Media Room

New data: more than 8 out of 10 childhood cancer survivors struggle with health problems later in life

18th August 2016 - Cancer research Patient support Community events

Cancer Council NSW funding gives childhood cancer survivors hope this Daffodil Day

New data reveals that over 81 per cent of childhood cancer survivors develop at least one life-changing mental or physical health issue[1] – so called late effects, meaning side effects appearing a long time after cancer treatment received as a child. Late physical effects include heart disease, obesity and osteoporosis. Many survivors also experience serious psychological late effects, with almost 50 per cent of survivors reporting anxiety or depression[2].

More than 20,000 young Australians are survivors of paediatric cancer, so over 16,000 of them are currently suffering from physical and mental issues developed after treatment.

Associate Professor Claire Wakefield and her team at the University of NSW have revealed the issue. Cancer Council NSW has awarded the team with $2.2m, funding a program that aims to reduce the incidence of chronic physical and mental illness after treatment, and enhance the social wellbeing and quality of life of survivors and their families – with interventions such as Reboot (encouraging healthy eating after treatment) and Recapture Life (increasing resilience in young people).

Late effects of childhood cancer can affect survivors and their families for decades after treatment, and the conditions often worsen over time. Despite this fact, A/Prof Wakefield said there had been little research on how to meet the needs of Australian survivors and families:

“On top of the prevalence of life-changing late effects that we have found childhood cancer survivors struggle with, our data also shows that there is no consistent model of care[3].

“When survivors are discharged from their clinic, they are often transferred back to their GP. We have found that GPs are not familiar enough with late effects and not confident enough to adequately care for childhood cancer survivors – many young survivors have to become their own ‘care integrator’,” said A/Prof Wakefield.

A/Prof Wakefield’s program of six interventions will work to address the need for better support.

One of the interventions is Reboot, which encourages healthy eating habits after cancer.

“Some of our brand-new research shows that children’s body mass index increases when they finish treatment, and weight problems persist for up to seven years after treatment[4].

“Often, children may not understand why they can no longer eat some of the treats they were allowed when they were in hospital. Breaking these habits can be tough.”

Another intervention, Recapture Life, helps young cancer survivors transition back into life after finishing treatment.

“Many young people tell us that it’s hard to just return ‘back to normal’ after cancer. Many aspects of life may have changed because of their cancer journey (e.g. relationships with friends and family, physical and mental health), and worrying about the future or cancer recurrence can be really stressful.

“Recapture Life will help young adults with some of the stresses they face.”

Cancer Council NSW’s range of practical, emotional and informational support services offers additional help for long-term survivors, and helps to fill the gap for adult survivors who did not receive interventions like the ones that A/Prof Wakefield is developing when they were treated for cancer earlier in life.

Annie Miller, Manager of Practical Support at Cancer Council NSW, said:

“Today, over 65 per cent of people will still be alive 5 years after a cancer diagnosis – that is a reason to celebrate. However, the reality is that survivors often suffer from a variety of issues.

“Our support services offer help for survivors who find transitioning back into life hard. For example, our survivorship webinars are popular because they can be accessed from any location, and at any time. They offer support on issues that many survivors struggle with – challenges such as returning to work, fears of the cancer coming back, and healthy eating and exercise programs.”

“We also have a range of after treatment programs, including information and support on how to live a healthy life after cancer. Or, for those who want to speak to someone who has gone through similar experiences, our Cancer Connect peer support provides one on one telephone support from trained volunteers. Participants’ ages range from people in their 20s through to 80+.

“Survivors also often struggle with the practical implications of life after cancer – our pro bono program can connect them with lawyers and HR professionals, for financial and legal advice.”

A/Professor Wakefield’s research and Cancer Council NSW’s support services are helping to improve the quality of life of cancer survivors. This August, you can help support Cancer Council NSW and the researchers it funds by participating in Daffodil Day on Friday, 26 August. 

[1] Survey data from ongoing research at the Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, 2016

[2] McLoone JK, Signorelli C, Wakefield CE, et al: Evaluating the psychological health and wellbeing of childhood cancer survivors., APS Health Psychology Conference. Coogee, Australia, 2015

[3] McLoone JK, Wakefield CE, R. Lawrence, et al: Comparing the models of care utilised by Australia and New Zealand childhood cancer long term follow-up clinics., Australian & New Zealand Children’s Haematology and Oncology Group (ANZCHOG), Annual Scientific Meeting. Melbourne, VIC, Australia, 2013

[4] Touyz L, Cohen J, Neville KA, Wakefield CE, et al: Changes in Body Mass Index in Long Term Survivors of Childhood Acute Lymphoblastic Leukemia Treated without Cranial Radiation and with Reduced Glucocorticoid Therapy, expected publication 2016

– Ends –

Media contact: Isabelle Dubach, Cancer Council NSW, T: (02) 9334 1872 M: 0401 524 321, isabelle.dubach@nswcc.org.au

Interview opportunities:

A/Prof Claire Wakefield, UNSW

Annie Miller, Manager of Practical Support, Cancer Council NSW

 

Notes to editor

About Daffodil Day

On Friday, 26 August, Cancer Council NSW is encouraging people across the state to participate in Daffodil Day – in support of someone they know who has been affected by cancer. Celebrating 30 years in 2016, Daffodil Day is a leading Cancer Council fundraising event and one of the largest in the Southern Hemisphere.

The event helps fund vital cancer research, prevention, advocacy and support services for all Australians, from cancer patients and carers to families and friends. Daffodil Day has raised over $133 million since it began, and this year aims to raise $2.6m in NSW and $6.7m nationally.

 

How to get involved

  • Buy a pin on 26 August 2016

Daffodil Day stalls near local shopping areas, train and bus stations and other major locations will be selling Daffodil Day pins and other merchandise. Find a location near you: https://www.daffodilday.com.au/get-involved/where-to-buy/

  • Volunteer

Volunteers can give their time to help set up Daffodil Day stalls on 26 August, 2016 and sell Daffodil Day pins and merchandise in locations across Australia. To register as a volunteer, visit https://www.daffodilday.com.au/volunteer

  • Order a merchandise box

Merchandise can be ordered by individuals, clubs, schools or workplaces. To order, visit https://www.daffodilday.com.au/get-involved/buy-merchandise

  • Donate online

To donate online, visit https://www.daffodilday.com.au/donate

  • Buy merchandise

Items from the Daffodil Day range can be purchased in July and August from Coles Express sites, and on 26 August across stalls in NSW.

  • Buy fuel from Coles Express on Daffodil Day*

Fill up your vehicle at any Coles Express site across Australia on Daffodil Day (26 August 2016 only) and Coles Express will donate 2 cents from every litre of fuel sold to Cancer Council.

  • Text to donate and dedicate a daffodil**

Text HOPE to 1999 8877 to donate $5/sms and dedicate a virtual daffodil to someone you know.

*For full terms and conditions, visit daffodilday.com.au.

**$5 donation charge will appear on your mobile bill or usage history. Each donation cost $5 per sms. Donations are available on  eligible  plans,  except  Optus  prepaid.  We may keep  you  updated  by  phone/email.  To opt-out? Call 1300 65 65 85 or for more information, please visit daffodilday.com.au.

Cancer research Patient support Community events
TOP BACK TO TOP