For some people, the cancer may be advanced when they are first diagnosed. For others, the cancer may spread or come back (recur), even after the initial treatment seemed to be effective.
Learn more about:
- Living longer with advanced cancer
- Offering realistic hope
- Converstaions about the end of life
- Waiting for your children to ask
- Using words they understand
- Telling them what to expect
Living longer with advanced cancer
More and more people with advanced disease are surviving for longer periods of time. Treatment can often keep the cancer under control and maintain quality of life for many months, and sometimes for many years. When this happens, the cancer may be considered a chronic (long-term) illness.
If the cancer has advanced, it is important to keep talking with your children. Just as with the initial diagnosis, children may sense that something is happening, and not telling them can add to their anxiety and distress.
Children may have similar feelings to adults after hearing the cancer has advanced. These include shock, denial, fear, sadness, anger, guilt or loneliness.
Uncertainty about what the future holds will be a challenge for both you and your children. You may be able to reassure children that, although the cancer cannot be cured, there are treatments that can help you feel better and you may be able to stay well for a long time.
Remember that the concept of time can be different for younger children. While several years might seem to be a short time to you, it can seem like a long time for children.
Offering realistic hope
A diagnosis of advanced cancer does not mean giving up hope. Some people with advanced cancer can continue to enjoy many aspects of life, including spending time with their children and other people who are important to them.
If the disease progresses, the things that are hoped for may change. For example, a person may now focus on living comfortably for as long as possible or being able to celebrate a particular event. You can share these hopes with children while still acknowledging the reality of the situation and allowing them to prepare for loss.
Conversations about the end of life
While some people with advanced cancer live for years, for others, the outcome (prognosis) is fairly clear and they will know that they may have only weeks or months to live. If death is likely in the short term, it is best to be as open as possible about this while trying to make the subject of death less frightening. For example, avoid saying that death is always peaceful because this may not be the case.
If you need to talk about yourself or your partner, this can be an especially hard thing to do. Hospital social workers and other health professionals can support you and help you to find ways to have these challenging conversations with your children.
You may ask children what they know about death and what they think it means. This can help you to clear up any misconceptions about death.
Talking to children about death in an open way may help them to feel more comfortable spending time with their family member who has cancer. Acknowledging that someone is likely to die also gives your family the chance to show and say how much you care for each other, and it allows families to work on any unresolved issues. For older children, the chance to make amends for past mistakes may be particularly important.
Wait for your children to ask
When you talk with your children about death, offer simple and short explanations. Give brief answers to questions they ask. Wait for the next question to emerge and respond to that.
It usually doesn’t help to offer lots of explanations if your children aren’t ready to hear them. If they ask a question you don’t know the answer to, say you’ll find out and let them know.
Use words they can understand
Terms such as “passed away”, “passed on”, “lost”, “went to sleep”, “gone away” or “resting” can be confusing for children. It’s best to use straightforward language. This includes using the words “dying” or “death”. Here are some examples of how to explain these concepts in an age-appropriate way.
Tell them what to expect
Prepare children by explaining how the illness might affect the person in the days ahead and what treatment they may have. For example, they might be sleepy or need a lot of medicine.
Young children tend to think in concrete terms, and it helps to talk about death as a change in function. For example, “When Grandma dies, her body will stop working. She will stop breathing, and she won’t feel anything either.”
A big hole
“I was in my teens when my mother died of cancer. This was at a time when patients were not told the truth. In case she didn’t know, when I visited my mother I kept up the charade and didn’t mention death. She didn’t bring it up. This was a great loss to me and I’m sure to her too. A big hole in my life, to this day, is that I don’t know how she felt about her death’s effect on me, my sister and our father.”
EVA, NOW A MOTHER HERSELF WITH TEENAGE DAUGHTERS
→ READ MORE: How children react
Podcast: Explaining Cancer to Kids
Listen to more episodes from our podcast for people affected by cancer
More resources
Prof Jane Turner AM, International Psycho-Oncology Society President Emeritus,The University of Queensland, QLD; Taylor Baker, Consumer; Dr Ben Britton, Principal Clinical and Health Psychologist, Head of Psychology, Hunter New England Mental Health, NSW; Camp Quality; Dr Lisa Cuddeford, Head of Department, WA Paediatric Palliative Care Service, Perth Children’s Hospital, WA; A/Prof Peter Downie, Head, Paediatric Haematology–Oncology and Director, Children’s Cancer Centre, Monash Children’s Hospital, VIC; Dr Sarah Ellis, Clinical Psychologist, Kids Cancer Centre, Sydney Children’s Hospital, NSW; Malia Emberson-Lafoa’i, Consumer; Kate Fernandez, 13 11 20 Consultant, Cancer Council SA; Jane Gillard, Consumer; Mary McGowan OAM, International Childhood Cancer Advocate, VIC; Annette Polizois, Senior Social Worker, Women, Family and Emergency Care Team, Royal North Shore Hospital, NSW; Rhondda Rytmeister, Clinical Psychologist, HeadWayHealth (formerly Snr Clinical Psychologist, The Cancer Centre for Children, Westmead, NSW); Nadine Street, Head of Social Work and Social Welfare, HNE Mental Health Service, NSW; Warren Summers, Online Counsellor, Canteen, NSW.
We would also like to thank the health professionals, consumers, organisations and editorial teams who have worked on previous editions of this title, and we are grateful to the parents and young people whose real-life stories have added to the richness and relevance of this book.
We thank and acknowledge Dr Paula K. Rauch, MD, Founder and Director, Marjorie E. Korff PACT (Parenting At a Challenging Time) Program and Associate Professor of Psychiatry, Harvard Medical School, whose research and writing on helping parents talk to their children about cancer was used as source material for this book and has been adapted in several sections: pages 8–11, How children understand cancer; page 22, Answering key questions: Are you going to die?; page 26, Involving the school or preschool; pages 30–31, Hospital visits; and pages 36–37, Encouraging family time. We also thank the American Cancer Society for permission to use and adapt material on pages 8-11 from its book Cancer in Our Family: Helping children cope with a parent’s illness (2013); Macmillan Cancer Support for permission to use its book Talking to Children and Teenagers When an Adult Has Cancer (2013) as a source of information; Jessica Watt, Oncology Social Worker, The Children’s Hospital at Westmead, for her contribution on page 20, When another child has cancer; and Diane McGeachy, Hobart Counselling Centre, for contributing material for page 37, Spending one-on-one time.
View the Cancer Council NSW editorial policy.
Need to talk?
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Coping with cancer?
Speak to a health professional or to someone who has been there, or find a support group or forum
Caring for someone with cancer
Practical advice and support for carers
Cancer information
Advanced cancer
Information for different stages of advanced cancer
What is grief?
A natural response to loss can involve a range of feelings and experiences