Dr Hjorth, a paediatric oncologist, is explaining the significance of PANCARESURFUP (PanCare Childhood and Adolescent Cancer Survivor Care and Follow-up Studies), a project supported by €6 million of funding from the European Union (EU) which is researching the hitherto incompletely understood area of childhood and adolescent cancer survivors and the complications they can face in later life as a result of their cancers and the treatments they have received.

 “In the 1960s, there was a cancer survival rate of maybe 20-30 %, and some cancers like leukaemia were almost 100% fatal,” says Dr Hjorth, project co-ordinator of PANCARESURFUP. “Things improved in the 1970s and 80s, and today the five-year survival rate after cancer in childhood or adolescence in developed nations is almost 80%. As a result, we are now starting to see a lot more of these survivors. And it has become clear that some of them suffer from complications in later life.”

While improved cancer survival rates are of course good news, these complications - arising from treatments such as radiotherapy, chemotherapy and surgery - can be extremely serious in themselves. They include the three which provide the main focus of the PANCARESURFUP study: cardiac disease, secondary cancers and ‘late mortality’ (cases where death occurs after more than five years of survival, where the link with the earlier cancer may not be recognised).

The issue is especially relevant to young cancer survivors because they still have many years of life ahead of them in which such conditions can develop. Precise figures are not available, but PANCARESURFUP estimates that there are between 300,000 and 500,000 survivors of childhood cancer in Europe.

Established in 2011, the five-year PANCARESURFUP project carries out epidemiological studies of cardiac disease, secondary cancers and late mortality among survivors of childhood and adolescent cancers across Europe. Operating on an unprecedented pan-European scale, since numbers of survivors in any individual country are too small for meaningful data to be collected, the project involves 16 European universities, hospitals, research institutes and cancer-related networks and is following approximately 80,000 long-term survivors.

By developing, for the first time, detailed risk estimates for the most serious complications, the aim of PANCARESURFUP is to develop pan-European guidelines for the provision of improved and more consistent follow-up care for cancer survivors wherever they happen to live. This could take the form, for example, of setting up regular checks with a cardiologist, says Dr Hjorth, if that is a known risk for the individual. Because the problem has not been fully recognised in the past, he adds, this type of follow-up care in Europe has been fragmented or even, in some cases, non-existent. The ambition of PANCARESURFUP is to guarantee improved outcomes for childhood cancer survivors in all regions of Europe.

“Some of these complications may be rare, but put them all together and they add up to a substantial number. And for each individual, if there is no system in place in your country where you can go to have it checked up then you are left on your own. We get stories like that all the time. People feel lost and don’t know where to go.”

The results of the project’s risk assessments will be used not only as the basis for improved follow-up care, but also feed-back to those designing primary treatment protocols to help evaluate and perhaps modify the cancer treatments themselves - for example by adjusting dosage, with a view to minimising the risk of complications for future survivors.

“Society needs to recognise that we owe this to the survivors,” concludes Dr Hjorth. “It’s an obligation we have. If we treat them, we must take good care of the consequences of that treatment. Because they were children or young adults when treated, they have most of their lives ahead of them. It’s not the same as getting cancer in your 60s or 70s.”