When Michelle Partin of Carlton, Oregon, was diagnosed with breast cancer in 2017, she sat her 9-year-old son down to tell him the news. She explained that she had a tumor in her breast and would need a bilateral mastectomy to remove it. Plus, she was going to have chemotherapy and would likely lose all her hair.
"I was upfront with him," she tells HealthCentral. "There were tears — lots of them. But I feel it is so much better to be honest. I would hate to lose his trust and have him doubt what I say in the future."
Her son pondered the facts for a few minutes and then turned it into a scenario he could understand: "So basically the cancer is like enemy soldiers," he told her. "You are destroying their base (the tumor) and the medicine will seek out and destroy any soldiers that escaped and are scouting for a location to establish a new base."
He got it. "His insight was unbelievable," she says proudly.
A cancer diagnosis affects the whole family. One of the first things many parents worry about upon learning they have the disease is whether they should tell their children, how much to tell them, and how they will cope with the news.
Like Partin's son, children are "amazingly perceptive," says Jim Higley, spokesman for Camp Kesem, a nationwide community that supports children through and beyond their parent's cancer. It also offers free week-long summer camp in 40 states to thousands of children with parents who have cancer.
"If you don't tell them, they will pick up that something is going on and think the worst," Higley says.
Camp Kesem has joined forces with the Parenting at a Challenging Time (PACT) Program at Massachusetts General Hospital Cancer Center to bring attention to the needs of the 5 million children in the U.S. who are impacted by a parent's cancer. Their goal is to give parents and educators the tools and resources they need to talk to their children about cancer. As a result of their efforts, January 2018 was designated as the first annual Children Impacted by a Parent's Cancer Month.
Tips to help open the conversation with your kids
Before starting the conversation, parents need to prepare what they are going to say and how to best do so. Then, taking into consideration the individual child, their temperament, age, and how they react to challenges, "explain it in an honest, factual, and age-appropriate manner," says Higley.
Camp Kesem offers these other tips:
- Begin by identifying your illness. Call it "breast cancer" or a "brain tumor," and don't use euphemisms like "lump" or "boo-boo."
- Remind your child that cancer is not caused by anything he or she did.
- Try to tease out the "real" questions your child wants to ask. Inquire about what your child is worrying about or if there is something else he or she wants to know. For example, a child who asks, "Will you be all better by summertime?" might not be looking for a guarantee of a cure, but simply want to know if they'll be able to take swim lessons.
- Reassure your child that you are there to listen to any questions or concerns.
Children are very resilient, says Paula K. Rauch, M.D., founding director of the PACT Program. "With good support, children do extremely well."
It's important to remain open to discussion and questions "and field them as they come," she says. "The more confident the parent is about how to talk to their child, the better those conversations will go."
These conversations — about diagnosis, treatment, and how life will change — are ongoing.
"Sometimes it's daily," says Partin. "Knowing what comes next in the process helped my son feel somewhat in control of the situation."
Breast cancer survivor Vicki Tripp of Edmonton, Canada, agrees.
"I tried to hold off using the term 'cancer' at first so that wasn't all my sons would hear," she says of the 11- and 13-year-olds. "But the oldest guessed right away. I promised I would always be honest, would update them every step and no questions were off limits."
With older children, Tripp suggests, you should also "address the elephant in the room."
"I said, 'Now you're probably wondering if I'm going to die from this'… and there was total head nodding. I told them I couldn't promise that I wouldn't die, but I promised that I would do anything and everything in my power to ensure that doesn't happen," she says. "They need to trust that you won't hide anything from them. So, I tell them when all my appointments are and any new information. I think that's made all the difference."
The bottom line, says Higley of Camp Kesem, is to "open the door for kids to ask any question that they have. Commit yourself to creating a safe and respectful environment for your child to talk about their feelings. And be sure to really listen."
See below for more resources to help you start the conversation.
Resources for parents
Books for children
Support groups for children