@donbarks: I too have primary in small bowel (grade 1, stage4) with metastases in liver (no surgery), so I can relate to your situation.
I had 4sessions infusion Lutathera PRRT June-December 2024.
I had Lanreotide 28 day shots since diagnosis with my tumors very slow growth & mostly stable until they weren’t (3yrs). Surveillance MRI followed by Gallium-68 PET scan revealed 40% progression.
I consulted with City of Hope NET Oncologist and after much discussion chose their PRRT treatment. They are the best!
I had significant reduction in tumor size that has continued as of January 2026 MRI, and many of the small tumors were no longer visable. This is giving me more time and quality of life for now. Our NETs when metastasized, are microscopic and can appear anywhere and grow.
The research of Beta PRRT treatment mentions many health risk factors that you must consider carefully - the most critical in my view is risk of platelet changes leading to life-threatening leukemia. Our bodies react differently to radionuclides which accumulate to high levels.
So… if I were you I would treasure these days of NET tumor control, live a great life and stay vigilant with repeat scanning. If progression shows itself then look and discuss all of your options for treatment including PRRT. New treatments are on our horizon too! Stay informed.
Be happy. Be Healthy. 🙂