If a 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 booklet 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.

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

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 in When another child has cancer 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

Support from Cancer Hub

Cancer Hub is a digital one-stop shop to help families (with children aged up to 25 years) access practical and emotional support. Call 1800 431 312 to connect with support from Camp Quality, Canteen and Redkite.

Camp Quality

Supports children living with cancer and their families, as well as children who have a parent or carer with cancer. The Camp Quality Kids’ Guide to Cancer website and app is aimed at children aged up to 15 years. Camp Quality also offers free school programs, recreation programs, camps and family experiences, as well as a 5-part web series explaining the cancer journey.

For more information, see Camp Quality.

Canteen 

Helps young people aged 12–25 who are dealing with their own or a close family member’s cancer. Young people can connect with others through the Canteen Connect app; get face-to-face, phone or online counselling; get specialist, in-hospital treatment; and attend programs, camps and gatherings.

For more information, see Canteen.

Redkite

Provides practical, emotional and financial support for families who have a child aged 0–18 years diagnosed with cancer. Many services are delivered online through the myRedkite portal or by Redkite’s team of specialised paediatric oncology social workers.

For more information, see Redkite.

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

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%).3 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.

Busting the myths

There are many common fears and misconceptions around talking with children about cancer. Listed below are a few myths (and why they are incorrect):

• “I have to get it right”: There is no “right” time or way to talk to your children about cancer; every family will find their own way to have these conversations.
• “Finding out I have cancer will traumatise my children”: Some children may have strong reactions to hearing that their parent has cancer, but this does not necessarily mean they are not coping.
• “As a parent, I have to appear to know what I am doing at all times, and be in control”: It’s okay to be sad in front of your children, and to not know all the answers.
• “Coping with cancer means that my children will always be happy and look on the bright side”: Sadness, anger and fear are all normal reactions but there may also be warning signs that your child may need some extra support.
• “There will be one big conversation where I break the news of cancer”: While the first discussion is likely to be difficult, this will be the first of a series of conversations where your children can ask questions and explore their feelings and responses to the news.