Post Mastectomy Pain Syndrome (PMPS)
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Hello ladies,
today is one year since I felt lump. I ignored it for almost two months thinking it would go away. In March I was diagnosed with IDC and beginning of May I had double mastectomy with DIEP. Some pain after but not significant. Since surgery I would have some shooting pain from time to time. Yesterday I saw my onc and everything was fine. Since this am my breast that had cancer is somewhat painful. Not pain that You have to take meds but like something is there bothering me. If I do not think about it I do not feel it. I cannot explain. First I thought I had bra that was maybe on the smaller side, then maybe is from exercising. It is not red, no lumps to feel. Just something that is bothering me. Maybe reminding me it has been a year. I am not making sense. Just had to write it.
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Hi, barry, I know you are struggling between what's atrue choice and what's a false choice. And I know you're tempted to just let that little tumor lie. But please remember, a slow growing tumor is still a growing tumor. It becomes an issue of qulaity of life vs quantity of life. And who knows what that all translates to be.
I would think if you do recon, you're better off with your own tissue that with foreign bodies like implants. I know there's no gurantee about getting PMPS, but given your CRPS history, you certainly are at much higher risk.
How on earth do you make this decision? I certainly don't envy you. My best advice is once you examine all potential options, make a choice then don't look back and second-guess yourself. (There are enough people who will do that second-guessing for you, LOL!)
Best of luck,
Anne
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Barry,
In addition to a surgeon, why don't you get an opinion from a radiation oncologist about the need for radiation following a lumpectomy. My rads onc, who is a big cheese, said that most of the studies on recurrence were done when they were not as fussy about clean margins and that with a clean margin, your statistics following a lumpectomy would be different than the studies. It might be possible to have a lumpectomy without radiation. While it might not be a perfect solution,it just seems to me that it might be better than leaving the tumor in.
And get a second and even a third surgical opinion. It is not an insult to your surgeon---she should be used to this. There is a reason that medical insurance will pay for a second and even a third surgical opinion---doctors do differ in their ideas. It is your decision, not hers, and you should feel free to get all of the information that you need.
Sending a hug while you make this difficult decision.
Mandy
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Hi Barry, I have been thinking about you and your almost impossible decision u have to make. I had a bilat 3years ago. I had dcis .
Initially when Deeds (hi Deeds) first started this thread the topic was pain and who had it and what to do about it . We were looking for other women we could connect with who would verify our "pain". Then, it kind of evolved. We wanted our Doctors to feel our pain too, and to provide patients with info about possible post surgery complications. While my Dr did tell me a few things I might expect after surgery, it was not enough info. I had no idea I might get PMPS. I had never heard of it. I was a perfect candidate for this because I have fibromyalgia, and adhesions from previous surgeries. I have had some sort of pain all my life,arthritis, bursitis and assorted aches and pins I am the PMPS poster child. I feel your pain.......I will always have the question of whether I would make the same decision had I been informed about PMPS.
The main thing I would say to you is ....don't do nothing. You have cancer, so chances are it will spread at some point. Since you have pain now there is a good chance the pain will also settle in the chest if you have a bilat. This kind of pain pain is most likly not "fixable"because the nerves have been cut and can not find a place to go
. As you have read on this thread, most of us have tried everyting to try to lessen the pain. I know I have done everything, physical therapy,pills and exersise to try to get rid of the pain, and nothing worked.
So, read all the advice we have given you and I am sure you will make the right decision. Love Barbara
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Hi Barry,
Today is Jan. 30th, so I hope what the decision you have made has been good for you. I will say extra prayers for you. It is a hard choice to make, especially if you are in pain already. I hope the best for you.
I have been in the same position as hipchik. I have had PMPS for 3 years and have tried everything. My doctor always encourages me to do Yoga, because it helped her mom with pain issues. I have been doing it faithfully and do enjoy it, but it does not help with the pain. Infact, it makes it worse, but sometimes when you enjoy something, you just have to do it just to make you feel good inside. Does anybody relate to that? It's like when I go snowshoeing with my son, I love it sooooooo much, but the pain is bad. I go, because I love spending the time with my son and it is worth all the pain. You just have to do it to try to make you and your family feel better inside somehow.
hipchik, I hope you can have some good days and that the rays of the sun can shine on you. Or the drops of the rain can soak into your skin and make you feel new. Or that you can enjoy all the different shapes of the snow. I understand your pain so much and just wish a good day for you.
