Any Lymphedema Probs Yet?

blazytracy
blazytracy Member Posts: 157
edited March 2014 in Breast Cancer #1
I had a Modified Radical Masectomy on Sept. 24th with 24 lymph nodes removed (11 malignant) on my right side.

Since then my right upr arm has seemed quite swollen and quite uncomfortable but I am pretty sure this is a normal feeling, right? I have been doing my post-surgery exercises but they do not help too much it seems at least with the swelling..

I know that I am suppossed to see the lymphedema clinic again during Rads (after chemo) so maybe they can help me out a bit more..

But does anyone know if this is something I have to live with for the rest of my life or does it eventually go away?

And advice would be helpful....thanks!!! Tracy

Comments

  • pinkkari09
    pinkkari09 Member Posts: 877
    #2
    Tracy
    Hi Tracy, I will have all of my lymph nodes (both breasts and ovaries) removed in February. Upon talking to my surgeon about this he stated that I would have the symptoms that you are having.....however; he also said I would be in physical therapy in order to rehabilitate my arm, he stated that in most cases they return to normal. Are you going to physical therapy? Sorry I couldn't help you more beings I haven't had my surgery yet, maybe you'll be able to help me once I have mine :)
    (((HUGS)))
    Kari
  • m_azingrace
    m_azingrace Member Posts: 399
    #3
    pinkkari09 said:

    Tracy
    Hi Tracy, I will have all of my lymph nodes (both breasts and ovaries) removed in February. Upon talking to my surgeon about this he stated that I would have the symptoms that you are having.....however; he also said I would be in physical therapy in order to rehabilitate my arm, he stated that in most cases they return to normal. Are you going to physical therapy? Sorry I couldn't help you more beings I haven't had my surgery yet, maybe you'll be able to help me once I have mine :)
    (((HUGS)))
    Kari

    Hi Tracy
    On July 21 2009 I had 31 nodes removed from the left side, along with a lumpectomy. I was very concerned for the first couple of months, as it seemed to take the swelling a long time to go away, and still the numbness continued even after the swelling went down. My arm was numb from the shoulder to the elbow and the breast and underarm area was also numb. Everyone is different of course. Even with everything else being the same, one might have lymphedema problems while another will not. In my case, everything seems to have returned to nearly normal now, with no swelling and very little of the numbness remaining. I was told that lymphedema would be a lifelong concern, and to always take extra precautions whenever flying and never get shots or BP on my left arm. In your case Kari, probably BP would be taken on your leg, and shots in the bum? When I went in to get my port installed, they put the BP cuff on my leg. I supposed that was to keep the equipment out of the surgeon's way during the procedure. Tracy, I hope this has helped somewhat? Kari, I hope your surgery in Feb goes well, with no complications afterward. Hugs and prayers to you both. Gracie
  • gilli
    gilli Member Posts: 18
    #4
    swelling in arm
    I would go see an expert at once. I see a lymphedema expert every two weeks and my swelling is only millimetres. I live in South Africa and we don't have lymphedema clinics but I would go at once. I do manual lymph draining massage twice a day as instructed by the person I am seeing and by doing this, and by her regular monitoring of my condition, and not carrying anything heavy on that arm and not lifting anything heavy and so on, am keeping it under control. From what I can gather, no one can predict what will happen but I would not waste any time in going to see someone. (I did not have any surgery but my swelling was caused from the radiation I had.)
  • blazytracy
    blazytracy Member Posts: 157
    #5
    m_azingrace said:

    Hi Tracy
    On July 21 2009 I had 31 nodes removed from the left side, along with a lumpectomy. I was very concerned for the first couple of months, as it seemed to take the swelling a long time to go away, and still the numbness continued even after the swelling went down. My arm was numb from the shoulder to the elbow and the breast and underarm area was also numb. Everyone is different of course. Even with everything else being the same, one might have lymphedema problems while another will not. In my case, everything seems to have returned to nearly normal now, with no swelling and very little of the numbness remaining. I was told that lymphedema would be a lifelong concern, and to always take extra precautions whenever flying and never get shots or BP on my left arm. In your case Kari, probably BP would be taken on your leg, and shots in the bum? When I went in to get my port installed, they put the BP cuff on my leg. I supposed that was to keep the equipment out of the surgeon's way during the procedure. Tracy, I hope this has helped somewhat? Kari, I hope your surgery in Feb goes well, with no complications afterward. Hugs and prayers to you both. Gracie

    Wow
    That is great that your swelling and numbness went away pretty much!!! Yes, my numbing is also under my arm pit all the way to my elbow including all breast area and upr right side of body. I can't imagine that this is going to go away,haha, but maybe if yours did, mine will too.

    Thanks for the input. Yes, they have told me to always do any BP and blood draws on my left arm from now on as to not "bother" the right at all.

    Tracy
  • Katz77
    Katz77 Member Posts: 598
    #6
    blazytracy said:

    Wow
    That is great that your swelling and numbness went away pretty much!!! Yes, my numbing is also under my arm pit all the way to my elbow including all breast area and upr right side of body. I can't imagine that this is going to go away,haha, but maybe if yours did, mine will too.

