
Kieran Maxwell's mum highlights urgency of bone cancer diagnosis
A mum whose teenage son died after being diagnosed with bone cancer has called for more awareness of the disease's symptoms.Kieran Maxwell, from Heighington, County Durham, was told he had Ewing sarcoma in 2010 and had his left leg amputated before his death, aged 18, in 2017.His mother, Nicola, said it took 14 months for Kieran to be sent for an X-ray after first seeing a doctor about pains.More than 150 youngsters in the UK are diagnosed with bone cancer each year, according to The Children & Young People's Cancer Association (CCLG), but fewer than 50 of those patients survive for 10 or more years.
Ms Maxwell, who now lives in Darlington, said: "Bone cancer was never even mentioned by doctors as a possibility because it's so rare in young people."The guidelines said you had to have persistent bone pain and see a doctor three times to be sent for an X-ray, but Kieran's pain was intermittent and he had no other symptoms."He wasn't losing weight and he was still active. They put it down to growing pains."I believe it could have been caught earlier. Chances were missed."The amputation of Kieran's left leg in 2011 appeared to have been successful in treating the disease and, using a prosthetic leg, the following year he took part in the Olympic Torch relay ahead the games being staged in London.Stumbling to the ground as he carried it through Bishop Auckland, he carried on after being helped up.
'Poor' survival rate
Then, in 2013, doctors found cancer had spread to Kieran's lungs and his heart.It was, Ms Maxwell says, a blow that seemingly "came out of nowhere" as he had achieved several personal bests in sporting competitions just a couple of months earlier.He set up the Kieran Maxwell Legacy charity in the hope of funding a researcher to look into the illness.
Ms Maxwell added: "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?"
Signs and symptoms
Bone cancer can affect any bone, but most cases develop in the long bones of the legs or upper arm.Osteosarcoma is the most common type, mostly affecting people under 20, while Ewing sarcoma most commonly affects people between 10 and 20. Chondrosarcoma tends to affect adults aged over 40.The main symptoms include:Persistent bone pain that gets worse over time and continues into the nightSwelling and redness (inflammation) over a bone, which can make movement difficult if the affected bone is near a jointA noticeable lump over a boneA weak bone that breaks more easily than normalProblems moving around – for example, walking with a limpSource: NHS
Early treatment 'essential'
CCLG says about one in 10 patients wait more than three months after noticing symptoms before talking to a healthcare professional, and then often face further delays before a diagnosis is reached.The charity's CEO, Ashley Ball-Gamble, believes raising awareness among health professionals is "essential to ensuring no child or young person's symptoms are overlooked, and that treatment can begin as early as possible".It has funded research by the University of Nottingham stressing the need for earlier diagnosis and treatment.Prof David Walker, senior author of the paper, explained: "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."
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Wales Online
a day ago
- Wales Online
Dying dad denied treatment that will give him more time with kids
Dying dad denied treatment that will give him more time with kids Former Welsh Rugby Union commercial director Craig Maxwell was first diagnosed with incurable lung cancer in September 2022 and has raised £1.6m for charity since Craig Maxwell with his children Zach and Isla after rowing 72 miles from Tenby to Cardiff (Image: Mark Lewis ) A terminally ill former Welsh Rugby Union commercial director has had his request for a potentially life-extending drug turned down in the midst of his latest fundraising efforts. Craig Maxwell, who was diagnosed with incurable and inoperable lung cancer back in September 2022, has been undergoing chemotherapy alongside using amivantamab - a drug not yet approved in the UK, but one that Maxwell says could give him an extra "invaluable" six months with his family. Having previously been turned down for funding, Maxwell had to pay for the first quarter of his treatment himself - recently telling WalesOnline it cost him nearly £22,000. The treatment is approved in the US and some parts of Europe but is not yet freely available in the UK - with it currently going through the NHS approval process. Prior to applying to a Individual Patient Funding Request panel, Maxwell said that the costs of continuing on the drug would be around £100,000. Since his diagnosis, Maxwell, who also previously worked for the Six Nations, has completed the London Marathon, cycled from Cardiff to Paris and, last year, he walked the entire 780-mile Wales Coastal Path in just 26 days, delivering the match ball ahead of Wales' Six Nations clash