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Abdominal lymphedema

PostPosted: Wed Mar 21, 2012 1:19 pm
by Marilyn Rudenstein
I got arm lymphedema about 1 1/2 years ago, secondary to breast cancer and radical mastectomy done 40 years ago. I wear a compression sleeve during the day. It is still in the first phase, I think. Several months ago I noticed that my abdomen looks like I am 8 mos. pregnant. I can't wear any of my slacks anymore. I also have some IBS. Never thought it could be lymphedema in my stomach! I thought I was just developing fat there post menopause.

What can I do to find out if in fact, it is lymphedema?

Please help! I am desperate. Can arm lymphedema also go to the abdomen?

Marilyn

Re: Abdominal lymphedema

PostPosted: Thu Mar 22, 2012 6:10 am
by patoco
Hi Marilyn

Super welcome to our family! But, I am so sorry to hear about the possible spread of the lymphedema.

The answer to your question, is yes, lymphedema can spread. There are many many of us, including myself to whom this has happened.

I always had leg lymphedema, then after chemo for lymphoma in 2005/2006 I exploded with fluid. The lymphedema moved into my abdomen, my arms, hands, and even into my pulmonary cavity. For years I had to drain fluid from my lung cavoty every three days.

That seems to have stopped and the arm lymphedema has reversed itself almost 100%, but the abdominal and leg lymphedema is still there.

It is possible to have an all over lymphoscintigraphy. I had one in 2060 that clearly showed the thoracic duct lymphatics basically was almost totally shut down as were the right side lymphatics.

Also, if it is in the abdomen. you may in fact develop signs of IBS. Further tests on me indicated that the actual intestinal tract has become swollen and my body can not process fats and protein correctly. This has lead to a terrible amount of ascites.

Your lymphedema therapist should be able do abdominal massage and there re garments that you can wear that will help.

Because of the lung fluid, I have been super limited in what I can and can not do with compression, so much to my dread, I am taking large amounts of diuretics to help control mine.

Here is a page that will explain lymphscintigraphy.

Lymphoscintigraphy

http://www.lymphedemapeople.com/wiki/do ... intigraphy

Pat