Discussing Hereditary Cancer Risk With Children

Genetic risk for cancer is random. For people who carry specific mutations, such as BRCA1 or BRCA2, there is a 50/50 chance they will pass that gene onto a child. So, how does a person go on to tell their child they may be predisposed to a hereditary cancer? What words should be used? When is the best time to tell them?

Those answers are based on each family, since they are all different, said Karen Hurley, Ph.D., who specializes in hereditary cancer risk at Cleveland Clinic, during her presentation at the 11th annual Joining FORCEs Against Hereditary Cancer Conference held Oct. 19-20 in San Diego. “Some families don’t like to talk about feelings and some families have feelings that are kind of all over the place and they are comforting expressing them,” she said. “That’s going to cover how you’re going to approach this very emotional topic.”

Some reasons parents may not want to tell their children include the need to want to protect them, as well as feeling helpless and guilty. “Guilt is a normal response when we are faced with uncontrollable situations,” Hurley said.

But remaining silent about the family history may lead to isolation or children feeling betrayed that it was kept from them. It also denies them the opportunity to grow or rise to the occasion, especially older children, explained Hurley. “Parents sometimes underestimate the emotional capacity of their children to respond openly to the situation,” she said.

Before having the conversation, parents should “put on their oxygen mask,” Hurley advised. This means parents must acknowledge their own feelings of guilt, sadness, fear, anger and helplessness. Then, let those feelings pass — for some, that’s a week and others a month, Hurley noted. And, it’s important to build a support system of at least one other adult who a parent can say anything to without feeling judged.

Hurley presented five tips — from Massachusetts General Hospital’s Parenting at a Challenging Time — to consider when parents are ready to discuss hereditary cancer risk:

• don’t let a child overhear it
• listen for what the child already knows, then build on that
• use simple, age-appropriate language
• allow the child to tell them how much or how little they want to know
• see communication as a process, not a one-time event

“Mommy is going to the hospital because she has a boo-boo in her breast is going to be confusing to a child,” Hurley said. “The kid may say, ‘If I have a boo-boo am I going to have to go to the hospital?’ We forget that kids are not processing things in the same way.”

Maintaining the child’s routine, such as meals, sleep schedule and school, is important. It also benefits them to continue regular activities, such as sports and hobbies; keeping in contact with their peers; and giving them age-appropriate responsibilities.

“One of the best things you can do in helping a child process risk-related information is to keep it in perspective, so that the main event that is going on is keeping their normal development on track as much as possible,” said Hurley.

To prepare for the conversation, parents should ask themselves: What do I hope for or imagine as the outcome of the talk? What am I hoping for myself?

Parents should consider not only the age of a child, but also the maturity level. The average age of telling a child about a risk of a mutation in the family is 12 to 13 years old. “This is when the brain starts maturing,” Hurley said. “There is actually a change in the neurons.”

She added that there is no right or wrong answer whether to tell children together or separately, but rather base that on how close the family is and the age span.

“You can’t protect your child from all kinds of harm, but you can start to teach your child how to cope with challenge,” Hurley said. “You may not have control over whether your child has inherited the mutation, but you have a lot of control over what kind of parent you want to be and what you want to teach your children. And that is a powerful legacy to pass on.”