Does this sound like arm lympedema?

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LRN715
LRN715 Member Posts: 34
Finished chemo and rads 6 months ago for Type 2 invasive ductal breast cancer. Lately I have been noticing some swelling, stiffness and discomfort from my wrist area to elbow crease.....I did have a partial mastectomy with thre sential nodes removed, but no lymph node involvement.

Had my first mammo this week and it was normal. Whew! Will have my blood work and onco visit in two weeks, but not worried about the blood work. But, the arm does concern me and tried to get in earlier....I am thinking maybe I need to wear a sleeve? In themeantime any ideas before I see the onco, like stretching exercies, etc?

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  • missrenee
    missrenee Member Posts: 2,136 Member
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    This could be lymphedema
    even with just one node removed. Unfortunately, my doctors were not much help. I took it upon myself to find a physical therapist who was a licensed lymphedema specialist. They are the ones who really will be able to help you. There are exercises, massage techniques, sleeves, gloves, kinesio taping and a Flexi-touch machine which are all helpful in managing lymphedema.

    Your doctors might have names of these special therapists. If not, contact any major cancer facilities or hospitals you have in your town to try to get in contact with a licensed lymphedema therapists.

    If it is lymphedema--do not dispair. This is a manageable condition but must be handled correctly.

    Hugs, Renee
  • LRN715
    LRN715 Member Posts: 34
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    missrenee said:

    This could be lymphedema
    even with just one node removed. Unfortunately, my doctors were not much help. I took it upon myself to find a physical therapist who was a licensed lymphedema specialist. They are the ones who really will be able to help you. There are exercises, massage techniques, sleeves, gloves, kinesio taping and a Flexi-touch machine which are all helpful in managing lymphedema.

    Your doctors might have names of these special therapists. If not, contact any major cancer facilities or hospitals you have in your town to try to get in contact with a licensed lymphedema therapists.

    If it is lymphedema--do not dispair. This is a manageable condition but must be handled correctly.

    Hugs, Renee

    lymphedema
    Thank you for your prompt reply. I also heard Accupuncture might help and am willing to give that a try too.
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
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    LRN715 said:

    lymphedema
    Thank you for your prompt reply. I also heard Accupuncture might help and am willing to give that a try too.

    LE website
    Before you do acupuncture, make sure you get it diagnosed and see a certified lymphedema therapist. Here is website to find one in your area:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    The main webapge is:
    http://www.stepup-speakout.org

    I hear that is very good site for LE information.
  • anniecottingham
    anniecottingham Member Posts: 1
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    LE website
    Before you do acupuncture, make sure you get it diagnosed and see a certified lymphedema therapist. Here is website to find one in your area:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    The main webapge is:
    http://www.stepup-speakout.org

    I hear that is very good site for LE information.

    lymphadema
    Dont wait one more minute to find a lymphadema specialist. Prevention of progression is the key to lasting results. I had "truncal" lymphadema, which my onc said was just postoperative swelling (7 weeks after mastectomy) She was wrong. My lymphadema specialist took all the pain out of my chest, the slight swelling out of my arm and I am good as new.

    Just finished radiation #28, just two more to go and NO LYMPHADEMA. I love you Amy Stein. (my LT)
  • Alexis F
    Alexis F Member Posts: 3,598
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    missrenee said:

    This could be lymphedema
    even with just one node removed. Unfortunately, my doctors were not much help. I took it upon myself to find a physical therapist who was a licensed lymphedema specialist. They are the ones who really will be able to help you. There are exercises, massage techniques, sleeves, gloves, kinesio taping and a Flexi-touch machine which are all helpful in managing lymphedema.

    Your doctors might have names of these special therapists. If not, contact any major cancer facilities or hospitals you have in your town to try to get in contact with a licensed lymphedema therapists.

    If it is lymphedema--do not dispair. This is a manageable condition but must be handled correctly.

    Hugs, Renee

    Congrats on your mammo!
    Congrats on your mammo! Great news! It could be lymphedema, but, I am no expert. You probably should talk this over with your oncologist and he can recommend a physical therapist or a lymphedema specialtist for you. Good luck and let us know.


