What does lymphedema feel like?

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SJWhitten
SJWhitten Member Posts: 45
edited July 2019 in Lymphedema

I had a SLNB 4/1 with only four nodes removed. Just finished my second chemo treatment (TC). I haven't really been too concerned about lymphedema, since the doc said I have such low risk. But yesterday we went swimming, and I hooked a noodle under my arms to float. After a little while, my arm and chest were hurting, so I changed positions. Today I am very tender under my arm - the arm itself and the armpit, and the worst of it is the top of the breast on the side, where the surgery was. I'm hoping this is just surgery residual, but I don't want to ignore something.

What doc do I start with if I am concerned? Breast surgeon - haven't seen him lately. Currently seeing MO most often.

Thanks in advance!!!

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  • gb2115
    gb2115 Member Posts: 1,894
    edited May 2019

    MO should be able to refer you to a lymphedema clinic. Make sure it's someone certified.

    If I do too much my underarm area, arm and breast will sometimes ache for a couple of days. So far my lymphedema has been limited to the side of my breast near the underarm. I only had 3 nodes removed but my body made it clear the nodes are compromised. I try to be extremely careful with my arm because of that.

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  • SJWhitten
    SJWhitten Member Posts: 45
    edited May 2019

    GB2115 Thanks for your reply. I think I will give it one more day and see how it feels in the morning. Still sore today. I am flying Thursday, so I want to be sure I don't have issues. I flew three weeks ago and wore my compression sleeve and had no issues; I will plan to wear my sleeve this weekend. Thanks again.

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  • gb2115
    gb2115 Member Posts: 1,894
    edited May 2019

    Hope you feel better!!

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  • Micmel
    Micmel Member Posts: 9,450
    edited May 2019

    feels full, pins and needles... feels like a full balloon that is heavy and uncomfortable, like about to burst. Almost a hot feeling as well. Pain intermittent with fullness and feeling Of pooling. Immediately try to cut a sock toe out of a tube sock. Mimicking a compression garment! If it relieves the pressure. Then you have more of an idea. Seek a lymph specialist for soft gentle massage. I caught mine fast. The faster you treat it. The less it takes hold. I had to wrap mine for months. Once the swelling went down. It was more manageable. I hope you don't have it.

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  • ML1209
    ML1209 Member Posts: 241
    edited May 2019

    SJWhitten - I would suggest that you find a lymphedema therapist if you don't already have one. I see mine every 3 months. I have had some issues, so at times I see her weekly until things settle down. I only had 4 removed as well. My LET and my breast surgeron oncologist both explained to me that you are at risk no matter how many lymph nodes you have removed. I was told to wear my sleeve anytime that my arm feels achey or feels like it has the "flu". That didn't make sense until I experienced what they were talking about. I will tell you that I am 2 years out from my lumpectomy and SNB, and I am still tender and super sensitive .... some days more than others. I was told this was normal and that many who are 15 years out say they still have tenderness, etc. Hope things are feeling better.

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  • ML1209
    ML1209 Member Posts: 241
    edited May 2019

    SJWhitten - I would suggest that you find a lymphedema therapist if you don't already have one. I see mine every 3 months. I have had some issues, so at times I see her weekly until things settle down. I only had 4 removed as well. My LET and my breast surgeron oncologist both explained to me that you are at risk no matter how many lymph nodes you have removed. I was told to wear my sleeve anytime that my arm feels achey or feels like it has the "flu". That didn't make sense until I experienced what they were talking about. I will tell you that I am 2 years out from my lumpectomy and SNB, and I am still tender and super sensitive .... some days more than others. I was told this was normal and that many who are 15 years out say they still have tenderness, etc. Hope things are feeling better.

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  • SJWhitten
    SJWhitten Member Posts: 45
    edited June 2019

    Micmel - I have a sleeve that I've worn the two times I've flown. But my arm really doesn't seem to be my problem; it's more my underarm and the top of my breast. Your description is some of what I'm feeling, but I don't think it's as extreme as yours.

    ML1209 - I'm going to onco tomorrow; I will ask for a referral to specialist. I think they have one in the clinic building.

    Thanks for the feedback and advice.

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  • SJWhitten
    SJWhitten Member Posts: 45
    edited June 2019

    I had a good visit with the Onco NP yesterday. Based on everything I told her, she thinks I'm having nerve pain instead of lymphedema. I added too many variables at one time to really say for sure.

    1. I finished my prescription for amitriptyline provided by the plastic surgeon. That was definitely helping with other weird nerve pains I was having in incisions.

    2, I started being more active, including swimming with the noodle under my armpits.

    3. And I've flown two weekends - both with a sleeve on.

    I'm going to start taking the amitriptyline again today and see if helps. And I'm going to have a forced two week activity break - chemo yesterday.

    NP said to especially watch for swelling in my hands - like rings too tight.

    So maybe/hopefully I am avoiding lymphedema. Thinking positive!

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  • boydtwinee
    boydtwinee Member Posts: 2
    edited July 2019

    I finished almost a year treatment in April. This past week right arm hand very swollen. Got into lymphatic clinic. She is wrapping it tomorrow for 2 days then therapy twice a week for a month. Very nervous about lymphedema. I was doing so well. Is this life long issue now?

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