Looking after the survivors

ABOUT 120 children get cancer every year in Ireland and the vast majority of them – 80 per cent – go on to lead healthy lives following their often-arduous treatment.

However, researchers are now discovering that childhood cancer survivors can have health problems much later in life as a direct result of their treatment.

“Late effects of childhood cancer include heart disease due to radiation – particularly radiation to the chest – or heart problems due to drugs called anthracyclines, which are widely used and effective against childhood cancers but toxic to the heart in the long term,” explains Dr Julianne Byrne, epidemiologist.

Byrne is the founder of the Boyne Research Institute in Drogheda, Co Louth, which has organised the first conference on childhood cancer survivorship to take place in Dublin on Saturday.

“We have organised the conference because childhood cancer survivors need to know the risks and take care of themselves. For example, the usual advice for the prevention of heart disease – don’t smoke, take exercise and have a healthy diet – is more important for this group of people. And we know that one in five survivors of childhood cancer smoke,” says Byrne.

Another reason for the conference is to alert healthcare professionals to this group of cancer survivors. “Currently, there is no structured care for childhood cancer survivors once they reach the age of 18. The National Cancer Control Plan doesn’t address childhood cancer or survivorship,” she says.

The conference, which is free for childhood survivors and their families, will have presentations on the acute care for childhood cancer, the late effects and the experience of survivors of childhood and teenage cancer.

Prof Mike Hawkins, director of the Centre for Childhood Cancer Survivor Studies at the School of Health and Population Sciences, University of Birmingham, is one of the speakers at the conference. He worked on the National Register for Childhood Tumours when it was first started in 1981 and is now attached to the British Childhood Cancer Survivor Study.

“We know that childhood cancer survivors have four times the risk of the general population of getting another cancer. One in 100 in the general population is at risk of cancer but four in 100 childhood cancer survivors will get another cancer. That means 96 per cent of them are clear, but that 4 per cent are at risk of getting leukaemia caused by chemotherapy drugs in the first five years after treatment or other cancers 10 years after treatment,” he explains.

“These late drug effects are cumulative and we now know that if you can keep the dose lower, the risk of leukaemia can be kept down. People are also more mindful now of the fact that although radiation can cause cancer 10 years or more after treatment, its effects are dose dependent,” says Hawkins.

Fertility is another huge issue for survivors of childhood and adolescent cancer. “Bone marrow transplant, pelvic radiotherapy or a lot of chemotherapy drugs will destroy the ovaries and the testes,” explains Byrne.

“For example, teenage girls can have the menopause following a bone marrow transplant and with that, there is very little possibility of recovering fertility,” she says.

“Others may continue menstruating but stop early, so they have a window of fertility that they need to be aware of. Boys who have started to produce sperm can have cryo-preservation, but for younger boys, techniques are still very experimental.”

Dr Gillian Levitt, paediatric oncologist who has been involved in the UK survivorship initiative, is another speaker at the conference. “Our aim is to provide a patient pathway for survivors, from diagnosis throughout life, so that they can opt in or out of healthcare as required,” explains Levitt.

Care plans lay out possible late effects of treatment and what needs to be watched. So, for example, because radiotherapy to the chest increases the risk of breast cancer, survivors of childhood cancer need to ensure they are included in breast cancer surveillance systems.

“In the UK, we found that 50 per cent of long-term survivors of childhood cancer were not followed up. Children who had cancer in the 1970s and 1980s were left wafting in the wind, but things have improved greatly. By supporting these young people in their teenage and adult years, we can help them to self manage and reach their maximum potential.”

One in 100 in the general population is at risk of cancer but four in 100 childhood cancer survivors will get another cancer

The first Irish Conference on Survivorship After Cancer During Childhood or Adolescencetakes place on Saturday in Croke Park Conference Centre, Dublin. Admission is free for childhood cancer survivors and their families. Booking on tel: 041-9836041. chall@ccs2011.ie See also ccs2011.ie