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Childhood cancer and heredity

Genetic predisposition figures in about 10% of children with cancer. In those cases, the disease is caused by a change in the DNA. This change occurs (mostly) in all cells of the body from birth. This is called a 'tumor predisposition syndrome' (TPS).

Read more: What is childhood cancer?

Tumor predisposition syndrome
People with a TPS are more likely to develop cancer, but not everyone with TPS will get cancer. Other symptoms occur along with some tumor predisposition syndromes, such as special features or developmental delays.

The importance of recognizing a tumor predisposition syndrome (TPS)
When a child has cancer, we want to know whether they have a TPS. This can help with choosing the right treatment and post-treatment checkups.

This information can also be important for other family members to know. If a TSP is identified, we can investigate whether they have the same predisposition to cancer and if necessary arrange for checkups.

When is it investigated whether a child has a TPS?
Reasons to investigate whether a child has a TPS:

  1. The child has other health problems, congenital anomalies and/or special features.
  2. The child has a form of cancer that is often caused by a TPS or has been proven by means of a biopsy to be caused by a TPS.
  3. The child has a form of cancer that normally occurs in adults.
  4. The child has relatives who also had a form of cancer at a young age, or a particular form of cancer occurs often in one family.
  5. The child suffers above average side effects from the therapy.
  6. Parents wonder whether the cancer is hereditary.

Appointment with a clinical geneticist at the Princess Máxima Center
If there is any reason to investigate whether a child has a TPS, the child is referred to a clinical geneticist. Dr. Jongmans and Dr. Hopman are clinical geneticists attached to the Genetics Department of the UMC Utrecht and also give consultations at the Princess Máxima Center.

During the consultation, the clinical geneticist asks general questions about the child's health and development and draws up a genealogy of the child's family. In some instances, a form is sent out prior to the appointment requesting relevant family information. Should it also be necessary to retrieve a family member's medical history, the clinical geneticist includes a consent form for the family member to confirm their consent. The clinical geneticist sometimes examines the child's physical condition to check, among other things, for (subtle) special features that might indicate a TPS. Sometimes pictures are taken as well, for which permission is requested.

If DNA testing is deemed advisable, the clinical geneticist will discuss what it entails as well as the pros and cons of the test. DNA testing is covered by health insurance and is never mandatory. If DNA is tested, it is also agreed when and how the results will be discussed.

More information about different DNA testing methods and the possible outcomes can be found here (in Dutch).

After the DNA result
If the DNA test does not clearly indicate a TPS, it is discussed whether there is any reason for further genetic testing. If the DNA test indicates the occurrence of a TPS, the diagnosis and possible consequences for the child and their family members are discussed.

More information on several common tumor predisposition syndromes can be found here (in Dutch).