What Is a Neuroendocrine Tumor?
A neuroendocrine tumor (NET) is a slow-growing type of cancer that begins in your hormone-producing cells. It is rare, but doctors diagnose more cases each year. An estimated 170,000 Americans currently live with a NET, according to the American Society of Clinical Oncology. Neuroendocrine tumors can occur in any part of your body, but are commonly seen in the stomach, intestines, rectum, lungs, and pancreas.
Neuroendocrine Tumor Symptoms
Fewer than half of people with a neuroendocrine tumor have symptoms. When symptoms occur, they can be vague and mimic other medical conditions, including different types of cancer.
Symptoms vary with the types of hormones the neuroendocrine tumor secretes:
- Abdominal cramping
- Bloating and gas
- Blood pressure fluctuations
- Diarrhea and nausea
- Dizziness
- Fatigue and muscle weakness
- Flushed skin or rashes
- Shortness of breath
- Weight loss
Without treatment, NETs may spread elsewhere in your body, including your bones, liver, and lymph glands.
Neuroendocrine Tumor Types
Doctors classify a NET based on where it starts in the body and how well organized the cells are in the tumor.
NETs can occur in any part of the body; however, a NET typically originates in three locations:
- Foregut (lung, stomach, or pancreas)
- Midgut (small intestine)
- Hindgut (large intestine and rectum)
Doctors also classify these tumors by how well the cells are organized: well-differentiated and poorly differentiated. The cells of a well-differentiated tumor are more organized and may be able to produce hormones like a normal cell. On the other hand, tumors with poorly differentiated cells are disorganized, don’t secrete hormones, and may grow faster. Poorly differentiated tumors are called neuroendocrine carcinomas and are treated differently.
Diagnosing Neuroendocrine Tumors
NETs are difficult to diagnose, which leads to patient misdiagnoses for years. At Huntsman Cancer Institute, our experts assess the patient’s history, symptoms, procedures such as endoscopies and colonoscopies, surgical findings, and imaging to diagnose NETS.
Our doctors recommend patients have highly specialized imaging tests:
- DOTATATE PET scans to view tumors in the body
- MRIs or CT scans with multi-phase contrast to create more detailed pictures
A biopsy is another important diagnostic tool. Your doctor will remove cells from the tumor tissue and use a microscope to measure how quickly the tumor’s cells divide.
Armed with the results from these tests, our multidisciplinary team will create a customized treatment plan.
Why Choose Huntsman Cancer Institute?
At Huntsman Cancer Institute at the University of Utah, we know people with NETs often wait years for an accurate diagnosis and effective treatment plan to improve their quality of life. Our experts review your case in a multidisciplinary tumor board. This review means providers from specialties such as gastroenterology, medical oncology, radiology, pathology, surgery, and nutrition work together to diagnose NET and recommend treatments.
As the leading NET program in the Mountain West, we offer the latest treatments and services:
- Advanced functional imaging to see small tumors
- Expertise in NET symptoms and treatments
- Help deciding when to start or change treatment
- Multiple clinical trials to find new ways to prevent, detect, control, or treat NETs
- Peptide receptor radionuclide therapy (PRRT), a type of radiation treatment
- Surgical options and minimally invasive medical treatments
- Coping strategies for dealing with symptoms
Find a Neuroendocrine Tumor Specialist
Neuroendocrine Tumor Causes
Unlike most cancers that start in the lining of an organ, a neuroendocrine tumor occurs when hormone-making cells multiply. Doctors don’t fully understand why this happens. Researchers have not identified environmental or lifestyle factors that cause NETs. Genetics may play a role in some cases, but it is rare.
Neuroendocrine Cancer Life Expectancy
Doctors cannot predict how long you will live with neuroendocrine tumor. However, many people live for decades. Early detection and aggressive monitoring are key to good outcomes. Evidence also suggests that patients who receive care from dedicated NET multidisciplinary teams have longer life expectancies than those treated with standard cancer care.
Make an Appointment with a NET Specialist
To make an appointment to see a NET expert, please fill out our appointment form or call 801-587-4422. Our team will determine if your insurance covers treatment at Huntsman Cancer Institute or if you need a referral from a primary care doctor.
To refer a patient, please use our online referral form or call 801-587-7000 to speak to a patient registration specialist
Interested in Participating in a Clinical Trial?
Contact the Cancer Learning Center at 1-888-424-2100 or cancerinfo@hci.utah.edu.