Talking about the diagnosis

It is natural for children to have a range of reactions to the news of a cancer diagnosis.

Crying – If your children cry, let them know it’s okay to do so and it’s a natural reaction. Holding them will help them feel secure.

Fear of the cancer – Some children will become fearful and worry endlessly. It can be hurtful if they start to fear the person who has cancer. Explain that the person with cancer is still the same person, despite having bad cells in their body and possibly looking a bit different. Try to connect this to changes the child can relate to – a sick pet that got better or a tree that changes colour during the year.

Fear of abandonment –Children may also fear that they’re going to be abandoned by their sick parent or by their well parent. Reassure them that they will always be cared for. Help your child deal with their concerns by giving them a chance to talk about their fears.

Anger – It is natural for children to feel angry about the diagnosis as it means their lives could be disrupted. Older children may seem angry and uncooperative if asked to help out more. Younger children may be annoyed if asked to play quietly. Both may be upset if a planned outing has to be postponed or cancelled.

No reaction – Sometimes children will appear not to have heard the news or do not react. You may be confused or hurt by this, especially if it took some courage to talk. A lack of reaction isn’t unusual – often the children are protecting themselves and need some time to digest the information. Remind them that they can talk to you about it anytime. You may need to talk again if the situation or their behaviour has changed since you first told them.

Your child may have a friend or cousin who has been diagnosed with cancer. While children often have some exposure to cancer, usually it’s an adult in their life who is affected (e.g. a grandparent or teacher). It can be confusing and frightening for a child to learn that children can have cancer too.

Causes of cancer – Let your child know that childhood cancers are not lifestyle-related (e.g. caused by sun exposure or smoking), nor does a child get cancer because of naughty behaviour or a minor accident like a bump on the head. There’s nothing anyone did to cause the cancer.

It’s not contagious – Children need to feel safe around the child with cancer. Tell them that cancer can’t be passed on to other people. If the sick child is in isolation, this is to protect the child from infection, not to protect everyone else from the cancer.

Most children get better – Like adults, children may worry that cancer means their friend will die. Although cancer is a serious, life-threatening illness, the overall survival rate for children is now more than 80%. This can vary depending on the diagnosis, but most children will survive cancer.

Things will change – Explain that things will change for the friend. They may not have as much energy to play or may be away from school a lot.
They may have physical changes (e.g. hair loss, wheelchair). Ask your child to focus on what hasn’t changed – their friend’s personality and their friendship.

Maintain the relationship – Give your child the opportunity to maintain their friendship with the child with cancer. They may not see each other as often and might not interact in the same way, but both children will benefit.

Visit the hospital – Take your child to visit their friend in hospital if you can. It is confusing and daunting for your child if the person with cancer disappears from their life after diagnosis. They may imagine the worst.

Keep in touch – Help your child keep in contact with their friend. You could make a get well card, write a letter, make a decoration for their hospital room or design a board game. Older children may prefer to communicate by phone, email or social media.

Encourage feelings – Allow your child the opportunity to have fears and grieve. They need to feel that they can approach you when they want to discuss what they’re going through.

The siblings of children with cancer sometimes feel forgotten in the midst of a diagnosis. The parental attention at home is suddenly shifted, daily routines are disrupted, and family roles and responsibilities change.

Along with feelings of sadness, fear and anxiety, siblings may be struggling with more complicated emotions such as guilt, jealousy, resentment and anger. Because so much focus is on their brother or sister, they may feel that their needs do not deserve to be met and that they have no right to complain.

For many children and teenagers, fitting in with their peers is very important. This means they may feel embarrassed or self-conscious about their family now being different to other families. Some may be reluctant to tell their friends and teachers about the situation at home.

You can help your child adjust to the changes in your family by talking openly and honestly. The tips listed in When another child has cancer will help, but your child may also be reassured to know the following:

It’s not their fault – Check that siblings realise that they did not cause their brother or sister’s cancer – even if they had been fighting with them or thinking mean thoughts about them.

What their role is – Explain that they have a role to play in supporting their brother or sister, and let them think about how they would like to do that. The sibling relationship is still important, so try to offer plenty of opportunities to maintain it. This may involve regular visits to the hospital and/or regular contact via phone, email or social media.

