Question about that Lymphedema

2Floridiansisters
2Floridiansisters Member Posts: 384 Member
edited March 2014 in Breast Cancer #1
First does everyone get it?

Do you only get it in the side of the surgery?

Where do you get the compression sleves at?

Once you get the lymphedema, do you always have it or does it go away?

Does moving your arms as soon as you can, help or hurt the situation?

I don't want this, I have enough to deal with as it is. I', all prepared to move asap, but good grief when does this end?

Love Ronda

Comments

  • helen e
    helen e Member Posts: 223
    #2
    Lymphedema
    Ronda,

    I only had 3 nodes removed and haven't had any problems since I healed. I had a lot of pain at first. My PT had me get a compression sleeve to use when I exercise or fly. I had never used it until last week. I helped my family move and stack some firewood we have in our yard. I didn't have any problems until the next day. I went to work and couldn't figure out why my arm was bothering me, then it hit me when I started rubbing it. I went home and got my compression sleeve, put it on and haven't had any problems since. I got mine from a place that sells orthotics. I'm sure your dr. can tell you where you can get them. They have to be ordered by a physician. You only get it on the side that the nodes are removed from. I hope this helps you.

    Helen
  • 2Floridiansisters
    2Floridiansisters Member Posts: 384 Member
    #3
    helen e said:

    Lymphedema
    Ronda,

    I only had 3 nodes removed and haven't had any problems since I healed. I had a lot of pain at first. My PT had me get a compression sleeve to use when I exercise or fly. I had never used it until last week. I helped my family move and stack some firewood we have in our yard. I didn't have any problems until the next day. I went to work and couldn't figure out why my arm was bothering me, then it hit me when I started rubbing it. I went home and got my compression sleeve, put it on and haven't had any problems since. I got mine from a place that sells orthotics. I'm sure your dr. can tell you where you can get them. They have to be ordered by a physician. You only get it on the side that the nodes are removed from. I hope this helps you.

    Helen

    Thanks Helen
    Yes that does help me alot Helen. I still find all this info confusing, seems the more I learn the more confused I get. You say you only get the lymphedema on the side that your nodes are removed on, well will they take out nodes on both sides since I am going to go with a double mastectomy?

    I would opt for a lumpectomy and pray for the best but due to the fact I have a sister in heaven and also because they told me my type of cancer most likely will eventually show up in my opposite breast, whether that's 5 years from now or 25, it could very well come back.

    So I want to help my chances as much ad I can. I hate that this is happening to me.

    I see a possible crummy future for the rest of my life, my deseased breast is on the right and I am right handed, how will I ever brush my teeth again?

    Lord help me please, Love Ronda
  • helen e
    helen e Member Posts: 223
    #4
    2Floridiansisters said:

    Thanks Helen
    Yes that does help me alot Helen. I still find all this info confusing, seems the more I learn the more confused I get. You say you only get the lymphedema on the side that your nodes are removed on, well will they take out nodes on both sides since I am going to go with a double mastectomy?

    I would opt for a lumpectomy and pray for the best but due to the fact I have a sister in heaven and also because they told me my type of cancer most likely will eventually show up in my opposite breast, whether that's 5 years from now or 25, it could very well come back.

    So I want to help my chances as much ad I can. I hate that this is happening to me.

    I see a possible crummy future for the rest of my life, my deseased breast is on the right and I am right handed, how will I ever brush my teeth again?

    Lord help me please, Love Ronda

    Node Biopsy
    Ronda,

    They did a sentinel node biopsy when they did my lumpectomy. They only took 3 and they came back negative, so they didn't have to take anymore when they did my mastectomy. I would guess that if you have invasive cancer they would take nodes on both sides to make sure the cancer hasn't spread. I had IDC on my left side and because it didn't spread they didn't see any need to take my right breast.

