Mom topics

Should moms tell kids about cancer gene test results?

July 3, 2013 at 12:33 AM ET

When her mother, grandmother and other relatives all around Susan Davis were being diagnosed with breast or ovarian cancer, she just thought her family had a streak of bad luck.

It wasn’t until Davis was diagnosed herself 10 years ago that she began to suspect a genetic link. A test confirmed what she had feared: she was carrying the BRCA1 mutation, sharply increasing her risk for breast and ovarian cancer.

Her next step: telling her kids, who were 19 and 23 at the time. Children who have a parent with the BRCA1 or BRCA2 mutation have a 50 percent chance of inheriting it.

Susan Davis
Courtesy Susan Davis
Jennifer Davis, left, decided to undergo genetic testing after her mom Susan Davis, right, found out she was carrying the BRCA1 mutation.

“I was very concerned about my children and the thought that I may have passed this mutation onto them. I wanted to give them all of the protection I could -- as a mother, that's my job,” said Davis, 59, a breast cancer survivor who lives in Washington.

“I chose to deliver that information to them in a calm way so that… they would be able to make a decision about what they wanted to do.”

It can be a difficult conversation, but mothers commonly talk to their children about cancer genetic test results even if they test positive for the BRCA1 or BRCA2 gene mutation, according to a new study from the Georgetown Lombardi Comprehensive Cancer Center.

The test has received a lot of attention since Angelina Jolie revealed in May that she had a preventive double mastectomy after finding out she carries the BRCA1 gene.

In the study, researchers followed 221 women -- all moms of kids 8 to 21 years old -- who underwent the genetic testing. Of those patients, 62 percent reported disclosing the BRCA1/2 test results to their children. Teenagers and young adults were more likely to find out the outcome than small kids, researchers found.

“It's not an easy choice to expose your children potentially to this information about cancer running in the family,” said Kenneth Tercyak, the lead author of the study and director of behavioral prevention research at Georgetown Lombardi.

“It might make (parents) nervous, it might make them worried. On the flip side, it may also open the lines of communication in the family about cancer.”

Researchers also found that mothers who did not discuss their test results with their kids were unsatisfied with their decision.

When deciding whether to tell your children, Tercyak advised to get input from your doctor about when and how to share. He urged parents to think about what they want to say before having the conversation and consider whether their kids are old enough to handle the news.

“We emphasize knowing your child, taking this from their perspective - how might they feel about learning this information?” he said.

“Would they understand it or is this something that might scare them?”

Parents may begin to tackle the issue with their child by first talking about mom’s risk of developing cancer and then exploring that issue further, Tercyak advised.

Teenagers may have a better grasp of the situation than younger kids, he added.

After Davis told her children, they underwent genetic testing and both found out she had passed the mutation on to them.

Her daughter Jennifer Davis, who is now 28, said she was thankful her mother was frank and shed light on the possible time bomb lurking within her body. After two scares with breast lumps, she decided to take action.

Like Jolie, Jennifer Davis had a prophylactic bilateral mastectomy – a procedure in which surgeons remove the breasts to prevent or reduce the risk of breast cancer in women with a family history of the disease.

“I want to be around for when I have children and when I have grandchildren and I felt like that was my best bet to have a long life,” she said.

NBC's Erika Edwards contributed to this report.