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Oct 15, 2010 08:34PM
Aug 20, 2013 04:56AM
Of course you have every right to post on this thread, and I'm so glad you did! I know that we compare ourselves and decide if we have a "right to complain", but with LE even "mild" swelling sucks big time, and impacts all of us. Especially with the pain you're having, this is a serious problem for you.
I know Binney gets furious when she gets blown off with comments like "But your arms LOOK normal." Yeah, because she works at it 24/7.
I totally understand the concept of the shrinking woman: we swell/our world shrinks. I hate having to give up things.
One of the lecturers at the NLN (someone well known to us, who means well, but doesn't get it on some level), gave a lecture on LE and actually wrote in her power point, that successful accommodation to LE means "giving up". I was standing in the hallway when the next presenter, a woman who has LE and studies it, confronted her and said "As a person with LE, I would never counsel women that they need to give up."
The reality is that we do give up a lot. Spontaneity, strength, independence, and lots more.
my LE came on 3 weeks after surgery: I had cording--lots of it, and went out on a hot day and got bug bites, and my hand swelled up, and it never went away.
It makes me want to scream when our providers--and for some reason breast surgeons are particularly prone to this--deny our reality. "None of MY patients get LE." Of course they don't, because you refuse to acknowledge it.
I hope the stretches help. Here's a link to a page we put together on axillary web:
Saw a lecture on lymph node transfer, and unfortunately, it doesn't seem to be the miracle cure. But they are working on inflammation, genetics--hopefully there will be other options.
Laura: it sounds like you have cording=axillary web--check out the link, and see if it helps. Do consider getting a lymphedema evaluation, because some women will have pain before they have much swelling.
Boy, Estepp, you sure started something--and it's great to be able to share and support each other.
Knowledge is the antidote to fear, Ralph Waldo Emerson
5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-