Helping Your Child Adjust to a Cancer Diagnosis

When a child is told they have cancer, their life changes overnight. Instead of going to school, hanging out with friends, and just being a kid, they have to deal with hospital visits, tests, medicines, and sometimes surgery or other treatments. This can be scary and stressful for the whole family.

Your role as a parent or caregiver

You know your child better than anyone else. While the cancer care team members are experts in treating cancer, you are an essential part of your child’s support system. Together with the cancer care team, you can help your child during the challenging weeks after their diagnosis. The information here will guide you on how to share age-appropriate information with your child, create routines, and recognize signs that your child might need extra help.

Talking to a child about their cancer

Sometimes, it might feel easier to shield your child from the truth about cancer. But most kids will pick up on what’s happening when they’re feeling unwell, having tests, or seeing adults talking quietly. It’s better to provide them with honest and age-appropriate information from the beginning. This builds trust and helps them cope.

Here are some tips for talking about cancer based on your child’s age.

Infants and very young children (0-2 years)

Children don’t understand cancer and illness when they are this young, but they can pick up on changes in routines and negative emotions. They might:

• Fear being separated from parents
• Become upset during medical procedures
• Withdraw or cling to parents
• Miss developmental milestones
• Have stranger anxiety

Here are ways to help:

• Try to create new routines.
• Being close to their parents and caregivers reassures them.
• Reassure them if they’re afraid of strangers or medical staff.

Toddlers and preschoolers (3-5 years)

Toddlers and preschoolers may know the names of some illnesses, but not what it all means. At this age, children may:

• Express emotions through yelling, tantrums, or regressing
• Fear medical procedures
• Benefit from consistent routines
• Enjoy reward systems like sticker charts
• Ask a lot of questions

When talking to toddlers and preschoolers about cancer:

• Tell them the name of their cancer and simple facts about treatment.
• Their focus is often on symptoms they’re having at the time.
• Answer questions with examples or through play with dolls.
• Reassure them that they didn’t cause the cancer.
• Explain it’s not something they can catch or give to their siblings or friends.
• Ask follow-up questions to see what they understand and what might need more discussion.

School-age children with cancer (6-12 years)

At this age, children likely understand the seriousness of cancer, but often only from stories they’ve heard about grandparents, friends, or on TV. They may:

• Feel upset about disruptions to school and missing friends
• Show anger and sadness
• Worry about causing the cancer
• Worry that the cancer is contagious
• Seek emotional support from family and friends

Here are ways to support a school-age child with cancer:

• Ask them what they already know about cancer. Share the name of their cancer and how it’s treated.
• They might not want tests or procedures due to fear of pain. Reassure them but be honest if there’s a possibility of discomfort and why it’s important to do it.
• Discuss changes to school and daily activities.
• They might feel like the cancer is their fault, so reassure them that it’s not.
• They might ask the same question repeatedly.
• Be open to questions about changes in appearance.
• Address concerns about life and death.
• Encourage them to read or talk to other kids with cancer.
• Reading, playing, drawing, art, and music can help kids express or process emotions.
• Depending on treatment, you might need to make decisions about fertility preservation. Ask your child’s cancer care team for help in how to talk about this with your child.

Teenagers (13-18 years)

A cancer diagnosis during the teenage years can be especially challenging. This is already a time of change and self-discovery, and having cancer adds another layer of stress and uncertainty. Teenagers can handle more complex information about their cancer than younger children, but they may still struggle emotionally. Teenagers may:

• Get upset about the disruptions to their lives
• Have concerns about appearance changes
• Feel their independence is threatened
• Show intense emotions
• Question the meaning of life and their identity
• Engage in risky behaviors or rebel

How to help a teen with cancer:

• They might prefer hearing about diagnosis and treatment directly from the cancer care team.
• They may struggle to connect with peers who aren’t ill. If you can, help them connect with peers who have cancer. Sometimes social media can help decrease feelings of loneliness or sadness.
• Concerns about appearance, independence, and normal teenage activities are common.
• Involve them in treatment decisions.
• Offer support from social workers or psychologists.
• Art, dance, music, making videos, blogging, and writing can be helpful creative outlets.