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I have had fibromyalgia for 14 years and nothing compares to the pain and tightness in my chest post b/l mastectomy! I had a b/l mastectomy in May 2010 with tissue expanders and then reconstruction in August 2010. I was totally unprepared for this kind of pain. I was only expanded to accomodate 350 cc silicon implant bc I could not tolerate the pain. When I told my surgeon that I thought he should tie a brick to his testicles and then pump saline into them, he finally GOT IT!!!!.....lol...I now wear a sports bra 24/7 which provides some relief but it still feels like my skin is being pulled off my breast bone. I am not thrilled to be part of this "club" but very grateful for the support and information that is being shared. Thanks everyone....and Be well....
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Hello all my peeps. I was wondering how everyone is doing now?? I am the same,sigh. It must be close to spring up north, any tulips yet? I miss this thread, so come on everyone, lets keep complaining!!!!!!!!!!!! Luv, Hipp
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Hey Hippy!!!!!!!!!!!!!!!!! Something made me check "our" thread today. Must have been your post calling to me!!!! I miss everyone, too. It felt like spring up here yesterday but we have a Noreaster looming on our doorstep. Remember how New England does that tease thing in March and April? Well, happy April Fools Day -here's 6 to 12 inches of snow for you. Oh well, it will melt quick enough.
I'm sorry you're still in pain. I wish I could wave a magic wand and make you all better. My pain lasted around two years and is still slowly getting better. I am still in a bra 24/7 but I'll take that over the nerve pain any day. I also noticed recently that my foobs are less numb. Feeling seems to be spreading from the inside to the outside and has reached the mid point.I have these cool nipple transfer tatoos and now I can feel when I put them on.
I'm not sure if I updated you on the progress with PMPS education in Maine? There will be a conference for all nurses in May up here and the topic is PMPS!!!! Lesson learned - when you plant a seed you never know when it will sprout and grow. It might take months or years but don't give up hope. Also, at Brigham and Women's they now have a Physical Therapist meet with women before they are discharged from the hospital. Baby steps but so important.
Happy Spring and Love to all - Fog
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Hey Foggie, nice to see you again. Im so happy to hear about the nurses conference having the topic of pmps. Did u get them to use pmps as a topic or did they just do it??? I love the sound of the nipple transfer tats. Do they glow in the dark lol????????? The Brigham physical therapy meets are a great Idea. So glad to hear that.
Don't put the boots and snuggies away yet. But, before u know it it will be black fly season! I am coming to Boston in June to see my daughter. I might get to Maine, so maybe we can meet. Keep in touch. Love Hipp
Yoohoooooo , where is everyone else?
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Hey ladies glad I found this thread. I had my SMX in January and since then found a dull ache down my arm. Its relieved when I move (i.e. exercise, cook etc) but its definitely noticable when I am sitting still and on the computer. I do not wake up with it and dont feel it at all when lying down. Like Nikola its hard to explain to the doc. Its in my upper arm mostly almost like a pressure point....but when it gets worse it radiates up and down almost feeling like its ready to go numb but not quite the pins and needles.
When I ask my PS or BS I get different responses. BS says "hmmm...thats not a symptom of anything but if you want PT Ill write a script". PS says "thats nerve damage and it will get better...take some motrin".
Like some of you Id rather treat the problem rather than the symptoms...Im taking enough meds already!!! I never heard of PMPS so I was SO glad to come across this thread. Not a club I want to be in, but its good to know I am not alone. How is everyone doing? How long did you pain last (based on severity - I consider this a minor-moderate nusance right now)? Does it get WORSE?
Thanks
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I am 2 1/2 years since my BMX and I still have pain radiating down my arm. It is better in the morning but depending on what I do during the day it can get REALLY painful by the time I come home from wook. I now have LE and have had 2 bouts of cellulitus this just make the pain so much worse. Some days all I want to do is stay in bed and cry, But I know I can't, I need to work so that DH & I have health insurance.
I aslo have an open wound on my chest from the radiation scar boost. I am looking at having a scar revision done. But in order to do that, I have to have 6 weeks of hyperbarics. 4 weeks before surgery & 2 weeks after. Now after the second bout of cellulitus I have decided to go through with the treatent plan.
