Seven out of ten children with cancer now survive

BEING told your child has cancer is one of the most devastating things a parent can experience.

But the battle against childhood cancers means seven out of ten children diagnosed with the disease will now survive.

However, experts have told The Scotsman survival rates may be reaching their peak until there is a major breakthrough in an area such as gene-based treatments.

They say the efforts of the medical profession must now turn to improving the quality of life for survivors, tackling issues such as infertility, and ensuring cancers do not return.

A study in the British Journal of Cancer revealed last month that better drugs and new treatment strategies mean 73 per cent of youngsters recently diagnosed with leukaemia – the most common childhood cancer – will now be cured. This compares with only 25 per cent of those diagnosed in the 1970s.

In the UK, between 1,500 and 1,700 childhood cancers are diagnosed in under-15s each year – about half in under-fives.

Dr Hamish Wallace, a consultant paediatric oncologist based in Edinburgh, said huge progress had been made in improving survival rates. In the case of children with the type of leukaemia known as acute lymphoblastic leukaemia (ALL), survival rates were now moving towards 90 per cent after five years.

He said the way in which the care of children with cancer was organised had improved significantly, helping to increase survival.

"Patients are diagnosed quickly and treated appropriately in children's cancer centres," Dr Wallace said. "Their treatment is closely supervised in the right kind of environment by the right team.

"There has been a huge history of research trials that have, little by little, chipped away and improved the prognosis. All children unfortunately are not cured, and until we find some other way of tackling it, there will always remain a small percentage of patients who do relapse."

Dr Wallace, who is the lead clinician for the Children and Teenagers Scottish Cancer Network, said while progress had been made in many childhood cancers, others were still troubling doctors.

He said one area where improvement was needed was brain tumours, which account for 20 to 25 per cent of childhood cancers. Of particular concern was brain stem glioma – tumours in the brain stem that are particularly difficult to treat.

"The outlook for that, unfortunately, is pretty much uniformly fatal," he said.

Children with brain stem glioma usually survive no more than a year after diagnosis.

But more progress has been made in cancers such as Wilms' tumour – a cancer of the kidney – with about 90 per cent of children surviving.

Dr Wallace said one of the biggest challenges facing doctors was to improve the quality of life for survivors.

He is leading a trial using hi-tech scans to tailor treatment for youngsters with Hodgkin's lymphoma – a cancer of the lymphatic system. This could mean children do not receive unnecessary doses of chemotherapy or radiotherapy, and that treatment stops when the cancer responds.

"That's a great advantage, because if you do give radiotherapy to a young person, they are at risk of getting a secondary cancer 20 years later within the radiation field," Dr Wallace said.

Up to 20 per cent of childhood cancer patients could have another cancer after treatment for Hodgkin's lymphoma, because of the effects of radiotherapy.

Chemotherapy can also cause fertility problems.

Dr Wallace said he was keen to stress to parents that childhood cancers were not an automatic death sentence.

"The outlook isn't always grim – just about all patients have a chance of being cured," he said. "About 80 per cent of our patients will be alive five years after diagnosis. But that does not translate to them all being cured.

"With lymphomas, if it has not come back in five years, then you are going to be cured. Leukaemia can come back late, so can brain tumours. But with every day that passes, the risk of a cancer returning becomes less and less, until the risk is negligible and then you can talk about a cure."

While welcoming the progress made, Dr Wallace was cautious about predicting further rises in survival.

"It's very difficult to see with the treatments we already have available how things are going to be significantly improved in the next ten years," he said. "What we are really trying to do is maintain high rates of survival and decrease the long-term effects.

"Until we find some way of turning the cancer off, perhaps genetically, we are not going to cure that many more patients."

The children's cancer charity CLIC Sargent supports families and patients after a cancer diagnosis. Ellen Finlayson, its head in Scotland, welcomed the progress being made in tackling childhood cancers.

"For the families, it is a massive shock to find out a child has cancer. They almost go through a grieving process," she said.

"But the important message we can put out there now is that it is not a death sentence."

She said it was now crucial to focus on improving the care of survivors. "Having gone through cancer, children and young people can face all sorts of other difficulties," she said.

"They can have trouble getting insurance. They will often have had gaps in their education because of their treatment, affecting their university and employment prospects. They can also have problems with anxiety, constantly worrying that every ache or pain they get could be the cancer returning."

Campaigners believe that, while children tend to receive first-class medical treatment, improvements could be made in their overall hospital experience. Lynne McNicoll, from the Teenage Cancer Trust, is raising funds for a new unit for teenagers at the Edinburgh's Western General Hospital.

The charity's Remember Zoe Appeal has already helped refurbish the unit for teenagers in the Royal Hospital for Sick Children in Edinburgh.

