Time to improve their long-term healthcare

CANCER is a terrifying word for the parents of children diagnosed with the disease. How many children are diagnosed with cancer in Ireland each year and what are their prospects?

This is an under-reported topic, says Jennifer Carpenter, development officer with Hand in Hand, an organisation supporting families affected by childhood cancer in the West of Ireland. “Children with cancer are a somewhat forgotten group as most people would rather not think about such a terrible thing happening to a child,” she says.

The National Cancer Registry of Ireland shows 150 new cases of cancer each year in children and teenagers, aged up to 19-years-old. The most common cancers in this age group are leukaemia, lymphoma and brain cancer.

Although these are life-threatening, there is hope. Thanks to improvements in treatment, most children diagnosed with cancer live long and productive lives. “Overall, there’s a 79% five-year survival rate,” says Dr Julianne Byrne, of the Boyne Research Institute in Drogheda, and an expert in childhood cancer. “This means they live at least five years from diagnosis.”

Five years is a critical time in cancer. Children who survive to this stage are considered cured. “But this is just a benchmark,” says Dr Byrne. “There are still questions to answer at the five-year stage and even when these children are 40-years-old. Three quarters of those who become adults have long-term complications.”

Chemotherapy and radiation can cause difficulties. “Because children’s organs are still growing when they are exposed to chemotherapy and/or radiation, they are vulnerable,” says Dr Byrne. “They are unique in that way.”

Radiation to the brain can cause learning difficulties and growth problems. Radiation, some forms of chemotherapy, to the pelvis can lead to infertility.

“It’s serious,” says Dr Byrne. “Long-term complications can include blindness, deafness, stroke, joint replacement and heart and kidney failure.”

The consultants at the National Centre of Paediatric Haematology and Oncology at Our Lady’s Children’s Hospital, Crumlin have concerns about this too. “With more effective treatment strategies over the years, survival in childhood cancer is increasing,” says a spokesperson.

“However, as the numbers of childhood cancer survivors increase, there is a growing body of evidence reflecting that survivors are at an increased risk of developing other complications, including other cancers, as a result of the treatment they received.”

Little research has been done in Ireland and doctors have relied on international data to guide them. Learning from the experience of others, Irish oncologists now modify their treatments to ensure as little long-term impact as possible.

This means different things in different circumstances. One chemotherapy agent can be replaced with another, more efficient, or one that is as efficient but has less potential side effects. Radiotherapy may be reduced in dosage or volume. The type of radiation may be changed and it may even be omitted.

“All involved in the treatment of childhood cancer have concerns about chemotherapy and radiation treatment,” the spokesperson for Our Lady’s Hospital, Crumlin says. “It is the balance between survival, and quality of life following treatment, that is at the heart of this question.”

New research into this issue is now underway in Ireland. Dr Byrne and the Boyne Research Institute are taking part in a pan-European project investigating the long-term impact of treatment and what can be done to minimise it.

This research can be difficult to compile as many survivors of cancer want to forget all about it. “They want to put the experience behind them,” says Dr Byrne.

“We need to allow them to do so, but we also need to balance that with our duty to give them a quality of care into the future.”

Ms Carpenter has seen this desire to move on in parents too. “Fear of the consequences of treatment comes much later,” she says. “Survival is all that matters at first.”

It is what matters to Helen Phillips. In January 2009, she and her husband Thomas brought their then 16-month-old daughter Sophie to hospital.

“She’d been off form and we brought her to Sligo for tests,” remembers Helen. “We were sent to Crumlin and she was diagnosed with tumours in both kidneys within a week.”

Sophie had Wilm’s tumour, a rare type of kidney cancer that affects children. Treatment started immediately and consisted of six sessions of radiotherapy as well as three days of chemotherapy every three weeks for a year.

Although the treatment stopped the cancer from spreading, both Sophie’s kidneys had to be removed. This meant that she had to spend three days a week on dialysis in Temple Street in Dublin.

Life for the family, which also includes Sophie’s seven-year-old brother Darragh, was lived on tenterhooks for the next two years. Helen and Thomas brought Sophie to and from Dublin every week and kept a close eye on her recovery, all the while trying to live a normal life.

“The staff at Crumlin and Temple Street and the people at Hand in Hand were great,” says Helen. “But it was difficult. It’s tough travelling to and from Dublin every week.” This February, Sophie had been free of cancer for two years which meant that she could go on the transplant list for a kidney. Both her parents were tested for compatibility and on February 15, Sophie received one of her father’s kidneys.

“She’s home now and doing very well,” says Helen. “In fact, she’s flying it. Before this, she was going to playschool and looked just like any other little girl but we had to look after her very carefully. Now, life can start to go back to normal for us and Sophie can look forward to starting school in September.”

Dr Byrne wants to ensure that the 150 children who are diagnosed with cancer each year remain healthy into the future. While she commends the quality of care at Crumlin, she wants adults who had cancer as children to receive a high standard of care throughout their lifetimes.

“We do quite well in our care of children with cancer in Ireland,” she says. “The system in Crumlin is excellent. But once you are discharged from Crumlin into the adult system, there is no standardised model of care and there ought to be.”

According to the consultants at Our Lady’s Hospital, Crumlin, guidelines are now being introduced into practice to direct healthcare professionals about the level of follow-up care required of survivors of childhood cancer.

Dr Byrne has high hopes for such guidelines. “A lot of countries are struggling with how best to provide a model of care to adults who had cancer as children,” she says.

“Hopefully, we’ll develop best practice here in Ireland.”