Rads and LE

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Frill
Frill Member Posts: 311
edited July 2016 in Lymphedema

I am starting Rads next month and had LE starting about 2 months or so after node removal - as soon as it could technically be dx'ed as LE.

Insurance is refusing PT now, basically by approving one session at a time and not telling me they approved it.

So when I could have a big flare up, I'm going to have no resources. I'm really nervous about radiation and how it's going to affect my LE.

Did anyone have LE before they started rads? How did you keep it under control, did you do anything differently?

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  • Outfield
    Outfield Member Posts: 1,109
    edited July 2016

    This is a tough one. Do you like the radiation oncologist? Is it someone who actually cares? I'd ask that person or office first what they think you should do. If they say "Oh, don't worry about it," tell them you need a better answer than that. I'd also specifically ask them if they think you'll be able to wrap during treatment. Do you know how to wrap (assuming it is your arm)? I haven't been on the boards much for the past couple years, so I may not be totally up to date, but that's the most flexible way I know to get a flare down. It doesn't matter how big you've gotten, you can still wrap. You can take it off and reapply if you didn't get it fit right. So if you don't know how to wrap, make a point to learn that.

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  • xxyzed
    xxyzed Member Posts: 230
    edited July 2016

    I haven't had radiation yet but the radiologist said that I could wear my sleeve and glove during the radiation treatments and in the event of any swelling they get physio onto it straight away. My physical therapist has previously said that both chemo andradiation is likely to upset my arm and hand and they will do what they can to get me through and then work on what's left afterwards. I had extensive lymph node involvement so unfortunately radiation is not optional.

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  • Frill
    Frill Member Posts: 311
    edited July 2016

    My problem is I had LE so early and it didn't respond, so now I've used up my PT visits for the year. It really scares me to try to take care of it on my ow

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