Today about 80 per cent of children diagnosed with cancer during childhood can realistically hope to survive for at least five years after diagnosis. Of those who are alive and disease-free after five years, the vast majority will still be alive 15 years post-diagnosis. However up to 70 per cent of long-term survivors go on to develop one or more chronic health conditions as a result of having been treated for cancer as children.

The Long-term Follow-Up Project is collaboration between Children’s Cancer Institute and the Centre for Children’s Cancer and Blood Disorders at the Sydney Children’s Hospital. The project combines clinical and laboratory research to learn more about the long-term effects of childhood cancer and its treatment, and to apply this knowledge to improve the quality of life of future survivors.

    • Long-term follow up for survivors of childhood cancer


      In Australia, an estimated one in 900 young adults aged between 16 and 45 years is a survivor of childhood cancer. Unfortunately, while more children are surviving childhood cancer than in the past, many go on to develop one or more life-altering chronic health conditions such as infertility, neurocognitive deficits, short stature, hearing or vision loss and low-grade second cancers.

      Childhood cancer survivors also have a significantly higher mortality rate compared to their age-matched peers. This is accounted for by disease recurrence (66 per cent), the development of second cancers, and treatment-related organ toxicity such as that of the heart and lungs.

      Health problems that develop as a result of childhood cancer and its treatment often only become evident over time as the child grows, matures and ages. Through the Cancer Survivorship Program at Sydney Children’s Hospital, survivors are offered follow-up care far beyond their childhood years. This long-term follow-up benefits survivors by providing them with health education, cancer screening and risk-reducing health interventions.

      Beyond this, knowledge gained from the follow-up of survivors allows clinicians to identify factors associated with adverse health outcomes and to modify the use of cancer therapies accordingly. The aim is to minimise the risk of long-term side effects, thereby improving the quality of life of all those treated for childhood cancer.

    • Studies in a NSW-wide cohort of survivors


      Over several years, the Centre for Children’s Cancer and Blood Disorders at Sydney Children’s Hospital (through the Long-Term Follow-up Project) has collaborated with the Molecular Epidemiology Group at Children’s Cancer Institute to establish a local cohort of long-term survivors of childhood cancer.

      Following agreement from the other two child cancer centres in NSW – the Children’s Hospital at Westmead and the John Hunter Children’s Hospital in Newcastle – this cohort is now being expanded. The inclusion of adults treated for childhood cancer at all three of these centres will result in a NSW-wide cohort of over 1000 survivors.

      Studies in this expanded cohort will not only improve the identification of long-term effects but will also, through the use of molecular techniques, allow us to better understand the risk factors for long-term effects as well as for cancer initiation. It is hoped these studies will lead to the development of preventative interventions that decrease morbidity and mortality in future patients.

      Study of metabolic syndrome in long-term survivors of childhood cancer

      A recently published study from the program confirmed that the rates of metabolic syndrome are increased in survivors of childhood cancer, and represents the largest cohort reported to date. Collaboration with researchers in the field of exercise physiology and epigenetics is aiming to improve understanding of the molecular events that result in insulin resistance.

      Pilot studies in the program are looking at preventive strategies in at-risk individuals to reduce long-term morbidity by reinforcing healthy lifestyles, motivating positive behaviour changes, helping to target preventive therapy and aiding in better focusing surveillance studies, including the risk of second malignant neoplasms.