Anyone diagnosed with Hemangiopericytoma (solid fibrous tumor)?

Posted by difabio3 @difabio3, Sep 21, 2022

Looking for people that are living with and have successfully treated HPC tumors. My tumor is in my mid brain and have reoccurred once. Can no longer receive radiation which was effective in killing the tumor. I am looking for what is next.

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mollyelisa | @mollyelisa | Dec 1, 2022

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.

justk | @justk | Sep 21, 2022

In reply to @colleenyoung "@difabio3, welcome. By having started this discussion dedicated to hemangiopericytoma, I'm hoping others will join in,..." + (show)

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.

Colleen Young, Connect Director | @colleenyoung | Sep 21, 2022

@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?