@jlsgt
Thank you for your thoughtful response, I really appreciate you sharing your experience.
I’ve had multiple upper endoscopies with extensive biopsies, but so far there has been no confirmed neuroendocrine tumor. The findings have shown neuroendocrine cell hyperplasia, increased proliferation, and dysplastic changes, without a clearly defined tumor lesion.
My chromogranin A has been persistently elevated, but all imaging studies, including PET/Gallium-68, have been negative.
Symptom-wise, I experience facial flushing, persistent itching, muscle fatigue, and chronic epigastric and abdominal pain, which did improve significantly when I was previously on Lanreotide.
Thank you again for your insight — it’s very helpful as I continue to work with my medical team to clarify the diagnosis and long-term management.