Diagnosed with sarcoma? Let's share

He is being treated by doctors at UC Health Anshutz in Aurora, CO. I read that they shouldn’t use radiation on his type of cancer, but they did radiation on his initial tumor in his back. I don’t know if an ablation would help either. We will see if the chemo has done anything in a couple weeks.

Hi, I was diagnosed with synovial sarcoma in the soft tissue of my left knee 33 years ago. It was treated at Mayo Clinic in Rochester. I am a survivor.

Hi All. I was diagnosed with GIST in November 2026, had tumor removed right away and am on Imatinib for life. Glad groups like this exist to support each other.

I was diagnosed with Dediferentiated liposarcoma in July after 4 months of tests and scans. Then a 1 month wait to see an oncologist. Between the surgical oncologist and the radiation oncologist they have decided that radiation before surgery is my best option. I start 25 radiation treatments on mon. 24 of August. I am a 67 year old male in generally good health.my tumor is rapidly growing in the uper right quadrant of my groin just below belt line.

My son has Malignant Triton Tumor, which is like a combination of rhabdomyosarcoma and peripheral nerve sheath tumor. It’s super rare and super aggressive. He was diagnosed 6 months ago, and he has had surgery and AIM for 6 cycles. Now he’s leaning towards radiation for the surgical bed (abdomen and pelvis) to prevent local recurrence. He has a couple of tiny nodules in his lungs that are new with his most recent CT. They’re diagnosed as bronchiolitis but being monitored at short interval.

@kathy1960, wow. 33 years ago. It is always helpful and hopeful to hear from long-term survivors. May I ask how old you were when you were diagnosed? What treatment(s) did you have?

@lmcjax, welcome. I invite you to take part in the GIST-related discussions, like this one:
- Anyone have experience with gastrointestinal stromal tumor (GIST)?https://connect.mayoclinic.org/discussion/gist-cancer/

See all: https://connect.mayoclinic.org/group/sarcoma/

I bet you would have a lot to offer.

@lmcjax I was diagnosed with GIST in February 2026. Stage 4 - has a tumor by my pancreas and caused lesions on my liver. I'm on Imatinib too. Where was your tumor? How are you doing on Imatinib?

Hi pammyrose66 - my tumor was by my small intestine, removed with clean margins but high mitotic rate. I’ve been on imatinib since Jan 2026, and I’m still adjusting. Constant fatigue, nausea (controlled with zofran), brain fog, foot cramps and substantial hair thinning/loss are my side effects. My days don’t look anything like those pre-Imatinib, but I get by. How are you doing?

@fluttergord
Hello, sorry to hear about your diagnosis. I too am 67 and was recently diagnosed with epitheiold sarcoma (they think) and similar to your timetable you mentioned. Mine started with an aggressive growing tumor in my upper thigh that metastasized to lymph nodes, and lung.
I did 10 rounds of radiation that did wonders on the tumor in my upper thigh, now I am starting another 10 rounds focused my my pelvic area. There is a major lymph node called the lilac in the groin area they are focusing on to reduce the swelling in my leg.
Also, just completed 6 rounds of chemo, gemcitabine & docetaxel, only to find out the cancer actually grew during this period. If they recommend these 2 chemo, just beware that the efficacy on sarcoma is less than 30%. Hoping my experience is of value. Wishing you the best. Joe