now that I can let go of my fear, I feel SO much better. I have had some relief with Gabapenten, and occasionally have to up my dose.

I just think practitioners should let women know that this is a real syndrome, and that LIFE GOES ON and let go of your fears that this is a recurrence....

I really don't know, Sadie... I have pretty much no feeling whatsoever, but I think this is more or a chronic pain than one that happens every now and again.
Congrats on 11 years!
BEV

Beacher said...
Hi Ladies, Glad i found you but sorry we are all here. I wanted to know if any of you had ever gotten an MRI in search of the problem? I am scheduled for one tomorrow and do not want to get too excited waiting for the results if nothing can be scene with this either.

I am new to this site so hope I am doing this right. I am very interested in this topic. As I too suffer from pain. I had my left breast removed Dec 26, 2008. And my right breast removed March 2009. I had my right shoulder operated on right before my initial diagnosis. And since there was no cancer in my right breast, I opted for a later surgery. I have the pain that is described on this site, and have had since my initial surgery. My surgeon tried everything and eventually sent me to a Pain Management Doctor. I will not tell someone to not try this, but it was not for me. They put me on a narcotic pain pill. Which meant monthly visits to get a hand written script for my pharmacy. And even with the strong pain pill, it only took the edge off the pain. I was never pain free. I am in the process now of going off of the pain pills. And I must say it is not any easy thing to do. I gradually decreased my dose and am happy to say in one week I will be off this med. Granted my pain has increased. But I guess my plastic surgeon was right when she said "This is your new normal". I always hated that saying, but she was right. I must add that I had reconstruction that I probably would not have knowing what I know now. My surgeon said 20% of his patients suffer the pain that I described. And the pain that I read about on this site. I also tried the physical therapy with no luck. At this point I am willing to try anything but a pain pill. I have a clearer head now and want to keep it that way. If anyone has any suggestions, please reply. I didn't see this as my life, but I can say I Am A Survivor!!

  girlfriday317

just read your post re: post breast mastectomy pain. I had bilateral mast. oct.21,2011. had 3 chemo treatms. could not have 4th. I tried arimidex, tamoxafin and the last aramosin(spelling) could not tolerate the side effects, including severe chest pain. all my docs said I shouldn't be having any pain!!! just had my last visit with an oncologist in Pittsburgh yesterday, and I will not be having any more treatment, anti cancer drugs. I still have lots of pain and some days are worse than others. I guess this my "new norm" I was on pain meds a year ago and weaned myself off them. now use advil and biofreeze gel. I too tried capazium but it burned. from your post I will try it again.

noteworthy the specialist was of no help other than to say, yes you can have pain! got a script for PT of the chest wall.

any input will be appreciated

God bless you all

sam10

I have this pain as well. Just had bilateral mastectomy about a month ago, and when I tell them that the pain is intense and not relieved by pain medications thus far they say I shouldnt have pain. Its an extreme hard, tight binding feeling that just increases and increases as the day goes on and never really goes away. Its hard learning you have cancer, rushing into surgery to remove it and doing everything you are told you must do to be better, feel better, but when you try telling them you are in pain it shouldnt be dismissed. It should be addressed. I have to return for tests and treatment tomorrow and will be armed with many of the comments that I have found here. This is a real syndrome and it should be addressed, there have to be answers, it seems the real challenge is going to be getting the "doctors" to admit its real and that our complaints are not requests for drugs or sympathy,we want relief, just relief, simple as that.

Post Edited (misspeggy1953) : 7/16/2013 11:02:21 AM (GMT-6)

Above poster here: by the way, this happens in one in a million cases, so don't worry that you had an unnecessary mastectomy!

Hi I'm new to this site but not to this pain. Had left mastectomy 2009 with recon that had to be "dismantled" because of infection. The pain was unreal, and until everything resolved (six months) I had no idea even where the pain was coming from. My PS told me "you're going to make you crazy...and me crazy if you continue to come in so often". I believed him and did not return for three weeks but it was torture. Not that he gave me any relief. But i didnt know where to turn, driving hurt so bad, could have anything touch my left trunk/chest, only one boob and no way to disguise that thank goodness I'm small and slim. For three years even my onc told me that this procedure just hurts, i.e., stop complaining? Have tried many things most haven't made a dent, but for me a cold pack on chest, sitting in a comfortable chair, wearing silky pjs, and 2-4 mg dilaudid taken together is the only relief I get once the pain sets. Things that set off the pain are wearing a prosthetic**my version see below** even for 20 minutes while in a car, in weather that elevates my body temperature. I.e., getting into a parked car in a parking lot in summer. That does me in. Stress is real bad and any combination of the above is a killer. So I try to do all my driving together, keep body temp even, wear prosthetic as little as possible. I do take the dilaudid if I need it, 1-2x per week. Am really trying to have better control over my day, work out, and pace myself so as to not take pain killers. But i do appreciate that they are the only real help I have when it's bad. ***if anyone else can't stand to use a prosthetic, I found an easy way to sew snaps on a very light cami to snap on these very soft light bra cups I purchased online. I snap them on the outside of the cami and then wear my shirt over. Not perfect but works In a pinch.

I feel that PMPS is a travesty, a dirty little secret that the cancer soc. doesn't want outed so that women will continue to come forward with early detection.
Not fair to us. Most people believe all the celebs on tv that are better than ever after bilateral and boob jobs, that a mastectomy is almost nothing at all, and we suffer in silence. Where is the money being funded to find a cure for this?
I did not even know this had a name until my pain doc changed a few months ago and she told me.

In addition to the silky pajamas, there is a sports line of clothing that makes "dri-fit" tops--they are wonderfully comfortable--very light on the chest and very cool during the summer. If anyone has pain on the back of their arms from lymph node removal, there are patches made of lidocaine that work wonders!

I was well aware of the possibility of Post Mastectomy Pain Syndrome and discussed it at length with my breast surgeon as well as my plastic surgeon before my procedure. My anesthesiologist was aware of it too and said it's being studied more often now that more attention is being paid to breast cancer survivors. For so long many of us didn't live long enough. Now that medicine is keeping us alive longer, we are demanding that our quality of life issues be addressed.

Research this on REPUTABLE websites like MD Anderson, Johns Hopkins, and Mayo Clinic. There is a lot of info about it and what doctors are doing to prevent it and treat it.