How Serious Are Neuroendocrine Tumors? Understanding Survival Rates

Neuroendocrine tumors are an uncommon type of cancer that start in specialized cells called neuroendocrine cells. Finding out about a cancer diagnosis can be frightening. And it’s natural to immediately want to know about prognosis and survival rates. 

But when it comes to neuroendocrine tumors, finding that answer can be difficult. That’s because neuroendocrine tumors are rare, which means there’s less data on these types of cancer when compared with other, more common types of cancer. Also, not all neuroendocrine tumors are the same — they may behave and grow differently, which affects a person’s prognosis. Here’s how to understand neuroendocrine tumor survival rates. 

What are neuroendocrine tumors?

Before jumping into survival rates, it’s helpful to understand a little bit about neuroendocrine tumors. Neuroendocrine cells are found in different organs in the body and their job is to release hormones. These hormones help regulate important bodily functions like digestion, lung airflow, bone and muscle growth, and blood pressure. 

Neuroendocrine cells can change into cancer cells. This happens when the DNA in a normal cell gets damaged (mutates) and bypasses checkpoints in the body that normally destroy these mutated cells. Cancer cells can then grow, divide, and spread. 

How serious are neuroendocrine tumors?

It depends. Each tumor has its own set of unique characteristics. Experts use these characteristics to offer a person information on how a tumor is likely to behave over time and how likely it is to respond to treatment. These two factors determine an individual’s long-term outlook or “prognosis”. 

Some neuroendocrine tumors are more aggressive. They grow and spread easily. These tumors are usually more difficult to treat. Other neuroendocrine tumors are slow growing and can be successfully treated or even cured.

The following tumor characteristics play a role in determining a person’s prognosis:

• Size and location: Neuroendocrine tumors start in one part of the body. They may grow and spread to nearby tissue and lymph nodes. The original size, location, and spread of the tumor determine a cancer’s stage. It’s depicted as a number, usually from 0 to 4. A higher stage indicates a more advanced type of cancer, which is more difficult to treat. Higher stage cancers are associated with poorer prognosis.

• Appearance: When you look at cancer cells under a microscope, you can see how similar they look to normal cells. Some cancer cells don’t look too different from healthy cells while others don’t look like healthy cells at all. Cancer cells that look more like healthy cells are considered well-differentiated. People with well-differentiated cancers usually have a better long-term prognosis. 

• Growth rate: Some tumors grow faster than others. The tumor’s growth rate is called a grade. A grade is represented as a number, from 0  to 3, or with the letter “X”. Higher grade tumors are more likely to grow and spread quickly and are associated with a poor prognosis.

But keep in mind that this information gives a starting point about how a neuroendocrine tumor is likely to behave. A person’s prognosis also depends on how well their cancer responds to treatment and whether the tumor can be completely removed with surgery.

What is the life expectancy of neuroendocrine tumors?  

It depends on a person’s overall health and the unique characteristics of their neuroendocrine tumor.

This information is often presented as survival rates. Survival rates describe the likelihood that a person with cancer will still be alive after a certain number of years. These numbers come from statistics on how well people diagnosed with cancer have done in the past. Survival rates are always changing because as time goes on, new treatments become available, which affect how long people can live with a certain type of cancer. 

You can find 1-, 3-, 5- and 10-year survival rates for most types of cancer, including neuroendocrine cancers. But it’s important to remember that survival rates only offer broad estimates. And with neuroendocrine tumors, each case is so unique that these estimates may not be very helpful to an individual person. 

For example, the 5-year relative survival rate for a neuroendocrine tumor that starts in the gastrointestinal tract is 94%. That means 94% of people diagnosed with neuroendocrine tumors of their gut are still alive 5 years later. But when you drill down on the statistics you find that the 5-year survival rate can be as high as 97% if the tumor hasn’t spread or as low as 68% if the cancer has spread to other parts of the body. 

Meanwhile, the 5-year relative survival rate for a neuroendocrine tumor that starts in the lung is 89%. This number jumps up to 98% for people who have an early-stage neuroendocrine tumor of the lung but drops to 55% if the cancer has already spread to other body parts. 

For people with neuroendocrine tumors that start in the pancreas, the 5-year relative survival rate is 53%. This number moves from 95% for cancer that hasn’t spread to 23% for cancer that has spread to other parts of the body. 

As you can see, the numbers vary widely depending on each situation. But people tend to do very well when neuroendocrine tumors are caught early and haven’t had a chance to spread.

When looking at survival estimates, it’s important to keep your specific information in mind. It can be very challenging to interpret this information, but your healthcare team can help you filter through what’s relevant for you. 

Why trust our experts?

Written by:

Tracy Norfleet, MD, FACP

Dr. Tracy Norfleet is a board-certified Internal Medicine physician, health expert, and physician leader with over 20 years of experience practicing adult medicine. Dual-certified by the American Board of Obesity Medicine and the American Board of Lifestyle Medicine, Dr. Tracy possesses a wealth of knowledge and expertise in both traditional medical practices and innovative lifestyle interventions for chronic disease management and reversal.

Edited by:

Patricia Pinto-Garcia, MD, MPH

Patricia Pinto-Garcia, MD, MPH, is a medical editor at GoodRx. She is a licensed, board-certified pediatrician with more than a decade of experience in academic medicine.

Our editorial standards

Meet our experts