debunking Lymphedema risk reduction behaviors

Options
glennie19
glennie19 Member Posts: 6,398
edited May 2016 in Lymphedema

Comments

  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited May 2016

    Wonderful article by Dr. Nudelman

  • Binney4
    Binney4 Member Posts: 8,609
    edited May 2016

    Brava for your therapist, Glennie! She's on the ball and not afraid to reach out to protect her patients and others at risk.

    Be well!
    Binney

  • dtad
    dtad Member Posts: 2,323
    edited May 2016

    Thanks for posting but it still leaves me wondering....should I be concerned about a flight to Italy in a few months? My doctor poo poos all of the risk factors. His theory is if you are going to get it, you are going to get it no matter what you do. Confused....

  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2016

    Even if it's true...wouldn't you want to delay it?

    I mean, on some level I agree, I probably would have gotten LE from something at some point, but why would you not try to avoid it.

    That being said, non LE women are often given garments that do more harm than good for prevention.

    I see women wearing the sleeve with no glove about to get on a plane for prevention.

    Here is the issue, it's hard to get fitted properly, it takes trial and error, and sometimes months, that is a lot for someone who doesn't have le to go through.

    If you are going on a long flight, and willing to make sure you have properly fitted garments, and wear them for a while first, then I say go ahead, but that is a lot of ifs. I think the worst thing to do if you don't have LE is get on a plane for hours with the wrong stuff.

  • Jennie93
    Jennie93 Member Posts: 1,018
    edited May 2016

    It's a tough choice. I'm going to be flying for the first time since surgery soon, and I still haven't decided whether to wear the compression as prevention or not. I was professionally fitted, but have never worn the sleeve & gauntlet for any length of time because they hurt.



  • CelticSoul
    CelticSoul Member Posts: 2
    edited May 2016

    Thank you so much for sharing. I was thinking that snce I only had 2 sentinel nodes removed I didn't have to worry abot LE. I see now there is the radiation factor as well.

  • SuC
    SuC Member Posts: 55
    edited May 2016

    I had 7 nodes removed. I have done several (very) long haul flights (Australia to Europe) with no sign of lymphedema. I do always make sure I do stretches of my arms above my head at regular intervals. I would worry about wearing tight garments if they were not properly fitted


  • Jennie93
    Jennie93 Member Posts: 1,018
    edited May 2016

    SuC, did you go on all those flights without wearing any compression? That is encouraging. I had 6 nodes removed but am considered high risk because A) already have truncal LE, B) they radiated the heck out of the remaining nodes, and C) have gained lots of weight (thanks a lot, tamoxifen).



  • HomeMom
    HomeMom Member Posts: 1,198
    edited May 2016

    I gained about 20 lbs and had 29 nodes removed and am showing no real signs of LE. I did wear a sleeve on a plane to Europe last month with no affects at all.. I assume I kept it from progressing to LE. I have a friend who had 6 nodes removed and wears a sleeve every day. She asked me if I have been a sweater, and I did have issues with sweating all my adult life. She thinks that may help somehow.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited May 2016

    Jennie93, if your garments hurt you should go back to the fitter, and get refit.

    I would NOT wear garments that hurt on a plane if you have no LE.

    for that matter, I would not wear garments that hurt on a plane if you have LE.

    I would wear the garments when you exercise to break them in and make sure they fit.


  • Jennie93
    Jennie93 Member Posts: 1,018
    edited May 2016

    I can't do that because our insurance changed this year, and none of this stuff is covered any more, and we simply cannot afford it right now.

    Mind you if there were good studies showing that "Yes! Wearing compression absolutely will prevent LE caused by flying! Guaranteed!" Well. Yeah. I would do whatever it takes to get it done. But with all the controversy now, some experts insist that even well-fitting garments might do more harm than good, if you don't already have it.............. I think I'll pass.



  • LtotheK
    LtotheK Member Posts: 2,095
    edited May 2016

    It is a very complicated issue, as my therapist indicated some studies show wearing garments when there is no evidence of active lymphedema could precipitate it. I do wear a sleeve for flights. I have also read the length of flight is not the issue, it is the initial takeoff. That can range flight to flight.

  • 1step
    1step Member Posts: 110
    edited May 2016

    I had 5 nodes removed. At the time of surgery my BMI was in normal range. Within 2 weeks of surgery, I had truncal and arm LE. The idea that infection and obesity are the only risk factors are laughable. Before they start making statements like that, maybe there should be a lot more research done.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2016

    I discussed the study with my PT (an LE specialist and educator as well at PT) and her take was that it would take many more studies for her to feel comfortable advising women to abandon pro-active strategies. Basically, her question was "Why would you risk it?" which is pretty much how I feel.

    The scary thing is that the nurses at the infusion center are already saying they've heard it's o.k. to do BPs and IVs on the 'at-risk- side.

  • glennie19
    glennie19 Member Posts: 6,398
    edited May 2016

    Maybe print a copy of the article and take it to the infusion center?

  • New-girl
    New-girl Member Posts: 358
    edited May 2016

    I had 16 nodes removed and take precautions as in sleeves on all flights.  Surgery was 4 years ago and now I am in radiation.  I got a small mosquito bite three weeks ago and while innocent in the beginning it turned into a major infections with me on steroids, antibiotics and cream.  Was it related to my situation?  I will never know but I still keep a very close watch and take precautions.

  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited May 2016

    have met several women who got LE years after surgery from things like bee stings. I'm being so careful. No one is using my arm as an experiment for BPs etc. my LE therapist said to do lymph massage when on a flight to keep the lymph moving

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited May 2016

    I am going to start travelling on a plane for work now. China, Germany, etc. I only had two lymph nodes removed, and no lymphedema that I know of. How do you know if u need compression, and where do you go to get fitted?

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2016

    Good idea, Glennie! I'll do that. They certainly weren't pushing me to use my left arm but were suggesting it would be o.k., so I think so 'continuing education' from a patient might be a very good idea. Thank you!

    New-girl - I'm sorry for all the issues you're handling right now. I hope the infection clears up soon and doesn't lead to any LE issues.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2016

    Tresjoli - You could ask your breast surgeon, RO or even your MO for a referral to a LE-trained PT who could then advise you regarding risk and risk-reduction steps you can take while traveling. Just make sure your PT really does know LE!


Categories