Pediatric and Rare Tumor Clinic

Who can visit the clinic?

The Pediatric and Rare Tumor Clinic is for children and adults who have an increased risk of cancer due to family history or rare hereditary cancer conditions.

Specific syndromes or gene mutations include the following:

• Li-Fraumeni syndrome (LFS) due to genetic mutations in TP53
• DICER1 Tumor Predisposition Syndrome due to genetic mutations in DICER1
• PTEN Hamartoma Tumor Syndrome (also called Cowden Syndrome)
• Hereditary Retinoblastoma due to mutations in RB1
• Gorlin Syndrome or Basal Cell Nevus Syndrome due to mutations in PTCH1 or SUFU
• Familial Wilms Tumor
• Multiple Endocrine Neoplasia
• Familial Neuroblastoma due to mutations in ALK or PHOX2B
• Constitutional Mismatch Repair Deficiency
• Rhabdoid Tumor Predisposition Syndrome/Schwannomatosis due to mutations in SMARCB1
• Predisposition to Small Cell Carcinoma of the Ovary Hypercalcemic Type due to SMARCA4

Some families may have a history of cancers in childhood or rare tumors, but a specific genetic cause cannot be identified. These families may still benefit from a cancer screening plan.

Families with concerns and questions about their history of cancer can also be seen in this clinic. Examples include families with multiple cases of brain tumors, sarcomas, or relatives diagnosed with cancer in childhood.

Please call 801-587-9555 if your genetic tests show different mutations or a syndrome not listed above. Our genetic counselor can help you decide if this clinic is right for you.

When I visit the clinic, what will I do?

• Review your personal and family health history.
• Review your risks for cancer based on your type of gene mutation or syndrome.
• Meet with a genetic counselor, clinical psychologist, and oncologist specializing in hereditary cancer syndromes.
• Get a physical exam.
• Discuss enrollment in research projects.
• Plan follow-up screening and surveillance.

Do I need genetic testing before I come?

No. Your family history of cancer may be strong enough to qualify you for this clinic. If you haven’t been tested, your visit can start with genetic counseling to determine what tests you may need.