Supporting the ‘forgotten’ survivors of childhood cancer

More children are surviving cancer than ever before. But for many of those survivors, the very treatment that saved their lives will impact their quality of life for years, and even decades, into the future.

Professor Claire Wakefield, who heads up the Behavioural Sciences Unit at the University of New South Wales, said more than 8 in 10 childhood cancer survivors develop at least one delayed or ‘late effect’ side effect from their treatment.

Physical impacts of treatment on children’s developing bodies

“Having cancer treatment while organs are developing can affect all sorts of the body’s systems, depending on the treatment, and can range from heart disease, obesity and osteoporosis to premature ageing, and endocrine and fertility problems,” Professor Wakefield said.

“They’re a bit of a forgotten group. If you talk to survivors, they often don’t want to make a big fuss, because they feel lucky to have survived.

“They’re unlikely to ring their oncologist and ask about the health problems they’re having 10, 20 or 30 years after their treatment. They will suffer in silence.”

Intervening for kids is so crucial because it can influence what their lives look like for the next six decades.– Professor Claire Wakefield

Cancer’s effects on children’s emotional wellbeing

The potential impacts aren’t just physical – childhood cancer survivors also have an increased risk of developing anxiety and depression.
“People are often surprised to know that childhood cancer survivors have a lot of health problems, and that those health problems can take a long time to appear,” Professor Wakefield said.
“There’s so much focus on the success of the treatment, that the story of the cost of that cure can be lost. People are then quite surprised about the many years of difficulties they have to face after that.
“Having cancer as a child does change the way they think about the world, it does come with a health burden, which sometimes isn’t even understood by survivors themselves.”

Six new intervention programs for survivors

Thanks to a $2.2 million, five-year research grant from Cancer Council NSW (2016-2020), Professor Wakefield and her team developed a range of six intervention programs to help survivors and their families navigate the challenges they face, prevent chronic physical and mental health conditions and improve their quality of life.

One of these programs is Re-engage, which helps survivors get back into and navigate the healthcare system as adults. They are assessed by a nurse, who prepares a care plan for them, educates them about healthy lifestyles and liaises with their GP.

“Survivors who take part in Re-engage are amazed at how many of their health problems are due to their cancer treatment. For example, sometimes their teeth can be quite badly damaged from chemotherapy, and they’ve been going to multiple dentists who haven’t been able to provide them answers,” Professor Wakefield explained.

“Finally, someone is able to explain why these things are happening to them. That explanation of why they have particular health problems can be really therapeutic.”

The Reconnect social anxiety program aims to help health professionals to identity childhood cancer survivors with social anxiety and refer them for help.

Support for parents and siblings of patients

A childhood cancer diagnosis impacts a child’s whole family, so there are also interventions for parents and siblings of patients.

For all the programs, the focus is on identifying problems as early as possible to gain the maximum benefit.

“If you can intervene early, you have potential long-term benefits for the whole society. Intervening for kids is so crucial because it can influence what their lives look like for the next six decades,” Professor Wakefield said.

“Some of our interventions may only do a little bit, but some might really change the course of their life. Even though the interventions can be psychosocial, they have the potential to save lives through finding health problems early, or through encouraging survivors to have healthier lifestyles.”

Putting new research into practice

With the funding for the programs wrapping up in 2020, Professor Wakefield and her team are now working with community organisations to implement the programs as widely as possible.

“We’re really passionate about trying to get our programs implemented and so grateful to have found a home for each of our programs to let them live on,” Professor Wakefield said.

Click here to find out how you’re helping us fund life-saving research.

If you have any questions, concerns or want more information about cancer, please contact our support line on 13 11 20.