Frequently Asked Questions About the Cancer Predisposition Program

Patients are seen in the cancer predisposition clinic for variety of reasons. We provide genetic counseling and multidisciplinary care for the following conditions and more:

- Li-Fraumeni Syndrome
- DICER1 syndrome
- PTEN Hamartoma Tumor Syndrome
- Multiple Endocrine Neoplasia type 2 (MEN2)
- Familial Adenomatous Polyposis
- Hereditary Retinoblastoma

Sometimes, a child has a tumor or cancer which is associated with a genetic reason that puts them at an increased risk of developing other cancers in the future. Other children seen in our clinic have no history of cancer, but they have close family members who have had cancers. We also meet children who have had genetic testing for non-cancer reasons and have been found to have a genetic abnormality that increases their risk of cancer.

A cancer predisposition syndrome is when an individual is born with a genetic change that increases his or her risk for developing cancer, above the risk in the general population. A hereditary cancer syndrome is a genetic condition in which a genetic change or mutation increases the risks of cancer in affected family members. In these individuals, cancers may develop earlier in life, as compared to the general population and individuals may have multiple cancers in their lifetime. Some hereditary cancer syndromes have other non-cancer features, such as benign skin lesions or larger head size. It is important to note that not all hereditary cancer syndromes are inherited (passed down through a family). Sometimes, they are new in a patient, and this risk could be passed to the patient’s future children, but would not necessarily affect the patient’s siblings or parents.

Genetic counselors are professionals who have specialized education in genetics and counseling to assist patients in making personalized and informed decisions about their health. Genetic counseling aims to interpret genetic test results, and to guide and support patients and families seeking more information about the following:

- How inherited diseases and conditions might affect them or their families
- How personal and family medical histories may affect the chance of disease occurrence
- Which genetic tests may or may not be right for them
- What genetic tests may or may not tell us about their health
- How to make informed choices about genetic testing and medical conditions

Our team aims to helps families in understanding to the medical, psychological and familial implications of genetic contributions to cancer and other disease, focusing on:

- Interpretation of family and medical histories to assess the chance of disease occurrence
- Education about inheritance, testing, management, prevention
- Improving access to resources and research
- Counseling to promote informed choices regarding genetic testing and follow-up of genetic cancer conditions

At a typical appointment in our clinic, you and your child will meet with the cancer predisposition physician and genetic counselor. Often you will also meet with social worker or other team members. The physician and genetic counselor will take a detailed history for the child and his/her family, discuss the likelihood of a cancer predisposition in the patient and/or family and discuss genetic testing options (if indicated). The physician will perform a physical exam. Bloodwork may or may not be performed at a visit.

A first time appointment typically can last one hour. We recommend that you arrive at least 15 minutes before your scheduled appointment time to allow for registration.

Our program sees patients at the Lurie Children's main campus in Chicago. In the future, we expect to expand to other sites in the Chicagoland area.

We recommend that you talk to family members to obtain information about types of cancer diagnoses, ages at diagnosis and screening practices for your close family members (example: colonoscopy, mammography, preventive surgeries).

Ask your family members if they have had genetic testing in the past. If a family member has had testing, try to bring a copy of the results to the appointment.

To help with review of your family’s medical history, please sign up for MyChart – some of the patient’s history and the family history can be completed ahead of time on this tool. This information will be carefully reviewed by us and discussed with you at your visit.

Although recommended, you do not have to have a referral for your child’s appointment.

The cost of an appointment in our clinic will depend on your insurance and whether or not they will cover our services. The first genetic counseling appointment is typically covered by most insurance companies.

The cost of genetic testing can vary depending on the testing ordered, which cannot be determined until we meet with you at your appointment. We will work with you with prior authorizations for appointments and for genetic testing. Additional details about the cost of testing will be answered at your appointment.

We will discuss resources specific to your child and family at your appointment based on your specific hereditary cancer syndrome. Our website is updated on a regular basis with additional resources that may be useful for specific families.