Diagnosing neuroendocrine tumors (NETs): What you need to know

  • NETs are a form of cancer.1 The primary tumor is usually small.2 The majority of NETs develop in the digestive system, including the pancreas, but they can also arise in the lungs.3 All of these types of NETs can spread throughout the body
  • Diagnosing NETs can be a challenge for even the most experienced doctors
  • NETs can be "silent"—not showing symptoms for years1,2,4
  • Some NETs, especially those arising in the digestive system, can cause symptoms that are also common symptoms for many other digestive disorders, such as diarrhea, abdominal pain/cramping, and flushing.2 Similarly, NETs in the lungs may cause coughing or asthma-like symptoms, making them hard for doctors to diagnose5,6
  • Other symptoms that may be associated with NETs in the digestive system are ulcers, weight loss,7 hypoglycemia (low blood sugar),2 occasional hypotension (low blood pressure),8 and heart disease in the right-side valves1,9,10
  • Details are important! The best way to help your doctor is to track all your symptoms—even if they don't seem to be related to digestive problems
  • If your doctor suspects a NET, he or she can choose from a wide range of tests; sometimes a combination of several tests is necessary to get a complete picture2
  • Test options can include a blood or urine sample, an imaging scan, such as an MRI, or endoscopy, where a camera is inserted into the digestive tract

pdfDownload a glossary of NET terms for patients

1. Jensen RT, Doherty GM. Carcinoid tumors and the carcinoid syndrome. In: DeVita VT Jr, Hellman S, Rosenberg SA, eds. Cancer: Principles & Practice of Oncology. 7th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2005:1559-1574.

2. Mamikunian G, Vinik AI, O'Dorisio TM, Woltering EA, Go VLW. Diagnosing and treating gastroenteropancreatic tumors, including ICD-9 codes. In: Neuroendocrine Tumors: A Comprehensive Guide to Diagnosis and Management. 4th ed. Inglewood, CA: Inter Science Institute; 2009:1-43.

3. Yao JC, Hassan M, Phan A, et al. One hundred years after "carcinoid": epidemiology of and prognostic factors for neuroendocrine tumors in 35,825 cases in the United States. J Clin Oncol. 2008;26(18):3063-3072.

4. Toth-Fejel S, Pommier RF. Relationships among delay of diagnosis, extent of disease, and survival in patients with abdominal carcinoid tumors. Am J Surg. 2004;187(5):575-579.

5. Fink G, Krelbaum T, Yellin A, et al. Pulmonary carcinoid: presentation, diagnosis, and outcome in 142 cases in Israel and review of 640 cases from the literature. Chest. 2001;119(6):1647-1651.

6. Phan AT, Öberg K, Choi J, et al. NANETS consensus guideline for the diagnosis and management of neuroendocrine tumors: well-differentiated neuroendocrine tumors of the thorax (includes lung and thymus). Pancreas. 2010;39(6):784-798.

7. Metz DC, Jensen RT. Gastrointestinal neuroendocrine tumors: pancreatic endocrine tumors. Gastroenterology. 2008;135(5):1469-1492.

8. Kaltsas GA, Besser GM, Grossman AB. The diagnosis and medical management of advanced neuroendocrine tumors. Endocr Rev. 2004;25(3):458-511.

9. Møller JE, Connolly HM, Rubin J, Seward JB, Modesto K, Pellikka PA. Factors associated with progression of carcinoid heart disease. N Engl J Med. 2003;348(11):1005-1015.

10. Rorstad O. Prognostic indicators for carcinoid neuroendocrine tumors of the gastrointestinal tract. J Surg Oncol. 2005;89(3):151-160.

 

NET Fact

Multidisciplinary Approach

50% of all patients have either regional or distant metastases at diagnosis.

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Yao JC et al. J Clin Oncol. 2008;26(18):3063-3072.

 

Managing from a nurse's perspective

nurse's perspective

Tips to educate, engage, and empower your patients.

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A list of available tools to help patients with NETs and the physicians who care for them

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1. Jensen RT, Doherty GM. Carcinoid tumors and the carcinoid syndrome. In: DeVita VT Jr, Hellman S, Rosenberg SA, eds. Cancer: Principles & Practice of Oncology. 7th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2005:1559-1574.
2. Mamikunian G, Vinik AI, O'Dorisio TM, Woltering EA, Go VLW. Diagnosing and treating gastroenteropancreatic tumors, including ICD-9 codes. In: Neuroendocrine Tumors: A Comprehensive Guide to Diagnosis and Management. 4th ed. Inglewood, CA: Inter Science Institute; 2009:1-43.
3. Yao JC, Hassan M, Phan A, et al. One hundred years after "carcinoid": epidemiology of and prognostic factors for neuroendocrine tumors in 35,825 cases in the United States. J Clin Oncol. 2008;26(18):3063-3072.
4. Toth-Fejel S, Pommier RF. Relationships among delay of diagnosis, extent of disease, and survival in patients with abdominal carcinoid tumors. Am J Surg. 2004;187(5):575-579.
5. Fink G, Krelbaum T, Yellin A, et al. Pulmonary carcinoid: presentation, diagnosis, and outcome in 142 cases in Israel and review of 640 cases from the literature. Chest. 2001;119(6):1647-1651.
6. Phan AT, Öberg K, Choi J, et al. NANETS consensus guideline for the diagnosis and management of neuroendocrine tumors: well-differentiated neuroendocrine tumors of the thorax (includes lung and thymus). Pancreas. 2010;39(6):784-798.
7. Metz DC, Jensen RT. Gastrointestinal neuroendocrine tumors: pancreatic endocrine tumors. Gastroenterology. 2008;135(5):1469-1492.
8. Kaltsas GA, Besser GM, Grossman AB. The diagnosis and medical management of advanced neuroendocrine tumors. Endocr Rev. 2004;25(3):458-511.
9. Møller JE, Connolly HM, Rubin J, Seward JB, Modesto K, Pellikka PA. Factors associated with progression of carcinoid heart disease. N Engl J Med. 2003;348(11):1005-1015.
10. Rorstad O. Prognostic indicators for carcinoid neuroendocrine tumors of the gastrointestinal tract. J Surg Oncol. 2005;89(3):151-160.