Telling kids about breast cancer genetic testing

When Angelina Jolie announced she had undergone a preventive double mastectomy, people asked why. The actress explained that she carried a mutation in a gene known as BRCA1 that increased her chances of developing breast and ovarian cancer.

Her operation opened the nation’s eyes to just how important it is to know about hereditary cancer. According to a new study, a majority of mothers who get genetic testing talk to their children about it, especially if these women get the good news that they don't have the gene mutations.

The research, conducted at Georgetown's Lombardi Comprehensive Cancer Center in Washington, found that most mothers who were considering genetic testing for the BRCA1 or BRCA2 gene mutations already were thinking of talking with their children, especially if they had a family history of breast and ovarian cancer. They also noted that moms who did not discuss their test results with their children were more likely to regret that decision later on.

The study, published online Wednesday in the journal Cancer Epidemiology, Biomarkers & Prevention, looked at 221 mothers of children ages 8 to 21 who were enrolled in a parent communication study at one of three major cancer centers: Georgetown Lombardi, Mount Sinai cancer center in New York and Dana-Farber Cancer Institute in Boston. The women completed questionnaires before they had their genetic testing and one month after receiving their results.

"We know from women we've counseled at Georgetown that one of their main considerations of genetic testing for cancer risk is what the results will mean for their children," says the study's lead author, Kenneth Tercyak, director of behavioral prevention research at Georgetown Lombardi.

Women tend to reach decisions about when and how to share the news of their genetic tests with their children right after they learn the results, he says.

According to the American Cancer Society, the most common hereditary cause of breast cancer is an inherited mutation in the BRCA1 and BRCA2 genes. The risk may be as high as 80% for members of some families with BRCA mutations. These cancers tend to occur in younger women and more often affect both breasts, compared with cancers in women who are not born with one of these gene mutations.

In an article written by Jolie for The New York Times, she talked about the importance of telling her children, without scaring them.

"My chances of developing breast cancer have dropped from 87% to under 5%," wrote Jolie. "I can tell my children that they don’t need to fear they will lose me to breast cancer. "

"We found that more than half of mothers disclosed their genetic test results to their children, especially if the children were teenagers," Tercyak says. "Parents say sharing the information is often a relief and that it's part of their duty as parents to convey it."

By looking at the research data, the Lombardi team has developed guidelines to help parents talk with their children about hereditary cancer risk and prevention.

"It's written in lay language for patients – a step-by-step decision guide on how women, even men, can approach this subject with their children," says Tercyak. "We know these conversations are happening and people wonder how to go about it. It's a new area of parenting. It's a brave new topic and we want to help make it easier for parents and their kids."