Creating a new routine

Children and teens cope better when they see their loved ones managing stress well. Here are some ways to help them adjust in the first few weeks and beyond:

• Seek support from specialists like child life specialists, psychologists, and social workers.
• Maintain your parenting styles and expectations.
• Encourage open communication about feelings.
• Include playtime and distractions during hospital visits.
• Manage treatment side effects for their comfort.
• Plan their return to school and activities.
• Keep them connected with friends.
• Explore support therapies like pet, music, and art therapy.
• Check for school services during hospital stays.
• Look for cancer-related camp programs and support groups.
• Offer choices when appropriate.

Know when your child needs extra help

It’s normal and okay for kids to struggle with their cancer diagnosis and treatment. Keeping open and honest communication is one of the most important things you can do for your child’s mental well-being.

Some children might benefit from extra support. Your child may need more support if they:

• Feel sad or cry all the time
• Can't be comforted
• Become very irritable or angry
• Refuse treatment or medicines
• Refuse to go to appointments or the hospital
• Withdraw from family and friends
• Are unable to sleep
• Talk about suicide or hurting themselves
• Talk about passive suicide (wanting to die without a plan or hoping something will happen to cause their death)

Don’t ignore these signs. Tell your cancer care team about your concerns. Specialists like psychologists or social workers can work with your child to see what type of support might be best for them.

Remember, with support, most children with cancer can adjust and cope with their diagnosis. It’s crucial to stay connected, open, and seek help when needed.

If your child asks about death or dying

When you talk to kids and teens about their cancer diagnosis, they might ask if they’re going to die. Some might not ask directly. Some might be afraid to bring it up. It can be tempting to quickly say things like, “You’re going to be fine” or “Don’t worry about that.” While it’s difficult to answer this question, talking to your child about their diagnosis, death, or dying is important.

What do I say?

Older kids and teens are often familiar with cancer from personal experience or from what they’ve seen in movies and the news. They might remember a relative who died from cancer. Whatever their experience, it’s important to be honest and hopeful.

Here are some things you might say:

• Many kids with cancer get better. Most children with cancer do well with treatment because many people have worked hard to find better ways to treat it.
• Sometimes kids die from cancer, but we are not expecting that to happen to you. The doctors have told us they have good treatments for the kind of cancer you have. If anything changes, I promise to tell you the truth.
• Your cancer is tough to treat, but there are lots of things we can do to help you get better. We might not know for sure what will happen in the future, but we have lots of ways to make you feel better today and to make time for things you like to do. I’ll tell you if I find out anything new or different.
• If you’re worried about anything, please talk to me. We can figure things out together. It’s normal for us both to feel worried sometimes, but talking about it might help.
• What are your thoughts about death and dying? Let me know what questions you have, and I will do my best to answer them.

It’s okay to feel hesitant to talk to your child about death and dying. You might consider working with a counselor and pediatric palliative care services to help you have these conversations with your child. Ask your child’s cancer care team about having a child-life specialist involved in the conversation. They can help your child understand what’s going on and ease fears they may have. Remember that you don’t have to do this alone. There is support for you and your child.

Kids do better when they know about their cancer

Many studies have shown that children who were given information about their diagnosis and prognosis had less anxiety, depression, distress, and social problems compared to those who had information kept from them. Parents also reported that one of the benefits of talking about death with their child was that it reduced their child’s fears.

Kids often understand more than we think

Parents may unintentionally underestimate a child’s understanding of death. They rightfully want to protect their child from stress or worry. But this can make a child feel alone or that this is something shameful that we don’t talk about. Without these conversations, children will fill in the story in their heads, as we all do when we don’t have all the information. Talking to your child about this stuff isn’t easy, but it might do more harm not to talk about it.

If treatment isn’t working

If your child’s condition isn’t getting better with treatment or if cancer has come back, and they ask about dying, it’s a good idea to talk to your cancer care team.

Lean on your cancer care team

Remember, your cancer care team is here to support both you and your child. They can help you prepare for and work through these conversations if your child is worried about dying from cancer.