Neuroendocrine tumors
What is Neuroendocrine tumors?
Neuroendocrine tumors are rare growths that start in specialized cells called neuroendocrine cells. These cells are found throughout your body and have features of both nerve cells and hormone-making cells. They release hormones in response to signals from your nervous system.
These tumors can develop in many organs, including the lungs, pancreas, stomach, intestines, and other parts of the digestive system. Some neuroendocrine tumors grow slowly and may not cause symptoms for years. Others grow more quickly and can spread to other parts of the body.
Most neuroendocrine tumors produce hormones that can cause specific symptoms. The type and severity of symptoms depend on which hormones the tumor releases and where it is located. Understanding your hormone levels through blood testing helps doctors track these tumors and plan treatment.
Symptoms
- Flushing of the face and neck
- Diarrhea or changes in bowel movements
- Wheezing or difficulty breathing
- Rapid heartbeat
- Low blood sugar episodes
- Stomach ulcers or abdominal pain
- Skin rashes
- Unexplained weight loss
- Fatigue or weakness
- High blood pressure
Many people with small neuroendocrine tumors have no symptoms at all. These tumors are often discovered by accident during imaging tests for other health concerns. Symptoms typically appear when tumors grow larger or produce excess hormones.
Concerned about Neuroendocrine tumors? Check your levels.
Screen for 1,200+ health conditions
Causes and risk factors
The exact cause of neuroendocrine tumors is not fully understood. Most cases occur without any clear genetic link or family history. Some people inherit genetic conditions that increase their risk, including multiple endocrine neoplasia type 1, von Hippel-Lindau disease, and neurofibromatosis type 1. These inherited conditions affect how cells grow and divide.
Risk factors include a family history of neuroendocrine tumors or related genetic syndromes. Age also plays a role, as these tumors are more common in people over 60. Unlike many cancers, lifestyle factors like smoking and diet have not been clearly linked to most neuroendocrine tumors. Research continues to explore what triggers these cells to become cancerous.
How it's diagnosed
Diagnosis typically begins with imaging tests like CT scans, MRI, or specialized nuclear medicine scans. Blood tests play an important role by measuring hormone levels and tumor markers. Chromogranin A is a protein that is often elevated when neuroendocrine tumors are present. Doctors use this marker to help confirm a diagnosis and monitor the tumor over time.
A biopsy, where a small tissue sample is examined under a microscope, provides the final diagnosis. Specialized urine tests may also measure hormones that certain tumors produce. Talk to a doctor about which tests are right for your situation. Our medical team can help guide you through the testing process and connect you with specialists.
Treatment options
- Surgery to remove the tumor, often the first treatment option when possible
- Medications that block hormone production and reduce symptoms
- Somatostatin analogs that slow tumor growth and control hormone release
- Targeted drug therapies that attack specific tumor cell features
- Chemotherapy for faster-growing or advanced tumors
- Radiation therapy, including specialized treatments that deliver radiation directly to tumor cells
- Liver-directed therapies when tumors have spread to the liver
- Regular monitoring with blood tests and imaging to track tumor activity
- Nutritional support to manage symptoms like diarrhea and maintain healthy weight
- Symptom management medications for flushing, pain, and other effects
Frequently asked questions
Neuroendocrine tumors are rare growths that develop from cells that make hormones in response to nerve signals. They can occur in many organs throughout the body. Some grow slowly over years while others are more aggressive. These tumors often produce excess hormones that cause specific symptoms.
Common symptoms include facial flushing, diarrhea, wheezing, and rapid heartbeat. Many people also experience stomach pain, unexplained weight loss, or low blood sugar episodes. However, small tumors may cause no symptoms at all. Symptoms depend on which hormones the tumor produces and where it is located.
Doctors use imaging tests like CT scans and MRI to locate tumors. Blood tests measure hormone levels and tumor markers like Chromogranin A. A biopsy confirms the diagnosis by examining tumor cells under a microscope. Specialized scans can show how far the tumor has spread.
Chromogranin A is a protein released by neuroendocrine cells. Levels often rise when neuroendocrine tumors are present. Doctors use this blood test to help diagnose tumors and monitor how well treatment is working. High levels may indicate active tumor growth or spread.
Neuroendocrine tumors can be either benign or cancerous. Many are slow-growing and may not spread for years. Others are more aggressive and can spread to other organs. The specific type and grade of the tumor determines how likely it is to grow or spread.
Surgery can cure some neuroendocrine tumors when they are found early and have not spread. Even when a cure is not possible, many treatments can control symptoms and slow tumor growth. People with these tumors can often live for many years with proper treatment. Regular monitoring helps catch any changes early.
The exact cause is unknown in most cases. Some people inherit genetic conditions that increase their risk. These include multiple endocrine neoplasia type 1 and von Hippel-Lindau disease. Unlike many cancers, lifestyle factors have not been clearly linked to neuroendocrine tumors.
Testing frequency depends on your tumor type, treatment plan, and how aggressive the tumor is. Many patients need blood tests every 3 to 6 months to monitor Chromogranin A and other markers. Imaging tests are typically done every 6 to 12 months. Your oncologist will create a personalized monitoring schedule.
Surgery is often the first treatment when the tumor can be removed. Medications can block hormone production and control symptoms. Other options include targeted drug therapies, chemotherapy, and specialized radiation treatments. Many patients use a combination of treatments tailored to their specific tumor type and location.
While diet and lifestyle do not cure these tumors, they can help manage symptoms. Eating smaller, more frequent meals may reduce digestive symptoms. Avoiding alcohol and spicy foods can help prevent flushing episodes. Good nutrition supports overall health during treatment. Always discuss dietary changes with your healthcare team.