Multiple Endocrine Neoplasia

Why choose us for multiple endocrine neoplasia?

Multiple endocrine neoplasia (MEN) is a rare genetic condition affecting adults and children. It causes tumors in numerous endocrine glands. Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center, has a team of doctors with experience treating this condition, so you receive more of the services you need close to home.

Fellowship-trained cancer doctors (oncologists), surgeons and endocrinologists work together to coordinate tests and treatments. Our team’s experience enables us to anticipate your needs so you receive appropriate care.

MEN is one of many rare endocrine syndromes that’s passed down in families. We are among the few programs in South Texas capable of treating these complex conditions. Read more about rare and familial endocrine tumors.

What you need to know about multiple endocrine neoplasia

• Your endocrine system is a network of glands that produce hormones to help your organs work.
• MEN happens when abnormal gene changes (mutations) cause tumors to form in endocrine glands and sometimes other tissues. Some tumors may become cancerous.
• Having a mutation for multiple endocrine neoplasia does not always mean you’ll develop tumors.
• You may be at risk for MEN if you have:
  • Two or more tumors in your endocrine glands
  • One endocrine gland tumor and a parent or sibling with MEN
• If you are at risk, you need lifelong care, including regular screenings to detect tumors.
• Younger patients with MEN receive additional support and specialized inpatient care through our adolescent and young adult cancer program.

How to talk to your doctor about multiple endocrine neoplasia

Multiple endocrine neoplasia affects your health. It may also impact other members of your family. We take time to answer your questions and help you plan for future health needs.

You might want to ask your doctor about:

• Additional testing to assess your tumor risk and how often you need these tests
• Diagnosis, including the size and location of tumors, if you have any, and whether they are cancerous
• Genetic testing to determine which MEN gene mutations run in your family and which relatives may be at risk
• Treatments, if needed, which may include medications and surgery
• Support to help you and your family cope with the ways MEN may affect your life

Making decisions about tests and treatments can be challenging. In addition to the support you receive from our team, your loved ones can also help. Feel free to bring family or trusted friends with you to care appointments.

Types

There are many types of multiple endocrine neoplasia. The two most common are:

MEN1, which can occur at any age and stems from a mutation in the MEN1 gene. MEN1 causes:

• Adrenal tumors and cancer
• Neuroendocrine tumors of the pancreas
• Parathyroid tumors and cancer
• Pituitary tumors

MEN2 typically starts in childhood and occurs when there are problems with the RET gene. MEN2 causes:

• Certain types of thyroid cancer
• Mucosal neuromas, which are tumors affecting the lip lining, tongue and gastrointestinal tract
• Pheochromocytoma, a type of adrenal tumor that causes dangerously high blood pressure

Symptoms

The symptoms you experience depend on the type of MEN and location of the tumors. You may experience:

• Bone problems
• Headaches, usually in the front of the head
• Overactive glands, including the parathyroid (hyperparathyroidism)
• Thickened lips and tongue
• Vision problems

Diagnosis

We use several tests to confirm a MEN diagnosis and check for tumors.

These tests may include:

• Genetic testing to determine whether you have the mutation responsible for MEN
• Blood or urine tests to detect abnormally high levels of hormones
• Imaging scans to pinpoint suspicious growths that may be tumors or cancer

Treatment

Regular monitoring for tumors, even if you have no symptoms, is an important part of treatment. Blood or urine tests and imaging scans can uncover early signs of tumors, when they may be easier to treat. Learn more about our cancer genetics and high-risk screening clinic.

If we detect tumors or cancer, your care may include:

• Surgery: Our experienced surgeons remove tumors or overactive glands using leading techniques. Read more about cancer surgery.
• Medications: We may prescribe medications to relieve symptoms such as headaches.
• Radiation therapy: This option is for people who cannot have surgery. We also use it to treat trace levels of cancer that remain after surgery. Get more information about radiation oncology.
• Thyroid hormone replacement: If MEN affects your thyroid and we need to remove it, this therapy helps you maintain normal thyroid levels. Learn more about thyroid hormone therapy.

Research and clinical trials

Cancer research at Mays Cancer Center gives eligible patients access to innovative new treatments and services through clinical trials. Get more information about cancer clinical trials and research.