I definitely feel your pain. NJ
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Suebee - My PMPS was actually dx'd as CRPS (Complex Regional Pain Syndrome). I too stumbled on this thread when at the end of my rope and found comfort in the fact I was not crazy or alone. I found a great pain management doc who was able to find the right mixture of non-narcotic pain meds and after a few months my pain gradually decreased. I am now mostly pain free and have weaned off my pain meds. I really hope you find a doctor who will really listen and help you find relief.
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SueBee - I agree with o2b and wanted to add that I had the same kind of pain/numbness/burning on my left shoulder blade and down my arm into my hand after my bmx. Gradually the burning shoulder blade went away completely and then VERY slowly my arm and hand got better, too. I saw a neurologoist who said when a nerve is unhappy the symptoms can appear anywhere along its path. So for instance if a nerve in your chest was disturbed you could have problems in your arm. For almost two years it felt like a bone was trying to break through my left upper chest. Just relentless pain. So I assume that's where the problem was but probably will never know.
It's hugely frustrating when our doctors look at us like they have no idea why we're having problems. My daughter who is in medical school said she was NOT surprised breast surgery causes nerve damage. She had just dissected the chest muscles and nerves. That somehow made me feel better.
Your surgery was just a few months ago so give your body time, stay hopeful that you will have a full recovery and don't give up pursuing a diagnosis/treatment that works for you.
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Thanks ladies - right now its hardly more than a bother....I might take a motrin once or twice a week...which I guess is a good thing? Its nice to know Im not alone or crazy. And that the odds are that it will get better with time, Im getting tired of having issues that the docs dont really understand.
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Letlet, I have a similar problem and saw a pain doc who gave me Lidocaine patches. At night I cut them up and put them over my painful spots, wear them for 12 hrs, and then go 12 without. I was skeptical at first, but it actually HAS helped.
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Thats good the patches are working for u Kris. I am aredhead with very sensitive skin so I could not use them...sigh
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bumping for dragonflymary
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Hi all--looking for info re: post-mastectomy pain syndrome and upper back pain. I get about 2 good hours out of my back and then I have to lie down. My exchange surgery was Dec. 2010 so I should be more recovered by now, no? Any suggestions? Just wondering as this is really hampering my daily activities. Dragonflymary
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Bumping
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dragonflymary - I had my exchange surgery in July and it wasn't until this winter ... December, January, February that I could tell a difference in my pain levels. I didn't realize it ... but looking back ... I really think I had some PMPS going on ... I had pain in my left foob and all the way down my left side. I developed LE in my fingers and I saw an OT in the fall and she thought that my TE on the left side had rested/pressed on my ulnar nerve ... any work she did on my shoulder, in my upper arm ... I had nerve pain and tingling all the way down to my pinkie finger. I was in constant pain all the time ... it wasn't enough that I took anything but it was always there. It wasn't until it began to go away that I realized how bad it had been ... does that make sense? I was at work one day fighting with the copy machine and I stopped and had one of those 'aha' moments ... I was fiddling around with the machine and I didn't hurt. And I hadn't hurt that day at all. It's taken months for me to get better. I'm relatively pain free now.
I would ask your onc or your BS for a prescription to see an PT or an OT. They can work wonders! For me ... it was huge. I don't know about the other ladies on here, but for me, it really helped. But it didn't help right away, it took TIME!
I do stretching exercises 2x a day and it helps keep everything loosened up.
Your exchange surgery ... in terms of time ... it really hasn't been that long ... 4 months ... 12 weeks ... that's not that long.
I hope things get better for you soon. Please ask your docs about a referal to see an OT/PT. They can work wonders!
Peace and prayers to you! xo
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Dawne--thanks for the input. I'm sorry you had so much pain for so long. I am seeing a PT as of last week. So far it hasn't helped much but I've only just started doing the exercises. I think I will ask her for some stretching exercises. So far I've only been doing some stuff to exercise my upper back. I'm just a little discouraged as I thought it would all be over by now. Wasn't expecting the whole thing to take so long. And I'm not a very good patient--I've done a lot of complaining! Thanks, Dragon
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It's interesting the BS does not mention any of these side effects. My BS said you'll be amazed at how quickly you recover from this surgery. Yes, I was back on my feet and moving around and I can't wear a bra and I get up in the middle of the night icing down my chest from the pain. It's so frustrating as they make this surgery as "some numbness" in the back of your arm, chest will be numb. Uhhh, did you forget the pain? I was released from BS 3 weeks after surgery. Drains came out and on to the M/O and R/O. I cannot imagine what rads feel like on this sore girl. Don't think so. Somtimes I think I would have taken my chances on the cancer than live through this every day. I'm frustrated the BS was not honest with me. She did not even mention the possibility of this pain.
