Solitary Fibrous Tumor: Anyone have experience with this?

I was diagnosed with hemangiopericytoma grade 3 (now called solitary fibrous tumor) in 2018. I was pregnant and was told the baby was on my sciatica. 4 weeks after my csection I had surgery/fusion for my lumbar spine, the tumor eroded half my vertebrae and nerve roots. My neuro surgeon did an amazing job and despite the vascularity and complications he was able to remove it all. I did radiation to the area for 6 weeks. I had the tumor genetic profiling done to try and find a chemo match. There were none.
My oncologist I was assigned to through the ER wrote down 3 chemos and told me to pick one. I passed on that! (He was let go shortly after)
I've been getting MRIs every 3 months lumbar, then brain and full spine on rotation. CTs of chest, ab, pelvis annually. I was told my best course of action is catch it early, surgery, then radiation. So frequent scans, and also consistent so they can track rates of growth. Long term follow up.
A sarcoma center is key- not just for the drs being knowledgeable, but the radiologist are also trained to find sarcomas on imaging.

Colleen: Thank you for your reply. My surgery was in Feb 2023, fifteen months ago. Actually I've been told this is not abnormal and can last a lifetime. My last hospitalization for partial blockage was just last month. It's called PRD, or Pelvic Radiation Disease.

@debgayle1, what a remarkable story! I can only imagine the roller coaster of emotions you've been riding for the past 2 years. It sounds like no one was expecting surgery to be a possibility.

In terms of dealing with bowels issues, four months since surgery is not that long (even though I'm sure it seems like it). Have you been told that things will get better with time?

I was diagnosed in June 2022 with large stage 3 sarcoma tumor in sacrum. Was originally turned down for surgery because of location and size. Oncologist recommended immediate radiation treatment for palliative care. Went through 28 radiation treatments initially, then went to Northwestern Med for 15 addl. Proton radiation treatments. Finished up in Dec. CT and MRI test results were reconsidered due to amazing destruction of the tumor, and I underwent surgery in Feb 2023 for removal. Successful results with clean margins. CT scan showed 2 nodules in left lung which have not changed any as of Feb 2024. Get CT and MRI every 6 mo. The worse problem I've encountered with the experience is debilitating damage to my gut. Scar tissue and inflammation causes narrowing in my intestines and I've been hospitalized with blockages. I've had diarrhea or constipation ever since the surgery and I guess it'a a small price to pay for survival. I can't travel due to these unpredictable issues and I have to follow a strict diet to avoid other problems. I do miss having a normal life that doesn't tie me to the bathroom.

Of course! How does that work?

Thank you for sharing. Would you mind if I messaged you directly?

That’s how I found it (emergency surgery in 2015). The ones in 2023 they weren’t concerned it would rupture again. Even though the one near my spleen was the biggest (a bit bigger than a softball). I ended up having surgery two months after finding them.
I am doing a form of Avastin (zirabev). Typically it works together with chemo but I am just doing the zirabev. I am 3 treatments in. Every 3 weeks for 12-18 months.

I’m sorry you’ve been through such an extensive surgery. I didn’t realize that an SFT could rupture. My husband had dirty margins so I imagine he also has cancer cells left in his body. Would you mind sharing more about your immunotherapy?

So unfortunately cells were left in my body and 6 months ago I had surgery to remove them (15+) all. Plus they removed my spleen and had a total hysterectomy since there were a lot there. I just started on immunotherapy to slow the growth of future ones down since the drs have been reading on some reports that chemo and radiation don’t seem to work. So he’s lucky it didn’t rupture. I live in California and was going to go to MD Anderson but feel very confident in my team of drs.

Hello! I’m sorry to hear that. May I ask how you’re doing? Do you have any advice for somebody who is new to this? My husband had a thoracotomy in February and they are recommending 6 weeks of radiation as he is high risk. He’s being treated at Levine Cancer Institute in Charlotte but we’re going to MD Anderson for a second opinion. Thank you!