Pancreatic Neuroendocrine Tumor (NET)
What is Pancreatic Neuroendocrine Tumor (NET)?
Pancreatic neuroendocrine tumors are rare growths that start in the hormone-making cells of your pancreas. These cells normally release hormones that help control your blood sugar and digestion. When they become tumors, they may produce too many hormones or simply grow as a mass.
NETs are different from the more common type of pancreatic cancer. They often grow more slowly and respond better to treatment. Some NETs make extra hormones that cause symptoms, while others are called non-functional because they do not release hormones.
These tumors can be benign or malignant. They account for only 1 to 2 percent of all pancreatic tumors. Many are found by chance during imaging tests for other health issues.
Symptoms
Symptoms depend on whether the tumor produces hormones and which type it makes. Many pancreatic NETs cause no symptoms in early stages and are discovered accidentally.
- Abdominal pain or discomfort in the belly area
- Unexplained weight loss over weeks or months
- Jaundice, which is yellowing of the skin and eyes
- Low blood sugar episodes causing dizziness, sweating, or confusion
- Diarrhea that does not respond to usual treatments
- Stomach ulcers that keep coming back
- Skin rash that appears red and itchy
- Nausea or vomiting that persists
- Loss of appetite or feeling full quickly
Some people with small, non-functional tumors have no symptoms at all. The tumor may only be found during a scan for another reason.
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Causes and risk factors
The exact cause of pancreatic neuroendocrine tumors is not fully understood. Most cases happen randomly without a clear reason. Some people inherit genetic conditions that increase their risk, including multiple endocrine neoplasia type 1, von Hippel-Lindau disease, neurofibromatosis type 1, and tuberous sclerosis.
Risk factors include family history of certain genetic syndromes and having a parent or sibling with NETs. Unlike common pancreatic cancer, smoking and diet do not appear to be major risk factors. These tumors can occur at any age but are most often diagnosed in people between 40 and 60 years old.
How it's diagnosed
Diagnosis starts with blood tests to check for elevated hormones and pancreatic enzymes. Lipase levels may be elevated when a tumor causes inflammation or blocks the pancreatic duct. Rite Aid offers lipase testing as an add-on to help identify pancreatic issues early.
Doctors also use imaging tests like CT scans, MRI, or endoscopic ultrasound to see the tumor. A biopsy may be needed to confirm the diagnosis and determine if the tumor is benign or malignant. Specialized hormone tests can identify which type of functional NET is present. Early detection through routine blood work can lead to better outcomes.
Treatment options
- Surgery to remove the tumor when possible, which is the main treatment for localized NETs
- Medications called somatostatin analogs to control hormone symptoms and slow tumor growth
- Targeted therapy drugs that block specific pathways cancer cells use to grow
- Chemotherapy for tumors that have spread or are growing quickly
- Radiation therapy to shrink tumors or relieve symptoms
- Eating small, frequent meals to manage digestive symptoms
- Monitoring blood sugar levels closely if the tumor affects insulin production
- Regular follow-up imaging and blood tests to watch for changes
- Working with an endocrinologist to manage hormone-related symptoms
Treatment depends on tumor size, location, whether it makes hormones, and if it has spread. Many people with slow-growing NETs live for years with good quality of life.
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Frequently asked questions
Functional NETs produce excess hormones that cause specific symptoms like low blood sugar or severe diarrhea. Non-functional NETs do not release hormones and often cause no symptoms until they grow large enough to press on nearby organs. About 60 to 90 percent of pancreatic NETs are non-functional.
Blood tests can provide important clues about pancreatic NETs. Lipase levels may be elevated when a tumor causes inflammation or blocks the pancreatic duct. Specific hormone tests can identify functional NETs. However, imaging tests are usually needed to confirm the diagnosis and locate the tumor.
Not all pancreatic NETs are cancerous, but many are. Some are benign and do not spread to other parts of the body. Others are malignant and can spread to the liver, lymph nodes, or other organs. Even malignant NETs often grow slowly compared to common pancreatic cancer.
Pancreatic NETs are quite rare. They make up only 1 to 2 percent of all pancreatic tumors. About 1,000 new cases are diagnosed in the United States each year. Because they are uncommon, many people have never heard of them until they receive a diagnosis.
Survival rates vary widely based on tumor size, grade, and whether it has spread. Localized tumors that can be removed surgically have 5-year survival rates above 90 percent. Even when tumors have spread, many people live for years with treatment. NETs generally have better outcomes than typical pancreatic cancer.
Yes, checking lipase levels can help identify pancreatic problems including inflammation and tumors. Elevated lipase suggests the pancreas is not working properly. If you have ongoing abdominal pain, unexplained weight loss, or digestive issues, talk to your doctor about testing. Rite Aid offers lipase testing to help catch pancreatic issues early.
Some pancreatic NETs can be cured with surgery if they are found early and have not spread. Surgery to remove the tumor offers the best chance for cure. Even when cure is not possible, many treatments can control symptoms and slow tumor growth for years.
Several inherited syndromes raise your risk including multiple endocrine neoplasia type 1, von Hippel-Lindau disease, neurofibromatosis type 1, and tuberous sclerosis. If you have a family history of these conditions or have been diagnosed with one, talk to your doctor about screening. Genetic testing may be recommended for family members.
Some pancreatic NETs can affect blood sugar control. Insulinomas produce too much insulin and cause dangerously low blood sugar. Other NETs may damage the pancreas and lead to high blood sugar or diabetes. If you have unexplained blood sugar changes, discuss testing with your doctor.
Monitoring schedules depend on your tumor type and treatment. Most people need imaging scans every 3 to 6 months for the first few years. Blood tests to check hormone levels and pancreatic enzymes are also done regularly. Your doctor will create a personalized follow-up plan based on your specific situation.