Someone can help?

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.

@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.

Sounds as if your medical team has caught this before it forms into the tumor and is doing preventive treatment with the Lanreotide and hopefully continued close monitoring. An AI response would read " Based on your description, these findings describe a pre-cancerous or pre-invasive condition where neuroendocrine cells (cells that release hormones in response to nervous system signals) are multiplying and showing abnormal changes, but have not yet formed a distinct, solid, or invasive tumor ".
I do not think the condition you describe is rare for the NET community but it is rare to catch it and treat it with Lanreotide before seeing a tumor on a scan. I am sorry you have the symptoms. They can be awful, but it is good to see that you have been believed with your symptoms and received the needed testing. Sounds as if you have done some strong self advocacy to achieve a diagnosis and will continue to do so.
Thank you for explaining your situation, for I have often thought that years before the NETs landed and formed into a tumor, I had the symptoms. Your example helped.

@anasashesh87 Hi and welcome to Mayo Connect. I have never heard of a preNET diagnosis like yours, so thank you for sharing. We can all learn from your experiences. Other than restarting Somatuline therapy, what next steps are you discussing with your medical team?

@maeve115
Thank you so much for your thoughtful and kind response, I really appreciate it.
May I ask — are you speaking from personal experience as a patient who went through a similar journey, or from a medical background? Either way, your insight is very valuable and reassuring. Thank you again.

@tomrennie
Thank you for the warm welcome, I appreciate it.
At this stage, the main plan discussed with my medical team is restarting Somatuline (Lanreotide), given my previous symptomatic and biochemical response. We are also planning close monitoring with repeat blood markers and follow-up endoscopy, and reassessing imaging as needed based on symptoms and lab trends.
I’m still in the process of clarifying the exact diagnosis — whether this represents advanced neuroendocrine cell hyperplasia versus an early or occult NET — and that’s something I hope to better define with specialist input.
Thank you again for your interest and support.

@anasashesh87
I am only speaking from personal experience. cancer. Long before anything turned up on scans, and with no other testing being done, I had symptoms as you described. I had two other types of primary cancer before. Both had taken me by surprise. The third time was different I did not know how to describe what I felt that some type of cancer was floating around in there it just had not landed yet.. Since that time, I have heard other NET patients sensing (from symptoms) when a recurrence is coming. Here are some AI mentioned resources which describe this phenomena:
"While most medical resources focus on tumors once they are visible, you can find patient-friendly information about "pre-tumor" states—medically known as hyperplasia or precursor lesions—through specialized advocacy and research organizations.
Resources for Understanding Pre-Tumor States
The "Midway" Growth Concept: The Carcinoid Cancer Foundation explains neuroendocrine growths as often being "midway" between benign and malignant, describing them as "cancers in slow motion" where cells grow abnormally for years before becoming dangerous.
Stomach & Lung Precursors: The Cancer Precursor Project provides a simplified summary of known precursor lesions, specifically discussing ECL cell hyperplasia in the stomach and DIPNECH in the lungs as states that exist before a formal tumor diagnosis.
The 0.5 mm Threshold: The College of American Pathologists defines the literal line between a "pre-tumor" and a "tumor": any abnormal cell cluster smaller than 0.5 mm is officially classified as a precursor (hyperplasia or dysplasia) rather than a neuroendocrine tumor.
Hereditary Patterns: For those with genetic risks, the UCSF Neuroendocrine Center discusses how certain inherited mutations cause a predictable sequence where cells change abnormally and multiply long before they form a detectable mass.
Key Patient Guides
For a comprehensive overview written for non-doctors, these organizations offer the best downloadable guides:
Neuroendocrine Tumor Research Foundation (NETRF): Offers a "Patient and Family Guide" that covers the biology of how these cells begin to grow.
NCCN Guidelines for Patients: Explains how neuroendocrine cells act as a "bridge" between systems and how they transition into tumors. "

@maeve115
Thank you so much for sharing your personal experience and for taking the time to explain this so clearly. Your perspective is very helpful and reassuring, and I truly appreciate your support.

Hello, good afternoon. I've read about your experience. I just wanted to clarify that medications for heartburn (proton pump inhibitors) can raise Chromogranin A levels. I'm not saying you should be complacent, but I wanted to make sure you're aware of this, especially if it hasn't been mentioned to you. Best of luck.