Patient pressure has influenced how scientific advances in the space of only 50 years have transformed childhood cancer from a disease that was usually fatal, into one that the majority of newly diagnosed children can expect to survive.
Dr Barnes, from the Wellcome Unit for the History of Medicine at the University of Manchester says: “Today more than 80 per cent of children with childhood leukaemia survive. This remarkable change is largely due to the determination to organise large-scale government funded clinical trials in the sixties and seventies with the aim of eradicating leukaemia from a child’s body.”
The story – to date untold in the UK – recounts how in the 1950s and early 1960s, the British medical establishment believed it was unethical to treat children with chemotherapy, as they were not convinced that this offered a significant cure. Doctors treating children with leukaemia were more likely to offer antibiotics and occasionally steroids as treatment for this lethal disease. The records of the British Medical Research Council (MRC) show that only approximately three per cent of British children were treated with chemotherapy. However, American research hospitals treating children with leukaemia applied treatment regimes that were far more intensive than those recommended by clinical researchers in the UK.
Hearing about the situation in America, parents rushed to demand that the MRC review its protocols and by the late 1970s, modifications to American protocols were being widely followed in British hospitals with American survival rates being replicated in Britain.
Today’s high cure rates in childhood cancer do not mean there is any room for complacency. Many children continue to die of cancer, and those who survive may suffer long-term side effects from their treatment.
In the same issue of the journal, Dr Neil Sebire, a consultant pathologist at Great Ormond Street Children’s hospital, describes an exciting new era of research. Studies based on tumour samples have allowed scientists to identify many sub-types of cancer. Forms of cancer that look the same down a microscope are now being discovered to be very different, and doctors can target these sub-types more precisely.
“This kind of research, “he says “is likely soon to lead to new treatments, and to allow more personalised treatment for each child. However, to make progress in this area, researchers need access to tissue samples, usually those left over after procedures conducted as part of their treatment”.
In the UK, the national childhood cancer tissue bank run by the Childhood Cancer and Leukaemia Group may help to revolutionise the way the disease is investigated. Dr Sebire adds: “Although there are still legal and ethical debates about using these samples for research, I believe that people affected by serious illness are more supportive of tissue-based research than perhaps the Government and regulators realise".
“Tissue-based molecular research will be one of the key approaches to the successful management of many chronic illnesses – like cancer - in the coming decades. It is vital that we agree a demanding regulatory environment, formalisation of standard operating procedures and quality-control methods and of course, ensure the trust and confidence of the public.”
Childhood cancer remains an important threat to life – it is the second leading cause of death in children, exceeded only by accidents. However, it is increasingly important to understand what it means to live with cancer and what it means to survive it.
In this special issue on childhood cancer, Professor Mary Dixon-Woods, editor of Chronic Illness says: “We are perhaps not used to thinking of cancer as a chronic illness, but our special issue suggests that a new approach to how we view cancer may well be needed.” The story of Katie Knight and her father, Dave – told in their own words and available online at SAGE - shows the profoundly disruptive effects of cancer in adolescence.
“I (Katie) was 13 when first diagnosed with Hodgkin’s Lymphoma in September 2003… My mum and dad said that nothing can prepare you for the moment when you are told that your child has cancer. For them it felt like they’d been hit in the face with a hammer and dropped down a well at the same time. But it’s a place to start, knowing what you’re dealing with… My dad started to keep a ‘blog’ (an on-line diary, perhaps as a place to let out some of his weirder thoughts.)”
"During the course of my research, I have interviewed many teenagers and young adults with cancer about their illness experience", says Anne Grinyer from the Institute for Health Research at Lancaster University. "In my paper, I use their accounts to show how specialist services for this age group can do much to improve the experience of patients, and importantly, why this age group is different from any other."
An example given by Dr Grinyer is how young people with cancer can experience discrimination and stigma. Some told stories of being taunted or abused in public by passers-by about their appearance in ways that they felt would not happen to a younger child or an older adult. Hair loss was sometimes seen by casual observers as a threatening statement or as symbolic of a defiant youth culture, and young people with cancer reported being refused entry to clubs. The ‘no head covering’ policy of some clubs applied to the bandanas worn to cover baldness. The distress at hair loss applied equally to boys and girls, though each gender assumed the other had it easier.
Cite This Page: