do i need LE specialist?

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fredntan
fredntan Member Posts: 1,821
edited June 2014 in Lymphedema

I just started my second phase of chemothera.py. Have 10 more weeks of taxol.



My rt mast with TE & 17 axillary nodes removed was sept 8th. I still have this puffiness under armpit. Its unchanged in size

I just graduated from PT(due to insurance).when you see LE specialist is this a one time visit? I dont think there are any in my area.



Radiation will follow after chemotherapy.

Don't I need compression sleeve. Who orders that?

I am having more discomfort in arm/tell area.but I have upped mt stretches. E ercizes.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited December 2011

    Fredntan, you are at high risk for LE and the ideal would be to have you evaluated by a qualified LE therapist (I guess your prior PT wasn't a LE therapist):

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

    The therapist could take baseline measurements, assess you and teach you some LE risk reduction behaviors and possibly some exercises and manual lymph drainage.

    Depending on your needs, it would be a single visit, or a series of visits.

    As far as compression: you should have both a sleeve and hand protection--usually a gauntlet if you've had no finger swelling. The purpose is for flying and if you have any symptoms--heaviness, achiness, swelling of the arm, and possibly for exercise. There is controversy about wearing compression garments if you don't have LE---it's most clearly indicated for flying. Poorly fitting compression can trap fluid so it can cause trouble if not fitted well.

    Any physician can order it, but you'd have to go to a DME company/fitter to get them.

    I'd think a LE therapist evaluation would be a good idea, as chemo, rads, ALND all put you at risk, and knowledge is important.

    Hope that helps.

    Kira

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited December 2011

    In my opinion, everyone who has surgery to the breast, SNB, dissection, or otherwise, should be under an LE therapist's care.  My PT informed me at our last appointment that many PTs consider anyone who has had surgery to this area to have, not just be at risk for, lymphedema.

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  • Momine
    Momine Member Posts: 7,859
    edited December 2011

    My surgeon was very nonchalant about the whole thing, and juts kept saying I wouldn't have a problem, no need for special intervention, sleeves or whatever. I finally insisted on a PT with lymphedema certification. She has been a godsend! I can highly recommend it, especially while you are still under treatment. Both chemo and rads increase your risk of lymphedema. An experienced PT can do a lot to help your comfort level and keep down any problems.

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  • fredntan
    fredntan Member Posts: 1,821
    edited December 2011

    I made appoint for feb with LE specialist. I'm having the doc write script for lymphedema eval/treatment. and that shouldn't go towards my PT to get complete ROM back in that arm after radiation. those would be two seperate things. my insurance said I get pt for 60 days or 60 visits consequtively for each problem.

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  • fredntan
    fredntan Member Posts: 1,821
    edited December 2011

    I just thought of some questions for you'll



    After radiation isn't that when LE can start for me? Will the size of my arm change after radiation? So if I see a LE specialist do you get sleeve if there is no LE? Should I wait to see her for right before rads? Cause my insurance says I can see her within 60 day window per year.



    And one more if I don't have any LE do I wear sleeve as prevention ,and glove too?



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