Multiple Endocrine Neoplasia Type 1 (MEN1)

Frequently Asked Questions (FAQs)

Q: Who is the best person in the family to undergo genetic testing?

A: In order to determine if a hereditary cause exists in the family, genetic testing is usually offered to the family member whose personal history is most suggestive of MEN1 (e.g., someone with a personal history of tumours at a young age or clinical presentations suggestive of MEN1).

It is usually not advisable to test someone without a history of cancer / tumours / clinical features unless the condition has already been identified in the family.

The genetic test results of an asymptomatic individual may have limitations:

• If they were to receive a negative result, it may not mean that there is not a hereditary cause of cancer/tumours/clinical features in the family. The individual being tested may not have inherited it, but others in the family may have, or the faulty gene(s) may not have been identified yet.
• The result is only useful to the asymptomatic person being tested and their children, but not to their parents, siblings and other extended family members.

Once the faulty gene in the family is identified, genetic testing can be ffered to other family members, including those who do not have a tumour/cancer. This will help them understand if they have inherited the faulty gene and if so, tailor their management to manage or reduce their risks.

Common Myths & Misconceptions

1. If my genetic test result is positive, it means that I have or will have tumours, or my tumour will recur.

   FALSE. The genetic test result cannot determine the likelihood of tumour recurrence or the presence of a tumour. A positive result only indicates an increased risk of developing tumours.
   
   

2. If I or my child tests positive, it means that my children/grandchildren will also have MEN1.

   FALSE. If you or your child has MEN1 and a positive genetic test result where a faulty MEN1 gene(s) is identified, it means each of your children/grandchildren has a 50% (1 in 2) chance of inheriting the same faulty MEN1 gene(s) and having the MEN1 condition.
   
   

3. My child looks a lot like me, so he/she must have inherited the faulty gene(s) since I have it.

   FALSE. Genes that govern your appearance are different from the MEN1 gene that causes the MEN1 condition. All first-degree relatives (siblings, children and parents) have a 50% (1 in 2) chance of inheriting the faulty MEN1 gene, regardless of whether they look like you or not.
   
   

4. I have two brothers, so one will inherit the faulty gene(s) and one will not, because there is a 50% chance.

   FALSE. Each first-degree relative (parents, siblings and children) has a 50% (1 in 2) chance of inheriting the faulty gene(s). The genetic test result of one sibling does not impact the chances of the other sibling.

Download the Multiple Endocrine Neoplasia Type 1 brochure.