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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.
REPLY
2 replies
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)
@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

Thank you! Prayers for you as well.

REPLY
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)
@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.

Jump to this post

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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randallshields56 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)
@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.

REPLY
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