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Results Finally Help Results Finally Help

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  #1  
Unread 06-09-2004, 10:26 PM
Results Finally Help

Hi everyone! I had my surgery on March 26 and just now got my third diagnosis. This one I believe I can trust because my slides went to a sarcoma Pathologist. One very well known in sarcomas. I have a rare cancer called PE coma. It's treated as a sarcoma . They don't know if I will have a reacurrance are not. There are only 13 cases documented. I am number 14. What a roller coaster ride this has been. Now I just do Ct scans every three months and pray it doesn't come back. I've done a search to see if anyone has had this and came up with no one. Doesn't surprise me though being so rare. I was wondering if anyone has heard of this are knows someone who has it? Thanks and Take Care everyone.
Hugs,
Nanette
TVH on Mar.26 due to a that was later diagnoised as PECOMA .A rare cancer
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  #2  
Unread 06-09-2004, 10:30 PM
Results Finally Help

Hi there,
Glad to hear that they finally know what you have. And you don't need chemo or radiation! Excellent. We'll pray this is the end of it for you.
Janie
  #3  
Unread 06-09-2004, 10:41 PM
Results Finally Help

NannetteMarie,
I don't know if this will help but I found on the web PEC is: "perivascular epithelioid cell differentiation (PEComa)" . If you do a google search you can find some information about that kind of cancer although I don't know how helpful it will be to your particular case.

Hugs and comfort,
Janie
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  #4  
Unread 06-09-2004, 10:57 PM
Results Finally Help

Thanks Janie. I have been on the computer non stop since the doctor called. Not much out there. What it says it could spread . They just don't know. First they thought it was Leiomyosarcoma. Then they thought it was endometrial stromal tumor . My doctor didn't like that they weren't for sure . He then sent my slides to Emory . I do know that it was low grade. Meaning the mitotic count was 1 are 2. That is good. Wasn't aggressive. Really doesn't mean much though because they don't know how it is going to act. LMS travels throught the blood stream. Ess does also. If they treat this like a sarcoma only because they don't know then I guess it would also travel through the blood stream. So now I deal with the what ifs. I keep telling myself one day at a time. I go into the doctor on August 4 . I will ask many questions then.
s
  #5  
Unread 06-10-2004, 01:57 AM
Results Finally Help

NanetteMarie
I will pray to God with St.Judes help for you . This has to be hard and I applaud you for saying you will take it one day at a time..you are a couragous woman.
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