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There are three main types of growth that can occur in MEN1. These growths are often called tumours but are usually not malignant or cancer. They occur in the parathyroid glands in the neck, the endocrine pancreas and gut (duodenum) and the pituitary gland at the base of the brain behind the nose.

80% (8 out of 10) of MEN1 patients will have developed at least one of the growths by the age of 50, and 43% (4 out of 10) by the age of 20. Younger cases have been recorded. The condition varies greatly even within families; not everyone will have the same growths and they will not occur at the same age. Not all MEN1 patients will have all of the growths described here .

Blood tests to look at hormone levels and scans of the head, neck and abdominal area are all used to check for growths. If a growth is found an operation may be needed to remove either just the growth itself or the whole of the affected gland. In some cases treatment with controlling medications may be used.

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  • AMEND-produced detailed MEN1 Patient Information Book (we recommend that you discuss the contents of this book with your specialist - it is not for use in self-diagnosis, and not all of the information it contains may be relevant to you)

Information input date: December 2005

Last review date: November 2008

Next review date: March 2009