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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

Bee Positive
Posts: 1
Joined: May 2016

Hi Linda, Jackie - I recently received this diagnose a few weeks ago after having a hysterectomy.  Was radiation therapy ever mentioned to you as a treatment before horomone therapy?  

Linda - My Doctors have also mentioned hormone therapy.  One mentioned Aromatase Inhibitor.   How are you doing on taking an aromtase Inhibitor?  My doctor didn't want to suggest Progesterone since you gain weight with that.  I was hoping that you could share any information from your treatment.

Bee Positive

 

EZLiving66's picture
EZLiving66
Posts: 789
Joined: Oct 2015

Welcome to the board, Bee!!  The posts above yours are pretty old - and I don't think either of those ladies have posted for four or five years.  Start your own thread and I'm sure somebody here can help you.

Love,

Eldri

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