Truncal/ Breast Lymphedema anyone else out there?

Hi GMA and bak:  I have truncal LE (breast, side and a bit on the back) plus some in my extreme upper arm.  I saw an LE therapist a few months after my surgery but the LE seems to be worse since that time.  She's a member of the LANA group but wasn't very good so you'll need to find someone you feel is helping you.  I know there's a list we should consult but as I said, the person I saw didn't help much but the second one I started seeing has seen me since and has been helpful.  You'll need to experiment unless you're lucky on the first try.  The first one didn't recognize my LE of the breast and thought it was just a little bit in the arm whereas the second just looked and diagnosed me right away as it was that obvious and started treatment immediately.  I think I went weekly at first, then every 2 wks, then 3 wks and now as needed.  I have a manual massage at the office and also an arm pump applied for 20 min.  I do manual LE massage on myself once or twice a day and that helps a lot.

Breast/truncal LE is supposed to be rather difficult to diagnose and you may want to use some compression.  If mine is bothering me I'll sleep in an Ahhh bra for a few days and I'll also insert something to help when wearing a bra, including a Swell Spot I bought from Lymphedema Products but you'll not want to do anything until you get directions from your therapist as we're all different in how the LE affects us.  I'm going to try the Ledder or something like that (not sure what it's called) treatments that we can find online on youtube.  They say it helps. 

Kira and Binney are the experts here on LE and can help you with most any question.  They're very kind and supportive and know more than anyone about our problem.  Good luck.  I'll be anxious to hear what your therapist says. 

Gma, I have truncal LE that involves mostly my left (mx) side, and my breast, back and upper arm to a lesser degree.  The #1 thing that helps me is wearing only sports bras (no more wires) with wide band side compression.  Also, not getting overheated (no hot baths, hot tubs, overheated exercising) is important, as any of those things can set off a painful flair, as can stressing my upper left side with weights, which I do, but very carefully.  Self massage also helps a lot when it happens, but it's definitely better to prevent it.  I've also noticed that my most recent flares have been getting worse (I'm 4 years post mx), and I'm concerned that if they continue to worsen or become more frequent, the LE could eventually involve my lower arm.  So keeping it under control is a high priority.  At their worst, my flares literally feel like someone is stabbing me in the side with broken glass.    

It's good that you're aware of the problem and hopefully can keep it to a minimum.     Deanna