    Helen
  • Mama G
    Mama G Member Posts: 762
    #5
    helen e said:

    Node Biopsy
    Ronda,

    They did a sentinel node biopsy when they did my lumpectomy. They only took 3 and they came back negative, so they didn't have to take anymore when they did my mastectomy. I would guess that if you have invasive cancer they would take nodes on both sides to make sure the cancer hasn't spread. I had IDC on my left side and because it didn't spread they didn't see any need to take my right breast.

    Helen

    so far so good
    8 nodes removed along with my left boob. chemo and radiation and no lymphedema. I was told it can come any time, though. and any boo boo to that arm can bring it on. So don't worry about stuff that can only happen way down the road. Deal with a little at a time, girlie!
  • Rague
    Rague Member Posts: 3,653 Member
    #6
    I can onl.y speak for myself!
    I had no problems ith lymphedema for almost 2 mths after surgery - until I started having a lot of problems with the large seroma.

    I can assure you that there is no one who WANTS to have to deal with lymphedema!

    You will only have problems (if you have any) on the side (or across that side of the chest) that the lymph nodes were removed from.

    Yes, if you develop it, you will continue to have issues forever.

    I started working with my Lymphedemologist in Jan and we are finally getting close to the right sleeves and gloves. He is a very knowledgeable young man however as I'm going through VA, he has very little experience dealing with women with mastectomys - I'm his second. Because I'm a bit 'strange' (long arms, short fat fingers and broad hands, my sleeves and gloves need to be custom orders.

    You don't just walk in and say I want a sleeve and glove - All sleeves/gloves are not created equal - they come in different sizes and degree of compression. We started with the highest compression as he thought that because I'm quite active (and the other women he had worked with needed it) however, that's wrong for me. Put it on and immediately started getting major swelling. Finally got my sleeves that are the lowest compression not long ago and they seem to be the answer - not perfect but much better than any other. Next week we'll be remeasuring and ordering light compression gloves. My night sleeve is quite good when used with an isotoner glove.



    Another thought to pass on - remember that you never have blood draws, BP or anything done to the arm that has had surgery.
  • mjjones453
    mjjones453 Member Posts: 155
    #7
    Rague said:

    I can onl.y speak for myself!
    I had no problems ith lymphedema for almost 2 mths after surgery - until I started having a lot of problems with the large seroma.

    I can assure you that there is no one who WANTS to have to deal with lymphedema!

    You will only have problems (if you have any) on the side (or across that side of the chest) that the lymph nodes were removed from.

    Yes, if you develop it, you will continue to have issues forever.

    I started working with my Lymphedemologist in Jan and we are finally getting close to the right sleeves and gloves. He is a very knowledgeable young man however as I'm going through VA, he has very little experience dealing with women with mastectomys - I'm his second. Because I'm a bit 'strange' (long arms, short fat fingers and broad hands, my sleeves and gloves need to be custom orders.

    You don't just walk in and say I want a sleeve and glove - All sleeves/gloves are not created equal - they come in different sizes and degree of compression. We started with the highest compression as he thought that because I'm quite active (and the other women he had worked with needed it) however, that's wrong for me. Put it on and immediately started getting major swelling. Finally got my sleeves that are the lowest compression not long ago and they seem to be the answer - not perfect but much better than any other. Next week we'll be remeasuring and ordering light compression gloves. My night sleeve is quite good when used with an isotoner glove.



    Another thought to pass on - remember that you never have blood draws, BP or anything done to the arm that has had surgery.

