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Diagnosed with a rare trophoblastic tumor Diagnosed with a rare trophoblastic tumor

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  #1  
Unread 08-25-2005, 07:41 AM
Diagnosed with a rare trophoblastic tumor

I wondered if there is anyone else out there with this? I have an "epithelioid trophoblastic tumor" which is related to a placental site tumor.

Anyway, my doctors at first thought I had a tubal pregnancy. I got 3 shots of chemo before they changed their minds about that diagnosis, then I had a D&C to try to get rid of what was causing my hormone levels to be weird. Obviously it didn't work, went to an oncologist, had an MRI and minor surgery to remove the tumor they found in the MRI. Only a pathologist at John Hopkins was able to ID the thing. So now the tumor appears to have come back and I'm looking at hysterectomy. Just wondered if anyone else on this list had anything like this or could offer any support/advice.

Thanks!!

Amanda
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  #2  
Unread 08-25-2005, 07:54 AM
Diagnosed with a rare trophoblastic tumor

Hi Amanda:
I'm sorry about your situation, and I dont have any advice, I just noticed you were from Utah, and thought I would pop in and say hi, and offer you a huge hug!
snickers
  #3  
Unread 08-25-2005, 08:15 AM
Diagnosed with a rare trophoblastic tumor

no informaton here, just support! (((hugs))).
i had a hard-to find type of tumor; "borderline" that was also diagnosed only after surgery, in the path lab. i am hoping that your tumor being so hard to find is a sign that it was caught early- best wishes-
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  #4  
Unread 08-26-2005, 06:53 AM
Thank you!

Thanks for the support. I knew that it was a long shot. We saw the onc yesterday. He's going to get a 2nd opinion from someone at Duke, but it looks like I'm going to have a vaginal hysterectomy. just uterus, not ovarys.
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