Need feedback re:ONC and LE

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Halah
Halah Member Posts: 352
edited June 2014 in Lymphedema

I've read about LE but still have many questions. Please bear with me and I thank you in advance.

Last time I saw my ONC he said I was at low risk for LE. So is there this low vs high risk to LE? I thought we just had a risk for LE based on having surgery (I had bmx). He said I was low risk for LE because I had no nodes removed (but I corrected him to tell him I had the two sentinal nodes removed). Does the risk have to do with nodes being removed?

My ONC also said that if I need blood drawn it has to be done out of the arm, that we gotta do what we gotta do. Same thing with IVs, he said. Is this accurate? If we didn't use the arm, what would we use??

Once you have LE is it for life?

Once you have LE, can the symptoms go away and you no longer have evidence of LE?

Many thanks to you guys and especially Binney who I think y'all would agree is an angel!

Happy Holidays!
Mindy

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  • kira66715
    kira66715 Member Posts: 4,681
    edited November 2010

    Winterstorm--anyone who has had any nodes removed, or even surgery in the quadrant is at risk for lymphedema--your onc "forgot" you had sentinel nodes? Did they just take one or two?

    Technically, if you had no nodes removed on one side, you could carefully use that arm for blood draws and IV's and blood pressures--but Binney developed LE on the side with no nodes removed, so some risk remains.

    Here are the links I recommend:

    http://www.livestrong.org/Get-Help/Learn-About-Cancer/Cancer-Support-Topics/Physical-Effects-of-Cancer/Lymphedema

    http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

    http://www.stepup-speakout.org/what_we_need_healthcare_providers_to_know_about_lymphedema.htm

    Yes, LE is forever--but everyone is different, and some women have just mild swelling and respond to minimal intervention, while others have more severe swelling--despite treatment.

    Unfortunately, many doctors don't know much about LE.

    And yes, Binney is an angel.

    Kira

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited November 2010

    Winterstorm,

    There are options for blood draws and IVs.  I make them use my feet...not pleasant, but better than aggravating LE.  Your Onc just doesn't want to be bothered.  This is not about his or her convenience.  It is about your health and protection.

    Dawn 

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  • Halah
    Halah Member Posts: 352
    edited November 2010

    BoobsinaBox (love your ID lol), I am diabetic so can't use my legs or feet for that. Oh well, it sucks. I test my blood glucose on my fingertips and hate to do it and afraid to do it, but need to do it. Gosh it sucks!

    Kira, Thanks for the wonderful links! I had both sentinal nodes taken on each side (a bmx).  I am off to read the pages you shared.

    Thanks a bunch,

    Mindy :)

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  • kira66715
    kira66715 Member Posts: 4,681
    edited November 2010

    Mindy, I asked Binney to give advice--she knows all about diabetic testing, and everything else.

    Kira

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  • lago
    lago Member Posts: 17,186
    edited November 2010

    Mindy I had 10 nodes from the left (level 1 axillary) and 4 nodes from the right (sentinel). I was told that I should avoid BP and needles/IV on both arms but it is also a discretionary thing. When I had my port surgery they used my foot for the IV. My onc on the other hand wants me to get my BP on my arm because it's more accurate. I'm not trilled with this but I make sure that A. its my right arm and B. that they uses a manual BP because they don't pump it as tight.

    I would also check this link on lymphedema risk reduction:
    http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

    Yes I use latex clothes to clean all the time now. I also do the hand pumping especially when I work out. I do have compression sleeves/gauntlet for both arms for flying. I will be wearing them when I start lifting my weights. ( I never lifted more than 10lbs before surgery so I should be OK to slowly work up to that again starting with 3-5lbs).

    ``````````````````````````````````

    Remember that even if we should get lymphedema in the future it may be very manageable. What is key is diet and proper exercise. Good for lymphedema risk reduction and your diabetes.

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited November 2010

    Winterstorm,

    I am sorry.  What a predicament for you.

    Dawn 

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