    lymphedema
    I had sentinal node biopsy done at the time of my lumpectomy. My risks of not getting it are pretty good, but because I had radiation, It increases risk of Lymphedema. My PT told me to take precautions to prevent it. Wearing gloves while gardening, a full sleeve when baking, using Neosporin on wounds, not clipping your cuticles. Also, not having your blood pressure or any blood drawn from that arm. She did suggest getting a Medical alert bracelet for lymphedema (from lymphedema sight), which I did, but wonder if it is necessary. She did say if I fly that I should get a compression sleeve, but I rarely fly. I also lift weights, and am causious about going slow. It is a scary thought to me. Mary
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #8
    I can only speak for myself.
    I can only speak for myself. I had a mastectomy in 1987 and they removed all of the nodes that they could find (this was before sentinel days). My younger sister had the sentinel node biopsy. My older sister had DCIS and had no nodes removed. 2 of us had chemo and radiation. I had radiation twice. So far, none of us have had lymphadema. I think moving may help as we are all avid gardeners and very active. Good luck!
  • KayNYC
    KayNYC Member Posts: 495 Member
    #9
    more questions than answers.
    No, everyone does not get it. No one wants it but anyone who has had any lymph nodes removed can get it at any time.
    Usually, you get it on the side of your node removal.
    Compression sleeves are available at surgical supply stores but they should be properly fitted or more swelling and damage can occur.There are differing degrees of compression sleeves. They are usually ordered by the doctor and may be covered by medical insurance.
    Usually, either a Physical or Occupational therapist with specialized training (120 hours) can evaluate someone for lymphedema. They can recommend the compression sleeves,massage and exercises to address the problem that can be in the arm, the breast, hand on the side of the node removal.
    It seems that it is considered an adverse effect of surgery such as sentinal node excision.It's incidence is a matter of debate it seems.
    Yes, it can be managed and can be chronic.
    Exercises after surgery have been recommended to reduce it's occurrence however, I and others, have done them as recommended and still ended up with swelling problems.
    I have heard contradictory advice about how much activity is helpful or damaging.
    Sounds like we really don't know too much about lymphedema right? I have been going through the research on the internet and it appears it is a pretty common problem after treatment, surgical or radiation for breast cancer.
    Hopefully, you won't have to deal with it but it is very important to be aware of any swelling, heaviness or changes in your arm/hand/fingers following surgery. Swelling is not always the first symptom although it is probably the first one that the docs will be attentive to.The ACS has a good pamphlet about lymphedema. You can call them and they will send it to you free.
    Wishing you all the best. Take one day at a time. No need to cross this bridge if you don't need to.
    Hugs, K
  • jk1952
    jk1952 Member Posts: 613
    #10
    KayNYC said:

    more questions than answers.
    No, everyone does not get it. No one wants it but anyone who has had any lymph nodes removed can get it at any time.
    Usually, you get it on the side of your node removal.
    Compression sleeves are available at surgical supply stores but they should be properly fitted or more swelling and damage can occur.There are differing degrees of compression sleeves. They are usually ordered by the doctor and may be covered by medical insurance.
    Usually, either a Physical or Occupational therapist with specialized training (120 hours) can evaluate someone for lymphedema. They can recommend the compression sleeves,massage and exercises to address the problem that can be in the arm, the breast, hand on the side of the node removal.
    It seems that it is considered an adverse effect of surgery such as sentinal node excision.It's incidence is a matter of debate it seems.
    Yes, it can be managed and can be chronic.
    Exercises after surgery have been recommended to reduce it's occurrence however, I and others, have done them as recommended and still ended up with swelling problems.
    I have heard contradictory advice about how much activity is helpful or damaging.
    Sounds like we really don't know too much about lymphedema right? I have been going through the research on the internet and it appears it is a pretty common problem after treatment, surgical or radiation for breast cancer.
    Hopefully, you won't have to deal with it but it is very important to be aware of any swelling, heaviness or changes in your arm/hand/fingers following surgery. Swelling is not always the first symptom although it is probably the first one that the docs will be attentive to.The ACS has a good pamphlet about lymphedema. You can call them and they will send it to you free.
    Wishing you all the best. Take one day at a time. No need to cross this bridge if you don't need to.
    Hugs, K

    Like Cypress Cynthia, I had
    Like Cypress Cynthia, I had my lymph node surgery and radiation several (ten) years ago. I did have the sentinel lymph node biopsy, but they took several lymph nodes out; more than they normally do today. To date, I have had no problems with lymphdema, but I am very careful, not allowing blood draws or blood pressures from that arm. Also, I tend to lift things with my other arm. Otherwise, it's my dominant arm and do everything I used to do with it. I know that I've been very fortunate, but just wanted to assure you that not everyone has this problem.

    Joyce

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