Post mastectomy pain syndrome

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barkyboys
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   Posted 11/12/2011 9:45 AM (GMT -6)   
Link has been removed for the following reason: Primary purpose of the website link is to sell a product, not to provide information.

BEV

Mama Taz
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Date Joined Mar 2012
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   Posted 3/5/2012 12:55 PM (GMT -6)   
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?

barkyboys
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Total Posts : 1564
   Posted 3/6/2012 6:09 PM (GMT -6)   
To my knowledge, and I've been around here for awhile, this is the only thread related to Post Mastectomy Pain Syndrome. I had never heard of it before this thread started, and I've been around the field for 17 years now. What do you do, if you can't wear anything against your skin???

Sorry I can't be of help!
BEV
Bev
Breast Cancer forum moderator

Mama Taz
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Date Joined Mar 2012
Total Posts : 2
   Posted 3/7/2012 1:35 PM (GMT -6)   
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.

barkyboys
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Date Joined Jul 2003
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   Posted 3/14/2012 5:20 PM (GMT -6)   
Well, I guess if you go topless, they can't arrest you for indecent exposure if you've had a double mastectomy! :) Really, though, I am so sorry you are having to deal with this. My husband has fibromyalgia, and he's had the same reaction to Lyrica that you describe, and to Neurontin, as well. I really feel for you. There is no pain worse than nerve pain, and you're right... narcotics don't touch it, they just make you not care if you're in pain for a bit.

Glad you found a group on facebook that addresses it, although it sounds like no one has a clue what to do about anywhere. How frustrating! Awareness of the problem is the first step to finding a cure, I hope.

Hugs...
BEV
Bev
Breast Cancer forum moderator

Audrey in Oregon
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Date Joined Apr 2012
Total Posts : 1
   Posted 4/4/2012 7:51 PM (GMT -6)   
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....

Sadie2003
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Date Joined Apr 2012
Total Posts : 2
   Posted 4/17/2012 5:28 AM (GMT -6)   
I am post masectomy --11 years but every so often and now really intense have what I call "nerve pain or tingling" in the area where I have no feeling and it drives me crazy since I cannot relieve it--like an itch that cannot be relieved. I am assuming that it is what folks are referring to as "post masectomy" pain and seriously there is no relief or treatment???

barkyboys
Veteran Member


Date Joined Jul 2003
Total Posts : 1564
   Posted 4/17/2012 5:55 PM (GMT -6)   
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
Bev
Breast Cancer forum moderator

Sadie2003
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Date Joined Apr 2012
Total Posts : 2
   Posted 4/17/2012 9:31 PM (GMT -6)   
 
THANKS Bev,
 
I learned from this board about the Brachea nerve that runs across the chest and I think that is what was inflamed.  It seems that the Neurontin helped but I was worried about being out of it today at work.  It was helpful reading all the posts on this. 
 
Sadie

Estercita
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Date Joined Dec 2012
Total Posts : 3
   Posted 12/30/2012 4:34 PM (GMT -6)   
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. wink

Estercita
New Member


Date Joined Dec 2012
Total Posts : 3
   Posted 12/30/2012 5:50 PM (GMT -6)   
Hi Beacher, I hope everything is going well with your MRI, I think, MRI, are very clear and specific to tell you what is going on... however it is, you have to make the purpose to be strong., remember even when you are in a valley of darkness, do not be afraid, because the Lord is your sheppard, and He will guide you to the right path.  Please, do not be afraid, Have you ever see the movie "Life is beautiful"? , yes , indeed it is.... I do not want to see the quote that you do not want to live like this. remember you have to be brave and to know that "I can do all things through Christ who strengtheneth me"  Phllippians 4:13 .  Good Luck to you dear friend and Have a Healthy and Happy New Year! 

SusanRoseville
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Date Joined Feb 2013
Total Posts : 1
   Posted 2/16/2013 2:30 PM (GMT -6)   
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
New Member


Date Joined Mar 2013
Total Posts : 1
   Posted 3/26/2013 11:16 AM (GMT -6)   
I had a bilateral mastectomy with immediate tissue expanders in January 2013.  I had NO idea how bad the pain would be and I am a surgeon.  I still cannot lie flat and have to sleep sitting up.  When I lie flat, it feels as though Buffy pounded a stake through my chest and out to the other side where it is bolted to an iron cage which surrounds my ribs under my skin.  The WORST problem though was the feeling that my nipples were clamped by jumper cables and a constant current was passing through me.  The added tough was the sensation of acid across my entire chest from my first rib down to my eighth rib.
The thing that helped the most was rubbing Capsasin cream over large parts of my chest skin.  This hurts at first so take pain pill before you do it.  I applied capsasin five times a day for a week, then four for  a few days and so on.  After about one month the burning was gone.  It still comes if I am active but it rapidly retreats with just a drop of the capsaisin cream.  For the stabbing, I use Skelexin, much more effective than narcotics.  I still have acupuncture once weekly but I don't take any narcotics now.  The capsacin costs $2.00 and needs no prescription, you might want to try it.  My surgeons had never heard of trying it and I thought about suicide every day until I used it.
 

