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Replies to "Did your endoscopy include a a biopsy that confirmed your NETs diagnosis? Somatuline Depot (Lanreotide) can..."
Neuroendocrine Tumors (NETs) | Last Active: Feb 6 11:47am | Replies (9)
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Did your endoscopy include a a biopsy that confirmed your NETs diagnosis? Somatuline Depot (Lanreotide) can certainly be helpful as you have seen. Its curious that your PET came back negative but that might be related to lack of large tumor growth? I'm sure there is a minimum size that PET can detect/show in results. In my experience the Lanreotide reduced my GI symptoms before I had a small bowel resection. I continue to get Lanreotide once a month as I still have and always will have Neuroendocrine cancer.
I would suspect that a permanent Lanreotide routine would be of a real benefit to you going forward.
Replies to "Did your endoscopy include a a biopsy that confirmed your NETs diagnosis? Somatuline Depot (Lanreotide) can..."
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@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.