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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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jp1976 | @jp1976 | 23 hours ago
In reply to @mollyelisa "How can you find a doctor that has experience treating this condition? My 31 year old..." + (show)
@mollyelisa

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.

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I was recently told I have something very similar to this in my left paraspinal muscle. Doctors cannot agree on what it is and it’s super vascular so no one wants to biopsy it. How is your niece doing and was she ever seen by MD Anderson? I’m from Texas and it’s proving to be very difficult to see the doctor I was told would be the one that would be able to help.

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jp1976 | @jp1976 | 23 hours ago
In reply to @colleenyoung "@mollyelisa, I'm sorry to hear that your niece is having challenges getting into MD Anderson. Might..." + (show)
@colleenyoung

@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

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I just found this thread after trying to get into MD Anderson myself. I have a highly vascularized tumor (found by a neurosurgeon after CT scans, MRI then finally an angiogram. He is 100% certain it’s not an AVM or vascular malformation. It’s in my left paraspinal muscle but since it’s so vascular no one wants do biopsy it. Can you lead me in some direction?

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mollyelisa | @mollyelisa | 11 hours ago

I am so sorry to hear about your diagnosis. It is just devastating to get a diagnosis and then not be able to get the care you need. My niece ended up at Sloan Kettering in NYC. They operated & removed the tumor & she did radiation. It's been a little over a year & she had the cancer show back up in the same area. She has opted to work with a Functional Medicine doctor & is doing alternative treatments.

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