ON THIS PAGE: You will find information about the estimated number of people who will be diagnosed with a pheochromocytoma or paraganglioma each year. You will also read general information on surviving these diseases. 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 either of these tumors 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 pheochromocytoma or paraganglioma?
Pheochromocytomas and paragangliomas are rare. It is estimated that about 2 to 8 people per every 1 million people are diagnosed with these tumors each year. Around 15% of these cases are cancerous. Paragangliomas are far less common than pheochromocytomas.
Pheochromocytomas affect men and women equally. The tumor can be diagnosed at any age, but it is most common between the ages of 30 and 50. Approximately 10% of these tumors are diagnosed in children. Age at diagnosis depends on whether the tumor is related to an inherited syndrome. People younger than 50 are more likely to have a hereditary pheochromocytoma (see Risk Factors).
What are the survival rates for pheochromocytoma and paraganglioma?
There are different types of statistics that can help doctors evaluate a person’s chance of recovery from a tumor. These are called survival statistics. A specific type of survival statistic is called the relative survival rate. It is often used to predict how a tumor may affect life expectancy. Relative survival rate looks at how likely people with a pheochromocytoma or paraganglioma 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 these tumors.
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 pheochromocytoma or paraganglioma are only an estimate. They cannot tell an individual person if these tumors 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 survival rates for a pheochromocytoma or paraganglioma vary based on several factors. These include the stage and exact location of tumor, a person’s age and general health, and how well the treatment plan works.
The 5-year relative survival rate for localized pheochromocytomas is 95%. The 5-year relative survival rate for a pheochromocytoma that has spread or recurred is estimated to be between 34% and 60%.
Experts measure relative survival rate statistics for tumors and cancers every 5 years. This means the estimate may not reflect the results of advancements in how a specific tumor 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 websites of the National Cancer Institute and the National Organization for Rare Disorders. (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 pheochromocytoma or paraganglioma. Use the menu to choose a different section to read in this guide.