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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.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

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jp1976 | @jp1976 | Apr 29, 2025
In reply to @mollyelisa "How can you find a doctor that has experience treating this condition? My 31 year old..." + (show)
Profile picture for mollyelisa @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 | Apr 29, 2025
In reply to @colleenyoung "@mollyelisa, I'm sorry to hear that your niece is having challenges getting into MD Anderson. Might..." + (show)
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@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 | Apr 30, 2025

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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Colleen Young, Connect Director | @colleenyoung | May 12, 2025
In reply to @jp1976 "I just found this thread after trying to get into MD Anderson myself. I have a..." + (show)
Profile picture for jp1976 @jp1976

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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@jp1976, if you would like to request a second opinion with Mayo Clinic experts, you can start here: http://mayocl.in/1mtmR63

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manip | @manip | Nov 3, 2025
In reply to @tirpaka "Hi, my husband has a hemangiopericytoma, he had surgery in 2003. The tumor came back 10..." + (show)
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Hi, my husband has a hemangiopericytoma, he had surgery in 2003. The tumor came back 10 years later and spread and then he had 6 tumors in his brain. He went to MD Anderson in 2013 and had surgery AGAIN and then radiation. 2 tumors they could not take out because close to brain stem. 1 Year after radiation one of the tumors started to grow in 2014 and he had SRS in 2014. He had been cancer free and had serial MRI's to date. The reason I am responding to you is in December 2022 he had shortness of breath. I took him to the ER and they did a CT and other work ups and it came back with tumors in his lungs and Plueral. His radiation oncologist told him it could not be the same thing that was in his brain. Well he had a biopsy and guess what it hemangiopericytomas. We have been through so much the last 6 months. Also he just had an mri in May 2023 and still NO reoccurrence in the brain. I do have some good news though he went to NIH/NCI and Duke University and all said he should be on Sunitinib its oral medicine. He started the Sunitinib in March 2023 and he is still on it. He had a scan in May 2023 and the tumors are shrinking. I highly recommend you get a PET scan and get checked all over, this cancer like to travel and likes to do it years later, in his case 10 years later. He is now diagnosed with Metastatic Hemangiopericytoma of the Meninges. I agree this is rare and we can't find anyone with this as well. You should call NCI/NIH they were the most helpful for us.

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@tirpaka Hi after this surgery in 2003 the original surgery did they do radiation ? Did they tell you what grade it was ?

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Justina | @jbornn2 | 2 days ago
In reply to @tirpaka "Hi, my husband has a hemangiopericytoma, he had surgery in 2003. The tumor came back 10..." + (show)
Profile picture for tirpaka @tirpaka

Hi, my husband has a hemangiopericytoma, he had surgery in 2003. The tumor came back 10 years later and spread and then he had 6 tumors in his brain. He went to MD Anderson in 2013 and had surgery AGAIN and then radiation. 2 tumors they could not take out because close to brain stem. 1 Year after radiation one of the tumors started to grow in 2014 and he had SRS in 2014. He had been cancer free and had serial MRI's to date. The reason I am responding to you is in December 2022 he had shortness of breath. I took him to the ER and they did a CT and other work ups and it came back with tumors in his lungs and Plueral. His radiation oncologist told him it could not be the same thing that was in his brain. Well he had a biopsy and guess what it hemangiopericytomas. We have been through so much the last 6 months. Also he just had an mri in May 2023 and still NO reoccurrence in the brain. I do have some good news though he went to NIH/NCI and Duke University and all said he should be on Sunitinib its oral medicine. He started the Sunitinib in March 2023 and he is still on it. He had a scan in May 2023 and the tumors are shrinking. I highly recommend you get a PET scan and get checked all over, this cancer like to travel and likes to do it years later, in his case 10 years later. He is now diagnosed with Metastatic Hemangiopericytoma of the Meninges. I agree this is rare and we can't find anyone with this as well. You should call NCI/NIH they were the most helpful for us.

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@tirpaka
I have a hemangiopericytoma since 2011. Same as your husband. I had 3 craniotomy’s and the stereotactic radiation. It now spread to my lungs like him and the dr wants me to do chemo to shrink them. Im skeptical. I where does he go from his treatment? I go to stonybrook in NY but I feel like it’s time for a second opinion for treatment. Any thoughts?

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Justina | @jbornn2 | 5 hours ago

Hello. I have been searching for someone with a hemangiopersytoma brain tumor. I have had this since 2011. My brain tumor grew back within a year and a half. So I had surgery again to remove it following stereotactic radiation to last me five years. It helped but it came back in 2024 and I had my third craniotomy. Now 2026 my brain tumor spread to my lungs. I have been treated in stonybrook hospital NY. The doctors pushed me to their sarcoma scientist doctor. He said I have to do chemo in a few weeks to try and shrink the tumors in my lungs. It’s a pill and an IV chemo everyday for two weeks on and 2 weeks off. Im to do this for 6-8 rounds. He said nothing kills a hemangiopersytoma. I can only hope to shrink it.

I’ll do anything to try to live longer, Im just curious is anyone has had different kinds of treatments when it spread to your lungs….and did the treatment work? How long has anyone lived with a hemangiopersytoma? This is the first Im hearing that another person has it. It’s terrible to have and I don’t wish this on anyone but it is comforting that Im not alone.

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