Connect
← Return to Endometrial stromal sarcoma (ESS): What treatment did you get?
Discussion
Endometrial stromal sarcoma (ESS): What treatment did you get?
Gynecologic Cancers | Last Active: Sep 10 9:55pm | Replies (68)Comment receiving replies
Hi All,
I have just been diagnosed with a high grade of ESS. I had a hysterectomy (not at Mayo). The pathology report took 4+ weeks to get back. I still haven't seen the pathology report but my doctor (not from Mayo) told me that this is the diagnosis. The doctor didn't know how to treat it. He was going to meet with a group of doctors to discuss a treatment plan which is why I decided to go to Mayo. They will do their own pathology report. Anyway, it's a scary diagnosis. I just joined this board to see what everyone's experience has been with this disease that is so very rare. I am encouraged after reading some of these comments that Mayo is the right place to be for treatment.
Replies to "Hi All, I have just been diagnosed with a high grade of ESS. I had a..."
Hello..what were your symptoms before hysterectomy?
Connect
@swagner2024 — my heart goes out to you. I am acutely aware of the feelings of fear and overwhelm as I also have high grade ESS, diagnosed late last fall. Though we knew after my hysterectomy that the tumor was sarcoma, the final pathology report took 4+ weeks for me also. What a long time to wait! In my case (Stage 1b) the protocol is no chemo or radiation and I am now in surveillance with a CT scan every three months.
I am glad to hear you are going to the Mayo. One of the best things I did after my diagnosis was have a consult with a gynecological oncologist familiar with uterine sarcomas. This person answered many questions and filled in gaps in my knowledge. It’s so hard to find good information with such a rare cancer!
My thoughts are with you. Please update us when you know more if you feel comfortable doing so.