Explaining sarcoma cancer to a child

If you’re a parent with young children, you may be wondering how to explain your sarcoma diagnosis to them. You might feel anxious, scared, or worried about approaching the conversation. This page can help you prepare for the conversations.

This page is in honour of Emily Travis. Read Emily’s story.

How to explain sarcoma to your child

Cancer can be hard to explain to a child, so you might want to explain it simply. It’s important that you understand your diagnosis and your treatment before speaking to your child.

Here are some things you could say to your child:

• Sarcoma is a type of cancer, which means I am not very well.
• You cannot catch sarcoma from me, so you can still hug me.
• A doctor at the hospital is going to treat me and help me get better.
• My sarcoma cancer might mean I cannot do everything we used to do, like playing sports.
• You have not done anything wrong or caused the sarcoma.

Whatever you tell them, let your child’s nursery, school, childminders, or grandparents know what you have said, and the sort of language you used. This will mean they’re not getting mixed messages.

Will my child understand?

Some children already have an understanding of what cancer is. You could start by asking them what they already know.

You know your child best. You should explain everything to them at a level that they understand. How you talk about sarcoma depends on:

• your child’s age
• how they usually understand and express emotions
• their current understanding of illness
• your relationship with them.

Macmillan Cancer Support has a free guide on talking to children and teenagers when an adult has cancer.

How to tell your child about sarcoma treatment

It’s a good idea to tell your child what treatment you’re having and why. You should also tell them about any side effects or changes that might happen because of the treatment.

For example, you could say:

• I am having an operation to remove the cancer from my body.
• I am having chemotherapy. This is medicine that helps destroy the cancer cells.
• I am having radiotherapy. This treatment will damage cancer cells in my body.

Talking about the side effects of surgery

To prepare your child to understand your surgery, you could say:

• I might be in hospital for a few days to rest after the operation.
• When I come home, I might be more tired than usual.
• I might need some help walking and doing things around the home.
• I will have a wound from surgery, so you might need to be careful giving me hugs.
• A nurse may come and visit to help care for my wound.

If you’re having an amputation, you might need to explain to your child that you will look different after surgery.

Talking about the side effects of chemotherapy

Chemotherapy side effects should end when treatment ends. It’s a good idea to tell your child that you might not be well during chemotherapy treatment, and that you might look different if your hair falls out.

You could say:

• I might be more tired than usual, so I’ll need to rest.
• My hair might fall out, but it will grow back.
• I may be feeling sick or have a bad tummy.

Talking about the side effects of radiotherapy

You may have side effects during and after treatment. You should tell your child that you might have some side effects and help them understand what to expect.

You could say:

• I might be more tired than usual, so I’ll need to rest.
• My skin may be sore where they’re treating me, so you’ll need to be careful giving me hugs.

How to talk about a terminal diagnosis

Some parents may need to talk to their child about an incurable diagnosis.

If your sarcoma cannot be cured, the conversation you have with your child will be different. We know this can be a difficult conversation to have. The most important thing is to be honest and straightforward with your child, so that they do not misunderstand anything.

You might want to think about the questions they will have before you speak to them.

You could say:

• My treatment is no longer working, and the cancer has spread to other parts of my body. This means I am going to die.
• The doctors will take care of me and make me comfortable, but will not cure my illness.

The charity Marie Curie has more information about talking to children about a terminal illness.

Choosing the right time to talk to your child

It is your choice when and how you talk to your child about your sarcoma diagnosis. You may need to consider what’s happening in their life and how the news might affect them.

For example, you could tell them over a weekend or on school holidays to give them time to process the news.

If your child has exams coming up, you may want to consider telling them after they’ve finished the exams, or during longer gaps of time between exams.