Anyone diagnosed with Hemangiopericytoma (solid fibrous tumor)?

@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?

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.

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.

@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

Colleen - Thank you so much. I will forward this information to her.

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.

Hello, I was diagnosed in 2007 with a tumor in the left occipital side of my brain. I had it removed and had 33 radiation treatments. I had MRIs for 7 years and the stopped. In 2020 it came back in the top lobe of my liver. I had it removed and no treatment was deemed necessary. My doctor also saw a small lesion on my brain adjacent to the old location. They were not sure if it's scar tissue or recurrence. They decided instead of goi g in to find out they would do the gamma knife radiation. I am followed up now every six months and it appears that whatever it is it has had some shrinkage. I live with fear and anxiety a lot of days and because I work and carry in my life people don't really know how lucky and blessed that I am to even still be her.

@difabio3 , @colleenyoung , @justk, @mollyelisa ,@tirpaka , @jestherdh
Hi everyone,

I recently came across this group and I just wanted to start by sending warm wishes and well-being to everyone in this group.
In 2020, my wife was diagnosed with Anaplastic Hemangiopericytoma Grade 3 (WHO classification). She underwent surgery in June of that year, a right temporal craniotomy, to remove the hemangiopericytoma of the meninges. This was followed by 30 sessions of radiation therapy. Initially, the treatment seemed successful, with regular MRIs every six months showing no signs of recurrence. However, in January 2022, the cancer returned, this time in the spine. She underwent a C7 corpectomy with cage placement in April 2022, followed by 27 sessions of radiation therapy. Since then, she has been monitored with alternating MRI and PET scans every three months.
Unfortunately, in September 2023, a new suspicious lesion at the right occipital extra-axial dural-based region was detected, along with complications from radiation necrosis. This has led to her experiencing weakness on her left side, particularly in her foot and leg, causing difficulty walking and maintaining balance. Additionally, she has been experiencing vision problems in her left eye. As a result, she recently began a new treatment plan, receiving Avastin (bevacizumab) therapy every two weeks to address the radiation necrosis.
I'm here to learn from your experiences and insights on how best to support her through this journey

Welcome, @mohamedah. I'm sorry that your wife (and you) are experiencing a second recurrence. It sounds like she has a good health care team. She certainly has a caring partner in you. It must be hard to see her suffer. I hope she does not have pain along with the other symptoms you mentioned.

Is she using mobility aid, like a walker or wheelchair? Does physical therapy help? How is she doing on bevacizumab?

And, how are you doing?

Thank you, @colleenyoung , for your kind words and support, it means a lot during this difficult time.

While she hasn't experienced much pain alongside the other symptoms, Maha recently encountered some side effects from the Bevacizumab treatment.
She currently uses a cane as needed for assistance and has been attending physical therapy to improve her strength and coordination. It's a slow process, but we're full of hope that it will show positive results in terms of her mobility and balance.
As for the Bevacizumab treatment, it's still early to determine its long-term effectiveness, but so far it seems to be helping to control the growth of the radiation necrosis and the tumor. We're hopeful for continued positive results even with the side effects associated with Bevacizumab. We are working closely with the medical team to manage them.
Honestly, it's been very difficult watching her go through this. I try my best to be strong and supportive, but there are definitely times when it takes a toll, especially when there are young children involved. I will always remain focused on helping her in any way I can throughout this journey.

I would be grateful for any additional details you could share about radio necrosis to help me and others understand the condition and its potential long-term effects.
Thank you again for your kind words and follow-up. Your support truly means a lot to us during this challenging time.