Lymphedema in breast update - Yes I am special!

cindycflynn
cindycflynn Member Posts: 1,132 Member
edited March 2014 in Breast Cancer #1
As Traci pointed out in my last post, only I could manage to get lymphedema when they only removed 1 sentinel node!!!

I went for my appointment with a lymphedema therapist this morning, and she confirmed the diagnosis. She gave me a really good description of the lymph system. She said that the sentinal node and axillary nodes work sort of like supervisors (sentinal) and workers (axillary). When several "workers" are removed, the rest of the workers have to do more and sometimes get overwhelmed, causing a backlog of fluid to build up. She said that normally the removal of a "supervisor" doesn't cause a problem (which made me laugh from an HR perspective), but sometimes you may have a "hands-on type supervisor", which apparently is what I had, and the removal does put more of a load on the remaining nodes.

She said that it looked like my arm was OK so far, although she did note just a slight swelling in my upper arm. She gave me a compression sleeve and glove to wear whenever I fly (which isn't often, but I do have a trip planned to Oregon next month). She also showed me how to massage the areas I need to pay attention to and keep the fluid moving along, and gave me an insert for my bra to keep pressure on the area of the swelling during the day.

She also confirmed what my friend, who is also a lymphedema therapist, told me. The earlier you address ANY lymphedema the better. Mine hasn't caused a lot of swelling yet, and doesn't appear to be affecting my arm much, if at all. But since we now know that my system is subject to overload, I need to be extra cautious that it doesn't get any worse.

Boy, the things we learn on this journey!!!

Comments

  • MNLynn
    MNLynn Member Posts: 224
    #2
    "The earlier the better . . ."
    That's what I've also been told - I have mild lymphedema in my right arm and some toward my back under my arm. It doesn't seem too noticeable - I had been measuring my arms and the rt arm was staying only about an inch bigger around than my left - but my rad onc said it would be worth seeing a physical therapist - so I'm also learning the massage techniques and wearing a compression sleeve. Last week, my PT had my arm wrapped in compression bandages for 4 days - looked like I was wearing a cast - everyone asked me . . . "did you break your arm?" . . . but my PT said that it did make a difference.

    I'm going in on Friday to get fitted for a mastectomy bra that will come up higher under my arm and put compression on that area . . . not looking forward to all that in the hot summer weather! The compression sleeve is bad enough in the heat. Can't complain too much - it hasn't been too hot here lately.

    Wow - I am surprised that you have swelling with just one sentinel node removed (I like your "hands-on supervisor" description!) - I think I had 8 sentinel nodes removed and then the axillary lymph nodes. Hope your compression garments do the trick!

    ♥ Lynn ♥
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #3
    Did she come up with those HR analogies just for you?
    So you had a micromanager! The surgeon terminated it without sufficient documentation, and the remaining employees are now running amok, and you have an unlawful termination action!

    NOW it all makes sense!! :-)

    Seriously...It sounds like the therapist gave you some good guidance, and that you caught it early enough that it hopefully won't be too serious for you -- I'm so glad to hear that.

    So now I'm hoping MY "supervisors" were such big slackers that none of the rest of the workforce ever even notices they're gone -- you know, like in real life! :-)

    Traci
  • carkris
    carkris Member Posts: 4,553 Member
    #4
    TraciInLA said:

    Did she come up with those HR analogies just for you?
    So you had a micromanager! The surgeon terminated it without sufficient documentation, and the remaining employees are now running amok, and you have an unlawful termination action!

    NOW it all makes sense!! :-)

    Seriously...It sounds like the therapist gave you some good guidance, and that you caught it early enough that it hopefully won't be too serious for you -- I'm so glad to hear that.

    So now I'm hoping MY "supervisors" were such big slackers that none of the rest of the workforce ever even notices they're gone -- you know, like in real life! :-)

    Traci

    that seems to the case for
    that seems to the case for me traci, I do get some cording from time to time and the PT massages it out. glad you found something that helps cindy.
  • ladyg
    ladyg Member Posts: 1,577
    #5
    I also have this
    I also have this lovely condition. I have been wearing the compression sleeve when working but by the time I get home I just want to take it off. The PT that I saw showed my husband how to do the massage. I kind of enjoy that part - tried for 45 years to get him to learn massaging...lol. My PT also told me about a compression garmet but it looks really uncomfortable. She did not mention the bra insert so I will be asking about that.

    What part of Oregon are you going to visit? That is where I live.

    Hugs
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    #6
    ladyg said:

    I also have this
    I also have this lovely condition. I have been wearing the compression sleeve when working but by the time I get home I just want to take it off. The PT that I saw showed my husband how to do the massage. I kind of enjoy that part - tried for 45 years to get him to learn massaging...lol. My PT also told me about a compression garmet but it looks really uncomfortable. She did not mention the bra insert so I will be asking about that.

    What part of Oregon are you going to visit? That is where I live.

    Hugs

    Springfield, Oregon
    We have a vacation/retirement home there, and my parents are there as well. It is a beautiful place, and we can't wait to live there full time!
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #7
    Thank you for this
    Thank you for this information. I've noticed some swelling on my left hand (I only had 1 sentinel node removed on that side) and wonder if it is the beginning of lymphedema. Sure hope mine weren't 'hands-on'!

    Sorry you're having to deal with this, but it is good that you've caught it early and are learning the massaging techniques.

    I think I am going to meet with a lymphedema specialist just in case. Thank you for this very helpful information and hope you can keep it at bay from now on.
  • ladyg
    ladyg Member Posts: 1,577
    #8
    cindycflynn said:

    Springfield, Oregon
    We have a vacation/retirement home there, and my parents are there as well. It is a beautiful place, and we can't wait to live there full time!

    Yes it is nice
    Yes it is nice there. Everything grows really well and it is green. I am over in Central Oregon, just outside of Sunriver. It is really nice here too.
  • KayNYC
    KayNYC Member Posts: 495 Member
    #9
    like the analogy
    I had six nodes, sentinal and a cluster removed.I started the lymphedema massage/drainage last week. I see her again tomorrow. I started using the sleeve and glove; there is some improvement (it was generally just less than an inch)of upper arm swelling and the heaviness/discomfort has stopped completely.I am doing the massage each night.Ordered another sleeve this morning over the internet and hope it gets here before I fly next Friday. Now that this is under control, I guess I needed more excitement, I tripped down the last two steps at work yesterday and I am home with a foot contusion r/o a fracture. Going to orthopedist on Monday for follow-up.Never a dull moment.
    Hugs, K
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #10
    KayNYC said:

    like the analogy
    I had six nodes, sentinal and a cluster removed.I started the lymphedema massage/drainage last week. I see her again tomorrow. I started using the sleeve and glove; there is some improvement (it was generally just less than an inch)of upper arm swelling and the heaviness/discomfort has stopped completely.I am doing the massage each night.Ordered another sleeve this morning over the internet and hope it gets here before I fly next Friday. Now that this is under control, I guess I needed more excitement, I tripped down the last two steps at work yesterday and I am home with a foot contusion r/o a fracture. Going to orthopedist on Monday for follow-up.Never a dull moment.
    Hugs, K

    I too have notice slight swelling .. Thank you for the
    posting .. and I am experiencing a slight swelling ..Not in my head ....

    Kay .. Sleeve's on line .. I would of never thought to look there .. just the regular .. prescribed shops .. given out by PT or doctor. Great Info.


    Vicki Sam

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