    Hugs, Lex
  • natly15
    natly15 Member Posts: 1,941
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    Alexis F said:

    Congrats on your mammo!
    Congrats on your mammo! Great news! It could be lymphedema, but, I am no expert. You probably should talk this over with your oncologist and he can recommend a physical therapist or a lymphedema specialtist for you. Good luck and let us know.


    Hugs, Lex

    It sounds like it could be
    It sounds like it could be lymphedema. I see a lymphedema therapist and have recently begun using the lympha press machine because it is in both my breast and my arm. If you address it is something that can be controlled with exercise, massage etc. Best wishes.
  • Noel
    Noel Member Posts: 3,095 Member
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    natly15 said:

    It sounds like it could be
    It sounds like it could be lymphedema. I see a lymphedema therapist and have recently begun using the lympha press machine because it is in both my breast and my arm. If you address it is something that can be controlled with exercise, massage etc. Best wishes.

    Be sure and have a pt see
    Be sure and have a pt see you, or if you have one at the hospital, a lymphedema therapist. Many pink sisters on here have lymphedema and I know will offer you a lot more info than I can.


    Good luck and keep us updated,


    Noel
  • MGNS
    MGNS Member Posts: 197 Member
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    LRN715 said:

    lymphedema
    Thank you for your prompt reply. I also heard Accupuncture might help and am willing to give that a try too.

    I also have lymphedema and
    I also have lymphedema and have to avoid cuts to my affected arm and hand because it will cause it to flare up and be more painful. Please check with a licensed therapist before trying accupunture. Lymphedema is manageable if treated correctly. Please take care and let us know what you find out.
  • Rague
    Rague Member Posts: 3,653 Member
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    Noel said:

    Be sure and have a pt see
    Be sure and have a pt see you, or if you have one at the hospital, a lymphedema therapist. Many pink sisters on here have lymphedema and I know will offer you a lot more info than I can.


    Good luck and keep us updated,


    Noel

    PT does not equal knowing about LE
    The vast majority of PT's are not trained in dealing with LE - UNLESS they are also Certified Lymphedema Therapists. They can do more harm than good. My Certified LE guy is not a PT - he has his Masters in OT. The PTs check with him before telling me what to do. Just recently I had to see them for an issue in my non LE arm and they still checked with him before giving me info as exercises are not done on one side only.
  • pinkkari09
    pinkkari09 Member Posts: 877
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    Congrats on the clear
    Congrats on the clear mammo!! This sounds like lymphoma to me as well. As stated already, the quicker you get on it the better. It can get out of control really fast. Mine is under pretty good control right now, but I'm flying on Thursday and that can really act is up, I wear a sleeve/glove, and am very careful. I have a PT as well, however, I've learned to do most the massages myself and prefer to go that route (only because I have a million other docs to see every week). It can be very well managed but you have to get on it asap when it starts flaring up. No BP's or IV's on that side for sure, every little bruise, cut, burn or scrape can cause a flair up. Best of luck to you and hope everyone has helped you some.
    Miles of Love,
    Kari
  • LRN715
    LRN715 Member Posts: 34
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    Congrats on the clear
    Congrats on the clear mammo!! This sounds like lymphoma to me as well. As stated already, the quicker you get on it the better. It can get out of control really fast. Mine is under pretty good control right now, but I'm flying on Thursday and that can really act is up, I wear a sleeve/glove, and am very careful. I have a PT as well, however, I've learned to do most the massages myself and prefer to go that route (only because I have a million other docs to see every week). It can be very well managed but you have to get on it asap when it starts flaring up. No BP's or IV's on that side for sure, every little bruise, cut, burn or scrape can cause a flair up. Best of luck to you and hope everyone has helped you some.
    Miles of Love,
    Kari

    Thank you everyone!
    Thank you everyone! Lymphedema has been confirmed, and have seen a certified Lymphedema PT, who now has me bound with compression wraps for about 2-4 weeks. She said it is early stage. Afer that I will be fit for a compression sleeve for when I fly, etc. So far only is affecting my lower arm up to elbow, so that is good. But, there was significant swelling. Thanks again everyone, I really appreciated your kind words and suggestions.