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Experts highlight gaps in knowledge on caring for survivors of teenage and young adult cancers

London, UK: Over 95% of patients with testicular cancer are cured nowadays, but this success has produced a new problem for cancer survivors, the medical profession and national governments, a cancer expert will tell Teenage Cancer Trust's Fifth International Conference on Teenage and Young Adult Cancer Medicine, which is meeting in London on Monday and Tuesday (June 9 and 10).

Dr Craig Nichols, director of program development and director of the germ cell tumor and lymphoma program at the Providence Cancer Center (Oregon, USA) will tell the conference: "Patients with testicular cancer, and, indeed, several other of the more treatable cancers, have great expectations of a cure, but this also imparts an additional responsibility of ensuring that the medical and social consequences of the disease and the cure have a minimum impact.

"We are returning an extra 50-60 years of life to teenagers and young adults who have been treated successfully for cancer. This shifts the emphasis from 'can we cure this disease?' to 'can we retain this near perfect cure rate as well as reducing the short and long term side effects of treatment, minimising the fertility consequences of therapy, reducing the long term risk of a second cancer and metabolic syndrome, and developing pre-emptive strategies for managing psychosocial consequences of cancer and cancer treatment at a young age?'.

"The medical profession and national governments need to develop strategies for meeting this challenge. They need to recognise that care cannot just stop when the patient is cured of the cancer, and that there is a huge cost still to be faced in terms of long-term care and support and in terms of collateral damage. Maximising the chances for good health for the next 50 years of life has very calculable social benefits, and people are beginning to realise this now. This is a fundamental shift."

Nearly three-quarters of children with cancer survive into adulthood, but a north American study has shown that, 30 years after diagnosis, 42% are affected by severe disease or a life-threatening condition, or have died. In the UK, there are approximately 30,000 survivors of cancer diagnosed before the age of 15, and given that cancer is more common between the ages of 15-24 than in childhood and assuming cure rates are similar to those for children, there are probably over 30,000 survivors of cancer diagnosed when they were aged between 15-24.

Dr Nichols will explain that cancer patients face a double whammy: "There are two aspects: the burden of the disease and the burden of treatment. Each makes a long-term contribution to the patient's quality of life."

Problems for cancer survivors include: the increased risk of a second cancer arising either from the first cancer or from its treatment, infertility caused by chemotherapy and radiotherapy, hypertension, kidney problems, the metabolic syndrome (a collection of disorders such as obesity, high cholesterol levels, high blood pressure and insulin resistance) and hormonal disorders. Survivors of testicular cancer may have life-long problems with low sperm counts, low testosterone levels and poor semen quality. Patients who have survived cancer as children, teenagers or young adults often have psychosocial problems as well.

"We are beginning to learn more about the psychosocial consequences such as body image, employment and sexual health," says Dr Nichols. "There's a higher incidence of lower performance in life generally among cancer survivors. They have undergone a big life disruption at a formative time in their lives. There needs to be recognition of this so that we can try to identify problems and risks early on and be pre-emptive in our use of psychosocial interventions and use of medications."

Traditionally, paediatricians have tended to drive initiatives on caring for cancer survivors because they recognised the problem some time ago. In the USA, the challenge is being met by the establishment of Adolescent and Young Adult Clinics and Specialised Survivorship Clinics under the auspices of the National Cancer Institute. In the UK, the government's recently published Cancer Reform Strategy announced the setting up of a new National Cancer Survivorship Initiative to consider a range of approaches to caring for cancer survivors.

Simon Davies, chief executive of Teenage Cancer Trust, says: "We know that this is a major issue that affects a lot of our patients and is increasingly going up the national agenda. I have just been invited to join the National Health Improvement Agency's working group on improving services to survivors of childhood cancers. I am also a member of the National Cancer Research Institute's Teenage and Young Adult Clinical Studies Development Group. One of their three strands of work is survivorship led by Professor Mike Hawkins."

Speaking before the conference started, Prof Mike Hawkins, director of the Centre for Childhood Cancer Survivor Studies at the University of Birmingham (UK) agrees that survivorship following cancer in childhood, teenage or young adult years is becoming an increasingly important area in the UK and it has been highlighted by the cancer czar, Professor Mike Richards. Prof Hawkins and his colleagues plan to follow-up approximately 25,000 survivors of cancer diagnosed between the ages of 15-24 between 1970-2000 in order to discover the specific problems this age group face.

He identifies three key areas where there need to be improvements:

  1. the establishment of standardised guidelines for following up TYA cancer survivors;

  2. extending the evidence base for guidelines on long-term follow-up;

  3. providing every survivor with a "patient passport" on their discharge from hospital, which would contain a summary of all their treatments and the implications for any future medical treatments.

Some of these things are happening already, but in a fragmented way, with some guidelines in existence and some centres issuing patient passports. But Prof Hawkins believes it needs to happen in a much more organised and standardised way, and, at present, there is a big gap in knowledge about the 15-24-year-old age group.

"For teenagers and young adults we really need to extend the evidence base. There's still a huge area of ignorance in relation to the consequences of treatment in the late teenage and young adult years. We hope to address this through the NCRI group that I chair.

"In the interim, we have got to use what we know from survivors of childhood cancers. However, we are much more ahead of the game for children up to the age of 15 than we are for the generality of cancer survivors," he concludes.


Contact: Emma Mason
Teenage Cancer Trust

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