To Test or Not to Test

For Patients & Parents

There are many things to consider when thinking about TP53 testing. Learning the results of a genetic test can affect your whole family. Before doing genetic testing, you should think carefully about how knowing the test results might affect you, your child, and other family members.

About a quarter of children with adrenocortical tumors (ACT) and a TP53 mutation are the first person in the family with the mutation. About three-quarters of children with ACT and the TP53 mutation have 1 (one) parent who also has this mutation. This means half of a patient’s siblings (brothers and sisters) and a quarter of cousins related to the parent with the TP53 mutation also have the mutation.

Doctors and genetic counselors recommend starting TP53 testing with someone who has ACT or had it in the past before testing parents, siblings, or other family members.

Once a child tests positive for a TP53 mutation, adult family members might want to know if they have the same mutation. The test gives them information about their cancer risk. For this reason, it might be important to tell other family members when someone, such as your child, has a TP53 mutation. If your child’s blood test does not show the TP53 mutation, your family members will not benefit from testing.

Knowing your family medical history can help you make changes to lower your cancer risk. If you have a higher risk of certain cancers, your doctor might recommend tests like mammograms or colonoscopies earlier than usual or more often. You or your family members might need other tests and regular checkups by a doctor. Eating healthy foods, getting regular exercise, and quitting smoking can lower your chances of getting heart disease, cancer, and other diseases.