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Solitary fibrous brain tumor WHO Grade 3.

Posted by suemarie3 @suemarie3, Jun 18, 2023

Surgeon thought it was a benign meningioma, tumor removed Feb 28, pathology was malignant.
6 weeks of radiation for small section not removed.
MRI in 2 weeks to check tumor .
Has anyone had this type of rare tumor?
Any info?

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suemarie3 | @suemarie3 | May 26 7:55am

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.
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2 replies
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vgig | @vgig | May 26 11:50am
In reply to @suemarie3 "I had a malignant solitary fibrous tumor of the CNS, Grade 4 . Craniotomy Feb 2023...." + (show)
Profile picture for suemarie3 @suemarie3

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.

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Thank you! Prayers for you as well.

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vgig | @vgig | May 26 12:16pm
In reply to @shelruth "I also have a similar solitary fibrous tumor in my brain, which has metastasized to other..." + (show)
Profile picture for shelruth @shelruth

I also have a similar solitary fibrous tumor in my brain, which has metastasized to other areas. I would like to connect with you and others with similar concerns.

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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.

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Randy Shields | @randallshields56 | May 27 6:26pm
In reply to @suemarie3 "I had a malignant solitary fibrous tumor of the CNS, Grade 4 . Craniotomy Feb 2023...." + (show)
Profile picture for suemarie3 @suemarie3

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.

Jump to this post

Sending prayers to.

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manip | @manip | 12 hours ago

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

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manip | @manip | 12 hours ago
In reply to @vgig "My 32 year old had a large occipital brain tumor, malignant, inter-mediate grade. 95% of it..." + (show)
Profile picture for vgig @vgig

My 32 year old had a large occipital brain tumor, malignant, inter-mediate grade. 95% of it was removed but small part was adhered to the brain because of which she went through 6.5 weeks radiation therapy. (All this was happening in November of 2024 and Feb/March 2025).
A month and a half after radiation therapy, the tumor came back in a different spot of the brain, with 12 new cells in the brain and changes in her liver were noticed
Yesterday she had brain bleeding and urgent surgery......still in hospital
Anyone out there with the similar experience willing to share?
Thank you

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@vgig how is she doing ?

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