Lymphedema Questions?

linpsu
linpsu Member Posts: 747
in Breast Cancer #1
I know there are several of you out there who have lymphedema and I have some questions. How long after having your nodes removed did you get it? How many nodes did you have removed? Are women with more nodes removed at a greater risk of lymphedema? I remember a physical therapist saying that she generally sees it appear at around 9 months. This month is 9 months for me and I am a nervous wreck! I am flying tomorrow, so am convinced it will cause the lymphedema to start. I do have a sleeve to wear as a preventative measure, but I am still really worried. Any input from you ladies who are dealing with this - Re, Cavediver, Rague come to mind but I know there are others out there. Thanks for any tips. Linda

Comments

  • natly15
    natly15 Member Posts: 1,941
    #2
    Linda it is well over 9
    Linda it is well over 9 months that my lymph nodes ( 10 ) were removed. I have flown 3 or 4 times since then and so far thank God no sign of lymphodema. When will you be arriving in Cheryl's territory? I live in close proximity to the Mouse. Send me a pm if you can. Hugs and please dont worry about lymphedema. My motto is dont worry worry unless it arrives on your door step.
  • Rague
    Rague Member Posts: 3,653 Member
    #3
    "Old" Rague Here - LOL
    For me - Surgery (Rad. Mod. Mast.) was Oct, 21, 2009 and I started noticing a little mid/late Dec - was still doing Taxol then. Early Jan. 2010, I started seeing Certified Lymphedemologist. He ordered garments - night sleeve came in first. (Unfortunately though he is so knowledgeable, my 'L Guy' has very little experiences with post mast. lymphedemogy - he with VA so mostly sees men. The first day garments he ordered he ordered based on the one other woman he had treated were heavy compression - my body does not like it at all - light compression does best for me. Over a year now and still having issues. There is basically no time when I don't have either my day garments or night garments on. I got a FlexiTouch MLD in Jan which I use daily for an hour (that's the cycle it's set for) - it's great but doesn't 'solve' issues.

    Right now I'm waiting for a new custom glove to get here as I have very strange hands - they are somewhat 'webbed' so even my custom gloves haven't fit right and give me pain so the new one is supposed to be a bit different 'cut'.

    Just realized was rambling on. Wear your sleeve/glove and don't worry about it as you've had no issues yet. I do have but I'm definately not the 'norm'. Fly - have fun!

    There is not a one of us who want's to deal with lymphedema but the other option, once it is there, is not one I will accept - I will live and deal with it to the best of my (and my 'poeple's) ability.
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    #4
    Linda
    This is another of those areas where "everybody's different".

    Statistically your chances increase if you have more lymph nodes removed, but I had only 1 sentinal node removed and STILL developed lymphedema - mine was in the breast though, not in my arm.

    It's a good idea to wear the sleeve as a cautionary measure, so I'm glad you have one. The best thing you can do is to just be aware of it so that you can seek treatment early if it does start to appear. It's much easier to manage if you catch it in the early stages.

    I only have to do my massage a couple of times a week to keep mine under control.

    Have a safe trip!
    Cindy
  • missrenee
    missrenee Member Posts: 2,136 Member
    #5
    cindycflynn said:

    Linda
    This is another of those areas where "everybody's different".

    Statistically your chances increase if you have more lymph nodes removed, but I had only 1 sentinal node removed and STILL developed lymphedema - mine was in the breast though, not in my arm.

    It's a good idea to wear the sleeve as a cautionary measure, so I'm glad you have one. The best thing you can do is to just be aware of it so that you can seek treatment early if it does start to appear. It's much easier to manage if you catch it in the early stages.

    I only have to do my massage a couple of times a week to keep mine under control.

    Have a safe trip!
    Cindy

    Linda--sorry you have trip anxiety
    I had 23 lymph nodes removed in January '10 along with my lumpectomy. 10+ :( I was pretty numb for many months. When I started getting feeling back, I had some pain, swelling--but mostly in my breast and on the side of the ribs under my arm. This was about 6-9 months post-op, I think. I was fitted for a compression sleeve/glove for flying--which I wear every time. Also, it was recommended that if it is a long flight--wear them for several hours after you land. I also saw a cert. lymph therapist who did massage and ordered me a Flexitouch machine for at home use. She also taught my hubby to do Kinesio taping which helps me a lot.

    Like Cindy said--be aware of any changes or increase in pain/swelling. The best thing to do for lymphedema is to treat it immediately and not wait.

    Don't be scared to travel or that lymphedema could occur--just be aware and be proactive if it does. It kinda stinks to have to deal with it, but it is manageable.

    I wish you the best on your trip.

