Topic: Post Mastectomy Pain Syndrome (PMPS)

Jan 19, 2010 06:04PM Deeds wrote:

Betty - I saw the acupuncturist only twice.  I asked her why some respond more quickly to acupuncture than others, and she that how LONG someone had endured that particular ailment made a difference, as well as whether they were relatively healthy, or had other physical issues that the immune system was working to maintain.  I'll go back two more times this week, and see if we can address the "tight girdle" sensations.

I'm sorry that you've not found relief with any other remedies. Perhaps recon will make a difference. Physical therapy seems to at least relieve some of the tightness, and can feel "comforting" if a good back massage can be included! (IF you can lie on your stomach!)

Jan 19, 2010 06:34PM Deeds wrote:

I'm usually somewhat of a skeptic with chiropractic or other alternative treatments, but found acupuncture successful years ago for a hand ailment (from cleaning teeth too many years), and more recently (3 years ago) with severe sinus headaches. So yes, Jessica - it has worked for me, but I'm hesitant to push it on others.We all respond so differently...

Very curious to hear if any other gals have done what you have coming up: switching out saline for silicone/alloderm. 

And...the duct tape analogy is a great one!  (I'm rather fond of duct tape, just not "there")

Jan 19, 2010 07:27PM Deeds wrote:

The 25% figure came from my cancer doc. My sister called and spoke with an anesthesiologist in the Pain Medicine Dept. at MD Anderson and this was her synopsis of that call:

 He is one of the doctors in the US who has done considerable study and work on the cancer pain issue and in particular, PMPS. He told me that it probably impacts more than 20% of women - possibly up to around 30% of women after mastectomy, lumpectomy and seemingly more so after radiation therapy. He said that it is not widely appreciated or understood by a number of care providers, who have been dismissive about the symptoms. Many care providers have the premise that it is something the patient just has to live with or deal with. He said that oftimes, symptoms do not occur until months or even a year after surgery or radiation and by then, the relationship with the surgeon or radiologist is over and the patient is left to ferret out what is going on and how to get relief on their own. His own wife is 44, has bc, had lymph node involvement, had rads and has PMPS. He said that there is no particular therapy or treatment that works for everyone, but he states that "physical therapy is widely underused" in helping with the syndrome. So PT seems key, but he says that it is important that the PT have a keen awareness of what is involved with PMPS. He mentioned seeking treatment through a lymphedema PT specialist as they are more uniquely acquainted with the pain distribution issues and also, even though there is no swelling or symptoms of lymphedema, he feels that patients with PMPS probably all have some lymphedema going on, along with the pain and discomfort they are experiencing. He said that a Scandinavian study was published in JAMA - I read it and so knew about it. However, all of the women tested had mastectomies but no reconstruction. He said that it appears that fewer women in Scandinavian countries have breast reconstruction after mastectomy. And in this study, it was closer to 30% in terms of women who developed PMPS at some point after mastectomy and/or rads. He said it is unknown whether breast reconstruction changes the percentages - whether breast recon might actually be of benefit and reduce the likelihood of PMPS.

Hipchik - you can Google "Post Mastectomy Pain Syndrome" and find several sites to browse.

Jan 19, 2010 08:05PM jessicav wrote:

Thanks Deeds!

 That is terrific info. you just sent to hipchick. I feel so hopeful about the idea of relief because I want my mojo back. Just want to feel human again...

Going to check into all of it. And yes my PS very nonchalantly told me 1. There was nothing that could be done.  2. That it could be nerve pain but there is no reason for it. 3. I am probably processing the pain in my head different than other women.???

I Never not once was told about Post Masectomy Pain Syndrome.

How does one find an acupuncturist that understands this...?

Thank you for sharing!

Jan 19, 2010 09:32PM hipchik47 wrote:

Hi again.  My breast surgeon really pisses me off.  She made it seem like surgery was a piece of cake.  I knew it wasn't, but I was never told of any after effects.  I had a seroma, fluid build up, and she sorta pooh poohed it saying it would go away. Well 2 drainings of tons of fluid later it did go away............5 weeks later.  And, as far as pain goes, not a word.  They should give u a list of things that could happen after surgery so u can be on top of it.  Deeds I did a google.  Now I feel like I am screwed. There is no cure, and I have had enough physica therapy to choke a horsel.  Well I do the best I can.  I just want to be able to enjoy my 3 year old grandaughter. 

Jan 20, 2010 02:43PM - edited Feb 10, 2010 12:13PM by fogandroses

Hi Deeds (and all women who responded) - I am so grateful for your post. Sorry this is so long but I wanted you to see the letter I wrote to my surgeons at DFCI in Boston last week regarding post mastectomy pain syndrome.

I have stayed in touch with both surgeons via telephone and email, asking them about my symptoms and NOT once did they suggest anything other than "your body is adjusting to the surgery, symptoms should resolve with time."  As Deeds mentioned, early treatment is key to recovery. I am surprised that at a top cancer center/hospital they didn't catch this. Here's the letter - I'll keep you posted on the outcome! If any of you have ideas on the best way to make recognition of PMPS part of the "standard of care" for breast surgery I'd love to hear from you.

