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Anyone have a neuroendocrine tumor (NET) in the spine?
Neuroendocrine Tumors (NETs) | Last Active: Oct 23, 2023 | Replies (56)Comment receiving replies
@gsm13161,
Hope the cyberknife operation has kept your condition stable. With mets to spine, were you able to have any surgery?
My son has pNets which mets to nearby lymph nodes. He is undergoing PRRT and hope for shrinkage of the pNETs so that surgery can be done. Blood work shows activities shown in his spine lesion area. Wonder if mets to spine will make it irresectable.
Replies to "@gsm13161, Hope the cyberknife operation has kept your condition stable. With mets to spine, were you..."
I had surgery in 2018 for t-10 lesion but since have had cyberknife on additional spine Mets. MRI’s show relatively stable disease. Also had robotic surgery on the liver in 2019 and 2023. Still not on chemo. The oncologist is staying with Sandosatin injection as the cancer is over all stable per recent pet imaging.
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I had surgery in 2018 for spine nets at T-10. Since then I have numerous spine Mets in C spine, T spine, and L spine. Cyberknife has kept everything relatively stable. Lucky metastatic Paraganglioma is slow progressing. Also get exgeva injection every 12 weeks for other bone Mets. Good luck with the prrt therapy. My dr. has mentioned I am a candidate for prrt but the disease hasn’t progressed to where they want to use it.
Best wishes