All childhood cancer survivors should be able to lead a normal life.

In Europe however, in spite of the increase in the survival rates, many of them suffer from considerable treatment-related side-effects throughout their lives.

This is why “improving the quality of survivorship” has become a priority for SIOPE, incorporated as one of its Strategic Plan’s objectives.

Explaining the issues survivors face and exploring ways to improve their quality of life was also the aim of the PanCareSurFup European Conference ‘Acting Now’.

More than a hundred participants attended this event, held in association with the European Week Against Cancer (25-31 May) and co-organised by SIOPE in the framework of the EU-funded project PanCareSurFup (PanCare Childhood and Adolescent Cancer Survivor Care and Follow-Up Studies).

Participants agreed that more collaborations between healthcare professionals and survivors about the possible treatment’ side effects, a wider awareness of society and a consistent and effective screening for early detection of possible late effects should become more widely available.

Between 300,000 and 500,000 childhood cancer former patients currently live in our region (each year 10,500-12,000 new survivors are added to EU citizens).

Having experienced cancer during a delicate phase of life results in the fact that 2/3 of survivors suffer from late treatment complications which, in 1/4 of them, have a serious or even life-threatening nature.

Late effects may affect not only health (e.g. heart failure, renal toxicity, secondary cancers, hearing impairment, neurotoxicity, etc.), but also have a negative impact on growth, fertility, mental health and more generally have an impact on their professional and private life.

Several survivors shared their experiences during this conference, pointing out that the main problem they faced was not the cancer itself, but to have to deal years later with heavy repercussions on their lives.

Sarah Quigley, for instance, shared the frustration she felt when facing the lack of knowledge of medical professionals about her side effects, which strongly impacted her pregnancy.

The professional choices of Victoria Forster were instead influenced by the disease: having had leukaemia when a child, she became a post-doc researcher on acute/chronic effects and neurotoxicity.

After overcoming cancer during his adolescence, Tom Grew suffered from anxiety, but he then managed to consider cancer as part of his life and became both a researcher and an advocate for survivors.

Parent of a young former patient, Holly Wattwill explained how the challenge doesn’t end when the treatment finishes, and that siblings should be taken more into account.

Jaap den Haartogh and Eleonora Guzzi stressed the importance of communicating with each other and explained that the word “survivor” carries a stigma, as a condition that cannot change (the word “resilient” might be more appropriate, as a capacity that a person can “build up” throughout life).

SIOPE together with all partners in the PanCareSurFup project strives to find solutions to the challenges they encounter on a daily basis with useful initiatives, such as the “Survivorship Passport” and its related guidelines for follow-up.

The current lack of information on many patients’ medical history becomes particularly critical as children become adults, or as they move to another country.

Moreover, a difficult relationship or a lack of understanding from doctors can characterise the survivor’s journey.

Finally, the possible effects of cancer treatment should be discussed at an early stage (before the start and all along the treatment), to ensure that information about options for e.g. fertility preservation are readily available to make informed choices.

The Survivorship Passport addresses this lack of awareness and communication – both on the part of GPs and of former patients themselves – by both educating healthcare professionals and engaging survivors to play an active role in maintaining their own health and well-being.

Defined via the partnership between professionals, survivors, and IT experts, this innovative tool provides young patients who ended a cancer therapy with relevant information –  including a treatment summary and individualised guidelines to follow on the long-term – making thereby everyone aware of the potential risks or late effects.

As each complication is rare, and the follow-up of survivors is unequally applied across Europe, there is a lack of consistent data and understanding on the late side effects of cancer and its treatment.

PanCareSurFup Coordinator Lars Hjorth thus highlighted the importance of advancing research via large pan-European collaborations (like PanCare) to reduce the frequency, severity and impact of late side-effects.

Childhood cancer is now curable and late mortality is diminishing, but these research progresses have been possible thanks to high-dose combinations of treatments.

However “cure is not enough” and it is now time to think beyond this paradigm by focusing on the development of new treatment protocols that minimise the risk of late complications without jeopardising good results.

Research should thus shift its focus on childhood cancers’ biology, on modern targeted therapies and on the genetic predisposition of patients, in order to adjust the treatment and ensure the lower possible late effects and toxicities.

Efficiently stratifying patients into different risk categories would also allow a better identification of survivors’ early signs of relapses or late effects, as the best treatment options for age-related diseases could be different from those for the general population.

Where in Europe a patient is treated for childhood cancer may also affect the extent of negative late complications for survivors. The issue of health and survival inequalities across Europe was raised by Mr. Alojz Peterle MEP (SL, EPP and President of the MAC - MEPs Against Cancer Group), who opened this Conference.

A cancer survivor himself, MEP Peterle agreed to make sure that ensuring better childhood cancer outcomes remains a priority for the European Union during the SIOPE-MAC launch of the European Cancer Plan for Children and Adolescents last November.

Apart from PanCareSurFup, the EU has already made possible a series of highly relevant projects – ENCCA, ExPO-r-Net, and PanCareLIFE – but the sustainability of advances and results obtained in these projects is crucial, and all stakeholders need to keep working together to make sure this happens.

Source: SIOPE