About Neuroendocrine Cancer

🦓 Why a Zebra?

In medical school, doctors are taught "when you hear hoofbeats, think horses, not zebras" — meaning common conditions are more likely than rare ones. But for neuroendocrine tumor patients, they are the zebra. NETs are rare, often misdiagnosed, and frequently overlooked. The zebra has become the symbol of the NET cancer community as a reminder that rare diseases deserve attention, research, and specialized care.

What Are Neuroendocrine Tumors?

Neuroendocrine tumors (NETs) are a diverse group of cancers that arise from neuroendocrine cells — specialized cells found throughout the body that produce hormones. Because these cells exist in many organs, NETs can develop almost anywhere including the pancreas, small intestine, lungs, stomach, liver, and more.

NETs are sometimes called carcinoid tumors, especially when found in the digestive system. They range from slow-growing tumors that may be present for years without symptoms, to aggressive cancers that spread quickly.

Common Symptoms

Symptoms vary widely depending on where the tumor is located and whether it produces hormones. This is one reason NETs are so often misdiagnosed — sometimes for years. Common symptoms include:

• Flushing of the face and neck
• Diarrhea and abdominal cramping
• Wheezing or shortness of breath
• Unexplained weight loss
• Fatigue and weakness
• Low blood sugar (in insulinoma)
• Stomach ulcers (in gastrinoma)
• High blood pressure (in pheochromocytoma)

Diagnosis

NETs are diagnosed through a combination of:

• Blood and urine tests for tumor markers (Chromogranin A, 5-HIAA, serotonin)
• Imaging scans — CT, MRI, PET scans
• Octreotide scan or Gallium-68 DOTATATE PET scan
• Biopsy and pathology to confirm diagnosis and grade
• Endoscopy for gastrointestinal NETs

The average time to diagnosis for NET patients is 5-7 years. Seeking care at a specialized NET center can make a significant difference.

Treatment Options

Treatment depends on the type, location, grade, and stage of the tumor. Options include:

• Surgery to remove the tumor
• Somatostatin analogs (Octreotide, Lanreotide) to control symptoms and slow growth
• Peptide Receptor Radionuclide Therapy (PRRT) — Lutathera
• Targeted therapy (Everolimus, Sunitinib)
• Chemotherapy for aggressive NETs
• Liver-directed therapies for liver metastases
• Clinical trials for new and emerging treatments

Key Organizations & Resources

• Neuroendocrine Tumor Research Foundation (NETRF)
• Carcinoid Cancer Foundation
• North American Neuroendocrine Tumor Society (NANETS)
• European Neuroendocrine Tumor Society (ENETS)
• Moffitt Cancer Center — NET Program