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Can anyone relate? Can anyone relate?

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  #1  
Unread 08-09-2004, 09:38 PM
Can anyone relate?

Hi there!
I have the type of cancer that children and teenagers get, however, it's in my uterus so I'm getting a hysterectomy. According to my doctor, I have something similar to Ewing's sarcoma, or PNET and there's only been 14 cases in the U.S. that has had it and I'm hoping to find someone in here that is one of the 14. I'm freaking out because it spread outside my uterus and it's hit my lymph nodes. If anyone has heard of it, let me know! Thanks!
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  #2  
Unread 08-09-2004, 09:46 PM
Can anyone relate?

Although I know nothing of the type of cancer you have, I'm sure someone on here does. Have you tried doing a search for it? It's really easy to do and is just at the top of each page. I've done lots of searches and it's helped me to answer lots of questions.

I'll keep you in my thoughts and ers that you will find more information and also for a full recovery.

Please keep us informed. And God Bless!

Mia
  #3  
Unread 08-10-2004, 12:05 AM
Can anyone relate?

There have been other sarcoma ladies around here; I did a search, and found these threads: sarcoma search There is a group (maybe on Yahoo?) that some ladies have referred to.

You're right, to have PNET as an adult is rare. But it can occur in any smooth muscle -- and the uterus counts .

What I've seen on the sarcoma threads before is an urging to have your slides evaluated by a sarcoma specialist (I think I've seen M.D. Anderson Hospital in Texas listed, but I'm not sure). Many ladies have also emphasized that your GYN-oncologist should be in touch with sarcoma specialists -- if one isn't available to you locally. I hope your surgery is being done by a GYN-oncologist? That is VERY important, particularly in a case such as yours. It can change the outcomes.

You'll see that you do have some company; even if the other sarcomas listed aren't PNET, they're all fairly similar in the way they are treated. Take care, and you'll be in my thoughts and ers.



Audrey
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