Please Help--Have Questions About Lymphedema

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missrenee
missrenee Member Posts: 2,136 Member
edited March 2014 in Breast Cancer #1
Hi ladies: I had a lumpectomy/axillary node disection in Dec.'09. Had to have second surgery 10 days later to get clear margins. Stage III invasive ductal carcinoma with 10+ nodes out of 23. Had a drain in for 5 weeks. Started chemo at the end of January and finished my 6th and final treatment on May 6. Just started radiation this week (35 treatments total). I have had a certain degree of swelling, tenderness, numbness and pins and needles since the surgery. For the last couple of weeks, swelling seems worse involving the breast and ribs adjacent to the breast. Also, soreness seems worse. So far, my arm shows no sign of swelling. The surgeon and oncologists seem to feel everything looks okay, but it is bothersome to me and I'm worried. Has anyone had these problems 6 months after surgery? How can you tell the difference between lymphedema and normal post-op, post-chemo stuff? Any help would be appreciated. Thank you. Renee

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  • mjjones453
    mjjones453 Member Posts: 155
    #2
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    lymphedema
    Renee, I had a Lumpectomy w/sentinal node biopsy in Feb. finished radiation in May. I do lift weights, I thought that I started slow enough. I have tightness and pain in my arm; I do notice a little swelling at the wris, and my arm throbs. I am contemplating calling the therapist that I saw before Surgery, to find out if it is anything. I think I worry more about this, because I do lift weights, and lift boxes at work.
  • jo jo
    jo jo Member Posts: 1,175
    #3
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    Missrenee, i had a bilateral
    Missrenee, i had a bilateral mastectomy with 12 nodes removed in Nov 09. My arm is still numb and sore and as of right now i dont have full function or ROM (range of motion). I had pain and soreness and swelling in my ribs adjacent to the breast but it was from my expanders stretching my muscles and from all the nerves and veins tryin to heal themselves after the trauma they went thru. Im still going through stages of everything feels better then all the sudden the pain and everything is back...its like a rollercoaster...but my doc says its my nerves waking up and they dont seem to wake up all at once...they wake up and later wake up a little more and later a little more...so when they have that spert of waking up your feelin that pain you werent feelin before. But the pain gets better the farther i am from surgery.
    My physical therapist did a test on me where they measure your arm in all different ways and so they have something to compare it to if you do get lymphedema. I have discussed lymphedema with her cuz i plan on flying soon and high altitude can bring it on...but she showed me pics of what lymphedema looks like...yes its swelling and your arm looks deformed from the swelling cuz of the fluid building up in your arm. I had pictured it totally different that your whole arm would swell evenly but the pics she showed me were all bumpy and just really groose looking...almost like the elephantman syndrome. But i never thought to ask if thoughs pics were extreme cases or if thats what it really looks like!
  • missrenee
    missrenee Member Posts: 2,136 Member
    #4
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    jo jo said:

    Missrenee, i had a bilateral
    Missrenee, i had a bilateral mastectomy with 12 nodes removed in Nov 09. My arm is still numb and sore and as of right now i dont have full function or ROM (range of motion). I had pain and soreness and swelling in my ribs adjacent to the breast but it was from my expanders stretching my muscles and from all the nerves and veins tryin to heal themselves after the trauma they went thru. Im still going through stages of everything feels better then all the sudden the pain and everything is back...its like a rollercoaster...but my doc says its my nerves waking up and they dont seem to wake up all at once...they wake up and later wake up a little more and later a little more...so when they have that spert of waking up your feelin that pain you werent feelin before. But the pain gets better the farther i am from surgery.
    My physical therapist did a test on me where they measure your arm in all different ways and so they have something to compare it to if you do get lymphedema. I have discussed lymphedema with her cuz i plan on flying soon and high altitude can bring it on...but she showed me pics of what lymphedema looks like...yes its swelling and your arm looks deformed from the swelling cuz of the fluid building up in your arm. I had pictured it totally different that your whole arm would swell evenly but the pics she showed me were all bumpy and just really groose looking...almost like the elephantman syndrome. But i never thought to ask if thoughs pics were extreme cases or if thats what it really looks like!

    You're right, JoJo--It is a Roller Coaster!
    And, it's hard to know--what to worry about and what to just let go and heal. I do have a friend of a friend who is a lymphedema specialist, and I think I'll try to see her--just to stay on top of things. Like you, I'm planning a long flight (in September) and I want to get this straightened out and get a sleeve if necessary. I do know the more I get into the rads, it could have an effect also. Thanks for your replies ladies.

    If anyone has any other stories, advice, please pass it on.

    Have a blessed day-everyone.
    Renee
  • 109339
    109339 Member Posts: 10
    #5
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    lymphedema
    Hi All,
    I am an 11 year survivor. I had a lumpectomy followed by a mastectomy in '99'I returned to the gym and one day about 5 years ago I noticed a rash and an enlargement from my hand to my shoulder. After seeing multiple docors, they finally diagnosed me with lymphedema. I live in Syosset, LI and they do therapy here. They suggested that I always wear a special sleeve and hand compressor. I did that for about a month. I'm a real estate broker and shake hands alot. The lymphedema is on my right side. The swelling is a touch better. Now it's only from my elbow to my shoulder. So I just deal with the change. No cure but not life threatening.
    Michele
  • New Flower
    New Flower Member Posts: 4,294
    #6
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    mjjones453 said:

    lymphedema
    Renee, I had a Lumpectomy w/sentinal node biopsy in Feb. finished radiation in May. I do lift weights, I thought that I started slow enough. I have tightness and pain in my arm; I do notice a little swelling at the wris, and my arm throbs. I am contemplating calling the therapist that I saw before Surgery, to find out if it is anything. I think I worry more about this, because I do lift weights, and lift boxes at work.

    Hi
    Lymphedema can happen any at time after the surgery. Plus you are raving radiation treatments which can cause lymphedema as well. Please search this site for "lymphedema" you will find a lot of information and good discussions.
    You need to see lymphedema specialist and physical therapist. Please ask both radiation oncologist and your breast surgeon for references and prescription as soon as possible.

    Good luck,
    New Flower

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