Talking about the diagnosis

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 been told yourself 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 able.  Keeping the diagnosis a secret can be stressful, and your children will probably sense that something is wrong.

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, 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 different times, such as during treatment, and to talk about how they feel at any time.

Where should I tell my children?

Many people find that bringing up the topic 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, particularly if this is unusual for your family.

Try to find a time when you won’t be interrupted or need to rush off without answering all your children’s questions. Talking to kids before bedtime, school or an important event may not be a good idea. Ideally, you should tell them at a time and in a place 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 that children are in a place where they feel safe so they feel comfortable to express emotions such as sadness or anger.

Should I tell them 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. Asking older children to keep the diagnosis a secret from younger siblings can add to their stress.

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. Families can use language their kids understand and reflect on shared experiences in explaining the cancer diagnosis. This can help young people to understand the situation.

However, this is not always possible. Another 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.

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. Role-playing the conversation with your partner, friend, relative, counsellor, or hospital social worker can help.

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 any time they have questions or concerns.

What do children need to know?

The following is a guide to what to cover in your initial conversation about cancer.

Tell them the basics in words they can understand

You can share the news with a few short sentences explaining what you know so far and what is likely to happen next. Be clear about the name of the cancer, the part of the body affected and how the cancer will be treated.

To help explain cancer terms, you can:

• use a glossary
• get hints from websites
• read books about cancer written for children
• download Camp Quality’s Kids’ Guide to Cancer app from the App Store (Apple devices) or Google Play (Android devices). It provides information about cancer for kids aged up to 15 years.

Once you have explained the basics, ask your kids what else they want to know, and only  answer questions that they ask. Don’t assume children will have the same concerns as you; you can give them more details later if needed.

For younger children, accept that they may ask the same question several times. Each time you answer, they will absorb a little more information. Older children may be distant and quiet while they process what you’ve told them.

Find out what they already know

Ask your children what they know about cancer and clear up any misinformation or myths (e.g. they might think that they can catch cancer or that everyone dies from cancer). Children get information from various sources, such as school and social media, and they may have their own ideas of what having cancer means. Parents can guide their children towards accurate online information.

It’s okay to say “I don’t know”

If you don’t know the answer to a question, it’s fine to say so. Tell your children that 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.

Tell them what to expect

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

Ask them if they want to tell anyone

Your children may want to tell their close friends, their teacher, the whole class – or nobody.  Explain that it’s helpful to share the diagnosis with a few key people, such as their main teacher and the school principal, as well as other important people in their life, such as a music tutor or sports coach. Discuss ways to approach these conversations.

Offering realistic hope

Tell kids that although cancer can be serious and going through treatment can be challenging, most people get better. Explain that with the help of the doctors and treatment teams, you (or the person with cancer) will be doing everything possible to get well.

Show your love and emotion

Tell your children that you love them. You may show your love by hugging them, comforting  them, or other ways of making them feel valuable depending on your family and culture.

Some parents worry about crying in front of their children. It can be helpful for kids to know that strong feelings such as anger and sadness are normal and expressing them can make people feel better. Being open with each other about feelings can help your children cope.

After Dad told us, the 6 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

Coping with kids’ reactions

It’s natural for children and young people to have lots of different reactions to a cancer diagnosis. Talking with them about their reaction gives you a chance to discuss ways of managing how they’re feeling.

Crying

If your children cry, let them know it’s a natural reaction. Holding them will help some children feel secure. Let them know that they don’t have to “be strong”, and that feeling sad after a cancer diagnosis is common.

Fear

Some children will worry endlessly. Ask them what is their biggest worry. It can be hurtful if they start to avoid or ignore you. Explain that you are still the same person, despite any changes in how you look or behave.

Children may also worry that they’re going to be abandoned if something happens to the sick parent. Give your child a chance to talk about their fears and reassure them that they will always be cared for.

Anger

It is natural for children and young people to feel angry about the diagnosis as it means their lives could be disrupted.

Younger children may be annoyed if they have to miss a party or are asked to play quietly. Older children may seem angry and uncooperative if asked to help out more. Both may be disappointed or upset if a planned holiday 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 planning and courage to talk to your children about the diagnosis.

A lack of reaction isn’t unusual – often the children are protecting themselves and need some time to process the information. Or they may want to protect you from seeing how they are feeling. Remind them that they can talk to you or another trusted adult about it anytime.

It is likely that you will have several conversations about the diagnosis as your children’s understanding grows and other questions arise. Sometimes, despite your efforts to support your children, they may struggle with the impact cancer is having on their family. This is quite common and does not necessarily mean things have gone badly.

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 the illness.

Although the focus of this information 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.

Someone from the paediatric oncology team will be able to provide guidance and assist you with these discussions. For younger children, some hospitals have therapists (may be called child life therapists) who teach children strategies to manage their illness and can help you explain the diagnosis and treatment. If you have an older child with cancer, get in touch with one of the Youth Cancer Services. These hospital-based services offer specialised treatment and support to people aged 15–25.

