which dr. do you see for your lymphedema?

helen e
helen e Member Posts: 223
in Breast Cancer #1
I got a compression sleeve last year fron my PT but this summer my arm has gotten worse and is bothering my more. My sleeve just isn't cutting it anymore, aspecially for the pain and my hand is swelling up also. So my question is who do I see my GP or my oncologist? Thanks for your help.

Helen

Comments

  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #2
    You should have either of
    You should have either of them refer you to a lymphedema specialist. You'll get better results and better care from a specialist. Best of luck to you.

    Hugs,

    Linda
  • missrenee
    missrenee Member Posts: 2,136 Member
    #3
    Gabe N Abby Mom said:

    You should have either of
    You should have either of them refer you to a lymphedema specialist. You'll get better results and better care from a specialist. Best of luck to you.

    Hugs,

    Linda

    Hah--Helen, that is the million dollar question!
    Even though I love, love, love my surgeon, med. onc. and rad. onc., no one seemed to really know much about or took my lymphedema very seriously! I couldn't believe it. Even though my lymphedema does not seem to be as bad as some women's, I knew it was something that had to be addressed early and monitored closely or it could get way worst. I had the good fortune of having a friend who is an occupational therapist and was friends with a lymphedema specialist here. Well, I quickly found out that certified lymph. specs. are a very small group. I waited 6 months to get an appointment, but it was worth it. I was fitted for a sleeve/glove, had manual lymphatic drainage and they order the Flexi-Touch machine for me in my home. She told me it was very typical that doctors either don't know much about it or don't take it very seriously or seem to think it's another doctor's problem.

    Good luck to you and I hope you find a certified lymph. specialist.

    Hugs, Renee
  • cavediver
    cavediver Member Posts: 607
    #4
    Renee is correct...finding a l.specialist is difficult depending on where you live. The hot weather can cause more fluid and hence more swelling. But you do need to see someone to get it under control again and managed. You can check on the Lymphedema Network webpage for specialists in your area. Good luck....... it took me a long time to finally find someone but when you do, you will be able to manage this. Hugs
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #5
    cavediver said:

    Renee is correct...finding a l.specialist is difficult depending on where you live. The hot weather can cause more fluid and hence more swelling. But you do need to see someone to get it under control again and managed. You can check on the Lymphedema Network webpage for specialists in your area. Good luck....... it took me a long time to finally find someone but when you do, you will be able to manage this. Hugs

    Excellent .. Question
    Thank you for posing this 'question'. I am taking notes.


    Vicki Sam
  • Rague
    Rague Member Posts: 3,653 Member
    #6
    My experiences and thoughts
    You need a Certified Lymphedemologist.

    It was my Chemo Dr who first noticed issues with me. He sent a message to my PA who had me an appt. with K. in 1 1/2 weeks.

    All sleeves/gloves are not created the 'equal' for us - we are each unique. I have quite a bit of problems with it. Heavy compression only makes it worse - light works the best. I'm built a bit 'strange' so 'off the shelf' garments do not work for me. After about 1 1/2 years, we finally have the right measurements for my sleeves but are still working on getting a glove that is right (My hand is slightly 'webbed'.)

    For me - the pressure is more an issue than the temps - bad weather (low pressure) more swelling.

    Susan
  • Alexis F
    Alexis F Member Posts: 3,598
    #7
    cavediver said:

    Renee is correct...finding a l.specialist is difficult depending on where you live. The hot weather can cause more fluid and hence more swelling. But you do need to see someone to get it under control again and managed. You can check on the Lymphedema Network webpage for specialists in your area. Good luck....... it took me a long time to finally find someone but when you do, you will be able to manage this. Hugs

    A lymphedema specialist is
    A lymphedema specialist is whom you should be looking for. Hope you get some help Helene!
    And, update as to whom you found and how you are doing.

    Lex
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #8
    cavediver said:

    Renee is correct...finding a l.specialist is difficult depending on where you live. The hot weather can cause more fluid and hence more swelling. But you do need to see someone to get it under control again and managed. You can check on the Lymphedema Network webpage for specialists in your area. Good luck....... it took me a long time to finally find someone but when you do, you will be able to manage this. Hugs

    I don't have any info to
    I don't have any info to help you Helene, but, I did have a question if any of you know. Can we develop lymphedema later? I thought I read somewhere where we could.


    Thanks,

    Debby
  • cavediver
    cavediver Member Posts: 607
    #9
    DebbyM said:

    I don't have any info to
    I don't have any info to help you Helene, but, I did have a question if any of you know. Can we develop lymphedema later? I thought I read somewhere where we could.


    Thanks,

    Debby

    Debby, yes...
    if you have had lymph nodes removed or compromised...you are what they call "at risk" to develop lymphedema. That does not mean you will ever have an issue....but it could occur years after the surgery.......it is all a bit of a mystery unfortunately. Some drs recommend if you are 'at risk' that you wear a compression sleeve when flying in airplanes or doing strenuous work/ exercise. Hopefully you will never get this...it is so different for all of us.... but it would be best not to have to deal with it al all of course!

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