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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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@nzq21p

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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Replies to "Thank you..I just joined ESS facebook.. testimonials over there for HGESS were horrible, I couldn't take..."
jspr422 | @jspr422 | Aug 5 9:38pm

Hello @nzq21p —

Never feel you need to apologize for asking questions. This is a rare cancer and it can be hard to find information. I have asked a lot of questions myself.

I did not have genetic testing. Samples from my biopsy and the hysterectomy did have testing to determine the exact gene mutation which led to the final diagnosis. My understanding is there are a few ideas about what might predispose someone to have ESS HG yet is it is very difficult to determine the root cause.

No pain prior to the diagnosis. Like you, I felt terrible after being diagnosed. I’m sure it was all the stress and anxiety. A cancer diagnosis is a very traumatic event!

You are not alone in feeling terrified, especially right after getting a diagnosis. There are so many uncertainties and everything feels overwhelming. Keep asking questions and look to your support network as you move forward. Be kind to yourself. Prayers and positive thoughts headed your way.

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