Multiple endocrine neoplasia syndromes

Patients and their families should be made aware that first-degree relatives may need evaluation and that genetic counselling is an important part of genetic testing.

Good patient information about the range of associated tumours, signs, and symptoms can assist in early detection of symptomatic tumours.

Stressing the importance of attending scheduled appointments and testing, even in the absence of subjective symptoms, is essential.

Patients should be made aware of the morbidity and mortality rates of surgical complications and be given appropriate information to consider when deciding between surgical and medical management of hormone excess. This is especially necessary for the complex surgery involved in trying to cure multifocal gastrinomas in Zollinger-Ellison syndrome. They should also be made aware of the necessity for lifelong monitoring to detect recurrences.

Comprehension of the impact of early genetic testing and management in offspring of affected patients is vital.

Participation in support groups of patients with similar diseases is also encouraged. Websites, including Patient UK and the Association for Multiple Endocrine Neoplasia Disorders, may be of benefit to patients and families. Patient: MEN1 Opens in new window Patient: MEN2 Opens in new window Association for Multiple Endocrine Neoplasia Disorders (AMEND) Opens in new window