lymphedema

Mosis50
Mosis50 Member Posts: 59
edited March 2014 in Breast Cancer #1
I am a three year breast cancer survivor and have only recently started experiencing lymphedema. I thought I was not going to have to endure this but three years post surgery, I am doing PT and now wearing a "sleeve" to keep down the swelling. It is a gentle reminder of my battle that is always there, never completely in the past. Thanks for a place to share this. Susan

Comments

  • ever1
    ever1 Member Posts: 26
    #2
    Hi Susan - I have just recently started having lymphedma also. In Feb, 2005, I had a mastectomy & reconstruction and I finished Chemo in July, 2005. I didn't think much about lymphedma until in March, 2006, my arm started swelling and feeling really tight. It became painful to raise my arm or straighten it out. The skin was very sore to touch. The fluid was also in my hand and fingers. I went to the doctor in April - they recommended physical therapy and gave me a glove to wear at night. I have finished therapy. Now I can move my arm without it hurting. The upper part of my arm is still about 1 inch larger than my other arm. The swelling is now only on the top of my hand, my thumb and my pointer finger. Is the therapy working for you? Did they tell you what may have caused it to happen? I really couldn't get any details as to why it happens except that it had to do with the removal of the lymph nodes.
  • LesleyH
    LesleyH Member Posts: 370
    #3
    ever1 said:

    Hi Susan - I have just recently started having lymphedma also. In Feb, 2005, I had a mastectomy & reconstruction and I finished Chemo in July, 2005. I didn't think much about lymphedma until in March, 2006, my arm started swelling and feeling really tight. It became painful to raise my arm or straighten it out. The skin was very sore to touch. The fluid was also in my hand and fingers. I went to the doctor in April - they recommended physical therapy and gave me a glove to wear at night. I have finished therapy. Now I can move my arm without it hurting. The upper part of my arm is still about 1 inch larger than my other arm. The swelling is now only on the top of my hand, my thumb and my pointer finger. Is the therapy working for you? Did they tell you what may have caused it to happen? I really couldn't get any details as to why it happens except that it had to do with the removal of the lymph nodes.

    Hi Susan,

    I met a PT who specializes in care of BC patients and I am going to be starting PT with her to strengthen my arm and, hopefully, minimize the risk. Can you give us any idea why it happened - I mean beyond the obvious - surgery and radiation? I am trying to prevent it. I spoke to one woman with lymphedema and she thinks that she just over-used the arm. She didn't rest when she was tired. Do you think that was the same for you?

    BTW, I did read that researchers are doing clinical trials on Pycnogenol (pine bark extract) for lymphedema. I now take it every day.

    Hugs.

    Lesley
  • KathiM
    KathiM Member Posts: 8,028 Member
    #4
    LesleyH said:

    Hi Susan,

    I met a PT who specializes in care of BC patients and I am going to be starting PT with her to strengthen my arm and, hopefully, minimize the risk. Can you give us any idea why it happened - I mean beyond the obvious - surgery and radiation? I am trying to prevent it. I spoke to one woman with lymphedema and she thinks that she just over-used the arm. She didn't rest when she was tired. Do you think that was the same for you?

    BTW, I did read that researchers are doing clinical trials on Pycnogenol (pine bark extract) for lymphedema. I now take it every day.

    Hugs.

    Lesley

    Lesley,
    Great link.....
    http://www.breastcancer.org/lymphedema_info.html
    everything you always wanted to know about lymphedema....
    Hugs, kathi
  • tlmac
    tlmac Member Posts: 272 Member
    #5
    My surgeon told me lymphedema is more likely in women who have had an axillary dissection as opposed to a sentinel node. The deeper they cut (level 1, level 2 or level 3 nodes), the greater the risk. I was told not to lift anything greater than 10 pounds, avoid blood pressure cuffs and needle sticks in that arm, wear covering in the sun to avoid a burn, avoid being outside without long sleeves at dusk or dawn when the mosquito is biting, protect the arm from cuts or bruises that might get infected and even use moisturizer to avoid dry skin that might cause me to scratch. A close friend developed lymhedema after traveling by airplane on vacation (without a compression sleeve). It can occur immediately after surgery or down the road as many as 10-15 years. Once our lymph system is compromised by the removal of the nodes, we are always at risk. I understand therapy is very effective. Best of luck with yours.
    terri
  • LesleyH
    LesleyH Member Posts: 370
    #6
    KathiM said:

    Lesley,
    Great link.....
    http://www.breastcancer.org/lymphedema_info.html
    everything you always wanted to know about lymphedema....
    Hugs, kathi

    Lots of good info. Thanks Kathi.

