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Staying vigilant against an elusive cancer

It is not uncommon to see patients with these tumors who have been misdiagnosed or miscategorized as having either no condition or some other medical condition.

– Dr Anthony Heaney

Diagnosing a NET can be challenging for a number of reasons1:

  • Tumors can form in multiple locations, including the lungs, pancreas, and difficult-to-pinpoint areas within the midgut2
  • The primary tumor is often small and may be discovered incidentally, such as during a routine exploratory exam or surgical procedure
  • NETs vary widely in their clinical presentation3; symptoms are often nonspecific and can be mistaken for those of other more common conditions,1 such as irritable bowel syndrome (IBS), diabetes, or asthma1,2
  • Some NETs may be asymptomatic for years and may only begin to cause symptoms after they have metastasized, usually to the liver or bone1

These factors and others can contribute to a delay in diagnosis for many patients. In fact, the estimated time to diagnosis for certain types of gastrointestinal (GI) and pancreatic NETs is up to 5 to 7 years from initial onset of symptoms.4

About 50% of patients with reported disease stage have either regional or distant metastases at diagnosis.5

Suspect, detect, and diagnose: We can do better

Accurate and earlier NET diagnosis is the first step in shortening the time to optimal care and improved outcomes for patients.1

Currently, the estimated time to diagnosis for certain types of NETs is up to 5 to 7 years from initial onset of symptoms.4 Click on the graphic to learn more about the typical diagnostic pathway for NETs.

A key goal of The NET Alliance™, along with professional and patient groups throughout the world, is to help increase diagnosis rates and decrease diagnosis times for patients suffering with NETs.

A number of biochemical tests and imaging techniques have important roles in NET diagnosis.6 Accurate pathologic reporting is also critical for definitive diagnosis.

Typical diagnostic pathway for Neuroendocrine Tumors (NETs)

Learn more about the advantages, caveats, and nuances of each of these tools: