Talking with children about breast cancer

Deciding when and how much to tell your children about your diagnosis can be difficult. However, even if children don’t fully understand, evidence suggests they are less anxious and less frightened when they know what’s going on.

Some parents avoid telling their children for fear of upsetting them or having to answer difficult questions. But children are able to pick up on changes and may know when something’s upsetting or worrying you.

If a child feels left out, they may start to think they’ve done something wrong or create a story that could be far worse than the truth. Many children feel they can’t tell you their worries, and retreat into themselves.

Children need to feel they can trust their parents, and being honest helps them do that. Keeping it a secret may also be tiring and difficult to maintain. There is also a risk that if you don’t tell them, they will find out another way.

Who might tell them

For most children, information about your breast cancer is best coming from you and your partner if you have one. They usually cope better with difficult news if it’s given by someone they love and trust. But if you’re finding it difficult, it might help to get someone else you and your children know well to be with you. Family and friends can be a vital source of support when talking with your children, particularly if you’re a single parent.

When to tell them

Most women talk to their partner, close friends or relatives when they first notice something wrong, but may wait until later to tell their children. Some wait until tests have confirmed they have breast cancer or until they are soon to start treatment.

There are no set rules and it will depend on their age and how you usually talk with them about illness and other issues in the family. But the longer you leave telling them, the more likely it is your children will realise that something is wrong, and they may start worrying and guessing what it might be.

Talking with your children at a time when you feel vulnerable and emotional can be very difficult. You may worry that you will get upset and perhaps cry, but this can allow them to feel okay about showing their own worries and emotions. However, if you can appear calm and confident when you tell them about your cancer, even if you don’t feel it inside, it may help your children feel less upset or panicky. Talk to them in a familiar setting where they feel comfortable, and where you are unlikely to be distracted or disturbed.

It’s a good idea to keep talking with your children regularly about what’s happening so they feel involved, informed and able to ask any questions. You may need to repeat explanations, especially to younger children.

Finding the right words

What you decide to tell your children will depend on a number of different things. You may be a family that talks very openly about everything, or you may come from a background or culture where intimate or serious things are not talked about, or are kept between adults. You may talk more easily to one of your children than to another. Your children’s understanding and reaction will depend on their age and character.

Many people find it helpful to discuss what they plan to say with their partner or a friend before talking with their children. You might also find it useful to talk to your breast care nurse. Practising the kind of words you want to use beforehand also helps. However, even with careful thought and preparation, the conversation may not go as planned. There may be questions or a reaction that you didn’t expect. The best approach is to keep things simple and avoid complicated explanations.

Using the word ‘cancer’

It may be helpful to start by asking your children what they know or understand by the word ‘cancer’ so you can tailor your discussion. If you can, it’s best to use the word ‘cancer’ from the beginning, and to explain it using language that your children understand. This may help make the word less frightening for them.

For example, you could explain that the body is made up of tiny building blocks called cells. Sometimes these cells change into cancer cells ­– they don’t look like normal cells and they behave differently. Cancer cells can stop the body working properly. You could also explain that there are lots of different types of cancer, and breast cancer is one of these.

How you describe and talk about cancer will very much depend on your children’s ages, and what they know about cancer already.

Children react differently depending on their age, character, stage of development and their relationship with you, so it can be hard to predict what will happen when you tell your children about your breast cancer.

Most of all, your children need to know that everyone’s doing all they can to make you better, that you still love and care for them, and that there are things they can do to help. Keeping to your usual boundaries and routines as much as possible can reassure them too.

Try to give them time and opportunities to talk about how they feel. It’s best not to push them if they would rather not talk, especially at first, and they might only think of questions later. Your children may prefer to talk things over with their friends rather than with you, especially if they are older. If this is the case, it can be helpful to talk with friends’ parents first, so that everyone is saying the same thing.

You might find that your children ask the same questions over and over again. This is normal and is probably their way of getting reassurance and checking in with you. Try to be patient with them and consistent with your responses, using terms they understand.

Below we’ve listed some of the common questions children ask when they learn that someone close to them has cancer. How you respond is a personal decision (and will depend on their age), but we’ve made some suggestions based on what’s helped others in the past.

‘Is it my fault?’

Children often think disruption in the family is a result of their behaviour, and might blame themselves. Try to reassure them that it’s nothing they’ve done and they aren’t being punished.

What you could say: ‘It’s not your fault, or anyone else’s. Nothing you have done or said has caused it.’

‘Can I catch it?’

Young children may think cancer is contagious and that it can be ‘caught’ by touching, hugging or sharing space. 

What you could say: ‘Some illnesses like colds and chicken pox can pass from one person to another but cancer is different – you can’t catch it.’

‘Are you going to die?’

From the age of about 7, most children begin to realise that death is the end of a person’s life and that it is irreversible. They start to understand that all people, including themselves, will eventually die.

What you could say: ‘My type of cancer usually gets better with treatment. Some people with cancer do die but we are not expecting that to happen to me. The doctors have told me they have very good treatments for me.’

