Talking about the diagnosis

You might be unsure of the best time to tell your children; often there may be no right time. You may wonder if you should tell them soon after you’ve been told yourself, or wait until you have all the facts.

It may be hard for you to decide how much information to reveal, particularly if you are waiting on test results. However, keeping a secret can be stressful, and your children will probably sense that something is wrong.

Try to tell the kids as soon as you feel able. If you don’t know how serious things are or what treatment is required, say so. Assure your children that as soon as you know more details you will tell them. For example, “Daddy is in hospital to have some tests. We’re not sure yet what’s wrong, but when we do know we will tell you.”

It’s also a good idea to tell children if:

• you think they may have overheard a conversation
• they are scared by adults crying
• they are shocked or confused by physical or emotional changes in the person who has cancer, especially if the person has symptoms such as frequent vomiting, weight loss or hair loss or is admitted to hospital for immediate treatment
• you observe changes in your child’s behaviour.

It can be helpful to approach the conversation as a process and not a single chat. Imagine opening the door to conversation and questions, rather than having all the answers. This lets children and young people know that the topic is open for discussion.

You will know the best place and time for your children to hear important family news. Try to find some time when you won’t be interrupted or have to rush off without answering questions.

It can be intimidating to sit the family down for a formal discussion. Many people find that bringing up the subject casually while doing something else – like walking the dog or washing dishes – can help reduce the tension.

Talking to children before bedtime or before an important event may not be a good idea. Ideally, you should tell them at a time and in a place where they are most likely to listen and take it in.

– James, aged 12

Should I tell them together?

Depending on the ages and temperaments of your children, you may decide to tell them individually or together. They may need to know different things because of their age or developmental stage.

If you do decide to tell siblings separately, try to tell them on the same day. Asking older children to keep the diagnosis a secret from younger siblings can add to their stress.

Who should tell my children?

Choosing the person who tells is another thing to consider. In general, it is easier if the information comes from someone who is close to your child. Ideally, that will be the parent who has cancer, or the other parent or both of you together. However, this is not always possible.

An adult familiar to your child, such as a grandparent, aunt or uncle or friend, may be able to tell your kids or be there when you tell them. This may be particularly important if you are a single parent. You may also decide to break the news with the support of a doctor, nurse or social worker.

Parents often doubt their ability to find the right words and to answer the tricky questions their children ask. Take the time to consider how to approach the subject:

• Role-playing the conversation with your partner, friend, relative or the oncology social worker at the hospital can help you. It means you’ve spoken the words and perhaps dealt with some of the anxiety attached to those words before you talk with your kids.
• You can also practise in front of a mirror. This helps set the words in your mind.
• Even if you plan what to say and you think you know how your kids will respond, be prepared to answer questions. You may not have all the answers, but it’s okay to say you don’t know or that you’ll find out.
• Work out beforehand how you might bring the conversation to a close. You might want to plan an activity, such as playing a game or going to the park, to help your children settle again.
• Also plan to let your children know that they can take some time to think about things and talk more about it later that day, or at any stage in the future as they develop questions or concerns.

If you end up blurting out the bad news or your child reacts differently to how you expected, don’t worry. You have many conversations ahead of you, and your children are unlikely to be affected by one discussion that doesn’t go exactly to plan.

Looking after yourself

Telling children and young people about a cancer diagnosis can be confronting and difficult. You may have trouble helping your kids deal with the news if you’re struggling yourself. You may be facing both emotional and physical challenges and you will have to make many decisions, but you don’t have to do this alone.

• Don’t attempt the conversation while you’re in shock and feeling overwhelmed by your own feelings.
• Talk to a few trusted adults beforehand – this will allow you to articulate your own feelings and start getting used to the news yourself.
• Write a list of things that other people can do for you. Family and friends are often keen to help out, but usually need guidance on what to do.
• Ask a friend to coordinate offers of help.

See Involving others for more information about getting support from your existing network. There are also many support services for people who are newly diagnosed with cancer.

The following checklist is a guide to the kinds of information you might discuss in your initial conversations about cancer. The suggestions in Diagnosis questions and answers can help you tailor the information according to the ages and reactions of your children.

1. Tell them the basics in words they can understand

You can break the news with a few short sentences explaining what you know so far and what will happen next.

Be clear about the name of the cancer, the part of the body that has the cancer and how it will be treated. To help explain cancer terms, you can:

• use Cancer words for kids 
• get hints from websites
• read books about cancer written for children
• show them Camp Quality’s Kids’ Guide to Cancer app (for children aged 8–13).

Try not to overwhelm children with too much information. You can always give them more detailed information later if they are interested.

2. Find out what they already know

Ask your children what they know about cancer and then deal with any misinformation or myths (e.g. they might think that you can catch cancer, or that their naughty behaviour caused the cancer). Children get information from various sources, such as school, TV programs and the internet, and they may have their own ideas of what having cancer means.

Don’t assume children will have the same fears as you. Ask them what they want to know, and only answer questions that they ask.

Give small bits of information at a time. You may need to keep repeating the information to ensure they understand what you have told them. Accept that they may ask the same question several times.

3. Be honest and open

Let them know if you don’t know the answer to a question. Say you’ll try to find out the answer from the doctor and let them know as soon as possible. Make sure you follow this through.

4. Tell them what to expect

Your children may want to know what treatment will mean for them. If you are in hospital, who will drop them to school, make them dinner, take them to after-school activities? Reassure them there will be a plan and that you will let them know about it.

5. Ask them if they want to tell anyone

Your children may also want to tell their friends, all the teachers, the whole class – or nobody else.

Explain that there will be a few people you will need to tell, such as their main teacher, the student wellbeing coordinator and the school principal. You might also want to mention other key figures in their life, such as a music tutor or sports coach. Discuss the best way to handle these conversations. See Involving the school or preschool for more information.

6. Balance hope with reality

Tell kids that although cancer can be serious and going through treatment can be hard, most people get better. Explain that with the expert support of the doctor and treatment teams, you (or the person with cancer) are going to do everything possible to get well.

7. Offer a listening ear

Your children may say very little and not ask questions when you first tell them. Some kids need time to absorb the information, but it doesn’t mean they don’t understand. Let them know they can come back to you at any time with questions, worries and scary feelings.

8. Don’t make promises you can’t keep

If there’s a chance you can’t keep a promise, it’s best not to make it. Rather than saying, “I’ll definitely be at the swimming carnival”, say something like, “I hope I can come to the carnival, but if I can’t, it’ll be great to see the photos. Maybe we can get someone to film your races.”

9. Show your love and emotion

Tell your children that you love them, and assure them they will always be looked after. Express your love by hugging them, comforting them and making them feel valuable.

Try not to overwhelm or frighten children by your reactions, but it’s alright to cry – this gives kids the message that it’s okay to show feelings. Being honest with each other about fears and feelings can positively affect your relationship with your children and help your children’s wellbeing and ability to cope.

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.

You don’t have to tackle the task of talking to children about cancer on your own. There are many ways to lessen the burden and to ensure kids hear a consistent message from people who are involved in their lives.

– Mira, mother of two children aged 3 and 12

Tell key adults – Share the diagnosis with other people who talk with your kids (grandparents, friends, the nanny, babysitters) and tell them what you plan to say to your children so that you all communicate the same message.

Talk to other people who have cancer – Often the best support and ideas come from people who’ve already been there. You’ll realise you’re not alone and you can ask them how they handled things.

Ask a professional – Get some tips from the oncology social worker, psychologist or other health professionals at the hospital.

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.