Key Messages:

• Although parents want to protect their child from fear and other difficult feelings, experts agree that even children as young as three or four years old should be told the truth about their cancer.
  
  
• The amount of information and details about the cancer that you share with your child will depend on his or her age and what you think he or she can understand.
  
  
• Try to keep the lines of communication open, as you will likely need to have several conversations with your child throughout the treatment process.

For most parents, few things are as frightening as being told that your child has cancer. At a time when parents are dealing with their own fears and confusion, they must also face the responsibility of helping their child understand his or her cancer.

Whether to tell your child he or she has cancer

Many parents think they can protect their child by not telling him or her about the cancer diagnosis. However, experts agree that even children as young as three or four years old should be told the truth. Most children already know that something is wrong. They may not be feeling well or may wonder about frequent visits to the doctor or hospital.

Children who are not told about their cancer often imagine things that are worse than the truth. They may think their illness is a punishment for bad behavior or that they did something to make themselves sick. Older children who find out they have cancer from a doctor or nurse may be upset that a parent did not tell them about the cancer.

Not knowing what is wrong or what to expect may cause your child excessive anxiety and fear. If you are open and honest with your child in the beginning, he or she will be better able to maintain trust throughout the course of the cancer and treatment. In addition to experiencing less stress and guilt, children who know the truth are more likely to cooperate with treatment. Do what is best for your family, but try to keep the lines of communication about the cancer and your feelings about cancer open.

What to tell your child

What you tell your child will depend on both his or her age and what you think he or she is capable of understanding. The following information briefly describes what children of different ages are likely to understand at each stage of development:

Infants to two year olds

• Cannot understand cancer
  
  
• Are most afraid of being separated from their parents and of medical procedures they cannot understand
  
  
• Need to be reassured that you will not abandon them at the hospital
  
  
• Although young children have no way of anticipating or understanding a procedure or trip to the hospital far in advance, they still should be told of upcoming events in simple, clear, and reassuring language

Two to seven year olds

• Look for a specific cause for their cancer, such as something they did or thought
  
  
• Need to be reassured that they did not cause their cancer
  
  
• Need reassurance that you will not abandon them
  
  
• Are afraid of pain and of being hurt. Be honest with them about tests and procedures that may hurt, but also explain that the treatment is being done to help make them better. You may also explain that doctors have ways of making the pain go away.
  
  
• Understand cancer explained in simple terms

Seven to 12 year olds

• Are less likely to believe that their cancer was caused by something they did
  
  
• Are more likely to understand that they will need to take medicine and undergo other treatments to get better
  
  
• Are afraid of pain and of being hurt; therefore, be honest with them about tests, treatments, and pain control
  
  
• Are capable of understanding a more detailed explanation of cancer

Teenagers

• Are most likely to think about their cancer in terms of its symptoms and its effects on their daily activities, such as school, sports, and relationships with friends
  
  
• Are capable of understanding the relationship between their symptoms and cancer and the role of treatment
  
  
• Can understand a complex explanation of the cancer and may have many detailed questions. They may be interested in learning more about their diagnosis.
  
  
• May want to be involved in making decisions about their treatment
  
  
• Have a unique set of concerns surrounding their physical appearance and their ability to fit in with others. They may be concerned about losing their hair and gaining or losing a lot of weight. Talk honestly with them about the possibility of other side effects.

Points to remember when talking to your child about his or her cancer

• Practice what you are going to say beforehand and ask for advice from your child's doctor, nurse, social worker, or another parent who has been in a similar situation.
  
  
• When you first talk with your child, consider asking another person to be with you. This might be another family member who can provide emotional support, or a doctor or nurse who can help describe cancer in detail.
  
  
• A single conversation with your child probably won't be enough. Have frequent, brief conversations with your child to keep the lines of communication open.
  
  
• Be open and honest and encourage your child to ask questions. Questions should be answered honestly, even if this means you don't know the answer and need to follow up later.
  
  
• Share your feelings with your child and encourage them to share too. You are your child's most important source of information and support. If they think they can't share their feelings with you, they may think they can't share them with anyone and, therefore, may feel completely alone.
  
  
• Explain the meaning of cancer-related words your child may encounter at the doctor's office or hospital. For example, an x-ray is "a picture of the inside of your body," chemotherapy is "special medicine to get rid of the cancer," a tumor is "a lump inside your body." Learn more about basic oncology terms.
  
  
• Talk with your child about the treatments they will need and what will happen during the each treatment. Be honest about possible pain and other side effects. For more information, read more about preparing your child for medical procedures.
  
  
• Seek support for both you and your child. Sources of support include hospital social workers, support groups, individual and family counseling, and religious or spiritual resources.

A special note on talking to your child about death

Fortunately, childhood cancers are relatively rare, and the overall five-year relative survival rate (the percentage of patients who survive at least five years after the cancer is detected, excluding those who die from other diseases) of children with cancer is 80%. Unfortunately, not every child will recover from cancer and some parents are faced with the task of helping their child prepare for death. Each family has its own beliefs about death, and discussions should reflect these beliefs. Children also need to know that they will not be alone. Read more about caring for a terminally ill child.

More Information

Cancer in Children

Cancer in Teenagers

ASCO Expert Corner: Talking With Your Child About His or Her Cancer

ASCO Expert Corner: Returning to School After Cancer

Additional Resources

Leukemia Lymphoma Society publication: Emotional Aspects of Childhood Leukemia: Addressing Concerns about the Possibility of Death and If Death Must Come

National Cancer Institute publication: Young People with Cancer: A Handbook for Parents: When the Cancer Cannot Be Cured