Mum supports call for awareness of bone tumours after her son’s death

Over 150 children and young people are diagnosed with bone cancer each year in the UK. However, fewer than 50 of these patients survive for 10 years or more. With these long-term survival rates unchanged for over 15 years, the new research, led by experts at the University of Nottingham and funded by leading charity CCLG: The Children’s & Young People’s Cancer Association, emphasises the urgent need for earlier diagnosis and intervention.

Nicola Maxwell is advocating for the research, published in Archives of Disease in Childhood, after her son Kieran died in 2017 aged 18. Kieran was diagnosed with Ewing sarcoma in 2010 after it took 14 months from the start of his leg pain to being referred for an X-ray.

Nicola said: “Diagnosis was a whirlwind of a time, and it massively impacted Kieran. He went from being a physically fit 12-year-old who was constantly out with his friends, climbing trees and just having so much fun, to being in a wheelchair unable to do anything for himself.”

Despite successful initial treatment for his Ewing sarcoma, including an amputation of his left leg, the cancer returned in 2013 and became terminal in 2016.

With his remaining time, Kieran chose to raise awareness of Ewing sarcoma and the importance of early diagnosis.

Nicola said: “Kieran’s diagnosis should have been quicker. We thought we were lucky as it hadn't spread at initial diagnosis, but Kieran's tumour kept coming back. His first relapse was to his lungs, and the second relapse was to his heart.

“It is very difficult to treat relapsed bone cancers and survival is very poor. Early diagnosis has a positive impact on survival and the chance of recurrence drops quite significantly.

“I often wonder, if Kieran had been diagnosed earlier, would we have had the chance to save his leg and his life?”

The challenge of bone tumour diagnoses

Despite bone cancer being one of the 10 most common types of childhood cancer, young people and their families often don’t consider bone cancer a risk. Around one in 10 patients wait over three months after noticing symptoms before talking to a healthcare professional, and then often face further delays before a diagnosis is reached. GPs play an important role in the speed of diagnosis but may only see a case of childhood cancer once in 20 years.

GP Dr Paul Nathan explained: “There is a lack of education for GPs about children’s cancers and how they may present in primary care, whereas there is education regarding lots of adult conditions. In addition, childhood cancers are still seen as rare by primary care, so are not uppermost in GP's minds.”

Ashley Ball-Gamble, CEO of CCLG, said: “Raising bone cancer awareness in healthcare professionals is essential to ensuring that no child or young person’s symptoms are overlooked, and that treatment can begin as early as possible. By acting on these findings, we can give every patient the best chance of survival.”

Nicola shared the importance of making improvements: “If more people are aware of the signs and symptoms of bone cancers like Kieran’s, more children will be diagnosed early.

“As we are all aware, treating relapsed bone cancers is much more difficult and survival is very poor. Early diagnosis, however, has a positive impact on survival and the chance of relapse drops quite significantly.”

Shining a light on symptom awareness

The new research identifies the most common early signs of Ewing sarcoma and osteosarcoma with symptoms including pain, swelling, fever, unexplained fractures, and limping.

Professor David Walker, senior author of the paper from the University of Nottingham, said: “This paper is part of our Child Cancer Smart project, funded by CCLG, which focuses on identifying childhood cancers earlier in their development so that interventions can be streamlined and improved.

“Efforts to improve outcomes for children with bone tumours have not led to improvements in cure rates or disability rates for nearly two decades. It is time to look at whether accelerating diagnosis could change this static state of affairs.”

The findings from this work will be used to develop referral guidelines to help healthcare professionals recognise bone cancers sooner, potentially saving families from the heart-breaking consequences of a late diagnosis. These will be accompanied by awareness campaigns to educate families and doctors about the signs of bone cancer.

Since Kieran died, Nicola has been raising money for CCLG to fund research into childhood cancers, determined to help other young people and their families in the future. Find out more about Kieran Maxwell Legacy, a CCLG Special Named Fund, at https://specialnamedfunds.cclg.org.uk/kieran-maxwell-legacy/