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Diagnosed with sarcoma? Let's share

Sarcoma | Last Active: 6 days ago | Replies (840)

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@jspr422

Hello -- I was diagnosed with high-grade endometrial stromal sarcoma (stage 1B) in the fall of 2023. I had a total hysterectomy and no evidence of spread was found in the margins or abdomen. No chemo or radiation needed (for which I am very thankful). Yet because it is a highly recurrent cancer, I'm under surveillance with a CT scan every three months for the next two years, tapering off after that (which creates a huge amount of anxiety).

Question for the group -- for others in surveillance -- what advice have you been given about having surveillance at a high-volume sarcoma center such as the Mayo, MSK, MD Anderson, etc.? I've been told both "you absolutely must be at a sarcoma center" and "as long as the scans remain clear, you don't need to be at a sarcoma center." Curious about the experience of others.

Thank you for sharing!

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Replies to "Hello -- I was diagnosed with high-grade endometrial stromal sarcoma (stage 1B) in the fall of..."

I had a synovial sarcoma removed in 2019. No chemo, or radiation, stage one. For two years I went every three months for CT scan. Now I go every 6 months. So far so good. However,
because of the size of my sarcoma I was told that it may return. I go to Anderson-Cooper, I see my oncologist now every six months used to be every three months. I am due for an endoscopy in three weeks. That procedure is done yearly.

I had breast cancer, right breast, 2015, radiation for 6 weeks, 7 days a week.
2023 Colon cancer stage one. removed, no chemo, never any medication. Sound awful, but I feel good.

I wish you the best! Take care.

@jspr422, that is an excellent question regarding active surveillance of sarcoma. Would you mind starting a new discussion on the topic?

See how to start a new discussion here: https://connect.mayoclinic.org/help-center/