Children may respond to the news in a similar way to adults. For example:

• They may not feel like eating
• Their sleep may be disturbed
• They may have trouble concentrating at school or with homework
• They may get angry or upset over what seem like relatively small problems

Younger children in particular may revert to behaviour that they haven’t shown for a long time, such as ‘baby talk’ or bed-wetting. Be sensitive to changes in their behaviour or mood – these are a normal response.

Changes in behaviour and poor school results may be a sign that your children are feeling worried or insecure. You may be tempted to let poor behaviour go because you feel guilty that your children are affected by your cancer. However, if you acknowledge these changes you can encourage your children to talk about what is happening. Children are often more anxious and upset if the rules suddenly change and they are treated differently. Clear limits and boundaries can help them to maintain a sense of normality and cope better if they are feeling anxious.

At times it may seem like your children aren’t taking your diagnosis very seriously because they have a more ‘matter-of-fact’ way of looking at life. Some parents may find this difficult to understand, but others might find it takes some pressure off them.

School-age children are more aware of how your illness affects them, and they may be very anxious or resentful. Routine is just as important for them as for younger children. They want to know that the detail of their daily lives will not change dramatically. Who will take them to school? Who will care for them after school? Who will cook their dinner? Who will help them with their homework? They need to know that once you’re feeling better you’ll be doing these things again.

Sometimes children can feel worried about changes in your appearance and what others may say or think. You can talk about this and ways to help manage their concerns. For example if you have lost your hair because of chemotherapy treatment your children may prefer you to wear a wig when picking them up from school.

Very young children are unlikely to have very much knowledge about cancer, so you can decide how much or how little to tell them.

What you say to very young children about your breast cancer will depend on the words you normally use for breasts and feeling ill. It’s best not to frighten them or overload them with information. For example, you may decide to tell them you have a bad lump in your breast (or whatever word you use for it) and you’re going to hospital to have it removed.

As well as talking, you may want to show them what is happening using dolls or teddies, or by drawing pictures. Storybooks can also help to explain things and prompt questions. Read through a book you want to use before sharing it with your children, to make sure it fits in with your circumstances.

You might like to share our book Mummy’s Lump with your children. It’s a simple picture book aimed at children aged 7 and under. It follows a family through the mum’s diagnosis and treatment for breast cancer.

Most young children don’t like changes to their routine or may worry about being separated from you. When you go into hospital they need to know that you will be back, and that they won’t be left alone or with someone they don’t know. They like to know details about their daily routine, such as who will be giving them their meals, taking them to nursery and putting them to bed.

While you are in hospital

If you stay in hospital after surgery it will be reassuring for your children to see where you are and know that you want to see them. It is a good idea to explain to them that you both need to be extra careful when cuddling. Tell them that you may not be able to pick them up for a while but this will only be temporary. If they are unable to visit you in hospital, you could suggest a treat, such as staying with a friend or favourite relative.

Support with young children

Having a good support network will take off some of the pressure if you have very young children. Particularly if you are able to get practical help. If you don’t have family and friends living close by who can help with childcare, a social worker at the hospital or contact the Family and Childcare Trust.

In this age group it helps to try to find out how much children already know about cancer so that you can correct any misunderstandings, for example that everyone who has cancer will die. Even if you don’t like using the word ‘cancer’ your children or their friends will probably know the word anyway from other people or from the television or the internet. They may understand more about it than you realise. They might know that there are different types of cancer and that people can recover from it.

A good place to start with children of this age is to tell them what’s happened and what you and the doctors are going to do about it. You can ask them what they want to know about your diagnosis or treatment and when they want to talk (this may be different from what you imagine).

Most children study the human body at primary school and will have some basic ideas about cells and the different parts of the body. You may want to look at some factual information with them or read a suitable story. Talk to them about your feelings and encourage them to talk about theirs too.

Explaining side effects

Most children know that medicine helps us to get better. However, some treatments (like chemotherapy) can make people feel unwell before they get better, and it’s worth explaining this to them.

If you are having chemotherapy it’s worth preparing your children for side effects such as nausea, tiredness and that you might lose your hair. Let them know it doesn’t mean the illness is getting worse. You can also explain that these symptoms will eventually go away, and your hair will grow back.

Once you have a diagnosis, telling their teacher and possibly the school nurse will help prepare them for answering questions or giving your children extra support.

Letting your children ‘help out’

Children like to help out and feel useful. They might like to be involved in everyday tasks such as:

• Helping with your make-up
• Helping you put on a wig or a scarf
• Helping with household chores and shopping
• Watering the garden
• Making you drinks
• Looking after any pets
• Helping to look after younger siblings or grandparents

Most teenagers will have heard of cancer and may know – or think they know – something about it. They may have heard of experiences from friends. They may also know people who have died from cancer, so it’s useful to find out how much they know about breast cancer. For example, do they know that treatments can be very effective and having breast cancer doesn’t automatically mean you’re going to die?

