Having a child develop a serious disease such as cancer is one of a parent’s worst fears. When it happens, among the first questions from parents is “Will my other children get cancer?” In the past, the answer was vague. “With the information we had, we could only say ‘We don’t think your other children are at increased risk,’” says Joshua Schiffman, MD. “Now we can give an evidence-based answer.”

Schiffman, who is medical director of Huntsman Cancer Institute’s (HCI) High Risk Pediatric Cancer Clinic and a pediatric hematologist/oncologist in the Department of Pediatrics at the University of Utah, led a study that looked deeper into the relationship between childhood cancer and familial risk. The study was published online in the International Journal of Cancer in November 2013.

Researchers found that when children were diagnosed with any kind of cancer at age 18 or younger, the risk to their siblings or their future children for childhood cancer doubled compared to families with no childhood cancer diagnoses. If the cancer diagnosis came when the child was age four or less, the risk to close relatives for childhood cancer increased to almost four times.

To find these results, Schiffman and his team examined the family medical history of 4,482 children diagnosed with cancer over a 43-year period. The Utah Population Database (UPDB) was a critical tool to access this vast range of information. The unique resource—located at HCI—links genealogies and cancer data from Utah to medical records and vital records, including Utah death certificates.

“Because our data came from the UPDB, the assessment of family history in our study does not rely on self- or family-reported medical history,” said lead author Karen Curtin, PhD, a genetic epidemiologist and UPDB associate director. “Self-reporting of family medical history depends on a person’s memory. Our data comes from the statewide Utah Cancer Registry, which records nearly all cancer cases.” Using the Utah Cancer Registry avoids errors that can result from someone trying to personally recall their family cancer history.

While analyzing UPDB records, researchers also recognized a genetic syndrome called Li-Fraumeni Syndrome (LFS) in families with a history of childhood cancer. “LFS is one of the most devastating disorders, causing a variety of cancers in children and adults,” says Schiffman, “People with the syndrome have an 80 to 90% lifetime risk of getting cancer, often at a very young age.” The disorder seemed to be behind the increased risk to relatives in these families.

The good news for families with LFS is that if they increase cancer surveillance and screen for early tumors on a regular basis, their survival rates skyrocket (“even approaching 100%,” says Schiffman). Without early screening, the cancer survival rates are closer to 20%.

“I hope these findings will emphasize that childhood cancers do have a hereditary component and will encourage taking family history into account as part of routine care,” says Wendy Kohlmann, MS, CGC, director of HCI’s Genetic Counseling service. “When a child is diagnosed with cancer, there are many questions and many urgent things being addressed. Family history isn’t always thought of as a pressing issue.”

As a result of the findings, HCI’s medical experts recommend the following:

  • Three generations of family medical history be collected for all children with a new cancer diagnosis
  • Families with a history of early-onset cancer in children or adults be referred for genetic counseling
  • Parents who have a child diagnosed with cancer before age five and a family history of cancer should be counseled so they are aware of a potential increased risk of cancer for other children in their family

“For families with previously unidentified LFS, these recommendations could save the lives of multiple family members if at-risk individuals are identified and early cancer surveillance programs implemented,” Schiffman says.

The findings of this study are a call to action for parents of kids with cancer. With knowledge of family cancer history and possible genetic testing, they can answer the question of their other children’s cancer risk. With this answer, they have the power to help identify early tumors and prevent morbidity from childhood cancer.

Learn more about childhood cancer research and family cancer risk:

Family Cancer Assessment Clinic

Genetic Counseling

Joshua Schiffman Lab