with France. In doing so, he has raised around £1.6m for charities and will not use any of that money for his own treatment. Article continues below Most recently, he rowed from Tenby to Cardiff ahead of the Champions Cup final at the Principality Stadium. It was during this latest challenge when he discovered his request for funding had not been successful, despite the fact that his latest results show that his cancer is "stable and has stopped growing". "They feel it's not making a considerable benefit to my quality of life versus the cost," he told BBC Radio Wales Breakfast. "I've found that hard to accept, because in my position, six to nine months is invaluable. "There's no cost you can put on that, to have six or nine months with my family." Maxwell told the BBC that some private donors had offered help, but, as he faces having to continue paying for the drug himself, he is planning to go through the appeals process to overturn the decision. "The IPFR panel exists to support patients like me in Wales," he added. "I understand the drug is very expensive. "But it is the best thing for me at the moment and it was recommended to me by multiple professionals." He added that his his family are trying to enjoy their time together, as he recognises that "staying close is important". "There have been some amazing moments and experiences throughout this journey and I have to savour them," he said. Cardiff and Vale University Health Board told the BBC it had "worked extensively" with Maxwell to raise awareness of his condition. Article continues below "We are unable to comment further on individual patient cases," the health board added.


Daily Mirror
2 days ago
- Daily Mirror
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Powys County Times
27-05-2025
- Powys County Times
Childhood cancers which take longest to diagnose revealed in new study
Teenagers and children with bone tumours in the UK are facing longer waits for cancer diagnosis, according to a new review. Babies and those with kidney cancer wait the shortest period before they are diagnosed, academics found. Researchers, led by University of Nottingham, analysed data on 2,000 children diagnosed with cancer between September 2020 and March 2023. Untreated, tumours grow bigger and can spread around the body, requiring more extensive surgery and more intensive therapies to offer a cure. On average, children with cancer were diagnosed within 4.6 weeks. While some children were diagnosed on the same day their symptoms began, others waited up to six years, experts found. The time to diagnosis was found to be longest among 15 to 18-year-olds, who waited for an average of 8.7 weeks before they were told they had cancer. And those with bone cancer were found to wait for more than three months on average, or 12.6 weeks. Meanwhile children under the age of one waited just 3.7 weeks before diagnosis and children with kidney cancer, also known as renal cancer, waited for an average of 2.3 weeks before they were diagnosed. But they said that overall, half of children and young people diagnosed with cancer in the UK are waiting for four weeks or more to be diagnosed. They also studied where children were diagnosed and found the majority (67%) were diagnosed after a trip to A&E, after an emergency referral or emergency admission to hospital. Some cancer types, including bone tumours, soft tissue tumours Langerhans Cell Histiocytosis and brain tumours, were associated with a higher number of medical visits before diagnosis. Writing in the Lancet Regional Health – Europe, researchers said their work highlights 'disparities for age and diagnostics groups' when it comes to cancer diagnoses as they called for more efforts to 'accelerating diagnosis' for those facing 'lengthy' waits. They said the findings could help inform health officials as they draw up a national cancer plan for England. Dr Shaarna Shanmugavadivel, from the School of Medicine at the University of Nottingham, said: 'For the first time, we understand the current landscape of childhood cancer diagnosis in the UK. 'There is an urgent need to focus efforts on young people and tumour types such as bone tumours that are still experiencing lengthy intervals. 'Earliest possible diagnosis is key as time is crucial. 'Untreated, tumours grow bigger and can spread around the body, requiring more extensive surgery and more intensive therapies to offer cure. 'The findings will help focus efforts towards closing the gap for these groups, ensuring more children and young people receive a diagnosis sooner.' Ashley Ball-Gamble, chief executive of CCLG: The Children and Young People's Cancer Association, and co-author of the study, added: 'It's crucial that we understand why certain groups, such as older teenagers, or those with certain cancers, such as bone and brain tumours, are likely to face a lengthier diagnosis. 'By recognising these differences, we hope to work towards faster diagnoses and improved survival rates.'