A child with cancer

Survival from many types of childhood cancer has increased over recent decades, but there’s a lot more to do

London seems to have been the meeting place of the world this year. But I don’t think that any of the amazing events that have taken place here in 2012 have the ambition or potential to change lives like the recent annual congress of the International Society of Paediatric Oncology (SIOP).

This brought together around 2,000 members of the children’s cancer community – doctors, nurses, scientists, parents, patients, survivors, psychologists and many more – to discuss a wide range of topics that impact on the care of children with cancer.

The agenda was absolutely packed, covering topics as diverse as the latest improvements in treatment and the importance of communication between medical staff and families to how to improve the situation for children in developing countries and raise awareness of childhood cancer.

Highlights are difficult to choose, but these are a few of mine.

Coming together to make a difference

Many of the amazing advances we have made in childhood cancer so far have come about as a result of collaboration, between doctors, scientists, patients and even countries. And bringing people together to make a collective difference was a central theme of the congress.

There was a lot of discussion of an exciting new initiative, the European Network for Cancer Research in Children and Adolescents (ENCCA). Funded by the European Union, this network will bring together experts from across the continent to improve the treatment of children and young people with cancer right across Europe.

ENCCA will help them share knowledge and best practice, and drive the development of new treatments and effective clinical trials. It also seeks to improve the quality of life of children and young people with cancer, during and after their treatment. The ultimate aim is to create a ‘European Virtual Institute’ for research.

For me personally, one of the most exciting aspects of ENCCA is that there is a specific programme within it looking at teenagers and young adults with cancer. When I was diagnosed with cancer many years ago, at the age of 14, there was no real acknowledgement of the fact that teenagers and young adults may need specialist care – then, and sometimes still today, they are cared for by either children’s or adult’s cancer services, neither of which may be the right setting for their care.

The UK is undoubtedly one of the world leaders in tackling this issue, with developments such as specialist treatment units, but there are still improvements that need to be made. ENCCA will create a framework for medical and science professionals, patients and survivors to work together to develop new research initiatives and develop better medical services.

Tailoring treatment for medulloblastoma

Brain tumours account for around a quarter of all cancers diagnosed in children, and unfortunately, in many cases, are still extremely difficult to treat effectively. One of the sessions I attended at the Congress focused on brain tumours, and included a number of presentations discussing how researchers are trying to find new, more tailored ways of treating a type of brain tumour called medulloblastoma, using information about its genetic make-up.

Identifying the genetic mistakes that drive the development of tumours or that can impact on their response to treatment, is giving researchers new clues about which treatments might be effective for medulloblastomas, and uncovering targets against which new therapies can be developed.

For example, based on their genetic profiles, medulloblastomas are currently grouped into four different subtypes. One of these, accounting for around a third of all cases, is known as the Sonic Hedgehog group. This is because they have faults in genes involved in a chemical signalling pathway of the same name. This means that the pathway is stuck on – a bit like having the accelerator jammed down on a car – and drives the growth of the tumour.

A drug developed against one of the components of this pathway has been tested in adults with various types of cancer and seemed to be particularly promising in medulloblastoma. Dr Birgit Geoerger (Institut Gustave-Roussy, Paris) and her colleagues have now given this drug, LDE225, to a small group of children. Their trial involved children with a number of different types of tumour, including more than 20 with medulloblastomas.

Excitingly two of these children had very good responses to the drug for a number of months – at the time of the congress, one child had been responding for 10 months, and the other was still well three months after completing 9 months of treatment. Importantly, the researchers have also found a genetic signature within the tumours that seems to predict who will respond to the drug. Dr Geoerger told us of plans to develop a bigger trial, where this test will be used to identify children likely to respond to LDE225, and where the drug will be compared to temozolomide, another drug used to treat brain tumours.

Although it is still early days, this is a great example of biology-guided treatment – and there may be more of this to come for medulloblastomas, as other presentations in the session were on projects that are identifying new genetic changes in this type of tumour.

Global impact

Some of the most powerful presentations at the conference were from countries where the outlook for children with cancer is very different to the UK. In low- and middle-income countries around the world, there are many huge obstacles to caring effectively for these children, from a lack of diagnosis to a lack of suitable treatment or even simple pain medication, to having to travel thousands of miles for treatment or indeed not being able to afford to pay for it at all.

These obstacles mean that in the poorest countries, only 10 per cent of children survive – and probably many more are going undiagnosed. But again, the power of the collective – as well as some innovative ways of tackling these hurdles – is making a difference.

Shalini Jatia, a social worker from the TATA Memorial Hospital in Mumbai, India told us about the myriad challenges facing the families of childhood cancer patients in India, and how this has resulted in 15-20 per cent of patients and their families abandoning their treatment. She and her team have come up with a very practical way of turning this around – by supporting the costs of treatment, travel and accommodation for families who live far away. They are also providing individual counselling to families, helping them understand that cancer can be curable. Delivering all this support resulted in the rate of people dropping out of treatment halving in just a year.

Dr M’hamed Harif, from Casablanca, Morocco described the impact of The French-African Paediatric Oncology Group, which is working to adapt treatments used in Europe so that they are suitable for the more limited resources seen in some African countries. For example, some countries do not have radiotherapy facilities available, so the group are looking at how they can get around this by using chemotherapy-only treatments.

They have demonstrated that running clinical trials across multiple African countries is possible, and that they are key to improving survival and building appropriate care guidelines for particular countries. The group also has an active education programme, helping share knowledge with professionals looking after children with cancer across Africa.

Working together

Just a couple of weeks later, much of what happened in the frantic few days of the SIOP congress is starting to blur. But the one abiding thing that I have taken away from the meeting, and that I think will stay with me for a very long time, was the truly humbling feeling of seeing so many people from diverse backgrounds and cultures gathering together for a sole purpose.

Seeing them talking, exchanging details to work together in the future – and knowing that this will happen – gave me real hope that, in the future, by working together we will truly revolutionise care for all children with cancer here in the UK and around the world.

Anthea Martin, Science Communication Manager