Talking about the diagnosis

When you first learn of a cancer diagnosis, you may feel shocked and overwhelmed. Among the many decisions you need to make will be when, where and how to talk to the children and young people in your life.

Try to think of this as a series of conversations that evolve over time, rather than a one-off discussion.

Key questions

Who should tell my children?

In most cases, it is easier if the information comes from someone who is close to your children. Ideally, that will be the parent who has cancer, with the support of a partner or other close family member.

However, this is not always possible. Another trusted adult close to your children, such as a grandparent, aunt, uncle or friend, may be able to tell them or be present when you tell them. This may be particularly important if you’re a single parent.

You may decide to share the news with the support of a member of your health care team, such as your general practitioner (GP) or hospital social worker.

When should I tell my children?

It’s common to feel unsure about the best time to tell your children. Often there is no right time. You may wonder if you should tell them soon after you’ve found out, or wait until you have more details about test results and treatment.

Although it is tempting to delay talking to your kids, try to tell them as soon as you feel you can. It’s also a good idea to tell children if:

• you think they may have overheard a conversation
• they are scared after seeing 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, hair loss, or is admitted to hospital for immediate treatment
• you notice changes in their behaviour.

It may be hard to know how much information to share, particularly if you are waiting on test results. Your children don’t need to hear everything all at once.

If you don’t know what treatment is needed, just say so – but also assure your children that as soon as you have more information, you will tell them.

For example, “Dad is in hospital having tests. We’re not sure what’s wrong, but we’ll tell you as soon as we know.”

Let children know it’s okay to have questions at any time, such as during treatment, and to talk about how they feel whenever they need.

Where should I tell my children?

Many people find that bringing up the topic of cancer while doing something else – like walking the dog or washing dishes – can help reduce the tension. This approach may be less intimidating than sitting down for a formal discussion.

Find a time when you won’t be interrupted and can answer all your children’s questions without rushing. Ideally, you should tell them when and where they feel able to listen and take in the news.

For example, you may have the discussion on a weekend, so kids have the time to process the information. It’s important you choose a place where children feel safe and comfortable to express emotions such as sadness or anger.

“The most important thing is honesty. Tell the truth, don’t sugar-coat, don’t be too over the top. Admit that it’s not going to be a walk in the park, but you’re not going to die tomorrow. The main thing is to be real.” Izzy, aged 15

Should I tell my kids together?

If you have more than one child, you may wonder whether you should tell them individually or together. This will depend on the ages and temperaments of your children. You may need to use different language because of their ages.

If you decide to tell them separately, try to tell them on the same day so no-one has to keep secrets.

How can I prepare?

Parents often doubt their ability to find the right words and to answer the questions their children may ask. It’s not a matter of “getting it right”, rather it’s doing the best that you can at a challenging time.

Take the time to plan what you’ll say. Be honest about how you are feeling – it can help children share their feelings too. You may find it helpful to say certain phrases out loud before talking to your children.

For example, you might practise saying “I have cancer” or “Grandma has cancer”. This 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 the conversation in front of a mirror. This helps set the words in your mind. Even if you practise what to say and you think you know how your kids will respond, be prepared for questions and a wide range of reactions.

Before talking to your children, think about how the conversation might end. You could organise an activity, such as playing a game or going to the park, to help your children settle again.

Older children may prefer some time alone, or you may suggest watching a TV show or movie together. Let your kids know that they can talk to you or another trusted adult any time they have questions or concerns.

The first conversation

The following is a guide to your initial conversation about cancer. The below for suggestions to help you adapt the information to the ages and reactions of your children.

Use words they can understand

Find out what they already know

It’s okay to say “I don’t know”

Tell them what to expect

Ask them if they want to tell anyone

“After Dad told us, the six of us sat around crying and hugging one another. Despite the sadness of the occasion, we actually had a pleasant dinner with lots of laughter. Our lives changed from that day.” Lily, aged 17

When things don’t go to plan

Offer realistic hope

Show your love and emotion

If your child is diagnosed

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

Although the focus of this page is children affected by someone else’s diagnosis, much of the advice will still be relevant.

Children with cancer tend to feel more secure when the adults around them are open – hiding the truth to protect a child may lead to greater anxiety. How much information you share with your child will depend on their age and maturity.

Keep your initial explanations simple and take your cue from your child as to whether they want to know more. The first conversation will be followed by many others, so you will have the opportunity to give more detail as the need arises.

Include your child in discussions about their treatment and encourage them to ask questions. Someone from the paediatric oncology team will be able to provide guidance and assist you with these discussions.

For younger children, many hospitals have therapists (called child life therapists) who teach children strategies to manage their illness and can help explain the diagnosis and treatment.

If you have a child with cancer, get in touch with Cancer Hub. Children and teenagers will respond to their cancer diagnosis in different ways. Fear, anger or sadness are all common reactions.

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

Some organisations have developed resources for parents of children diagnosed with cancer, including:

• Paediatric Integrated Cancer Service
• Cancer Australia

Older children and teenagers may want to seek out information themselves.

When a sibling has cancer

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

Along with sadness, fear and anxiety, siblings may struggle with more complex emotions such as guilt, jealousy, resentment and anger.

With so much focus on their brother or sister, they may feel that their needs do not deserve to be met and that they are not allowed to complain.

Many children take on caring roles, whether they are asked to or not. Some kids may feel self-conscious about their family being different from others. Some may be reluctant to tell their friends and teachers about the situation at home.

If cancer changes how their brother or sister looks, they may feel embarrassed and shy away from being seen with their sibling. You can help your children adjust to the changes in your family by talking openly.

The tips below will help, but your kids may also be reassured to know the following:

• It’s not their fault.
• They can support their brother or sister by visiting the hospital and having regular contact.
• It’s okay to have fun.
• Feeling cross is normal.
• They are loved and will always be looked after

“We wanted all the kids to feel involved with Leo’s treatment – we said, ‘You are part of the team, you are part of this.’ The hospital became part of our family life.” Genevieve, mother of four children aged 3, 5, 10 and 14

When another child has cancer

In most cases, children will first learn about cancer when an adult in their life has been affected (e.g. a grandparent, aunt or teacher).

So it can be confusing and frightening for them if a child (e.g. a friend, sibling or cousin) is diagnosed with cancer.

• Causes of cancer – Let your child know that there’s nothing anyone did to cause the cancer, nor does a child get cancer because of behaviour or a minor accident like a bump on the head. Nobody did anything 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 or unable to share food with other children, explain that 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. Reassure children that although cancer is a serious disease, the overall survival rate for children is high (about 87%). This can vary depending on the diagnosis.
• Expect change – If it’s a child’s friend, explain that things might change. For example, their friend may feel too unwell to play, may be away from school a lot or may have physical changes (e.g. lose hair or need to use a wheelchair). Encourage your child to focus on what hasn’t changed – their friend’s personality and their friendship.
• Visit the hospital if possible – It can be confusing for your child if the person with cancer disappears from their life after diagnosis. They may imagine the worst. It may be helpful to take your child to visit their friend in hospital, but first check with the friend’s parents and with the hospital.
• Keep in touch – If a hospital visit is not possible, there are other ways for your child to maintain the relationship with their friend. Younger children might like to make a card or a decoration for the hospital room, or you could phone, text or make video calls.
• Encourage expression of feelings – Let your child know that it’s okay to have lots of different emotions and that you have them too.

Answering common questions

Q: What is cancer?

Q: Are you going to die?

Q: Was it my fault?

Q: Do I have to tell other people about it?

Q: Can I catch cancer?

Q: Who will look after me?

Q: Is there anything I can do to help?

“It is often helpful to talk to other parents who have or have had kids at a similar age to yours when diagnosed. Talking to another parent who has travelled the same road can be reassuring.” Mira, mother of two children aged 3 and 12

What words should I use?

It’s often hard to find the words to start or continue a conversation. The suggestions below may help you work out what you want to say.

Although these are grouped by age, you may find that the ideas in a younger or older age bracket work for your child. See Talking about treatment for tips on how to answer specific questions.

Involving others

There are several ways to ensure kids hear a consistent message from people who are involved in their lives.

• Tell key adults – Share the diagnosis with other people who talk with your kids (grandparents, friends, teachers, 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 (see Finding support and information).
• Ask a professional – It may also be helpful to get some tips from a professional, such as an oncology nurse or social worker, psychologist or other health professionals at the hospital. They are used to a range of reactions and situations, and might have some tips for coping.

“Sometimes I felt alone when my dad was sick. None of my friends really understood what we were going through at home, or that the problem could go on for so long.” Adele, aged 16

Involving the school or preschool

Many parents wonder if they should tell the school when someone in the family has been diagnosed with cancer. If things are unsettled 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 may 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.

Ask the school 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 you and your children.

However, request that teachers don’t probe – some well-meaning staff members might misinterpret your child’s behaviour and unintentionally make them feel uncomfortable.

For example, a teacher may ask if your child is okay when they’re happily sitting on their own.

A cancer diagnosis in the family can also have an impact on academic performance, so the student may be entitled to special provisions. This can be particularly important in the final years of high school.

Some states and territories have schemes to help a student enter tertiary study if they have experienced long-term educational disadvantage because of their or a family member’s cancer diagnosis.

If you feel concerned about your child, ask your child’s teacher or principal whether your child could see the school counsellor.

Sometimes other children can be thoughtless in their comments. Talk to your child about how other children are reacting and encourage them to tell you if they have any concerns. You can raise these issues with teachers if needed.

Ask a parent of one of your child’s friends to help you keep track of school notes, excursions, homework and other events.

When life is disrupted at home, children may feel doubly hurt if they miss out on an event or activity at school because a note goes missing.

Support services for schools

“Dad just told us straight: ‘I have cancer.’ I just thought, ‘He’s going to die.’ Mum tried to sugar-coat it and said there were things they could do, but I was thinking the worst. I wanted to run. I wanted to do something. I thought if I could just do something, that would change it. I joined Canteen the next day.” Izzy, aged 15