    Thanks for the input. Yes, they have told me to always do any BP and blood draws on my left arm from now on as to not "bother" the right at all.

    Tracy

    Lymphedema
    I'm a pretty active person, w work and hiking. I find that after strenous activities I swell more. I had r mast w 18/20 nodes positive. I have nubness at the pit and sometimes down my arm to the elbow. Surgery was in June.
    Do the exercises and I was measured for my " stocking". It's a compression stocking. I wear it when working/hiking and it makes a big diff at the end of the day. Might try it. Insurance covered the cost. (BCBS) They (medical supply place) it costs around 40.00 if it was out of pocket. i'm going to get me another one, so I don't have to wash it every nite. I work in surgery and feel the need for cleaniness. LOL Good luck
  • Marlene_K
    Marlene_K Member Posts: 508
    #7
    No swelling
    I didn't have any swelling, Tracy, and I watched for that diligently. I had a real lot of numbness on the site, under my arm and down my arm which has gotten quite a bit better. I had my mastectomy on Aug. 27th. Swelling, however, is something you should have checked. As I understand it, Lymphedema is not something that is curable but if it's taken care of right away, it is controllable. From what you wrote, I'm guessing the clinic doesn't think it's anything to be concerned about right now? Stay on it, lady... you don't want this to get worse!

    Hugs ~ Mar
  • New Flower
    New Flower Member Posts: 4,294
    #8
    gilli said:

    swelling in arm
    I would go see an expert at once. I see a lymphedema expert every two weeks and my swelling is only millimetres. I live in South Africa and we don't have lymphedema clinics but I would go at once. I do manual lymph draining massage twice a day as instructed by the person I am seeing and by doing this, and by her regular monitoring of my condition, and not carrying anything heavy on that arm and not lifting anything heavy and so on, am keeping it under control. From what I can gather, no one can predict what will happen but I would not waste any time in going to see someone. (I did not have any surgery but my swelling was caused from the radiation I had.)

    Tracy, do not wait
    until after radiation. You need to see lymphedema therapist now during your Chemo. Nobody knows if it going to be chronic or not.
    As Gilli I am seeing lymphedema therapist twice a week, and have been doing massage myself. Be aware that lymphedema therapist and physical therapist often two different specially, and you need someone who does manual not using pump. Compression sleeve should be helpful too.
  • m_azingrace
    m_azingrace Member Posts: 399
    #9
    Marlene_K said:

    No swelling
    I didn't have any swelling, Tracy, and I watched for that diligently. I had a real lot of numbness on the site, under my arm and down my arm which has gotten quite a bit better. I had my mastectomy on Aug. 27th. Swelling, however, is something you should have checked. As I understand it, Lymphedema is not something that is curable but if it's taken care of right away, it is controllable. From what you wrote, I'm guessing the clinic doesn't think it's anything to be concerned about right now? Stay on it, lady... you don't want this to get worse!

    Hugs ~ Mar

    Forgot to mention...
    I purchased a medical alert ID bracelet, specifically because of the lymphedema risk. The front side says
    "lymphedema risk
    left arm
    no shots or BP
    see back side"
    Then on the reverse there is other medical information. Not leaving anything to chance if I ever cannot speak for myself.
  • natly15
    natly15 Member Posts: 1,941
    #10
    Tracy I had a lumpectomy,
    Tracy I had a lumpectomy, removal of SLN and then an additional surgery to remove the rest of the lymph nodes because the SLN had some maloignanat cells. I'm still numb from my armpit down to my elbow. I also purchased an alert bracelet, but had alergic reaction to it. My arms are not thin, so I think my right arm looks larger, but my husband says its not. I've had an infection every since the 2nd surgery which finally seems to be improving. The infection disease doctor warned me to be careful with this arm. Same stuff everyone has been told. No BP or blood draws on this arm. Lets hope its not lymphedema. However, I have read that it can pop up anytime, even 15 years later, all the more reason to baby our arms.
  • m_azingrace
    m_azingrace Member Posts: 399
    #11
    natly15 said:

    Tracy I had a lumpectomy,
    Tracy I had a lumpectomy, removal of SLN and then an additional surgery to remove the rest of the lymph nodes because the SLN had some maloignanat cells. I'm still numb from my armpit down to my elbow. I also purchased an alert bracelet, but had alergic reaction to it. My arms are not thin, so I think my right arm looks larger, but my husband says its not. I've had an infection every since the 2nd surgery which finally seems to be improving. The infection disease doctor warned me to be careful with this arm. Same stuff everyone has been told. No BP or blood draws on this arm. Lets hope its not lymphedema. However, I have read that it can pop up anytime, even 15 years later, all the more reason to baby our arms.

    Infection
    Infection is also an ongoing concern. I had a lymphedema "lesson" after my surgery, and infection was one of the topics that was stressed. The gal said that even an unattended bug bite or a little scratch can cause big trouble. She said to always wear gloves while gardening to protect my hands, and I should wear rubber gloves for cleaning and if I do dishes by hand. I thought that was extreme until I also read it online. Another caution is to avoid wearing anything that might limit circulation, such as a tight ring or tight watchband. Natly, the bracelet I got is made from surgical steel, would you be allergic to that? Not fancy, but it does the job.

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