Diagnosed with sarcoma? Let's share

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!

I had an aggressive lemon-sized (neuro?) fibrosarcoma of the abdomen in 1990, Stage IV, with very poor prognosis (nil). I was 33y with a toddler, living in upstate NY. The first surgery was not completed due to heavy blood loss. We moved in with my folks in CA, for childcare & proximity to treatment. I had 3 (7-8 day) courses of ifosfamide w/ mesna, then 5wks of radiation, followed by a successful (14 hr) surgery at UCLA. The tumor was a dead husk, and they were able to save all major organs. The sarcoma has not returned.
Best wishes for your chemo. Everyone’s reaction is different, some get the munchies, some can’t hold water down. Stick with the chemo, I think that’s what made the difference in surviving a ‘terminal’ diagnosis.
As for abdominal surgery recovery, it was about 2 yrs before I felt comfortable wearing pants with a waistband that zipped. Vitamin E cream and gentle scar massage has kept the scars smooth.

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!

Rhabdomyosarcoma I am 64 and in treatment for past year. Removed from arm and had 30 radiation treatments on arm and 25 on right armpit lymph node. Keytruda every 6 weeks and scan every 3 months. So far so good. Seem to be holding my own.

I have been diagnosed with fibromyxoidsarcoma - a mass which appeared on my forearm and looks like it has metastasized to the lungs. Anyone else out there with this or a similar diagnosis?

Welcome @helenjr, members @alias47 @eokwuns have experience with fibromyxoid sarcoma.

Helen, this must've come as a blow to find out not only that you had sarcoma but that it had metastasized. Will you have or have you had surgery? What treatment is suggested for the metastasis?