"It is difficult for teenagers to be treated alongside much younger children and also with much older patients," she said. "We want to make them feel more comfortable, providing computers so they can do school work and try to carry on as normally as they can."

Elspeth Atkinson, Macmillan Cancer Support's director for Scotland, also welcomed the higher survival rates for children, but she added: "Survivors of childhood cancer must be given information and support about the possible late effects of their treatment, including fertility issues, and if these do arise, they must get rapid access to specialist services."

FACT BOX

THERE are 21,000 survivors of childhood cancer in the UK.

While leukaemia is the most common type of cancer in children, accounting for 35 per cent of youngsters diagnosed, it is by no means the only form of the disease in children.

• Brain and spinal tumours account for around 20 to 25 per cent of childhood cancer cases. Surgery, radiotherapy and chemotherapy can be used to treat these tumours.

• Lymphomas are cancers which start in the lymphatic system, the two main types being Hodgkin's lymphoma and non-Hodgkin's lymphoma.

• Retinoblastoma is a type of eye cancer that occurs in the retina of one or both eyes.

• Sarcomas are types of cancer that can affect both soft tissue and bone.

• Germ cell tumours start in the reproductive cells, or cells that produce eggs or sperm. The tumours usually begin in the testicles or ovaries and can affect children and adolescents.

• Wilms' tumour is a type of kidney cancer which usually affects the under-fives. It can begin to develop when a baby is still inside the womb when the cells that should mature into kidney cells stay immature.

• Neuroblastoma. This tumour usually starts to develop in the stomach area.

Case Study 1: The treatment was fantastic

A YEAR ago, Angela Blair could not imagine a time when her son, Lewis, would return to school happy and healthy.

In March last year, the family from South Queensferry were devastated to find out Lewis had a serious form of leukaemia known as acute myeloid leukaemia (AML).

But after seven months in the Royal Hospital for Sick Children in Edinburgh, and many more months recovering at home, the five-year-old is back in school alongside twin sister Lauren.

Mrs Blair said their suspicions were raised when the youngster started suffering a lot of nasty bruises. A blood test confirmed their worst fears.

But the family took a positive attitude to Lewis's illness right from the outset. Mrs Blair said:

"The treatment he received was fantastic and we always had faith that the care he was getting was the best he could have. We are just very grateful."

Lewis's father, Campbell, said: "He's getting his energy back and is almost back to full fitness. It has been great to see him getting back to his old self."

Case Study 2: It felt like our world fell apart

WHEN Euan Mutch's parents were told their three-year-old son had leukaemia, the shock was almost too much to bear.

But more than a decade on, the 14-year-old is happy and healthy, just like other boys his age.

Euan, from Edinburgh, was diagnosed with acute lymphoblastic leukaemia in April 1998 after his parents became worried about how pale and tired he had started to look.

After a series of tests, they were told he had the disease and were given information on what treatment he would need.

"I suppose it felt like your world had fallen apart," his mother, Kirsten, said. "You see these things on TV, but you think it's never going to happen to you. We were in shock and then went through lots of emotions."

Mrs Mutch and husband, Alistair, were immediately worried if their son would be cured. Euan had to have treatment over three years, including several spells in hospital for chemotherapy.

"He was very little and initially he was in a lot of pain," Mrs Mutch said. "He needed morphine and in some respects he didn't realise what he had or the implications."

They were given support from children's cancer charity Clic Sargent at what was a very difficult time for the whole family.

Euan stopped treatment in April 2001 and after a few side-effects, such as a sore stomach and fungal foot infections, he has gone on to make a full recovery, returning to hospital once a year for check-ups.

"He's past the five years of treatment. We were given the all-clear in April 2006," his mother said.

Case Study 3: The treatment was really hard and it made me feel quite unwell

PAMELA Beattie was 14 when she was diagnosed with a rare form of cancer affecting bone and tissue.

Now 27, she is grateful for the care which saved her life, but is all too aware of the long-term effects such treatment can have.

As a teenager, Ms Beattie had a lump in her nose that kept bleeding. After several visits to the doctor and hospital she was finally diagnosed with Ewing's sarcoma, a tumour of the bone or tissue.

"To start with my mum did not want me to know about it when they thought something might be wrong. In the end it was the doctor who told me what it was. I just asked her what was the percentage chance of me living, and she said it was 50-50."

Ms Beattie, from Castlemilk, Glasgow, said she tried to stay quite positive throughout her treatment.

"The doctor went through what my treatment would be. I had to have radiotherapy every day for six weeks. I also had chemotherapy. I had to stay in hospital for a week every three weeks. The treatment was really hard and it made me feel quite unwell."

During her treatment, Ms Beattie did not go to school because she was bullied after losing her hair .

After two years, Pamela was told her tumour had gone into remission. But it remains dormant behind her nose and she has to have regular check-ups to make sure it does not return. She has been left with a number of side-effects, including hormone problems.