Children and teenagers will respond to their cancer diagnosis in different ways. Fear, anger or sadness are all common reactions. Let your child know that it’s normal to have a lot of different feelings and it’s okay to express these emotions. You can also talk to them about finding ways to cope with these challenging feelings.

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.

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

• Paediatric Integrated Cancer Service
• Cancer Australia.

As much as possible, include your child in discussions about their treatment, and encourage  them to ask questions. Older children and teenagers may want to seek out information themselves. You can point them to reliable organisations such as Camp Quality, Canteen and Redkite.

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 can change for a while.

Along with feelings of 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 they have no right to complain.

For many children and teenagers, fitting in with their peers is very important. This means they 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. Your kids 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 they can do – Explain that they can help support 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 texting, email or social media.

It’s okay to have fun – Although the child with cancer has to have a lot of attention, the needs of their siblings matter too. As far as possible, siblings should keep doing their own activities  and have time for fun.

It’s okay to be cross – Most siblings argue at times, and it’s natural to be annoyed with a sibling who has cancer too. Being overprotective of a child with cancer can be harmful to them and their siblings.

They are 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.

They will always be looked after – Let your children know that you will make sure someone is always there to look after them.

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 children if a young friend or cousin is diagnosed with cancer.

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. Reassure children that although cancer is a serious, life-threatening disease, the overall survival rate for children is now almost 85%. This can vary depending on the diagnosis, but most children will survive cancer.

Expect change – Explain that things will change for the friend. They may feel too tired to play  or may be away from school a lot. They may have physical changes (e.g. have hair loss 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 to be sure visitors are allowed. Before the visit, let your child know that it’s natural to wonder how to act and what to say. The more time they spend with their friend, the more they’ll relax.

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 organise time for a video call. Older children may prefer to  communicate by phone or social media.

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 key questions

Q: What is cancer?

You may tell younger children: “Cancer is a disease that happens when bad cells stop the good cells from doing their job. These bad cells can grow into a lump and can spread to other parts of the body.”

For older children and teenagers, you may say: “Cancer is the name for more than 200 diseases in which abnormal cells grow and rapidly divide. These cells usually develop into a lump called a tumour or they may spread through the blood. Cancer may spread to other parts of the body.”

Q: Are you going to die?

This is the question that most parents fear, but often it doesn’t mean what you think. For example, younger children may really mean “Who is going to look after me?” Older children may be wondering, “Can we still go away during the school holidays?”

Try to explore the question by asking, “Do you have something in particular you’re worried about?” or “What were you thinking about?” You can explain that the treatment you are  receiving is the result of many years of research and that treatments are improving all the time. If your child knows someone who has died of cancer, let them know that there are many different types of cancer and everyone responds differently.

Children and teenagers often have many questions about death and dying. Cancer commonly prompts them to reflect on their own life and the lives of those they care about.

“We don’t expect that to happen, but I will probably be sick for a while. I am doing everything I can to be well. Sometimes it makes me sad, and I wonder if you get sad too.”

Q: Was it my fault?

Some children may ask you directly if they caused the cancer, while others worry in silence, so it’s best to discuss the issue.

“It’s no-one’s fault I have cancer. Scientists don’t know exactly why some people get cancer,  but they do know that it isn’t anything you did or said that made me sick.”

“You did not cause this cancer. There is nothing you could have said or done that would cause someone to have this illness.”

Q: Can I catch cancer?

A common misconception for many children (and some adults) is that cancer can spread from person to person (is contagious). This belief may be reinforced because when patients have chemotherapy they need to avoid contact with people who are sick. This is to protect the person with cancer from picking up infections, not to protect everyone else.

“You can’t catch cancer like you can catch a cold by being around someone who has it, so it’s okay to hug or kiss me even though I’m sick.”

“Cancer can spread through the body of a person with cancer, but it can’t spread to another person.”

Q: Who will look after me?

When family routines change, it’s important for children to know how it will affect their lives:  who will look after them, who will pick them up from school, and how roles will change. Try to give them as much detail as possible about changes so they know what to expect. For older children, it’s helpful to ask them what arrangements they’d prefer.

“We will try to keep things as normal as possible, but sometimes I may have to ask  Dad/Mum/Grandpa to help out.”

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

Your children may not know who to tell about the cancer or what to say. They may not want to say anything at all. It’s a good idea to ask how they feel about talking to others.

If you’re planning to inform teachers, the school counsellor or principal, talk to your kids first. Teenagers and even younger children may be reluctant for the school to know, so explain the benefits of telling the school and then chat about the best way to approach the discussion. Ask if your teenagers want to be involved in these discussions.

“You can tell your friends if you want to, but you don’t have to. People we know may talk about the diagnosis, so your friends might hear even if you don’t tell them. Many people find it helps to talk about the things that are on their mind.”

“Do you worry about how your friends will react or treat you?”

