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Topic: I got LE after mast and recon, no nodes taken

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: May 17, 2006 12:49PM

sherry7 wrote:

Hi there, I hear it so many times that I wanted to be sure and let people know that you can get lymphedema even if nodes are not taken during a mastectomy. My LE did not get diagnosed for six months past surgery. I really think that I had been dealing with it for a couple of weeks before it dawned on me what was happening. I had a feeling of a cuff around my wrist and upper arm, and padding under my arm that was bothersome. As a therapist I thought symptoms were trigger points and referral pain, so I worked the points. All this did was tick off the LE, I was baffled. In a few more days the swelling was visible in my chest, now I went into a spin. I was mad mad mad, I had no nodes taken, so I shouldn't have to worry about that stuff...we never really know do we. My point in writting this is that there are so few even professionals who know what to do with this that we have to take charge of our health more and more everyday. I told my doctor I thought I had BC, they said I had a busy breast, changed doctors. My diagnosis of LE has changed my life in so many ways. If I was not a massage therapist I might still be wondering what is going on with my body and even being an LMT, I confused symptoms of LE with trigger points because I was possitive I could not get it. Lessons are to be learned, I usually head for the hardest wall! Sherry
let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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May 17, 2006 01:44PM rhymeee wrote:

Namaste sherry,

man i am so sorry to hear you have this going on. I do thank you so very much for this post. I have been under, apparently the mistaken idea, that to develop LE there had to be axillia node removal.

Hope something can be done so that you get to feeling better !!!

gentle hugssssssssssssssssssss
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May 18, 2006 06:00AM sherry7 wrote:

Namaste Rhymee,
Thank you for your kindness...I started with arm and now its arm and trunkel in a months time. This is not something to take lightly. I read all the ways to prevent LE on the net. All I did was clean my house, company was coming and one day I woke up and it was there. We should not rule out the obvious because someone else said so in print. Listen, learn and pass it on, as a bc survivor its our batton to pass.
gentle hugssssssssss back sweetie!
let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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May 18, 2006 09:15AM ravdeb wrote:

yes...I'm sorry this has happened to you but I'm glad you have made a point of letting us all know. I'm in the process of getting a sleeve and glove for my overseas flight to prevent LE from starting up in the first place. Rads doc thinks I'm nuts because I have no signs of swelling or anything and only one node removed. He can think whatever...i'm taking precautions.

thanks for sharing...hope you are feeling okay.
ravdeb
IDC, 2cm, triple negative, grade 3, node neg Dx 9/5/2005, IDC, Left, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2-
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May 18, 2006 04:30PM sherry7 wrote:

Hi Ravdeb,
I think you are being very smart to be prepared, you want to enjoy your trip and prevent LE. I am glad that my sharing is helpful. I just don't want people to be misdiagnosed or not diagnosed at all til it is serious.
I am doing well for now, thank you! Sherry
let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+

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