    Hugs, Renee
  • Katz77
    Katz77 Member Posts: 598
    #6
    I like Re's response, "don't
    I like Re's response, "don't worry till it's on your doorstep." You're a good girlscout, because your prepared.
    I had at least 30 nodes removed with 28 positive. I only swell around the elbow area. I consider it mild. I elevate on pillow and have a squishy ball that I squeeze around 20 times x3 in bed watching tv. I went to a maggage therpist who specialized in breast massage/ lyphedema. She taught me how to "drain" the lymph system. Starting with fingers, down past armpit, down rib cage, and across chest. Kind of tickle massage. Just wth finger tips and done lightly.
    Hardly had any issues over the winter, but starting to notice now the weathers getting warmer. Wear my stocking at night.
    Gues I'm lucky to have such little problems. I was told you my never have it, or it could come even years later. I thought I would have big issues, since so much was done. Reminds me of those poor people on discovery network. Woman with the 200lb leg etc... Lymph systems can just go bad.
    Have a good time on your plane trip. Maybe wear your "sock" as a precaution. Someone here a while back said her's would swell during plane rides.
    Funny, I wear cheaters for reading and have pairs of glasses by the bed, in the car,purse and work. I also have my socks in those areas. lol praying for skinny arms for you and a safe trip. Katz
  • Rague
    Rague Member Posts: 3,653 Member
    #7
    As you've never used your
    As you've never used your sleeve (do you have a glove or gauntlet - your hand is as inportant as the rest of your arm as it's the end) you don't know if you have the right compression? There is no "one compression fits all". Yeah I'm weird but heavy compression only makes bad worse.

    Go - have a good time - as you've had no problems you probably won't.
  • Rague
    Rague Member Posts: 3,653 Member
    #8
    Katz77 said:

    I like Re's response, "don't
    I like Re's response, "don't worry till it's on your doorstep." You're a good girlscout, because your prepared.
    I had at least 30 nodes removed with 28 positive. I only swell around the elbow area. I consider it mild. I elevate on pillow and have a squishy ball that I squeeze around 20 times x3 in bed watching tv. I went to a maggage therpist who specialized in breast massage/ lyphedema. She taught me how to "drain" the lymph system. Starting with fingers, down past armpit, down rib cage, and across chest. Kind of tickle massage. Just wth finger tips and done lightly.
    Hardly had any issues over the winter, but starting to notice now the weathers getting warmer. Wear my stocking at night.
    Gues I'm lucky to have such little problems. I was told you my never have it, or it could come even years later. I thought I would have big issues, since so much was done. Reminds me of those poor people on discovery network. Woman with the 200lb leg etc... Lymph systems can just go bad.
    Have a good time on your plane trip. Maybe wear your "sock" as a precaution. Someone here a while back said her's would swell during plane rides.
    Funny, I wear cheaters for reading and have pairs of glasses by the bed, in the car,purse and work. I also have my socks in those areas. lol praying for skinny arms for you and a safe trip. Katz

    Hmm - last time I talked
    Hmm - last time I talked with my Lymphedemologist we talked about weather effects. He agrees with me, says that he see more big issues during winter when the pressures are lower than summer (on average).
  • RE
    RE Member Posts: 4,591 Member
    #9
    You may never get it!
    Hi Linda,

    I got it during treatment my second go round about 15 months after surgery. It is the docs belief that mine was caused my an abundance of rads (16 weeks) in conjunction with the 33 nodes they removed. I had several plane rides prior to it showing up (all without sleeve because I did not know about lymphedema yet) and the flights did not cause me any harm. I have since traveled on many planes and sometimes I wear it and other times I do not, it just depends on how swollen my upper arm is. Please do not worry yourself too much over this, you are aware of it and that is good. Simply watch for the signs, heaviness in the arm, aching, rash etc. If you click on my name and go to I think it is page 32 I have posted 3 sheets of info on lymphedema that give guidelines and preventative things you can do that may be helpful to you. My onco gave them to me and I scanned them and posted them here a few years ago. Personally I have never heard the 9 months thing you mentioned. What I have heard is that it can occur years after treatment or never at all so please do not worry yourself too much, if you get it I am betting you will be diligent about taking good care of it and managing it. I have dealt with lymphedema now for 8 years and so far so good, only had a few infections and the swelling is in check.

    Gentle Hugs,

    RE
  • cavediver
    cavediver Member Posts: 607
    #10
    just saw this....
    Linda, well by now you have flown and I am guessing all was well. I had 12 lymphnodes removed and the first hint of lymphedema was @3 months later when I notice a slight swelling in one finger only. By 5 months later I could see the wrist and arm were a bit larger than the other arm. Here is the deal......... as you have read, this is not an exact science......some will get it, some will not. It could start within months, or maybe years............. BUT, it you do get it...you can deal with it...it is manageable...just need to get to a good PT with specialty in lymphedema. Some methods to control do not work for all of us...again, just like the caner and chemo s.e.'s, we are all different and our bodies react differently. I do have to use my pump 2x a day and wear a sleeve and glove (or the special tape).... But, please don't be scared.... It is what it is...... life will go on. I don't think anything you 'do' will trigger the start of it.
    Hugs
  • Katz77
    Katz77 Member Posts: 598
    #11
    Rague said:

    Hmm - last time I talked
    Hmm - last time I talked with my Lymphedemologist we talked about weather effects. He agrees with me, says that he see more big issues during winter when the pressures are lower than summer (on average).

    @rague
    Funny what were told. I was told swelling in summer cause vessels dilate with warm weather. I think maybe I'm just weird. My b/p drops when I'm out in the sun to long. Have sympathic nerve problems. Lol

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