Diagnosed with sarcoma? Let's share

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.

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!

I had a 6 cm Myxosarcoma removed from my right thigh two weeks ago. I had 5 weeks of radiation prior to the surgery and my tumor did not shrink, either. I just made appointments for the first follow up CT and MRI in June. I wish you all the best!

Hello - I am 60 yr old and was diagnosed with Undifferentiated Pleomorphic Sarcoma of my right posterior thigh. I was stage 3 at the time of discovery and my tumor was large >10cm. I underwent 5 weeks of radiation in hopes of shrinking my tumor before surgery however it did not shrink at all. I underwent surgery in April 2023 and have scans every 90 days. I recently had an MRI last week that shows red bone marrow conversion/reconversion and being I'm a non-smoker and recent bone pain, I have a PET scan scheduled this Wed. I stay positive and grateful every day and stay in faith. I send prayers and well wishes to all sarcoma survivors to. date. God bless - Donna

Hello,
I was diagnosed with endometrial carcinosarcoma with metastases to the cervix on May 17th. I had a complete hysterectomy with removal of the omentum and 2 pelvic lymph nodes, one "looking suspicious", on June 2nd. Pathology came back negative on the nodes and omentum. Path also came back positive for cancer cells "floating" in the abdomen. I am scheduled to begin a 6 cycle course of ifosfamide/taxol chemotherapy on June 10th, not at Mayo, but in Madison, WI. My laparoscopic/vaginal hysterectomy was done by a UW Carbone Cancer Center surgeon/oncologist. Surgery went as well as could be expected, and in some respects better, as the original plan was to remove all lymph nodes in the pelvic region, which turned out to be unnecessary. Uterine tumor was very large [7cm. x 3cm. x 2cm.]. Apologies for my text being a bit out of order. Feeling anxious about upcoming chemotherapy, but I guess that's in the realm of our new normal now. We're obviously in the early stages of trying to navigate through this "Brave New World", and trying to figure out where/how to find women with my type of cancer.