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Topic: Lymphedema or something else?

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

Posted on: Aug 22, 2006 03:43PM

ladydi wrote:

Hi all, I hope you can help me. I had bilatteral mastectomy in mid April. Since then, I have had a fluid patch under my right arm (non cancer side). My left arm and armpit seem more normal, but on the right I have a large fluid patch under the arm about 4inches by 4 inches wide and alot of numbness under the arm going down the back side of the arm about 4 to 5 inches. Also, my underarm is tender at times. Not pain exactly but tender. Is it possible this is Lymphedema or just a side effect of the surgery? I called the office a month ago and the nurse said that it was normal. Is it? Or should I get in to see the surgeon?

Thanks for any input!
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Aug 22, 2006 05:07PM Binney4 wrote:

Wow, Dianne, what a cheery atavar! Did you take the picture yourself?

You know, the things you're describing could be either surgery side effects or lymphedema (LE), and it would be really helpful to know which. Seeing as how so many of us have had difficulty getting accurate diagnoses from our doctors (because LE is not taught much in our medical schools or in nurses training -- don't know why not), you might want to insist on an evaluation by a well-qualified LE therapist.

There is as yet no state or national training standard for LE therapists, so anyone with a week-long "quicky" course can hang out their shingle. So what you're looking for is someone who has had at least 135 hours of specifically LE training beyond their OT or PT (or MD or RN or MT) certification and at least a year of experience in treating it. Here's a web site with links to list of qualified therapists by geographic area:

If you see an LE therapist, she (or he) will also be able to get baseline arm measurements for future reference and teach you about prevention guidelines, skin care, and prophylactic LE massage. All good things, whether it's LE or not. You're right to be concerned about this, as LE is certainly possible after any chest/breast surgery, including prophylactic mastectomy. (My surgeon assured me I had nothing to worry about where LE is concerned, but I now have LE on both sides -- hands, arms, axilla, chest, and back.)

LE is staged (like bc), so if it's LE, the earlier you begin treatment the better your outcome. And the more likely you are to avoid serious infection or further tissue damage.

Sorry to take so long and not even answer your question! Please do keep us posted and let us know what you discover.

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Aug 23, 2006 07:58AM ladydi wrote:

Binney, thanks for your input. I will do some more research and ask more questions. Probably start with my surgeon and go from there.

Yes, the avatar picture is from my garden...

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