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Rianne, so sorry you're having so much difficulty. It is true, the Drs. don't seem to know what to do with nerve pain. The PS told me I had it but didn't offer any suggestions or referrals on how to deal with it. I suspect they just don't want to get involved with anything that's long term. Surgeons like to be in, out and done. In general, our health care system doesn't do much for patients with chronic problems like that and they get referred around from one person to another until they finally find someone who can help.. I haven't found that person yet but will see how things go. It's disappointing that I can't do the stuff I used to do. Dragon
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Hello to Everyone
Just wanted to drop a line. I am 10 months after my BMX. I had chest sensitivity that was unbearable and I am finally relaxing and not in the kung fu mode. Dear God dont let anyone bump my chest. It has gradualy gotten better.... the numbness in my upper arms has also improved.
My BS told me I would be healed in 6 weeks. I told him HE LIED.
As an RN I am tossing out that any of you seek out referals for a Pain Mangament Provider for chronic pain issues. You will get in depth attention to your issues and someone that pays attention. It is so frustrating that BS/ PS just blow off so much suffering, and there is some serious quality of life issues going on for so many of us.
I found LE/ PT helped me so much with chest hypersensivity/ range of motion issues that cause pain if not addressed... scar release for the torment of Wire BRA!...and LE that is a whole pain in itself.... and of course none of this is real for so many Drs.
Hugs
Brazos
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Hello! I just wanted to send a huge thank you out to those of you that initiated this thread and added all the great information on this subject! I have been suffering from post mastectomy syndrome since my exchange surgery in 10/08. I had my bilateral with immediate reconstruction in 4/08 and actually felt better shortly after my surgery then I do now. I have been seeing a pain specialist,who has put me on just about every medication combination possible. The medications dull the pain but never relieve it totally plus they make me extremely tired. I have also been getting Dorsal ganglion root nerve blocks which help for about 1-2 weeks. I was feeling very depressed about not having any choices on how to improve my situation until I found this thread. I read the posts near the beginning that gave steps to help reduce pain. I found a Physical Therapist in my area who specializes in breast issues and lymphedema. I spoke with her and she said that she has had patients like me and feels that she can help. I am so excited for the first time in a long time. I again would like to thank you for taking the time to compile all the info that you have and puting it on this site. I can't wait until there is a day that I can have without suffeing with this constant pain. Keep up with the efforts to inform doctors of this complication to breast surgeries. I hate hearing that a mastectomy is not a big deal since it is all soft tissue and not involved like abdominal surgery. Give me a break! I wish I knew what I know now about breast cancer and surgery. I really appreciate your efforts to help women just starting out on this journey.0
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Pasha,I am in New York,too.Would you mind sharing the name and location of the PT that specializes in breast issues? Thanks!!
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Dear Pandazankar,
I am from outside Buffalo,NY. I am not sure where Oxford is,so I don't think that you are near to me. I used the links from the earlier pages on lymphatic trained therapists to find somebody near to me. I found the one outside of Buffalo and then there is a couple in Rochester. If you are near NYC then you have more choices. this is the one that I found:
Garrett, Tara S
PT, CLT-LANA
Western New York Breast Health
3915 Sheridan Dr.
Amherst, NY 14221 USA
Phone: (716) 632-7465I hope that this helps you.
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Here is the link to find a qualified lymphatic therapist:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
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Veggiegal, you pain sounds somewhat like what I have. I also have to take off the bra around dinner time. My upper back feels like I've been trekking on Everest with a backpack. I can have 1 vicodin a day and a boat load of ibuprophen. What is Voltaren? Does it help? PT seems to be helping but I've only just started. Dragonflymary
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The PS called it nerve pain, because of nerves being cut. I also have a shoulder problem that has really flared after this surgery--it's an old rotator cuff injury and now arthritis. I think I will ask for the Voltaren and see what it does. It can't hurt to try something. This whole pain thing has really kept me from doing stuff I used to do.
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