Teenagers may want more detail about breast cancer and your treatment but they may also prefer to find out about it on their own. If so, guide them towards reliable sources of information such as our booklets. Try to monitor where they look for information, as some sources can be less trustworthy or inaccurate.

Older children may be anxious that they will get breast cancer too, particularly if they’ve heard that it can run in families. The vast majority of breast cancers happen by chance but if you are concerned that your children may be at increased risk of developing breast cancer in the future, speak to your breast care nurse or doctor. You might also find our information on breast cancer, genes and family history useful.

One thing that most teenagers have in common is that they are easily embarrassed – especially by their parents. Appearances are usually important to them and they may need reassurance that, fully dressed, you will look the same as before. If you’re going to have chemotherapy you may want to talk to them about the possibility of losing your hair.

It’s normal for teenagers to be struggling with feelings of wanting independence and to break away from their parents or family, and they may not know how to negotiate with a parent who might need to depend on them for a change. They may feel torn between wanting to be there for you and dealing with their own lives or problems, such as relationships, friends and exams.

It’s helpful to talk with your children’s teachers or form tutors so they are aware of the situation. If your children are preparing for exams, the school can apply to the exam board for special consideration. However, this will only happen if you request it.

School is an important part of your children’s life and the teachers and other children can help provide stability and support at a time of change at home. Interacting with your children’s school may feel daunting, but by working with the school you’ll enable staff to plan and provide the help and support you’d prefer.

When should I tell my children’s school?

It’s helpful for your children’s school to know about your diagnosis as soon as possible. This is so staff can fully support you and your children at this difficult time. You may prefer to let your partner, another family member or a friend speak to the school on your behalf.

Who should I tell?

You can tell the headteacher, your children’s form/class teacher or another teacher you feel able to talk to. Some schools have a member of staff who oversees pastoral care or a school nurse who you can approach. Face-to-face contact with a member of school staff may be best, but if that’s not possible you could make initial contact through a telephone call, letter or email.

Talk to your children beforehand to make sure they know who you’re telling and why. Their favourite trusted teacher might not be the one you immediately think of, so it’s a good idea to check with them first. Young children sometimes want their class to be informed, while older children often want as few people as possible to know.

What should I tell them?

As well as your diagnosis, you may want to tell the school about any treatment planned and any change in practical arrangements. Be clear about what your children know. It’s useful to tell the school the wording you use when talking with your children about your cancer, so they can follow this too.

Remember, you can share as much or as little as you choose. You don’t need to tell the school staff everything you know, unless you want to.

Telling your children you have breast cancer, answering their questions and dealing with their initial responses may be just the beginning. There will be times during and after your treatment when more talking and explaining will be necessary. Throughout this time, keep the lines of communication open and keep checking in with them.

From time to time there will be new information to give your children, for example about your treatment or the outcome of a follow-up appointment. This means they may have further questions. Often the questions may take you by surprise, perhaps when you’re driving or watching TV rather than when you’re ready and prepared. Other children like to have a dedicated place where they can sit and talk to you about things that frighten or worry them. This might help them to go about their day knowing that they can come back to the same spot when they need to.

You may want to encourage older children to talk with your doctors and nurses, perhaps when you go for a hospital appointment. This can reassure them that a lot is being done for you and that hospitals can be friendly, supportive places.

If your children seem low for long periods, or they are withdrawn or uninterested in what is going on around them, talk to your GP or treatment team. If necessary they can refer your children to a counsellor or to your local child and adolescent mental health service. Some people find group therapy with other young people can be helpful, or activity days such as those offered by Maggie’s Centres.

Specialist child and adolescent mental health services (CAMHS) are NHS services that focus on the needs of children and young people. They are made up experts such as psychiatrists, psychologists and occupational therapists who work with children. Most local CAMHS have their own website, or you can ask your GP for more information. You can read about CAMHS on the YoungMinds website or by searching on nhs.uk

When your treatment is finished, it’s understandable that your children want things ‘back to normal’ as soon as possible. They may want reassurance that you’re better, but also that their own lives will return to normal. This may not always be straightforward for the whole family, particularly in the early weeks and months. Children may find this hard to grasp, especially if they feel they have been thoughtful and considerate during treatment. You may need to explain that getting better can take quite a long time – weeks or even months.

Children may also have lingering doubts about your recovery. When you have a follow-up appointment this might be a worry for them as well as you. Also, if someone they know is later diagnosed with cancer, or someone’s parent has died, it can bring some of the worries back. Continue to be as honest as you can, without making promises you may not be able to keep.

It’s probably best to say that although you can’t promise, you and your doctors don’t expect you to be ill again, but whatever happens your children will always be looked after and cared for.

Once again, talking with them about how you and they feel is probably the best way to deal with any concerns. If you have established an open and trusting relationship during your cancer, it should be easier to talk about your feelings and acknowledge any worries that arise.

Each stage of your treatment and recovery will bring different feelings, anxieties and highs and lows. But if you are able to talk honestly and openly with your child or children at each step, most families can find a great source of support from each other.