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Diagnosed with sarcoma? Let's share
Sarcoma | Last Active: 2 days ago | Replies (808)Comment receiving replies
Hello, I have been diagnosed with Solitary Fibrous Tumor. I had a painless “bump” near the center of my back which was believed to be a cyst. Upon removal, the bump was sent to pathology for analysis. It was still a bit unclear, so the tumor was then sent for NGS TESTING. I was then given this diagnosis. There is very little information on this condition as it’s fairly rare. Does anyone have a similar story? If so, how are you doing now?
Replies to "Hello, I have been diagnosed with Solitary Fibrous Tumor. I had a painless “bump” near the..."
I too had a solitary fibrous tumor of the central nervous system.
Craniotomy on Feb 28,
Removed tumor from brain, pathology determined it was malignant, 6 weeks of daily radiation.
PET scan - no metastasize.
MRI - shows small aneurysm-to be watched.
Feeling good now, daily 2-3 mile walk, yoga, and eating healthy.
Fingers crossed, PET and MRI every 3 months.
The 3 F’s get me thru this now- FAITH, FAMILY, FRIENDS.
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@carol4623. I'm sure you've already seen this information about solitary fibrous tumors from Mayo Clinic, but just in case:
- Solitary fibrous tumor https://www.mayoclinic.org/diseases-conditions/solitary-fibrous-tumors/cdc-20395823
You may also wish to connect with @suemarie3 here:
- Solitary fibrous brain tumor WHO Grade 3. https://connect.mayoclinic.org/discussion/solitary-fibrous-brain-tumor-who-grade-3/
Most solitary fibrous tumors are not cancerous. Has it been determined if your tumor is malignent or benign? What are the next steps?