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endometrial stromal sarcoma

jax568
Posts: 58
Joined: Aug 2011

I had a 2cm endometrial stromal sarcoma. Almost 4 years ago after years of chronic pelvic pain due to all types of issues. Finally found a doctor who agreed to remove my uterus. Well its a good thing I found him. Pathology then found the cancer. One month later had my right ovary removed. Had my left out many moons ago. No chemo was recommended.
I see my oncologist every 6 months.

I am wondering if any one has had a this type of cancer.

Thank you for reading
Jackie

linda888
Posts: 1
Joined: Nov 2011

Hi Jackie,
I have also been diagnosed with endometrial stromal sarcoma. I had a total abdominal hysterectomy three weeks ago and soon with begin taking an aromatase inhibitor. I understand that this diagnosis is rare. There is little information about treatment. What information I have read is very conflicting regarding treatment and survival rate.
I wish you all the best and will share any information that I know.
linda888

julia12756
Posts: 22
Joined: Jan 2012

Hi Jackie and Linda:

I too was diagnosed with ESS and had been searching for information about our disease. This message board is wonderful for support but I wanted to suggest another site to join that may give you some other information you are seeking. It's a yahoo group that is dedicated to ESS. There are about 70 members and many are active. Here is the info:

http://health.groups.yahoo.com/group/Endometrialstromalsarcoma/

Good healing to you!

Julia

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