Lymphedema/PT after axillary node dissection

ChwaraeTeg
ChwaraeTeg Member Posts: 10
in Breast Cancer #1

Good morning

So, husband has stage IV triple neg breast cancer. Had axillary node dissection surgery last June. Since then, he has had two PT appointments last summer (he was discharged before he started radiation,w hich he completed in Sept) No effort was made to reconnect him with PT and docs didn't seem to consider it a priority. So, January he is in a ton of pain, finds a lump his doc missed and starts back up with chemo. No PT. Arm is HUUUUGE (and painful) He's calling me telling me how debilitating it is and finally a friend of mine said CALL YOUR SURGEON! THAT'S LYMPHEDEMA!  So, he does. And he gets referred again for PT. The woman sees him 3x--once a week, says he's doing great and wants to back off his appointments. He has very limited range of motion, lymphedema did seem a little bit better. So, he has now gone 8 more times, cannot lift his arm, is thinking he has to give up his horse/golf/other stuff he loves. His PT has now discharged him again for  two weeks. She said it's  because of our insurance, but our insurance has stated on several occasions they have paid (EOB confirms this) and that they will pay. They have given me reference numbers to this effect that I have passed on. They have no  record of her office contacting them to  even discuss benefits.

So, is this pretty normal for lymphedema treatment? My friend went through PT 3x week for almost a year (both for the lymphedema and range of motion/scar tissue)  I don't want to be that wife--Ijust want him  to feel better and to not have to give up the quality of life stuff that really mattrs, if he doens't have to.

Any feedback on what is normal PT after that surgery? Is this pretty typical to be in this much pain a year out?

Any thoughts very much appreciated!

Comments

  • peony
    peony Member Posts: 306 Member
    #2
    Has he been fitted for a

    Has he been fitted for a compression sleeve or any compression garments?  That was the first thing they did for me.

  • ChwaraeTeg
    ChwaraeTeg Member Posts: 10
    #3
    peony said:

    Has he been fitted for a

    Has he been fitted for a compression sleeve or any compression garments?  That was the first thing they did for me.

    Yes, he has a sleeve. I

    Yes, he has a sleeve. I gather it hurts him a lot but he wears it. He doesn't have the...whatever it is that pumps fluid around though (my friend got one to use at home) he was unaware of what he could do at home to move the fluid (friend had to send pamphlets and share exercise ideas--surprised me that he would not have gotten those from  his PT, but no idea what the norm is!)

  • peony
    peony Member Posts: 306 Member
    edited June 2017 #4
    My lymphedema has not been

    My lymphedema has not been that serious, so far.   Once, I got the compression garments, I didn't have to go back for more P/T. I never had range of motion problems.  Maybe there's someone else here who can input more specific info.

  • Apaugh
    Apaugh Member Posts: 850 Member
    #5
    So sorry

    My doc was passive about my lymphedema.  I finally went back to my onocologist and ask him to help me.  He found me a physical therapist that specialized in breast massage and lymphedema.  Not all PT's know what they are doing.   Mine had 35 years of experience.  You can also get online and look into the lymphedema site and they might be able to give you suggestions.  Don't give up. 

    Hugs,

    Annie

  • Beepositive
    Beepositive Member Posts: 259 Member
    #6
    Insurance/reply ChwaraeTag

    yeah its sad some insurance will not cover important stuff thats needed right away . I was blessed that my insurance covered the compression garments and the machine to have at home. my breast Surgeon referred me right after  my surgery to the Lymphedema clinic for physical therapy and range of motions exercises that i started right away!its really helping with my Arm.  hope everything works out for your husband.. prayers to you and your family.

  • Mariangel43
    Mariangel43 Member Posts: 79
    edited June 2017 #7
    Lymphedema

    Hi, girls, you are quite fortunate if you were referred to a PT soon after surgery.  My docs wre like Apaugh's, totally indiferent.  Since they are not having any side effects, they don't care.  One of the docs gave me the name of a perivascular surgeon so that he could check the lymphedema development.  That was all.  No PT, no sleeves, nothing.  The area around the armpit is still swollen.  But the swelling has grown so I am now at peace. That is one of the areas physicians should deal with as soon as surgery is done.  How can we be heard?

    Maria

  • ChwaraeTeg
    ChwaraeTeg Member Posts: 10
    #8
    Thank you all so much!!

    Thank you all so much!!

    Actually, our  insurance will pay, so yaaaaaay! It's just that they have not been asked! Frown Thanks for the idea of looking at folks online. I will do that! I WISH he had been referred right away but  actually neither his surgeon ("oh hardly anyone gets lymphedema! don't worry about it.") nor his oncologist ("cancer is the important thing. We're sorry the patient's wife is unhappy her husband's arm hurts, but we're focused on the big picture") have really seen it as a big deal.

    It just hurts my heart to think he has to give up his horse (and I know he loves the horse) and can't golf. It may seem trivial, in the big picture,but those little quality of life things mean a lot!

    I am going to investigage online. Like I said, I don't want to be the difficult wife--I just love him adn want him to get relief (and to ve able to enjoy his life as well as he can!)

    Thank you all so  much!!!

     

    CT

  • Betty_PinkRibbonConsulting
    Betty_PinkRibbonConsulting Member Posts: 4
    #9
    Therapy and Compression Garments

    First of all, I think you already know that you must find a Lymphedema Therapist that has been trained, not just any PT. The truly amazing ones (and I have known them) have gone to the specialized lymphedema schools. About garments...I hope he is getting a custom garment as the OTC ones may not be suitable for him and may be why it is so uncomfortable. The reality is they just are not very comfortable but a graduated compression garment is the only way to maintain any success from therapy. In my days working as a Product Manager and selling intermittent compression devices, I know there is alot of controversy about using them BUT patients can have great success IF the device is used correctly and under professional supervision. Lymphapress and BioCompression are the companies you may want to explore. You want a device with multiple chambers as these offer the most effective results. BUT you must understand how they work and be sure your machine is always set correctly...cats, kids and just boo boos can happen!

    I hope this has helped.

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