Pheochromocytoma

Since pheochromocytoma is a rare tumor and is sometimes asymptomatic, it can be difficult to diagnose. Healthcare providers sometimes find pheochromocytomas when a test or procedure is done for another reason.

A healthcare provider may suspect a diagnosis of pheochromocytoma after reviewing the following factors:

• A detailed medical history, including previous pheochromocytoma cases in your family.
• A thorough physical and medical evaluation.
• Certain symptom characteristics, such as paroxysmal attacks and high blood pressure that’s unresponsive to standard treatment.

What tests are used to diagnose pheochromocytoma?

Your healthcare provider may use the following tests and procedures to diagnose pheochromocytoma:

• 24-hour urine test: This type of urine (pee) test involves collecting your urine for 24 hours to measure the level of catecholamines (adrenal hormones) in your urine. Substances that result from the breakdown of these hormones are also measured. Higher-than-normal amounts of certain catecholamines in your urine may be a sign of pheochromocytoma.
• Blood catecholamine tests: These tests measure the level of catecholamines in your blood. Substances that result from the breakdown of these hormones are also measured. Higher-than-normal levels of certain catecholamines in your blood may be a sign of pheochromocytoma.
• CT scan (computer tomography scan): A CT scan is an imaging procedure that takes a series of X-ray images from different angles to provide detailed pictures of areas inside your body. Your provider may recommend a CT scan so that they can look at your adrenal glands.
• MRI (magnetic resonance imaging): An MRI is an imaging procedure that uses a magnet, radio waves and a computer to make a series of detailed pictures of areas inside your body. Your provider may recommend an MRI so that they can look at your adrenal glands.

After your provider has diagnosed pheochromocytoma, they’ll likely perform additional tests to see if the tumor is benign or malignant and if it has spread to other parts of your body.

Is there genetic testing for pheochromocytoma?

If you’re diagnosed with pheochromocytoma, your provider may recommend genetic counseling to find out your risk for having an inherited syndrome and other related cancers.

Your healthcare provider may recommend genetic testing if any of the following situations apply to you:

• You have a personal or family history of traits linked with inherited pheochromocytoma or paraganglioma syndrome.
• You have tumors in both of your adrenal glands.
• You have more than one tumor in one adrenal gland.
• You have signs or symptoms of higher-than-normal catecholamine levels in your blood.
• You’ve been diagnosed with pheochromocytoma before age 40.

If your genetic counselor finds certain gene changes in your testing results, they’ll likely recommend that your family members who are at risk but do not have signs or symptoms be tested as well.