How to Talk to Your Child About Their Brain Tumor Diagnosis

What to keep in mind when talking with your child

The main goals of your first discussion are to help your child understand what's going on and to make sure they feel comfortable sharing their questions and fears with you. Here are some general guidelines:

• Use words they know. Choose age-appropriate words when describing what a brain tumor is and what your child can expect from tests and treatments. We've provided some ideas below on how to offer easy-to-understand explanations for different age groups.
• Be open and honest. When kids aren't sure what’s going on, they may imagine things to be worse than they are.
• Make room for questions and feelings. Encourage your child to ask as many questions as they want and to express their emotions. Let them know all their feelings are OK.
• Offer plenty of reassurance. Assure your child that the brain tumor isn’t their fault and doesn’t change who they are. Let your child know that they won’t be going through treatment alone – that you and other loved ones will be with them.
• Use open-ended questions. Ask whether there’s anything in particular that they’re worried or wondering about. You may also want to ask what they think or know about cancer. This can provide a chance to correct any misunderstandings, such as a belief that all people with cancer die from it.
• Keep the conversation going. Your child might not be receptive at first, but may come back later to share questions or worries. Or, they may need to hear things explained repeatedly. Let your child know that they can always come to you to talk and ask questions.

Some families set aside certain times to check in. Others find it easier to have these conversations while doing other things, such as during a car ride, chore or board game.

You may want to speak with your child alone or have someone else with you for support. Use your judgment as to which will work best for your family.

Explaining brain tumors to young children

Use clear, simple language when explaining brain tumors to a young child. For example:

• "A brain tumor is a lump in the brain that shouldn’t be there. The lump can keep your brain from working the way it's supposed to. That's why you have [symptoms caused by the tumor] and other things that shouldn't happen."
• "Nothing you did, thought, said or wished for made this happen."
• "Brain tumors aren't like colds. You can't catch a brain tumor from someone, and no one can catch a brain tumor from you."

To explain brain tumor treatments to a young child, consider these suggestions:

• "The doctor is going to do a surgery to take the lump out. This will help you feel better. The operation won't hurt, but you'll need to stay in the hospital for a while. I [or another family member] will be there with you every day."
  
  (If you can't be with your child throughout their hospital stay, tell them who will be with them and when you'll be back. Your child may need reassurance that you won't abandon them in the hospital.)
• "You'll get medicine called chemo that helps kill the bad cells. We'll go to the hospital every day [or week or other time period] to get it. It might make you feel tired or like you need to throw up. Also, your hair might fall out, but it will grow back."
• "You'll get radiation therapy, which helps kill the bad cells. You'll go to the hospital to get it from a machine there. It won't hurt, but you might feel tired or like you don’t want to eat."

If the doctor has talked to you about other potential side effects, such as memory loss or trouble with physical movement, explain these possibilities using the same simple language.

Explaining brain tumors to older children

Kids of elementary school age can often understand slightly more complicated explanations. You might say something like:

• "A brain tumor is a group of cells in your brain that's growing out of control. As the number of cells increases, the tumor gets bigger. This means it might start to press on part of your brain, which can make your brain not work as it should."

• "The doctor doesn’t know yet what changes the brain tumor might cause. The doctor will know more later, after you have [certain tests or treatments]."

You can also use some of the scripts above to talk about your child's treatment. Explain how the treatment will kill cancer cells but might have side effects.

Explaining brain tumors to teens

Most teenagers appreciate straight talk. Still, you know your teen best. Use your own judgment about what to say and how to describe the diagnosis. Teens can generally understand medical terms such as benign, malignant and prognosis, but be sure to ask whether they need an explanation.

Talk about the planned treatment and why it was chosen. Be open and available to your teenager, encouraging them to share their feelings and ask questions.

No matter your child's age, it’s important to help them understand what's going on and let them know they aren't going through this alone.

Getting help from a child life specialist

Your family may wish to connect with a certified child life specialist, who will use age-appropriate support, play and education to help your child understand what to expect from tests and treatments. Child life specialists can also help explain things to your child's siblings. Let the medical care team know if you're interested in working with a child life specialist.