It is okay to have fun – Even though the child with cancer has to have a lot of attention at the moment, their siblings are still kids and their needs matter too. As far as possible, they should keep doing their own activities and have time for fun.

They are still just as loved – Explain to siblings that you may need to spend a lot of time and energy focused on the child with cancer, but this is out of necessity rather than feeling any less love for your other children. Naming the challenges and acknowledging the impact can really help.

They will always be looked after – Let them know that you will make sure someone is always there to look after them. Talk to them about who they would like that person to be if you can’t be there yourself.

Families often describe the days and weeks after their child’s cancer diagnosis as a whirlwind. Among the many confronting decisions they face is how to talk to the child about the illness.

Children with cancer tend to feel more secure when the adults around them are open and honest – hiding the truth to protect a child may just lead to greater anxiety.

What to explain – How much information you provide will depend on the age, maturity and attitude of your child. Keep your initial explanations simple and take your cue from the child as to whether they want to know more. Remember that the first conversation will be followed by many others, so you will have the opportunity to give more detail as the need arises.

Support from hospital staff – The clinical nurse consultant and social worker at your child’s hospital will be able to provide further guidance and assist you with these discussions. Some hospitals also have child life therapists who teach children strategies to manage their illness and can help you explain the cancer and the treatment.

Support for the family – Remember that your child’s hospital team is there to support the family as well. The social worker can let you know what support services are available, particularly if you need to travel long distances for treatment.

Older children – If you have an older child with cancer, make contact with one of the Youth Cancer Services. These are hospital-based services that offer specialised treatment and support to young people aged 15–25. 

Reliable information – As much as possible, include your child in discussions about their treatment and recovery. Older children and teenagers may want to seek out information themselves. You can point them in the direction of reliable, age-appropriate resources such as the information from CanTeen. Redkite also offers support to young people with cancer and their families.

Many parents or carers wonder if they should tell the school. If things are tough at home, school can be a place where kids can be themselves with their friends and carry on life as normal.

When the school is aware of the situation at home, staff will be more understanding of behaviour changes and can provide support. In fact, school staff are often the first to notice shifts in a child’s behaviour that may indicate distress.

A cancer diagnosis in the family can also affect academic performance, so the student may be entitled to special provisions, which can be particularly important in the final years of high school.

Here are some ways to involve the school that you may like to consider:

Talk to key staff members – Tell the principal, the school counsellor and your child’s teachers. They may know of other people in the school community who have or have had cancer and this may affect your child’s perception of the illness (e.g. a parent or a child at the school may have died of cancer).

Aim for a consistent message – Let relevant staff know what your child has been told about the cancer and what they understand cancer to mean so they can respond consistently.

Ask staff to monitor the situation – Ask the school to keep an eye on your child and to let you know of any changes in behaviour or academic performance. Ideally, a particular staff member, such as the class teacher, student wellbeing coordinator or year adviser, can provide a regular point of contact with the student.

Request that teachers don’t probe – Some well-meaning members of staff might misinterpret your kid’s behaviour and unintentionally make them feel uncomfortable (e.g. the teacher may ask if they’re okay when they’re happily sitting on their own).

Remember the school counsellor – If you feel concerned about how your child is coping, talk to the principal about your child seeing the school counsellor.

Check how other kids are reacting – Sometimes other children can be thoughtless in their comments. Check with the teachers and your child to see how other children are reacting so that negative behaviour can be addressed appropriately.

Get help from another parent – Ask a parent of one of your child’s friends to help you keep track of school notes, excursions, homework and events. When life is disrupted at home, children may feel doubly hurt if they miss out on something at school because a note goes missing.

Mention Camp Quality’s puppet shows – Ask the principal whether the school could organise for the Camp Quality Education Program to visit. Camp Quality has developed an educational puppet show to help children learn about cancer in a safe, age-appropriate way.

Ask about special provisions – Explore what special provisions might be available for exams or admission into university.

Read Cancer in the School Community – Cancer Council’s information for school staff offers more ideas for how the school can help when a student, parent or another family member has cancer. If your child has cancer, you might also be interested in What about school? A resource for parents of children, adolescents and young adults with cancer, which is produced by Ronald McDonald Learning Program.