“I need to let your teachers know so they understand what’s happening at home at the moment. We can talk about who to tell and how much we should say.”

“Sometimes people talk about illness but they don’t know the full story. If the kids at school are talking about the cancer, let me know so we can discuss any things that they have got wrong.”

Q: Is there anything I can do to help?

Answering this question can be a delicate balance. Letting kids know that they can help may make them feel useful, but it’s important that they don’t feel overwhelmed with responsibility.

Some parents may feel hurt if their children don’t ask how they can help, but it’s common for children not to think to offer.

“Yes, there are lots of things you can do to help. We will work out what those things can be, and what will make things easier for everyone. Is there something in particular you would like to do?”

“Some help around the house would be good, but it’s important that you keep up with your schoolwork and you have some time for fun and for seeing your friends.”

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.

About cancer

Infants, toddlers and preschoolers

“Mummy is sick and needs to go to hospital to get better. You can visit her soon.”

“I have an illness called cancer. The doctor is giving me medicine to help me get better. The medicine might make me feel sick or tired some days, but I might feel fine on other days.”

Younger children

“You know that Mum has been sick a lot lately. The doctors told us today that the tests show  she has cancer. The good news is that she has an excellent chance of getting better.”

“Do you know what cancer is? Cancer is a disease of the body that can be in different places for different people.”

Older children and teenagers

“The doctors say Dad has a problem in his blood – it’s an illness called Hodgkin lymphoma. That’s why he’s been very tired lately. Dad will have treatment to help him get better.”

“Lots of people get cancer; we don’t usually know why. Most people get better and we expect I will get better too.”

To check knowledge of cancer

Infants, toddlers and preschoolers

“How do you think people get cancer?”

“Sometimes children worry that they thought or did something to cause cancer. No-one can make people get cancer, and we can’t wish it away either.”

“We can still have lots of kisses and hugs – you cannot catch cancer from me.”

Younger children

“We can still have lots of kisses and cuddles – you cannot catch cancer from me or from anyone who has it.”

“Even though your friends at school might say that cancer is really bad and I will get very sick, they don’t know everything about this cancer. I will tell you what I know about my cancer.”

Older children and teenagers

“There are many types of cancer and they’re all treated differently. Even though Uncle Bob had cancer, it might not be the same for me.”

“The doctor doesn’t know why I got cancer. It doesn’t mean that you’ll get cancer too. It’s not contagious (you can’t catch it) and the cancer I have doesn’t run in families.”

To explain changes and offer assurance

Infants, toddlers and preschoolers

“Mummy needs to go to the hospital every day for a few weeks, so Daddy will be taking you to preschool/school instead.”

“Grandpa is sick so we won’t see him for a while. He loves your pictures, so maybe you can draw me some to take to hospital.”

“Mummy has to stay in bed a lot and isn’t able to play, but she can still cuddle you.”

Younger children

“The doctors will take good care of me. I will have treatment soon, which I’ll tell you about  when it starts.”

“Even though things might change a bit at home, you’ll still be able to go to tennis lessons while Dad is having his treatment.”

“Mum is going to be busy helping Grandma after she comes out of hospital. There are ways we can all help out, but mostly things will stay the same for you.”

Older children and teenagers

“Things will be different while Dad’s having treatment, and when I can’t drive you to soccer training, Annie will drive you instead.”

“After my operation, there are a few things I won’t be able to do for a while, like lifting things  and driving. Our friends are going to help by dropping off meals.”

“If you have any questions or worries, you can come and talk to me. It’s okay if you want to talk to someone else too.”

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

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, 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 – 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.

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.

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.

Ways to involve the school include:

• Tell the principal, the school counsellor and your child’s teachers. This helps the school to  create a positive and supportive environment for the student.
• Let relevant staff know what your child has been told about the cancer and what they  understand cancer to mean, so staff can respond consistently.
• 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 the student. 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.
• If you feel concerned about your child, ask the 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.
• Explore what special provisions might be available for exams or admission into university.

Support services for schools

You may want to let the school know about services that provide school visits and information about cancer. For primary school and preschool children, Camp Quality offers a cancer education program, featuring puppets, to help young students learn about cancer in a safe, age-appropriate way.

For older children, Canteen has a cancer awareness program called “When Cancer Comes Along”.

For more ideas about how your child’s school can help, download our book ‘Cancer in the School Community: A guide for staff members’. This book explains how school staff can provide support when a student, parent or staff member has cancer.

Key points: Talking about the diagnosis

• Discuss the diagnosis with trusted adults first if you need to.
• Ask for practical and emotional support from relatives, friends or work colleagues.
• Work out the best time to talk to your children.
• Decide who you want to be there with you.
• Tell your children what has happened.
• Explain what is going to happen next.
• Assure them they will continue to be loved and cared for.
• Approach the initial conversation as the first of many discussions.
• Let them know it’s okay to feel scared or worried, and talking can help.
• End the discussion with expressions of hope.