Diagnosis

Tests used to diagnosed paraganglioma include:

• Blood and urine tests. Your doctor may recommend blood tests and urine tests to measure the levels of hormones in your body. These tests may detect extra hormones produced by paraganglioma cells or a tumor marker called chromogranin A.
• Imaging tests. Imaging tests create pictures of the paraganglioma to help your doctor better understand the extent of the tumor and help determine the best treatment options. Tests may include MRI, CT, and specialized nuclear medicine imaging such as a metaiodobenzylguanidine (MIBG) scan and a positron emission tomography (PET) scan.
• Genetic testing. Paragangliomas are sometimes caused by gene mutations that can be passed from parents to children. Genetic testing may be recommended as part of your care.

Paragangliomas are rare, and many doctors have only rarely, if ever, cared for a person with this diagnosis. Ask your doctor about his or her experiencing treating paraganglioma. If you feel uncomfortable about your doctor's experience with this rare condition, consider seeking a second opinion from a doctor who specializes in caring for people with paragangliomas and other neuroendocrine tumors.