lymphatic fluid build-up in upper body months after surgery

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Cher56
Cher56 Member Posts: 187
edited June 2014 in Canadians Affected by Breast Cancer

Hi Gals.. sorry your here, but grateful to BCO & you too! so I had a bilateral mastectomy June 14,2012. I won't go into the long details of disgusting treatment from Doctors, but I did contract 3 bugs/infection, took my chest apart with it, miraculously I healed & with only a few weeks left to start chemo..horray! all is over now & i'm so grateful it's all over & done.. however.. I have so much pain from enourmous scar tissue is one thing, the fluid buildup is so incredibly painful!! My GP AND my MO did NOT know what the swelling/lumps/bumps were!! No tests or scans! Found a PT that specializes in post mastectomies/lymphedema ect., she's awesome and was able to massage to drain quite a bit, but a few hours later it's back. I cannot afford to go to her as MSP only pays $23 & 10 visits & I'm on disability & no financial help anywhere.. ok.. no the main prob. do you have same/similar problem? does it go away eventually? it's been 5 months since my chest has been closed up, so am I feeling like I'm being impatient? I have a New GP & he knew right away about lymphatic fluid build up. I've not yet asked him, but could the big lumps that are so painful be drained? I guess they'd just fill up again. Sure appreciate anyone with knowledge or experience. ps.. possibility of lymphedema happening....ugg! (PT gave me paper instructions how to massage... but I have a hard time doing it & not making much of a difference) Thanks so much!!

Cher - in BC

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited March 2013

    Hi, sounds like you have chest/breast Lymphedema, mind you the lumps have me stumped.Undecided If you have had at least one lymph node out, then this could be the culprit.

    Living in BC myself, I agree we are on our own to pay for the Lymphedema treatment and sleeves/gloves etc that keep the swelling at bay. Its not cheap for sure.

    The best thing I did was join the lymphedema thread here at BCO where the LE girls educated me and answered lots of my questions.Smile Check it out and post any questions. We are there to help you figure out a plan of attack if you indeed do have lymphedema. From your GP and PT diagnosis, it sounds like you do. Nice that your GP was on top of it. He might be a keeper! SmileSo many docs don't know or are in denial to LE development.Yell

    If you have Lymphedema (LE), fluid will keep building up. Your PT should have "hands on"taught you (not just give you a guide sheet) how to do MLD a gentle self massage to move the fluid daily. Also there is a DVD you can buy called "Healthy steps,focus on healing by sherry lebed".  I do the lebed exercise (15 min) and it opens my lymphatic system to help me drain my arm/trunk and breast.

    The whole side of the upper body is at risk for lymphedema. Breast LE can be dearly painful, so I validate youWink

    You also should make sure your PT is a qualifed certified Lymphedema Therapist.(too many "weekend course, lymph therapists" are out thereFrown) To find one go to stepup-speakout.org. and look under " find a therapist" Some of the girls on the lymphedema thread created that website and it answers just about all questions on lymphedema. We have at least three exceptional LE therapists in the van/surrey area.Smile I think I would pick one of them over a Pt. You should be evaluated by one and see what they think.

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited March 2013

    Cher56 - when I had my TEs in, they were a ridiculous shape, but at least they were symmetrical across the top.

    So when I had my exchange last summer, and Lefty was swollen all the way up to my collabone, I was devastated. The PS said it was just "fluid from all the pocket work I did."

    He said it may or may not be reabsorbed into the body. WHAAAAA? Surprised

    I was very patient for the first five months. Then I sought out a Lymphedema specialist at the hospital. She was dumfounded. She said she didn't think I had LE, but couldn't think of anything else to do, so ordered me $600 worth of compression bras and a Jovi-Pak. It didn't cover the swelling, and had absolutely no effect on it. (And, oh, by the way, in three visits she never laid a finger on me. Just threw handouts at me, with dozens of exercises to do.)

    Finally, I couldn't stand it any more. I started seeing a Myofascial Release Massage therapist, who was also a certified LE specialist. She, too, said that the fluid build-up was not LE, per se, but that manual lymph drainage exercises would help move it along.

    Within five visits, the fluid had disappeared! She did extensive, hands-on massage, and showed me exactly how to do the same thing at home. She took the Jovi-Pak and had it altered to fit exactly over the swollen part. (Even though I don't think that helped much.)

    Her final strategy was to put Kinesio Tape over my breast, from the collarbone down, then cut into "fingers" that spread down my breast. The first night I wore it, I woke up with wrinkly skin, whereas before it was tight and shiny.

    Finally, I achieved the symmetry I'd been hoping for, and it has stayed that way since January. I do the MLD exercises twice a day, along with some stretching for Iron Bra issues.

    Lefty is still a bit bigger than Righty, but not so much that anyone else would notice.

    As for the Iron Bra pain and tightness, she did a combination of myofascial release massage (hurt sooo good!) and scar tissue mobilization. I had quite a bit of fibrosis built up on my left (cancer) side, as well as lots of scar tissue around my drain incisions! That's all broken up now, and I no longer have the tightness.

    When I leave her office, I am taller, looser, and have a much greater range of motion. I am SO glad I decided to find help on my own!

    Hope you find some relief soon....if possible, you might try to find a Myofascial Release Massage Therapist.

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  • Cher56
    Cher56 Member Posts: 187
    edited March 2013

    Blessings 20... wow.. so glad  you've gotten so much better! I'm just at a stand still financially - main problem - uggg! I do what I was shown as often as I can, but we didn't get to the scar tissue break up, but as I said due to the extensive mess (no other name for it) the whole chest to down where the drains were is scar tissue, I have different bras now, not prothesis but preforms & the bras are larger so they dont stab me in the wrong areas, but ya still have discomfort. One positive thing is that the pain is NOT as over the top as it was. I am getting pain in my left underarm a little too often for comfort, but will wait it out. I also watched a youtube of a PT doing drainage & followed that, & it made a difference. I'll go see the PT when I can afford it .. so may be off/on, but better than nothing. I'll ask her if she's a MRMT.. I think she is... thanks for your replying too! happy days ahead for you!!!

    cher

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  • Cher56
    Cher56 Member Posts: 187
    edited March 2013

    Hugz4u Thanks sooo much too for all the info! Yes I call her a PT but is actually specializes in LE Therapy. She was doing hands on massage for drainage & working (hurt so good as Blessings said) my cancer arm/underarm etc. I don't have swelling where you can actually SEE it, it's more of a feeling of swelling - mainly in the underarm. I'm going to take your advice & get one of those dvd's & get into the LE forum. Thanks loads. -- funny when I was searching for a LE or PT that specializes in LE I couldn't find any except Keary Clinic - Janet. but she was also recommended to me by a PS who wouldn't even look at my chest let alone touch me, as she said it's a miracle in itself that I healed with all the things I had going against me & to never have surgery again unless emergent. ok..done!! you betcha!! have a marvelous weekend

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