Anyone diagnosed with Hemangiopericytoma (solid fibrous tumor)?

@mollyelisa, I'm sorry to hear that your niece is having challenges getting into MD Anderson. Might she consider Mayo Clinic?

Mayo Clinic has a special 48-hour access program for brain tumors. Experts at the Mayo Clinic can help navigate the healthcare journey, answer questions and guide her through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours. Be sure to mention the Brain Tumor 48-hour Access program.

Here are the numbers for all 3 Mayo Clinic locations: http://mayocl.in/1mtmR63

How can you find a doctor that has experience treating this condition? My 31 year old niece has been diagnosed with an SFT near her spine but there seem to be few answers & we are having difficulty getting into M.D. Anderson where she was referred.

I was diagnosed with a HPC in my occipital lobe five years ago. I had surgery to remove as much of the tumor as possible and 30 proton beam radiation treatments followed after. I have follow up appointments every 6 months and at times it was only 3 months. I am sorry to hear your HPC has reoccurred. I live with that fear as I was warned it is always a possibility.

@difabio3, welcome. By having started this discussion dedicated to hemangiopericytoma, I'm hoping others will join in, like @justk.

Fabio, can you share a bit more about you? What type of radiation did you get? While it was effective, why can you no longer get radiation treatment? Did you have surgery or radiosurgery?