ON THIS PAGE: You will find information about the estimated number of people who will be diagnosed with a neuroendocrine tumor (NET) each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors, and no 2 people with a tumor are the same. Use the menu to see other pages.
Every person is different, with different factors influencing their risk of being diagnosed with this tumor and the chance of recovery after a diagnosis. It is important to talk with your doctor about any questions you have around the general statistics provided below and what they may mean for you individually. The original sources for these statistics are provided at the bottom of this page.
How many people are diagnosed with a NET?
Overall, it is estimated that more than 12,000 people in the United States are diagnosed with a NET each year, and approximately 171,000 people are living with this diagnosis. The number of people diagnosed with this type of tumor has been increasing for years. This increase is thought to be related to improvements in the way NETs are diagnosed, including better imaging tests and endoscopy, and increased awareness of these tumors.
What is the survival rate for a NET?
There are different types of statistics that can help doctors evaluate a person’s chance of recovery from a NET. These are called survival statistics. A specific type of survival statistic is called the relative survival rate. It is often used to predict how having a tumor may affect life expectancy. Relative survival rate looks at how likely people with a NET are to survive for a certain amount of time after their initial diagnosis or start of treatment compared to the expected survival of similar people without this tumor.
Example: Here is an example to help explain what a relative survival rate means. Please note this is only an example and not specific to this type of cancer. Let’s assume that the 5-year relative survival rate for a specific type of cancer is 90%. “Percent” means how many out of 100. Imagine there are 1,000 people without cancer, and based on their age and other characteristics, you expect 900 of the 1,000 to be alive in 5 years. Also imagine there are another 1,000 people similar in age and other characteristics as the first 1,000, but they all have the specific type of cancer that has a 5-year survival rate of 90%. This means it is expected that 810 of the people with the specific cancer (90% of 900) will be alive in 5 years.
It is important to remember that statistics on the survival rates for people with a NET are only an estimate. They cannot tell an individual person if the tumor will or will not shorten their life. Instead, these statistics describe trends in groups of people previously diagnosed with the same disease, including specific stages of the disease.
The 5-year relative survival rates for a NET vary based on several factors. These include the stage of tumor, a person’s age and general health, and how well the treatment type works. Other factors that can affect outcomes include the type of NET, where the tumor is located, and whether the tumor can be removed using surgery. Visit the individual section for a specific type of NET for more information about survival statistics (see the Introduction for a list).
Experts measure relative survival rate statistics for a NET every 5 years. This means the estimate may not reflect the results of advancements in how a NET is diagnosed or treated from the last 5 years. Talk with your doctor if you have any questions about this information. Learn more about understanding statistics.
Statistics adapted from the Carcinoid Cancer Foundation website. Additional resource was: Dasari A, et al.: Trends in the Incidence, Prevalence, and Survival Outcomes in Patients With Neuroendocrine Tumors in the United States. JAMA Oncol. 2017;3(10):1335–1342. doi:10.1001/jamaoncol.2017.0589. (All sources accessed March 2023.)
The next section in this guide is Risk Factors. It describes the factors that may increase the chance of developing a NET. Use the menu to choose a different section to read in this guide.