It is a question any parent would dread to even consider. But as she sat face-to-face with the GP, Ruby Fuller’s mother summoned all of her courage and asked the doctor outright: ‘Could it be cancer?’
For weeks, her daughter – a normally fit and lively 17-year-old – had been becoming more unwell, with a growing list of troubling symptoms. Repeatedly they had made appointments with doctor after doctor at the local surgery. And repeatedly they had been told the teenager was just ‘under the weather’, stressed, or suffering from allergies.
But with every passing day, Ruby’s mother Emma Jones was becoming increasingly convinced something far more sinister was affecting her daughter’s health.
In desperation, she googled Ruby’s symptoms: shoulder pain, tiredness and swollen face. The search results were terrifying.
Ruby Fuller died in May 2020, ten months after her initial diagnosis
A family photo shows Ruby’s raised lymph node on her neck
Yet the response when Emma dared to ask if her worst fears could be true highlights a shocking failure in the way the health service treats children and young people.
Laughing off the very suggestion of cancer, no doubt in an attempt to be reassuring, the doctor simply replied: ‘Not in a 17-year-old. She’s far too young.’
Tragically, the GP was wrong.
In total, Ruby was dismissed seven times by six different doctors before a new GP – on her eighth appointment – finally recognised the raised lymph node on her neck and the mysterious bruising on her abdomen as crucial warning signs, and referred her for tests.
Within days the schoolgirl and her family received the devastating diagnosis – Ruby was suffering from an advanced and aggressive lymphoma, a type of immune system cancer where white blood cells multiply and clump together to form tumours.
By the time she was diagnosed, she had a three-and-a-half-inch mass in her chest that could have stopped her breathing at any second. And despite months of gruelling chemotherapy, followed by a cutting-edge stem-cell transplant, it later returned as a vicious and untreatable form of the blood cancer leukaemia.
Knowing she was going to die, Ruby chose to spend her final days at home with her family and beloved cats. As her strength faded, she reminisced about holidays they had spent together, and she recalled the spot where they’d eaten ‘the best chocolate brownies’.
Brave Ruby gives a ‘V for victory’ sign in hospital but her cruel form of cancer could not be beaten
The happy memory turned out to be her final words.
In May 2020, ten months after her initial diagnosis, Ruby died, aged just 18.
Although her case is shocking, experts warn that similar cases are all too common – and that even though progress has been made in treating cancer in the young, there are still ‘unacceptable’ delays in diagnosing the disease, partly because GPs are struggling to identify key warning signs.
Across the UK, numbers of children and young people diagnosed with cancer have risen more than 15 per cent since the 1990s, according to the Royal College of Paediatrics and Child Health. About 3,755 under-25s are now diagnosed with cancer each year, including 1,645 under 15.
Research also suggests that – as in Ruby’s case – opportunities for early diagnosis are being missed.
An NHS survey published last year showed that in 41 per cent of cases where a child was diagnosed with cancer, their families had been forced to take them to the GP at least three times with the same symptoms before they were referred for tests.
Now Ruby’s parents are joining forces with a leading cancer charity to try to speed up diagnosis by making GPs and the public more aware of the signs of cancer.
Along with Ruby’s father Dylan Fuller, her mother Emma, a 54-year-old environmental consultant from London, believes doctors must also pay more attention to concerns raised by children’s carers or parents.
She said: ‘It took eight GP visits before Ruby was diagnosed. She hadn’t been to the GP for years – but as she kept getting more unwell, she kept going back to the surgery again and again. But she wasn’t taken seriously. She was dismissed – made to feel that she was being an over-anxious teenager and I was being an over-anxious mother.
‘We will never know whether Ruby could have been saved if she had been diagnosed earlier. It is absolutely critical that GPs know what to look out for and, crucially, take parents’ concerns seriously.’
Her calls are backed by the Children’s Cancer and Leukaemia Group (CCLG).
Jeanette Hawkins, the charity’s chief nurse, said: ‘The speed of diagnosis for children and young people in the UK is not as good as it could be. Ruby’s case is a stark example – but sadly not unusual.
‘We frequently hear from families who had to take a child to their GP more than five times with the same set of symptoms before they were diagnosed.
‘What is needed is far better awareness of the symptoms of childhood cancer among both the public and healthcare professionals, including GPs.’
So why are some GPs apparently struggling to spot cancers in children? And what are the key warning signs that doctors – and parents – should look for?
In the UK, there are about 385,000 new cases of cancer diagnosed every year. But fewer than one in 100 occur in under-25s. Experts say the rarity of childhood cancer means that many GPs do not think to look for it.
‘An individual GP may only see one child with cancer in their practice every five to ten years,’ says Mrs Hawkins. ‘So even when a child presents with cancer
symptoms, they may not think it’s likely to be the disease.’
Another issue is that children tend to be affected by different cancers to adults, meaning their symptoms are not the same.