sam10
New Member


Date Joined Aug 2012
Total Posts : 13
   Posted 4/6/2013 5:58 PM (GMT -6)   
  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

pigtown
New Member


Date Joined Jun 2013
Total Posts : 1
   Posted 6/16/2013 9:18 PM (GMT -6)   
I'd love to know if PT helps. A nurse had suggested that I have PT but I haven't made up my mind just yet. It's been almost nine months since I had a bilateral mastectomy. I thought the pain would be gone by this time but it hasn't happened. Pain meds haven't really helped and I don't want to keep taking them anyway. PT sounds like a good option, if it helps.
Thanks.

misspeggy1953
New Member


Date Joined Jul 2013
Total Posts : 1
   Posted 7/16/2013 10:01 AM (GMT -6)   
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)


kalyn
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Date Joined Jul 2013
Total Posts : 3
   Posted 7/19/2013 2:26 PM (GMT -6)   
Along with all of the other users, I have never heard of post-mastectomy pain syndrome.  I thought I was going absolutely crazy because I was told by my doctor that I shouldn't be in pain after years of excrutiating pain.  In addition, my sister is a PA and she, too, told me that I shouldn't be in pain.  In fact, she flew me up to where she is to have a "great" plastic surgeon reoperate on me (and I listened to her).  In addition, my breast surgeon (original) is a complete liar.  I underwent the biopsy and it was positive for breast cancer.  My surgeon immediately recommended a bilateral mastectomy and I listened.  (I never went for a second opinion, which I greatly regret).  After surgery, I asked my surgeon for the pathology report and she said she didn't yet have it.  I waited until the follow up appointment and she claimed she still didn't have it, which caused me to wonder why she wasn't giving it to me.  After much hounding, she finally relented and turned it over to me.  I couldn't believe what I was reading.  The report stated that there was NO cancer in the tissue removed (both of my breasts).  I was devastated and heartbroken that I went through an unnecessary bilateral mastectomy.  I did retrieve the original biopsy (the actual tissue cells) and had it tested and it was positive for breast cancer.  By the way, I noticed on this post that it seems that small breasted women are experiencing more pain (or are posting more about it).  What is your experience?  small breasted or large breasted in those having serious pain?

kalyn
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Date Joined Jul 2013
Total Posts : 3
   Posted 7/21/2013 3:05 PM (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!

sam10
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Date Joined Aug 2012
Total Posts : 13
   Posted 8/24/2013 4:41 PM (GMT -6)   
Sorry I haven't checked this forum in a while. I did have PT and it helped a lot. still have pain but is better than before. my pain also gets worse as the day goes on. I'm not taking any pain relievers but advil. PT taught me how to massage the painful area and that also helps. So I would advise PT , another tool to deal with this problem
 
God bless all
sam10 

DebraV
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Date Joined Sep 2013
Total Posts : 1
   Posted 9/27/2013 7:42 AM (GMT -6)   
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.

sam10
New Member


Date Joined Aug 2012
Total Posts : 13
   Posted 9/29/2013 3:36 PM (GMT -6)   
thanks so much for all the helpful ideas! i should have thought about silky pj's. my onc told me he never met anyone with the pain i described and therefore i had no pain! finally swa another onc in pittsburgh, pa. and she said yes some women have pmbp and as you were told, just suffer with it.  I take 1/2 a pain pill if I want to go shopping or for a day with husband, family or friends. otherwise I cannot stand the pain. again thanks for the tips, only a handful of women have mentioned this problem with pain in this forum.
 
good luck to you and God Bless 
sam

kalyn
New Member


Date Joined Jul 2013
Total Posts : 3
   Posted 10/1/2013 10:56 PM (GMT -6)   
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!

Soniatoronto
New Member


Date Joined Jul 2013
Total Posts : 1
   Posted 10/27/2013 6:54 PM (GMT -6)   
Dear Ladies,
I am in the same pain which started one year after mastectomy. No radiation chemotherapy or medication, I am ERPR negative.
As one of the lady here mentioned the Facebook group, I also suggest you to join the group. Numerous tips, ideas and a lot of vent really helps.
The group is under this address https://www.facebook.com/groups/265320350156856/
and it is called Post Breast Therapy Pain and 179 women are in the same condition.
Sonia

sandra4611
Regular Member


Date Joined Oct 2013
Total Posts : 53
   Posted 10/28/2013 11:10 AM (GMT -6)   
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.

Japps
New Member


Date Joined Dec 2013
Total Posts : 1
   Posted 12/29/2013 1:57 AM (GMT -6)   
I'm so thankful I've found this thread. I've been dealing with this pain for several months. I'm one year post op. I had a prophylactic double mastectomy. Both my mother and sister had breast cancer and I was considered high risk.
At first my PS told me the pain would go away which it only got worse. I went back to my PS and was then told I had a torn muscle and it would take time to heel. I gave it time, I didn't do anything, I didn't lift or push anything.
The pain continued to get worse. I went back to the PS which is when I was told that the pocket that was holding my implant in... That is what was torn. WHAT??
I went for a 2nd opinion which is when I was told I had neuropathy, and referred to a pain management clinic.
I've received the pain meds, the injection blocks and still no relief. I'm at a loss.
I can't exercise, I'm unable to lift my arm without my hand shaking because of the pain.
I'm in constant pain.
Is this my life??
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