Anyone diagnosed with Hemangiopericytoma (solid fibrous tumor)?

@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?

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

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

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.

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?

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.

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.

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?

@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

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.