Dear Dr.'s XXX and XXX,

I am addressing this letter to you since you performed my surgery and I believe you are in a position to effect a change in protocol at Dana Farber/Brigham and Women's. If you feel I should have included other recipients - please feel free to forward my message.

I hope we can work together to ensure that other women don't experience the pain and frustration I've dealt with since my bi-lateral mastectomies. I want my experience with Post Mastectomy Pain Syndrome to serve a purpose.

After 18 months of seeing doctors, researching and asking questions - I found this article that describes my symptoms: http://www.cancersupportivecare.com/surgerypain.html
as well as the JAMA article noted at the bottom of this letter.

I can't over emphasize what a relief it is to find this information and to know that doctors are now recognizing that many women experience on-going nerve and pain issues long after their surgeries.

A simple addition to the pre-op appointment would have saved me months of feeling adrift and might have offered earlier relief from my symptoms. As simple as stating: "Some women experience pain and nerve issues after breast surgery that become chronic. If after 4 weeks (or whatever time frame) you have the following symptoms (list symptoms) please call the Dana Farber Pain Specialist (specific information of who to contact to address symptoms).

Dana Farber/Brigham and Women's are world renowned; I know how lucky I am to have such outstanding doctors and facilities involved with my care. In the interest of continuous improvement, I hope we can make the road a little easier for women who endure chronic pain as a result of breast surgery. If I can help in any way bring this to fruition please don't hesitate to contact me.

Jan 20, 2010 05:24PM - edited Jan 20, 2010 05:30PM by whippetmom

RE: Shoulder pain:  Dr. Burton told me during our conversation that many women with PMPS develop "frozen shoulder" syndrome after mastectomy and that this is one of the complications of PMPS to watch for....

fogandroses...Good for you sending that letter!  We need to bring this topic and syndrome out of the closet!!!

Interestingly, Washington Hospital RECOGNIZES this as a valid syndrome and calls it a "newly recognized pain syndrome".....amazing...and it was written about and well-documented in 1998....perhaps earlier.....

http://www.whcenter.org/body.cfm?id=558137

Jan 20, 2010 06:04PM faithandfifty wrote:

I had my bilat last Fri. See surgeon tomorrow.

Thanks for the info.

There is a whole 'little' thread on frozen shoulder here on BCO or people's various experiences and the PT that have resolved most issues.

It is in the section for Women 40 to 60ish.

Jan 20, 2010 06:59PM Deeds wrote:

Note: after reading one of the JAMA abstracts (not the full article) it seems I was incorrect in stating that the percentage of women affected is roughly 25%....it's closer to 47%. Several other articles have indicated that it is far more common than we think. Note that in the JAMA abstract, it tends to occur in women who are in the age range of 18 to 39.  I'm 58. The JAMA website is below; perhaps fogandroses has access to the full article.

http://jama.ama-assn.org/cgi/content/abstract/302/18/1985

Jan 20, 2010 09:43PM Estepp wrote:

Thank you for the thread... I suffer greatly from this. I have stopped all meds now... and BOY did the pain resume. I start  massage next week and HOPEFUL acupuncture as well... day like today.. I would have KILLED for main meds....

I have also taken with MD about this.. also... Virgina.... this is a HUGE problem... I am just taking matters into my own hands...

I will read news on this thread . If I hear anymore I will post.

Jan 20, 2010 10:51PM jessicav wrote:

FogandRoses-

How are you treating your PMPS?

Jan 21, 2010 09:01AM BettyeE wrote:

As stated before, I suffer from this same pain.  I was told first that it would proably go away in a year or two!  Well thanks,,,,that is a long time.  It has been three years and the pain is worse.  I have been told it was nerve damage, pain left from shingles,etc.  I had one nerve block when they thought it was from shingles.  The nerve block in itself was very painful and I actually think the pain was worse after the block.  I did not go back for the other two blocks.

Bettye

Jan 21, 2010 02:12PM Beesie wrote:

Deeds, another "thanks" for starting this thread! 

A mastectomy is major surgery that permanently changes your body.  I find it very frustrating that so many people - doctors and many of the women here - don't want to think that there may be long-term implications to this.  There seems to be a belief that you have the surgery, you go through a recovery period (which for most is easier than they expect) and then it's all done.  For some, that is the experience, but for many of us, this is not the case.  Whether one has reconstruction or not, there often are longer term side effects from having had a mastectomy, both physical and emotional.

I'm lucky - I don't suffer from PMPS, except for the occasional feeling of tightness across my chest.  For the first 6 months after surgery, I had no problems at all.  But then the tightness started, and that's also about the time I started to have phantom itching. After 4+ years, it's not as bad as it used to be but I still get itching occasionally and there's nothing I can do to stop the itch - it's drives me nuts. 