In adults, breast and prostate cancer are the most common forms for the disease, followed by lung and bowel cancer. Symptoms for these typically include fatigue, weight loss, changes in bowel and bladder movements and, in the case of breast cancer, lumps.
But in under-25s, blood cancer accounts for about a third of cases, followed by brain and spinal cord tumours. The first signs of these cancers may include fatigue and weight loss, but they can also lead to bruising, night sweats, vomiting, headaches and temporary loss of vision or blurring.
Experts say these are symptoms that can be mistaken for common childhood illnesses such as colds and stomach bugs.
Ruby’s parents say her case highlights how serious symptoms can be repeatedly dismissed.
In April 2019 the teenager developed niggling shoulder pain, but assumed it was from lugging around her heavy schoolbag. Increasingly tired, she went to see a GP who offered her blood tests – which came back negative. Over the next three months she went back and forth to the surgery as her condition deteriorated and new symptoms appeared, including puffy eyelids and waking up with a massively swollen face.
One doctor suggested allergies and prescribed antihistamines. Another was unable to explain bruising on her abdomen and offered her steroids as an extra treatment for allergies.
In desperation, her mother did her own online research.
Emma explained: ‘I was getting more and more worried. I googled Ruby’s symptoms and read about lung cancer cases where a tumour pressing on a vein in the chest can cause swelling. So we went back to the GP.
‘When the doctor laughed and said it couldn’t be cancer, it should have been a relief. But her symptoms carried on getting worse.’
After Ruby returned from a few days away on a geography field trip, she was so unwell her mother booked another appointment.
She said: ‘This time another GP looked at Ruby’s notes and said, “You haven’t been here for three years, now this is your eighth visit to the GP in three months. What’s going on?”
‘He spent half an hour talking to us. He felt her glands, which were swollen. He took her pulse which was very high. He looked at the odd bruising. Then finally he referred Ruby to a specialist.’
In July the teenager was diagnosed with stage-three acute lymphoblastic T-cell non-Hodgkin’s lymphoma. After months of chemotherapy, Ruby underwent a stem-cell transplant, where malfunctioning cells of her immune system were replaced with donor cells. In March 2020 she was discharged, and it looked as though the treatment had worked.
Her mother said: ‘The new immune system seemed to take hold. Things felt positive and Ruby was feeling better than at any time since her diagnosis. It felt like we could breath again.’
After six weeks, however, the cancer returned as an untreatable form of leukaemia. She died 22 days later.
Ruby – who was passionate about the environment and had taken part in climate change demonstrations – asked to be remembered by the motto Live Kindly, Live Loudly, which is the name of the fund her family use to raise money for CCLG in her memory.
In a photograph on a beach trip just before Ruby’s initial diagnosis, the raised lymph node is visible on her neck.
Emma said: ‘We now know this is a key symptom of lymphoma. And the unexplained bruising should also have been a red flag for blood cancer. Why weren’t these things picked up?’
Some experts point out that GPs have to balance investigating the possibility of rare illnesses with treating countless patients living with clear-and-present chronic conditions such as heart disease and dementia.
‘GPs will never be 100 per cent effective at spotting childhood cancer,’ says Alastair Sutcliffe, professor of general paediatrics at University College London. ‘As a country, we are leading the world in effectively treating and curing it, but we need to up our game when it comes to diagnosis.’
Campaigners have proposed measures to reduce the number of missed adolescent diagnoses.
Ruby’s parents are now backing calls for new legislation – called Jess’s Law – which would require GPs to elevate a patient’s case to an urgent review if they come to the surgery three times complaining about the same thing. The law is named after 27-year-old Jess Brady, who died in December 2020 after her cancer was missed 20 times by four GPs over six months.
The aerospace engineer from Hertfordshire experienced a range of a worrying symptoms include abdominal pain, coughing and vomiting. But Jess was diagnosed with advanced adenocarcinoma – a cancer that begins in the mucus-producing glands that line the organs – only after she visited a private doctor. She died three weeks later.
The charity CCLG has also developed a traffic light system of warning signs of adolescent cancer for doctors and parents. Symptoms classified as ‘red’ should spark an urgent referral.
For example, children with persistent vomiting on awakening or any unexplained abdominal mass should be sent to a gastrointestinal specialist. Widespread bruising should be referred to haematology, while swallowing difficulties that do not have a clear cause must be sent to an ear, nose and throat specialist. Key signs for a neurology referral include abnormal gait or co-ordination issues, as well as confusion or disorientation with a headache – or persistent headaches in a child under four.
The system has been backed by the NHS regulator, the National Institute for Health and Care Excellence. The charity is now campaigning for posters displaying the traffic light system to be displayed in GP surgeries and hospitals.
Separately, the Royal College of GPs is now developing teaching materials for GPs to educate them on the signs of adolescent cancer.
An NHS spokesman said: ‘NHS England extends its deepest sympathies to the family of Ruby Fuller, and is working hard to ensure every child with cancer receives a prompt diagnosis and high-quality care.’
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