While the diagnosis of any child or teenager with cancer is extremely traumatic, there have been huge advances in treatment; the five-year survival rate is now 80 percent in developed countries. With more young people surviving the disease, it has become increasingly important to understand the impacts treatment could have in later life. A team of European researchers is working with young survivors to establish the facts.
Approximately 1 in 750 young adults is now a childhood cancer survivor. Of these, it is estimated that 300,000 to 500,000 live in Europe. Using data from European childhood cancer registries, researchers are following around 80,000 survivors of childhood and adolescent cancer, making this the largest study of its kind to date.
The project is known as PanCareSurFup ('PanCare Childhood and Adolescent Cancer Survivor Care and Follow-Up Studies') and has received almost EUR 6 million in EU funding.
The team is focusing in particular on three health risks affecting young cancer survivors: cardiac disease, subsequent cancers and causes of 'late deaths' - those occurring more than five years after treatment ends.
The type and severity of late effects depends mainly on the original cancer, the age at treatment and the type and dose of treatment. To understand the risks better, the team will estimate the radiation dose received by the various organs of survivors. Much of the damage can be traced back to organs and tissues that are still growing being exposed to radiation.
After adding this information to the new database, the team will then calculate the risk of specific outcomes. Control studies will be carried out, with researchers checking their risk estimates against information on lifestyle and employment.
The results will be used to draw up guidelines for care. Ultimately this should lead to better long-term health for all young cancer survivors. Survivors and doctors will be able to identify and treat side-effects at an early stage, while scientists will seek to design new types of treatment that are less likely to cause severe or disabling complications for young cancer survivors, who still have their whole lives ahead of them.
PanCareSurFup runs from 2011 to 2016. But the research will not end with the project. The consortium was created from members of PanCare, a pan-European network for long-term survivors of childhood and adolescent cancer. Post-2016, the network will expand into other areas, such as fertility, hearing impairment and quality of survivorship, building on the results and collaboration forged within the EU-funded project.