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Mayo Clinic has a great deal of experience in the treatment of multiple endocrine neoplasia type 1 (MEN 1), a complex genetic disorder that can result in a variety of tumors throughout the body. People who have the genetic abnormality associated with MEN 1 are at an increased risk for hyperparathyroidism, pituitary tumors, pancreatic tumors and other neuroendocrine tumors. Mayo Clinic specialists work as a team to counsel and treat patients who have this rare disease. Specialists involved with care of MEN 1 patients include endocrinologists, endocrine surgeons, gastroenterologists, neurosurgeons, oncologists, neuro-oncologists and geneticists. Ongoing research projects examine the best screening methods and treatment options for MEN 1 patients.
Mayo specialists diagnose MEN 1 in probands (first family member to be identified) by documenting two of the three major manifestations (parathyroid, pancreatic neuroendocrine or pituitary tumors) or one major manifestation in a family member of a proband. Specialists confirm the presence of MEN 1 through genetic testing. Genetic testing is positive in more than 90 percent of MEN 1 patients. The disease can express itself in many ways, which makes multiple imaging and diagnostic methods necessary to evaluate the disease and disease progression. Familial genetic screening and consultation is available for individuals suspected of being at risk for MEN 1. Read more about diagnosis of multiple endocrine neoplasia.
Treatment depends on the problem present. Pituitary tumors, primary hyperparathyroidism, pancreatic tumors and other MEN 1-related conditions each require specific treatment approaches. In the early stages Mayo specialists may consider medical and surgical therapy to manage the tumors. When the cancer has spread, radiation, chemotherapy and other specialty care such as radiofrequency ablation may be used. Read more about treatment for multiple endocrine neoplasia.
MEN 1 is an inherited disorder that can cause tumors in at least eight endocrine and non-endocrine tissues. Children of an affected parent have a 50 percent chance of being predisposed to the disease. The gene associated with MEN 1 is found on the long arm of chromosome 11 (11q13), a tumor suppressor gene. The incidence of MEN 1 varies from 0.2 to 2 per 100,000. Major clinical symptoms of MEN 1 include primary hyperparathyroidism (seen in more than 95 percent of patients), pancreatic endocrine tumors (seen in 50 to 75 percent of patients), and pituitary tumors (seen in 30 to 55 percent of patients). The disease rarely expresses itself before age 10. Most often, the condition will present itself between the ages of 20 and 40.
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