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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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@debgayle1

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.

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Replies to "I was diagnosed in June 2022 with large stage 3 sarcoma tumor in sacrum. Was originally..."

@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?