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Endometrial stromal sarcoma (ESS): What treatment did you get?

Gynecologic Cancers | Last Active: Sep 10 9:55pm | Replies (68)
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@jspr422

Hello @nzq21p —

You are asking some great questions. It is always good to be informed so you can advocate for yourself.

A chest/abdomen/pelvis CT scan was done a few days before my surgery to look for spread (none seen). I had a robotic-assisted (DaVinci) hysterectomy, with all the incisions made in my abdomen.

The clinic I go to is not an official sarcoma center (as defined by the Sarcoma Alliance), but my gyn oncologist is knowledgeable about sarcoma. Everything happened so quickly for me that I didn’t even know to ask the question of her before my surgery. However, I had a lot of trust in the referral my regular gyn made for me to this surgeon.

That said, after my surgery I did informational consultations at two sarcoma centers (one was the Mayo) to learn more about sarcoma and specifically ESS HG. It was helpful, I’m glad I did it.

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Replies to "Hello @nzq21p — You are asking some great questions. It is always good to be informed..."
nzq21p | @nzq21p | Aug 4 5:54pm

Thank you..I just joined ESS facebook.. testimonials over there for HGESS were horrible, I couldn't take it..
Did you ever have any genetic testing done to find any root cause?
Did you have any pain before you were diagnosed ? Is the diagnosis from the biopsy or after hysterectomy?
Until the diagnosis, I didn't have any pains and walking 10-12k steps every day even on the day I had d&c.. but since the diagnosis every body part seems to be painful and couldn't sleep at all.
Apologies for asking too many questions, I am so terrified about prognosis

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