Anyone with lymphedema from rads?

I started having difficulty with LE just two months after finishing rads. I had lumpectomy with sentinal node and three other nodes removed. I had 33 rad treatments to axillary, supraclavicular and intra-mammary lymph nodes along with whole breast and boosts. I asked to see a lymphedema specialist because my axilla, breast and chest were swollen and my hand on that side would get numb. The RO and surgeon said no lymphedema but thought a visit to the LE specialist would help with range of motion of my arm and shoulder. The LE specialist told me that I did have LE of the breast and axilla and gave me a whole set of exercises to do along with instruction on how to do manual lymph drainage. He prescribed a sleeve, gauntlet and compression bra. I am doing better and I have noticed that the bra helps more than the sleeve with the numbness in my hand. I did not wear that bra yesterday and by mid-morning my fingers were tingling. He thinks the swelling is pressing on the brachial nerves going into my arm.

I just ran into a woman who works where I do who went through the same treatment I did about 5 years ago and she asked me about stiffness and swelling, as she was beginning to experience that herself and she said she wished that the RO had been more open with her about what could happen...my RO still insists that I am not having any side effects from radiation, even though the entire area is sore and tender and I can no longer life my arm any higher than my shoulder!

Kicks - Did your RO do anything to help keep your LE under control during RADs? I started playing the fun LE game during Taxol, too. I'm really scared about doing rads and what it's going to do to my arm because I haven't been able to get it under control. One day I woke up and it was almost normal and stayed that way for awhile, basically from me losing weight. It's the only change. I had stopped MLD because of an infection at the time. But now it's back to being back and forth, although never nearly as bad as Taxol.

And insurance is being a complete pill about PT. Grrrrrrr

Cookie, that makes sense. But is there anything to do about it? I need a - how to improve your lymphatic system in 20 or 30 easy (or hard) steps. Are we just stuck with what we've got?

Going into rads with a paw instead of a hand just freaks me out. Well, some days it's a hand. I just really haven't sussed out what causes the hand days or the paw days, unless stress plays a big part of it.

Not eating at all just isn't the best way to control my LE, but that's the one that works the best. The recommendation to get 60g of protein a day during rads so contrasts with that, unless I find some fab protein shake with no sugar.