Is this true?

It is not true.

about it he assured me that "only" overweight women get LE and that I was not at risk (I am not skinny but not significantly overweight). Is this true...

Nope, and you will encounter many ignorant people when it comes to LE so you are wise to post here.

Hope you never get !  Good Luck.

Lily - as others have said, your consultant is flatly wrong.  You were smart to sense that the information was incorrect and to ask for correct info. 

If you're up to it, you may want to print out some of the information from the Step Up Speak Out website and give it to your "consultant" and if he's not receptive, give it to the director of that facility.  His information is not only wrong, but dangerous.  You were smart enough to realize that it was wrong and to seek additional information.  Other women may not be able to face that reality, and because he's telling them what they want to hear, they'll believe him and not take any risk reduction measures.  By the time they get accurate information, it may be too late and they may already have lymphedema - lymphedema that might have been prevented had they been given accurate information from the get go. 

If you saw the gal that was attending the same LE seminar that I attended you would have taken a double look. Both her arms had sleeves and gloves on. Her long arms were skinny as toothpicks...... Well... not that skinny but they were like a 6 year girls arm size in diameter. Any doc would have doubted her but seeing that she was well known Le advocate I am sure she educated whoever she ran into and set the docs straight. She started out so swollen and got her arms down to her normal small size.



By the way my LEist says if I lose weight my LE will improve somewhat.

Lily, yes anyone who has had any nodes cleared is at risk for the rest of their lives of developing LE. That is a given. Then we can throw this into the mix: there are all sorts circumstances that can lessen that risk or heighten it. It is a fortunate person who has been educated on the facts before surgery and an unfortunate one who has been given a false sense of security like you have. There are plenty of women who are not overweight who have developed LE, and even from only 1 node taken.

Add me to the list of thin women with just three nodes out who got LE.

The risk factors are many: surgery, radiation, chemo, genetic predisposition, prior injury--and what happens is, your body has the capacity to transport lymphatic fluid--it's called lymphatic transport capacity--and some of us have robust lymphatic systems, and some of us have weaker ones--and when that capacity gets overwhelmed, you swell.

Often, with radiation, the process of radiation fibrosis progresses slowly over the years, and then there is a trigger--inflammation, an infection, a bug bite, an air plane flight--and suddenly you swell.

Stepupspeakout has been mentioned, but no one has linked it that I've seen:

This is for your doctor: http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

And this is for you: http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

No one knows the exact incidence of how many women get lymphedema, as there is no one accepted diagnostic standard, but here is a link to the approximate risk for women with various treatments: http://www.lymphedemablog.com/2012/09/08/the-risk-of-breast-cancer-related-lymphedema-over-time/

The odds are always in your favor that you won't get it, but if you do get LE, you need a doctor who acknowledges it and sends you promptly for treatment.

I got it as a fit size 4 - so not true at all. However, my doctors all now tell me with lymphedema, the skinnier the better. I had a doctor's appointment yesterday and I am trying an anti-inflammatory diet to see if it has any improvement on my lymphedema. She is certain from her other patients that it will help.