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Endometrial stromal sarcoma Endometrial stromal sarcoma

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Unread 07-18-2004, 05:18 PM
Endometrial stromal sarcoma

Okay try this and I hope it works .

http://[email protected]

If that doesn't work go to Yahoo and go to groups and type in endometrial stromal sarcoma and see what that does. I hope this helps! Let me know if it doesn't and I will see what else I can do.

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Unread 07-18-2004, 08:40 PM
Endometrial stromal sarcoma

Thank you for the info. This did bring me to the site. I am trying to become a member now as usual for me having trouble. Hopefully in the morning I will have more sense about me and can get it to work. I think it will be very interesting.

Thanks again
Unread 07-19-2004, 08:00 AM
Endometrial stromal sarcoma

Dear Gilsburg,

Hello. I have a rare varient of ESS. I am a member of the Yahoo group Nanette spoke of.


SusanL is the moderator. Tell her Lori sent you.
I was diagnosed 12/02. I remember the shock I felt having a rare Cancer with little info. I joined HysterSisters and this is a wonderful site. Through them I found the ESS site and it has been my lifeline. Imagine 127 women with your Cancer sharing information and support. A few of the ladies have High Grade, but most are ESS, low grade. We have a few Physicians who provide us informationas well.

Almost always ESS is diagnosed after a TAH. This is because it is a tumor in the connective (Stromal) tissue and "hides" inside the wall of the uterus. It's good they removed your ovaries because it is estrogen dependant. The Megace one of the ladies mentioned is Progesterone, which suppresses any further estrogen from feeding the tumor. Word is out on this, newer drugs with less side effects are now being used. I am on nothing. Should I get a recurrance, I would use it then. You will need 6 month gyn exams and at least a yearly CAT scan. Most likely recurrance occurs in the pelvis or vaginal vault.
As for your lymph nodes, you have over 120 of them! You could have a sampling done, but it is not an easy surgery.
The two most important things to know about your tumor are the size and the mitotic count. That will determine if you need a sampling.
One of my Dr.s wrote the text book on our type of Cancer. He provides info and answers questions on the ESS support group. He also allowed me to download the chapters in the textbook to that support group. When you join, you will have access to all that info.
If you need more info, or have questions, please feel free to E-mail me!
Hang in there, you will be fine.

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