Early diagnosis saves lives
Spotting cancer in children and young people can be difficult. This is because cancer symptoms in children can be vague and similar to common childhood illnesses making it difficult to spot.
Delays in diagnosis can mean that cancer has grown bigger or has spread around the body meaning treatment can be less effective.
Most of us are aware of cancer symptoms in adults such as lumps and coughs that don’t go away but a first sign of cancer in children can be a chest or ear infection that just doesn’t go away or keeps coming back.
We undertook a public survey in 2019 which found that surprisingly 6 in 10 people are not confident in spotting the signs of cancer in children even though the risk of getting cancer by 25 years old is only 1 in 180.
We want to help raise awareness of the signs and symptoms of cancer in children so that we are all more confident in spotting the signs and symptoms of cancer in children and young people.
Our early diagnosis ChildCancerSmart project aims to prevent referral delays by developing clear evidence-based accredited guidelines for GPs and A&E staff to help them in making quick decisions about cancer referrals.
Our family stories
Ethan was born prematurely, and his liver cancer diagnosis was picked up at a routine hospital appointment one year after his birth in 2014. The doctor who assessed Ethan sent him for scans and tests the same day and a diagnosis was given within a few days. Ethan had no signs or symptoms that his parents picked up on. He received chemotherapy and a liver transplant in July 2014.
Ethan’s father, Rob, commented on Ethan’s diagnosis: “We were told Ethan would need a transplant from the beginning of the process and after just seven months, he received a new liver. We were home after one week in hospital. Five years on, Ethan is still cancer free.
“We are so incredibly lucky that Ethan’s cancer was caught as early as it was and our story could have been very different if there were any delays to his diagnosis. The truth is that we do not know what other symptoms he may have had, and it is quite possible we may not have picked up on the fact he had cancer until it was too late, showing just how truly important it is to increase public awareness.”
Lewis, who is now 16, was diagnosed with osteosarcoma in 2017. Lewis began having knee problems and pain in 2014 and his diagnosis took three years. Lewis’ leg was amputated above the knee in November 2017.
Lewis' mum, Marie said: “The journey to Lewis’ diagnosis was long and incredibly tough on our whole family. We were back and forth to A&E with a painful lump on Lewis’ knee for three years before our GP sent us for an MRI and it is quite difficult to come to terms with the fact that a simple X-ray at the beginning could have prevented him having to have his leg amputated.
“Our GP was a huge support throughout the process and once diagnosed, Lewis’ treatment happened very quickly, but his story really does illustrate the lack of awareness of cancer in children. We could have never imagined Lewis’ football injury could be cancer, it’s just not something you think will happen to your child, but I instinctively knew something was not right. Lewis’ determination and independence has been inspirational, and we are slowly finding a new normal as a family. We just hope that by raising awareness of childhood cancer signs and symptoms, we can prevent other children experiencing the same delays that we did.”
2-year-old Freya was taken to the GP numerous times and visited A&E 6 times with sickness before receiving the diagnosis of a life-threatening brain tumour. She underwent surgery within a week, followed by chemotherapy. Due to chemotherapy being unsuccessful, Freya is now undergoing ground-breaking proton therapy in Manchester, every day for 6 weeks.
Charly was first diagnosed with Ewing’s Sarcoma (a rare form of childhood bone cancer) in 2008 when she was 16 years old, after it took over a year to be diagnosed from when her symptoms first appeared. Now 27, Charly experienced some serious late effects as a result of the incredibly intensive treatment she received and still needs annual hospital check-ups.
18-month-old Pippa had excessive thirst for 3 months until she underwent hospital tests. Although these tests revealed that her symptoms were behavioural, Pippa’s thirst, together with other symptoms, meant that her mum Claire believed there was a deeper issue. After blood tests in November last year, Pippa was diagnosed with Diabetes Insipidus and then Langerhans cell histiocytosis, a very rare form of cancer. Pippa is now 3 and undergoing chemotherapy every 3 weeks. She will receive hormone therapy and regular MRI scans for the rest of her life after the damage caused to her pituitary gland.
Lacey kept being unwell as a 4-week old baby. After six months of continually visiting the GP and hospitals, she was finally diagnosed with acute myeloid leukaemia (AML). Lacey had chemotherapy and thankfully has now been in remission for almost 8 years. In December last year, her little sister Imogen started feeling very tired and had persistent urine infections and fever. Her tests were normal but her mum Claire recognised similarities with Lacey’s symptoms so took her back to the GP. Imogen was diagnosed with leukaemi (ALL) in January this year and is now facing cancer treatment for the next two years. The impact on Claire and her family from the rare event of having two children diagnosed with cancer is simply unimaginable.