Pediatric Cancer Predisposition Program: What to Expect

Identifying the best course of action for your child starts with understanding more about his or her unique situation.

Genetic counseling and genetic testing

Depending on what kind of testing your child has already had, you may start by meeting with our genetic counselor. The genetic counselor may recommend genetic testing.

Your child’s doctor may have referred your child for genetic counseling and testing because:

  • Your child has a cancer that might be inherited, such as retinoblastoma, adrenocortical carcinoma, pheochromocytoma/paraganglioma, pleuropulmonary blastoma, and medullary thyroid carcinoma.
  • Your child or a close family member has an early-onset tumor, such as rhabdomyosarcoma, at a young age.
  • Your child does not have cancer, but has a genetic condition that increases his or her risk of developing cancer in the future.
  • A close family member has a genetic condition that increases their risk of developing cancer, and you want to know if your child has the same condition.
  • A close family member has had more than one tumor, or multiple family members on the same side of the family have had cancer.

After reviewing this information, the genetic counselor will discuss appropriate genetic testing for your child. Most genetic counseling visits are 30 to 60 minutes long.

After the genetic test results have arrived, which may take several weeks, the genetic counselor will review the results with you. Depending on the test results, your child may benefit from longer-term care from oncology and genetics experts.

Oncology and genetics specialists working together

Once your child has been diagnosed with a cancer predisposition syndrome, we can care for your child in our multidisciplinary clinic. During your first visit, you may meet with several providers, such as a pediatric oncologist, nurse practitioner, and genetic counselor. The team will review your child’s medical history and your family’s history for things such as:

  • Diagnosis of cancer or tumors at an early age.
  • Tumors on both sides of the body.
  • More than one tumor.
  • Many family members on the same side of the family, like aunts, uncles, and grandparents, with a history of cancer.

It’s helpful to gather this family history before your child’s appointment and input it into an online questionnaire you will receive in advance.

Depending on your child’s unique situation, our genetic counselor and pediatric oncologist may recommend certain screening or tests, such as a blood test, ultrasound, or MRI, to help us monitor your child’s health and catch any cancer early on—improving our ability to treat it. We can also help coordinate care with other specialties if needed, including endocrinology, gastroenterology, surgery, psychology, and more.

In addition to testing, it’s important to meet with our team periodically because information on cancer genetics is quickly changing. It’s also important to talk with your genetic counselor if your family history information changes over time.

Many patients may benefit from some form of screening or monitoring for many years. When the time is right, we will work closely with your family and our colleagues at Stanford Health Care to transition your child’s care to adult specialists.

How to prepare for your child’s visit

You can prepare for your child’s visit by bringing:

  • Any questions you may have.
  • Copies of your child’s medical records.
  • Copies of already completed genetic test results or any genetic test that family members may have had in the past.
  • As much family history information as possible—for example, what type of cancer someone had and how old they were when they were diagnosed. You may be asked to fill out this information before your appointment.