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Tuesday, April 29, 2008 Pam asks

Q: do any of you have lymphedema in your arm from treatment of breast cancer?

I have had lymphedema in my arm and side for four years .  I got it about 18 months after my surgery.  I have went to lymphedema therapist and did the masaging and bandaging and it never went down.  Is there any other solution to getting the swelling to go down?

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4/30/08 5:56am

Yes, Pam, I have lymphedema. I keep it under control when necessary with a compression sleeve. If you're not wearing a compression sleeve, please go back to your doctor and find out why not! Then get one - you can get them it fitted for YOUR arm, which insurance should pay for (if you have insurance). If you ARE wearing a compression sleeve and it isn't helping, you should probably go through the lymphatic massage and bandaging again. They shouldn't just give up on you, I know that for sure. You may need to advocate for yourself; demand some help. Because they SHOULD be able to bring your lymphedema under control. And if they say they can't - look for another opinion, if possible. Good luck- PJH

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4/30/08 10:36am

Unfortunately Pam lymphedema is a fact of life for us cancer survivors.  The therapy is good because it teaches you how to help massage the area yourself to help releave the fluid build up.  If the massage techniques aren't enough, I say see your doctor to get a referral for a prosthetic company (like Hanger, I know they order sleeves) and go get fitted for a sleeve.  Once you get your sleeve, do no sleep in it and make sure you always have it with you to fly. 

And if you are still having problems (like I did) ask your oncologist to rx you a pnuematic sleeve/pump (it would likely be mailed to you, and is considered home medical equip.)

I used the sleeve for 1 hour every day for about 3 mo, and I haven't suffered any major problems since - and I suffered horrible pain and swelling (I called my arm a wing, it hung so low!) for about 8 mos. before I got my machine.  Most days you would find me holding my arm raised above my head to try to help with the fluids.

Now I have mine under control and I beleive you can too, it just takes some time!

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