Telling kids about breast cancer genetic testing

Angelina Jolie says after her preventive
mastectomy, she can tell her children
they don't need to fear losing her to
breast cancer.
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.”