What tests should I get after a Neuroendocrine Tumors diagnosis

Tests After a Neuroendocrine Tumor Diagnosis

After being diagnosed with a neuroendocrine tumor (NET), your care team will order several types of tests to understand your specific situation and guide treatment decisions. Here's what you should expect:

Blood and Urine Tests

According to the NCCN Guidelines for Patients: Neuroendocrine Tumors, these foundational tests are essential:

Comprehensive Metabolic Panel (CMP)

• Measures 14 different chemical substances in your blood
• Checks how well your kidneys and liver are working
• Identifies if chemical levels are too high or too low

Complete Blood Count (CBC)

• Measures red blood cells (which carry oxygen), white blood cells (which fight infection), and platelets (which control bleeding)
• Helps determine if you have enough of each type of cell

Biochemical Tests

• Look for hormones that your NET may be producing
• Different NETs produce different hormones, so these tests are tailored to your tumor type
• Help identify if you have hormone-related symptoms

Urine Tests

• Assess your general health and kidney function
• May include the 5-HIAA test (5-hydroxyindoleacetic acid), which detects excess serotonin hormone in a 24-hour urine sample
• This test is particularly important if you have a carcinoid tumor (a type of NET that secretes serotonin)

Imaging Studies

SSTR-PET Scans (Somatostatin Receptor PET)

• Uses special tracers like 68Ga-DOTATATE to identify NETs by finding somatostatin receptors on tumor cells
• Helps locate the primary tumor and any spread
• More sensitive than older imaging methods

FDG-PET Scans

• Uses a different tracer to determine if NETs are likely to be more aggressive
• Helps assess tumor behavior

CT or MRI Scans

• Provide detailed pictures of your abdomen, pelvis, and chest
• Help determine tumor size, location, and whether it has spread
• Usually done with contrast (special dye) to improve image quality

Tissue Testing (Biopsy)

A biopsy removes a small tissue sample for laboratory analysis. This is crucial because it determines:

• Tumor grade (how fast the cells are growing) - measured by Ki-67 index and mitotic count
• Differentiation (how much the tumor cells look like normal cells)
• Whether the tumor is well-differentiated (slower growing) or poorly differentiated (more aggressive)

Genetic Testing

According to NCCN Guidelines, genetic testing may be recommended if:

• You have a family history of cancer or endocrine tumors
• Your tumor has specific features suggesting inherited risk
• You may have hereditary syndromes like Multiple Endocrine Neoplasia Type 1 (MEN1)

A genetic counselor can help you understand whether testing is appropriate for your situation.

Biomarker Tests

Chromogranin A (CgA)

• A protein produced by neuroendocrine cells
• Elevated levels may indicate NET disease
• Can be used to monitor how you're responding to treatment

NETest (Emerging Biomarker)

• A blood-based test that analyzes multiple genes
• Shows promise in predicting tumor behavior and treatment response
• May help identify residual disease after surgery

Questions to Ask Your Doctor

Based on NCCN Guidelines recommendations, ask your care team:

1. What type of neuroendocrine tumor do I have, and where is it located?
2. What tests do you recommend for my specific situation?
3. How do I prepare for these tests?
4. When will I get the results, and who will explain them to me?
5. Can you give me a copy of my pathology report and test results?
6. Will you explain what my pathology report means?
7. Are there any genetic testing recommendations based on my tumor or family history?
8. How often will I need follow-up testing?

Important Next Steps

• Bring someone with you to appointments to help take notes
• Request copies of all blood tests, imaging results, and pathology reports
• Create a medical binder to organize your records—this is especially helpful if you seek a second opinion
• Ask about specialist referral: Consider whether you need care at a cancer center that specializes in NETs

Timeline Expectations

Testing typically happens over several weeks. Your care team will use all these results together to:

• Confirm your diagnosis
• Determine your tumor's stage (how far it has spread)
• Assess tumor grade and behavior
• Develop your personalized treatment plan

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This information is for educational purposes only. Always consult your healthcare team for personalized medical advice and decisions.