Solitary fibrous brain tumor WHO Grade 3.

I had a malignant solitary fibrous tumor of the CNS, Grade 4 . Craniotomy Feb 2023.
Followed by 6 weeks of daily radiation.
They had to leave a very small piece that was too close to a major vessel.
I get a PET scan and a MRI every 3-6 months.
I pray it doesn’t metastasize or grow back.
Prayers for your daughter.

Thank you! Prayers for you as well.

If you can, please let me know how they determine that changes are metastasis and not something new and benign. How are you doing now? Big hug from me. My prayers are with you.

Sending prayers to.

Hello also have SFT grade III total removal awaiting radiation. did your come back ?

@vgig how is she doing ?

@manip She is at home. Having a chemotherapy. Changes have been noticed in her spine, breast and liver. She is a fighter. Her 2 little boys lift her spirits every day. Very tired but on her feet with her boys.
I cannot understand that between USA (Jacksonville) and Canada they let her slip into a new cell growth just because Canadians did not think she needed MRI couple weeks after radiation in Jacksonville. She asked for it so many time because she felt that things are wrong but was told to wait, and waiting resulted in another surgery . Thanks for asking. I still cannot find a single update for malignant brain SFT on this site. I guess its because it is so rare.

@manip I just posted my response to you, it should be below or above this one. How are you doing?

@vgigic so she had a SFT grade 3 first in the brain and no where else to start?Did they do a full body scan to confirm that at that time of SFT brain discovery ? When did it have a chance to move around, during radiation ?

There is a large Solitary Fibrous Tumor group on Facebook. Lots of brain SFT there and good research. Type is Solitary Fibrous Tumor in Facebook groups