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Solitary Fibrous Tumor: Anyone have experience with this?

Sarcoma | Last Active: Jun 18 4:26pm | Replies (14)

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@lazylynn24

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.

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Replies to "I was diagnosed with hemangiopericytoma grade 3 (now called solitary fibrous tumor) in 2018. I was..."

@lazylynn24, it is encouraging to hear your story. I can hardly imagine dealing with a cancer diagnosis and treatment with a newborn. Am I understanding correctly that since surgey and 6 weeks radiation in 2018, your treatment has been active surveillance with regular scans? How do you manage scanxiety?