    Hugs back at ya

    Lesley
  • Mosis50
    Mosis50 Member Posts: 59
    #7
    Thanks for all the replies to my post. I do not know what caused the lymphedema to start. I do have a scratch on my arm and I did some heavy yard word during the week before the swelling. The PT and massage has helped and my physical therapist wants me to continue for just another week. I know I have to be careful with air travel and I need to wear the sleeve when I am on a flight. You are a great group. Thanks for caring. Susan
  • LesleyH
    LesleyH Member Posts: 370
    #8
    Thank you for the heads up, Susan. I had started to get careless.

    I have a question for any quilters out there. How do you protect your finger underneath from the needle. I have pretty good calluses, but I guess that stabbing a needle into my finger regularly is probably not a good thing.

    Hugs.

    Lesley
  • KathiM
    KathiM Member Posts: 8,028 Member
    #9
    LesleyH said:

    Thank you for the heads up, Susan. I had started to get careless.

    I have a question for any quilters out there. How do you protect your finger underneath from the needle. I have pretty good calluses, but I guess that stabbing a needle into my finger regularly is probably not a good thing.

    Hugs.

    Lesley

    I'm not a quilter, just an old lady....how about a thimble? (I know, it would be awkward at first, but over time....)
    My daughter does loom afghans, her fingers get raw from the yarn...we bought a pair of cotton lightweight gloves for her...seem to do the trick.
    Hugs, Kathi
  • LesleyH
    LesleyH Member Posts: 370
    #10
    KathiM said:

    I'm not a quilter, just an old lady....how about a thimble? (I know, it would be awkward at first, but over time....)
    My daughter does loom afghans, her fingers get raw from the yarn...we bought a pair of cotton lightweight gloves for her...seem to do the trick.
    Hugs, Kathi

    I don't know how a thimble would work. I use a thimble for the pushing hand, but my left hand rests under the quilt and feels for the needle pushing through so that I can rock the needle through again. I can't think how I would do it without being able to feel the needle coming through. I guess I need to learn a new technique but after 20 years...

    Hugs.

    Lesley
  • KathiM
    KathiM Member Posts: 8,028 Member
    #11
    LesleyH said:

    I don't know how a thimble would work. I use a thimble for the pushing hand, but my left hand rests under the quilt and feels for the needle pushing through so that I can rock the needle through again. I can't think how I would do it without being able to feel the needle coming through. I guess I need to learn a new technique but after 20 years...

    Hugs.

    Lesley

    Then how about thin gardening gloves, with the rubber stuff on the fingers? (DARN this woman...does she EVER stop trying to FIX things...hehehehehehhe).
    back at ya, Kathi
  • LesleyH
    LesleyH Member Posts: 370
    #12
    KathiM said:

    Then how about thin gardening gloves, with the rubber stuff on the fingers? (DARN this woman...does she EVER stop trying to FIX things...hehehehehehhe).
    back at ya, Kathi

    I like all your suggestions. Hey, something's gotta work.

    L
  • 24242
    24242 Member Posts: 1,398 Member
    #13
    LesleyH said:

    I like all your suggestions. Hey, something's gotta work.

    L

    I was just going to ask if there was injury at all that could of caused the onset of lymphedema. The reason we swell is because the lymphnodes are a place that takes the infection away from affected areas and since ours has been altered we now have pooling problems. I have been fortunate, my lymphedema has been minimal and wonder if that is because I have exercised my arms right out of surgery and now do work that is mostly arm movement in painting and taping drywall. Exercise, Exercise, Exercise...
    Tara
  • Footprints
    Footprints Member Posts: 1
    #14
    24242 said:

    I was just going to ask if there was injury at all that could of caused the onset of lymphedema. The reason we swell is because the lymphnodes are a place that takes the infection away from affected areas and since ours has been altered we now have pooling problems. I have been fortunate, my lymphedema has been minimal and wonder if that is because I have exercised my arms right out of surgery and now do work that is mostly arm movement in painting and taping drywall. Exercise, Exercise, Exercise...
    Tara

    Hi Friends, I am new, But have had lymphedema since I had my breast cancer(also colon) They check the lymph glands and now full lymphedema and wear a body suit. I am fighting to get a new one cause its worn. You people sound so caring and I am glad I found you. I am on the Lymphland.com I welcome people, So if you want to say hi come visit, But mostly I need to learn how to fight the medical field to get help. Take care, Luv, Debbie

Discussion Boards