I often see posts from those who just had their mastectomy and who rave about how much easier the whole process was than what they expected.   What they are saying is absolutely true, from where they are at that point in the process; I remember feeling exactly the same way shortly after my surgery.  Unfortunately the posts that discuss the longer-term implications are few and far between on this board.  And because of that, I worry that some women may be influenced to choose to have a mastectomy or a bilateral because they think it is a easy solution to quell their fears, with few if any implications and side effects.  So I applaud whenever there is a discussion about the side effects, as this thread is doing.  For those who have no choice but to have a mastectomy, it's good to know what to expect and to understand what may happen after surgery and over time.  For those who have a choice, it's important information to incorporate into their pro/con list as they make their decision. 

limegreen, since you had your surgery so recently and had a node removed, chances are that your pain is related to that.  Chest tightness after surgery is normal.  It's also normal to have numbness down the arm and pain in the underarm area after nodes are removed.  And as the nerves regenerate, you may feel very sharp pains down your arm.  That's normal, and that's not PMPS.  As for breast skin numbness, yes this too is normal.  For some women, it goes away over time (days, months or years) but for others the numbness remains long-term. 

Jan 21, 2010 02:53PM michiganmom wrote:

Hi Ladies,

Thank you so much for bringing attention to this problem. Like all of you, I stumbled around for a couple of years before I heard about PMPS. I went to multiple doctors and had multiple types of therapy. Like fogandroses, I go to a leading cancer center and almost all of the doctors there told me they'd never seen PMPS, never heard of it. That is so demoralizing when you ask the experts to help you and they deny your problem! Even more demoralizing that the problem is caused by cancer treatment, and you have no idea that it can happen!

I am now 4 years out and FINALLY have found a regimen that works for me. I am over-the-moon happy! I finally have my life back. It sounds like everyone needs to do a lot of trial-and-error to find out what works for them. It seems that treatments work for some of us, but not for others. Here's what works for me.

#1. I wear the Bellise compression bra, which is designed to treat women with truncal lymphedema following mastectomy. I do not have any visible swelling or other signs of lymphedema, but the Belisse bra has changed my life! I think the doc at MD Anderson is right on -- he suspects that there is some amount of lymphedema involved with PMPS. You can go to belisse.com to learn about the bra. It needs to be prescribed by a doc.

 #2. I see a PT who specializes in lymphedema, as suggested above. I've had several treatments with low-level laser. The treatments have been incredibly helpful. I got my life back after several years of screaming pain! Again, I don't have any swelling or other clinical signs of lymphedema, but my PT suggested that we try the low-level laser anyway. Bingo!! It's made in Australia and is approved by the FDA for lymphedema after breast cancer surgery. Just google low-level laser and Australia, and you'll find more info.

#3. I take very low dose of methadone, very low dose of amitriptyllin, low dose of lyrica and low dose of ativan. I went to the Pain Clinic several times and also to a Physical Med & Rehab specialist. Both were bad experiences for me and not helpful. I finally got hooked up with a fantastic oncologist and a fantastic palliative care doc, as well as an excellent psychiatrist who specializes in cancer issues. Together, they helped me find a combination of meds that really work for me. Very low doses, so I never feel zoned out.

#4. Tried acupuncture for six months and it didn't help. Tried energy healing and even became certified in Reiki. Didn't help. My oncologist finally told me to read "Full Catastrophe Living" by John Kabat Zinn. It offers wonderful meditation and relaxation exercises specifically for people in severe chronic pain. (The book on CD version was great for me; I don't think I'd have gotten the same benefit from reading the printed book.)

#5. Sitting too long still causes pain. Moving and standing is much better. Try NIA movement... it's free-form dance exercise. Worked wonders for me.

#6. I consulted a plastic surgeon twice and both times he told me that further surgery would not relieve the pain and could make it worse. You gotta respect a surgeon who declines to operate and gives you a straight answer. So I never had reconstruction. OK with me because I didn't want to take any chance of making the pain worse.

Hope this helps some of you out there. May you find pain relief strategies that work for you.

By the way, what's the name of the pain doc at MD Anderson. I'd like to write him a note and thank him for taking an interest in this hidden issue. 

Jan 22, 2010 06:27AM okiegal wrote:

Michiganmom, THANK YOU for your post! I visited the Bellise website and began reading some of the articles....I'm becoming more convinced that I have LE. Eventhough I complained about swelling under my arm to my BS and PS, no one really had much to offer. I don't appear to have any swelling other than that, but one of the descriptions really caught my attention, it reads:

QUESTION CORNER: FOCUS ON BREAST AND CHEST WALL LE

by Nicole L. Gergich MPT, CLT-LANA and Lesli Bell PT, CLT-LANA

Q. Are the symptoms of trunk edema different than arm edema?
A. Although lymphedema is usually identified by swelling, there are typically other symptoms that are present before the onset of visible edema. Altered sensations in the breast and trunk can occur prior to the onset of swelling. These may include, but are not limited to, pins and needles, numbness, aching, and diffuse fullness.(1) The location of pain or discomfort may be ambiguous, as well, and may be outside of the immediate surgical site. It is not uncommon to experience edema in the armpit, around the scapular region, along the lateral chest wall, or around and including a reconstructed breast or implant.

There's more information and more questions that are answered at the website. The above citation can be found at: http://www.bellisse.com/resources/articles/ques_corner.shtml