Candlelighters, the children’s cancer charity, is marking World Cancer Day on February 4th by recognising the first year’s work of the Candlelighters Supportive Care Research Centre (CSCRC), at The University of York.
Supportive care is an emerging area of research which looks at improving the care surrounding cancer treatment, rather than finding cures. It includes treating side effects, managing pain and reducing infection.
Initial investment from Candlelighters enabled the opening of the groundbreaking centre – the first to focus on improving care for children with cancer. The CSCRC is led by Professor Bob Phillips, one of the world’s leading experts in childhood cancer research.
Almost 400,000 people are diagnosed with cancer in the UK each year, including over 2,400 children and teenagers. An often-overlooked issue is the impact of treatment and management of side effects which can be debilitating and, at times, deadly.
Emily Wragg, CEO of Candlelighters says: “Amazing progress has been made in understanding and treating childhood cancers. Today, around 80% of children or young people diagnosed with cancer will survive.
“This is an incredibly encouraging statistic, but despite advances in curative medicine, little has been done to improve the experience of living through and beyond cancer. Children and young people often receive cancer treatments designed for adults and the impact on their smaller bodies can be severe. They suffer horrible side effects which can be traumatic, permanent, and even deadly.”
Emily explains that of all children who sadly die with cancer, one in three die not because of the cancer itself, but because of the side effects of their treatment. Worse still, research into reducing these side effects for children is under-resourced, sparse, and inadequate.
She adds: “A significant part of the first year’s work for the Candlelighters Supportive Care Research Centre has been on the physical side effects of cancer, including the prevention of mucositis – the ulcerated mouth, sore stomach and diarrhoea that can happen after cancer treatment.”
Professor Bob Phillips explains: “Mucositis is a side effect that’s not well known about. It’s when chemotherapy or radiotherapy causes ulcers, anywhere in the guts, from the mouth down to the bottom.
“It can be extremely painful, so much that children can’t eat or drink, and need to be in hospital, on strong painkillers and intravenous fluids. Young people who have this tell us it’s extremely distressing as it chains them to the hospital and makes even communicating difficult.”
Bob adds: “There are things we can do to reduce the chance of this happening or try to make it heal better, using ‘photobiomodulation’ or PBM.
“This is a light therapy which can prevent or treat ulcers and is mainly used in the mouth and throat area. We’re working with The Leeds Dental Institute to help more children access this therapy at hospitals around the country. We’re also looking to develop more techniques to use this in other areas of the body affected by ulcers.”
Jorden’s story:
Jorden Slack, a childhood cancer survivor, now 34, was diagnosed with rare acute promyelocytic leukaemia, aged 11. She endured a gruelling six rounds of chemotherapy, across more than six months in hospital.
Jorden says: “For me, a big impact of the chemotherapy was the mouth ulcers – it’s not just a single ulcer, it’s an entire mouth of ulcers, from your mouth down your throat and digestive system.
“The treatment makes you prolifically sick, which then aggravates the ulcers that you’re trying to heal. You get all these cravings for food, but you can’t physically eat. It’s a horrendous cycle and it’s miserable.”
Commenting on the research work on mucositis, Jorden says: “The chemotherapy treatment is hard enough as it is, without then having that extra pain and discomfort on top.
“If there’s a way to make children a bit more comfortable during a scary, horrible time, that’s what we need to do. And for parents to not have to see their child so poorly is a bonus; I couldn’t communicate at points because I was that poorly with the side effects.”
Learn more about what Candlelighters do, and how you can make a difference for children: https://www.candlelighters.org.uk/howyoucanhelp/
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