Multiple endocrine neoplasia, type 2 (MEN 2)

Diagnosis

To diagnose multiple endocrine neoplasia, type 2, also called MEN 2, your healthcare professional does a physical exam and looks at your medical history and family history. You also may have genetic testing to see if you have a gene change that causes MEN 2.

People with MEN 2 need additional testing at the time of diagnosis and typically yearly after diagnosis. Screening on a regular basis for the tumors that MEN 2 can cause is important. Testing can include blood and urine tests and imaging tests, such as:

• Calcitonin levels in the blood. Calcitonin is a type of thyroid hormone.
• Blood calcium.
• Parathyroid hormone levels.
• Urine or plasma testing for catecholamines and metanephrines. These are adrenal hormones.
• MRI.
• CT scan.
• Ultrasound.

Treatment

Treatment for MEN 2 depends on the tumors it causes and whether they're on the thyroid, parathyroid or adrenal glands. The tumors can lead to other conditions, which can be treated. These conditions and treatments may include:

• Medullary thyroid cancer. The treatment for thyroid cancer, including cancer that has spread to other parts of the body, is removing the thyroid gland and the lymph nodes around it with surgery. Medicines also can treat cancer that has spread and can't be removed with surgery. Sometimes children with MEN 2 need thyroid surgery.
• Parathyroid enlargement. The parathyroid glands can get larger and make too much parathyroid hormone. Treatment most often is surgery to remove all or part of the parathyroid glands that are enlarged, while leaving any glands that are not affected.
• Adrenal tumors. For these types of tumors, your healthcare professional is likely to suggest removing one or both adrenal glands, depending on what CT or MRI images show.

Preparing for your appointment

You may start by seeing your healthcare professional. Or you may be sent to a specialist in conditions that affect the hormones, called an endocrinologist.

Here's some information to help you get ready for your appointment.

What you can do

When you make the appointment, ask if there's anything you need to do before it. This could include not eating for a time before having a certain test. Make a list of:

• Your symptoms, and when they began.
• Key personal information, including major stresses, recent life changes and family medical history.
• All medicines, vitamins or other supplements you take, including dosages.
• Questions to ask your healthcare professional.

Take a family member or friend along, if possible, to help you remember the information you're given.

For MEN 2, some basic questions to ask your healthcare professional include:

• What's likely causing my symptoms?
• Other than the most likely cause, what are other possible causes for my symptoms?
• What tests do I need?
• What's the best course of action?
• What other treatments are there?
• Could I get thyroid cancer?
• Could I get tumors that aren't cancer?
• Is there anything I can do to lower my risk of getting cancer?
• Should I have genetic testing?
• I have these other health conditions. How can I best manage them together?
• Are there restrictions I need to follow?
• Should I see a specialist?
• Are there brochures or other printed material I can have? What websites do you suggest?

Be sure to ask all the questions you have.

What to expect from your doctor

Your healthcare professional is likely to ask you questions, such as:

• When did your symptoms begin?
• Do you have symptoms all the time or do they come and go?
• How bad are your symptoms?
• What, if anything, seems to make your symptoms better?
• What, if anything, seems to make your symptoms worse?

What you can do in the meantime

Do not do anything that seems to make your symptoms worse.