Is this Lymphedema?

mbfit

I had a double mastectomy May 2011, and 4 lymph nodes on right side removed. I have had unexplained swelling in BOTH hands for the past year. But slightly more swelling on my right hand. My oncologist took me off Tamoxifen Feb. 2013…Its almost a year later and I still have swelling. Is this lymphedema? I'm so uncomfortable and have been to every type of doctor under the sun! Any suggestions are welcomed! Thank you.

BayouBabe

bumping for mbfit.  Any thoughts for her?

Moderators

Hi mbfit, and welcome to this wonderful community!

We're sorry you're having this problem. Until other members come along to post with their own experiences and advise you can read a lot of good info about lymphedema in the main Breastcancer.org site.

Hope this helps!

The Mods

Momine

Assuming they have not found any problems with your heart, blood pressure or clots etc, I would get myself straight off to a PT who specializes in lymphedema. The PT can assess and can give you a massage. There is no real risk that I can see.

carol57

mbfit, I agree with Momine, that you need a formal evaluation.  It certainly could be LE.  Here's a link to information about how LE is diagnosed: http://stepup-speakout.org/diagnosing_lymphedema....

and on the same wonderful site, how to find a qualified therapist to do the detective work with you: http://stepup-speakout.org/Finding_a_Qualified_Ly...

It may seem unusual that you have swelling in both hands, if this is indeed LE, but some studies in recent years have shown that LE is a systematic disease, and other studies are finding that sometimes secondary LE (such as after treatment for BC) presents in connection with a genetic predisposition to LE.  You may have been born with some susceptibility.  I had only 5 nodes removed and I have LE, although fortunately on just one side.  Some members here have bilateral LE, even though the only 'treatment' to one side was a prohylactic mx, i.e. no nodes removed other than the few that are in breast tissue.  So it's certainly possible to develop LE on your no-nodes-removed side.  

If you spend some time browsing the stepup site, you'll find some great ideas for managing swelling as you wait for an evaluation appointment, and you might try some of the strategies to see if anything helps.  We often suggest trying compression, and an inexpensive way to try that for hands is to google Imak Active gloves.  They're not as compressive as actual LE gloves, but lots of women here use them with success. 

I hope others will chime in with hand swelling experiences, and please let us know how you proceed.

Carol

Kicks

A Certified LymphEdema Therapist would be a good idea to evaluate where you are now.  Not all PT's (or OT's) are CLETs, though there are many who claim they 'know all about LE'.  It is possible for the uneducated ones to do harm.  The Facility I go to, the PTs are not allowed to do any PT, even in areas far removed from my LE, with me til they clear it with my CLET (OT). 

Of course, not all CLETs are equal - some are better (or worse) than others just as with everything. 

hugz4u

mbfit, Let us know how it goes and come here for support if need be. Do get checked out by a certified LE therapist as it could turn out to be the best money ever spent. With 4 nodes out it would be wise to get checked out anyway so you can get tips on prevention if you don't have LE.