Owen Smith, consultant paediatric haematologist at Our Lady's Children's Hospital, Crumlin and professor of haematology at Trinity College Dublin is a man on a mission. He is keen for people to understand the remarkable success story of treating children with cancer – much of which, he says, is due to their participation in international chemotherapy drugs trials. But he is equally keen to point out that those aged between 16 and 23 are much less likely to take part in clinical trials and their chances of being cured of their cancer is halved.

“Children’s cancer is the success story of cancer across the board. Their cancers are not as complex as adults’ and can be targeted more easily,” he explains. Almost all childhood cancers in Ireland are treated in Crumlin, and about 60 per cent of these children have the chance to participate in international clinical trials, testing new combinations and dosages of chemotherapy and other medicines to treat their cancer. For some common childhood cancers – for example, acute lymphoblastic leukaemia – the participation rate in clinical trials rises to almost 100 per cent.

Essentially, clinical trials allow researchers to fine-tune the medical approach to childhood cancers, using stem-cell transplants as the last resort treatment only when necessary. “We give children with acute lymphoblastic leukaemia 15 drugs over about three years and we are curing 94 per cent of them. However, we realised that we were overtreating some of them so we developed an international trial to divide them into low-risk and high-risk patients so that we could treat them all more effectively,” explains Smith.

As a clinician and researcher, Smith believes strongly in the value of clinical trials for pushing forward the best treatments for cancer for young people. He is the principal investigator for a new international clinical trial that aims to advance treatment for acute myeloid leukaemia, the second most common leukaemia in children and teenagers. It is currently recruiting patients in Ireland. “Overall survival rates are lower for this type of leukaemia: currently about 65-70 per cent compared with 94 per cent for acute lymphoblastic leukaemia. This new trial, MyeChild, will allow us to find out which patients are high-risk and low-risk depending on the clinical features, the genetics and their response to treatment.”

Smith highlights the issue of lower survival rates among 16 and 23-year-olds with cancer. “The biggest issue is that over-16s can’t be treated at Crumlin, yet 80 per cent of their cancers are the same as the ones we see in children and young adolescents,” explains Smith, who is also the special adviser to the new Children’s Hospital Group. He says that paediatric and adult oncologists haven’t been very good at talking about treatment approaches. “This group of young people should be treated uniquely. Their biology and psychology is different to children and adults.”

Smith believes the right place to diagnose and treat 16-23 year olds with cancer is Crumlin, and ultimately the new children’s hospital at the St James’s Hospital campus. “We should have a centre of excellence for adolescents. There can be a lack of awareness about clinical trials and a lack of willingness to go into clinical trials in this group. There are fertility issues and socioeconomic issues in terms of work or college,” explains Smith, who represents children and adolescents on the cancer strategy 2016-2025. Long-term survivorship issues among children and teenagers who are successfully treated for cancer will also have to be dealt with.

What's it like to be in a clinical trial?

Orla Jackman, who is 18, was one of 2,500 children who took part in the international clinical trial for the treatment of acute lymphoblastic leukaemia between 2010 and 2012. "When I first found out I was on a trial, I didn't really understand it as I was only 12 but then I didn't mind as I realised that on the trial, I would be on treatment for a shorter time."

Orla's mother, Maire Jackman, took a leading role in managing Orla's care. She was trained to take Orla's blood and administer chemotherapy drugs via the central venous catheter (know as Freddie in St John's Ward at Our Lady's Children's Hospital, Crumlin). "I had the opportunity to be trained in a pilot scheme so that we didn't have to be in the hospital so much. This worked so well that more parents can partake now," she explains. Regarding her daughter's participation in a clinical trial, Maire says, "We trusted the hospital and did what they asked in terms of treatment. We felt blessed and lucky that there was a treatment in place to deal with Orla's cancer. The hospital staff were amazing. It's difficult getting through the treatment but we're better people from having gone through it."

Another 18-year-old, Caoimhe Phelan, also partook in the clinical trial for acute lymphoblastic leukaemia but had to leave the trial because she developed several severe infections. "I got sick a lot when I was on the trial so it was decided that I move back to the standard treatment. It was still tough on the normal drugs but the amount of infections I had reduced. I was very interested in the clinical trial though and I asked lots of questions. I'd recommend people try it out because if no one does it, there won't be any developments in treatment." Caoimhe's experience in hospital has prompted her choice of career, and she begins a pre-nursing diploma in the Cork College of Commerce this month.

Cancer Week Ireland: awareness, survival and living well

Cancer Week Ireland raises public awareness about the advances in early detection and treatment of cancer.

Organised by the Irish Cancer Society and Trinity College Dublin, it includes the Irish Cancer Society's 22nd national conference for cancer survivors on Friday, September 18th, and Saturday, September 19th, at the Aviva Stadium, Dublin.

Entitled Living Well with Cancer, the conference, which is free, will host more than 800 cancer survivors and medical professionals, and aims to help people affected by cancer to tackle the physical and emotional consequences that can be associated with cancer diagnosis and treatment.

A range of Irish and international speakers will share their experiences, stories and expert knowledge at the conference. They include Dr Keith Bellizzi on life after cancer treatment; Caroline Casey, social entrepreneur and adventurer, on valuing ability; Dr Paul D'Alton on why mindfulness might be bad for you; Dermot O'Neill, cancer survivor and broadcaster, on the restorative effects of gardening; Dr Jenny Westrup on living with, through and beyond a cancer diagnosis.

There will also be sessions about nutrition, relationships, art therapy, exercise, laughter yoga and side effects as well as specific workshops for men, carers and people with a secondary diagnosis.

It is supported by Bristol-Myers Squibb, Janssen, MSD and Roche. See cancer.ie/living-well or cancerweek@tcd.ie, or tel. 01-8962560.