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How to spot and act on the red flag signs of childhood cancer

Potential cases can be easily missed in primary care as symptoms mirror common ailments

Cases of childhood cancer can be easily missed in primary care and nurses should learn to spot the signs, listen to parents and ensure diagnosis is not delayed

  • Childhood cancers are fairly rare but if they are diagnosed quickly, treatment is often successful and survival rates high
  • Symptoms of childhood cancers can often be missed as they mirror common childhood ailments
  • Nurses need to be able to spot the possible signs of cancer and make rapid referrals to specialists

Jessicas family doctor thought her symptoms were caused by asthma. It

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Cases of childhood cancer can be easily missed in primary care and nurses should learn to spot the signs, listen to parents and ensure diagnosis is not delayed

  • Childhood cancers are fairly rare but if they are diagnosed quickly, treatment is often successful and survival rates high
  • Symptoms of childhood cancers can often be missed as they mirror common childhood ailments
  • Nurses need to be able to spot the possible signs of cancer and make rapid referrals to specialists
Fatigue in young children can be due to teething, not sleeping well or a cold, but could also be a sign of leukaemia
Fatigue in young children can be due to teething, not sleeping well or a cold, but could also be a sign of leukaemia Picture: iStock

Jessica’s family doctor thought her symptoms were caused by asthma. It took three more visits to the GP, and plenty of persistence from Jessica’s mother, before the true diagnosis – non-Hodgkin lymphoma – was finally confirmed.

Jessica’s story underlines the importance of primary care and other non-specialist nurses being alert to possible signs of cancer in young patients.

Jessica’s story: when cancer symptoms are missed

When Jessica was five, she developed symptoms that were a cause for concern to her mother, Carol. Here, she recounts her daughter’s experience.

‘Jess was a bubbly, energetic little five year old who enjoyed dancing, swimming, gymnastics and cheerleading. When I noticed that she was breathless, tired and low on energy, I took her to the doctor who told us she had asthma. At school she sat on the ground at break not wanting to play and her teachers noticed that something wasn’t right.

‘After a week of more wheezing, coughing and not acting her usual self, we took Jess back to the doctor and she was given antibiotics for a chest infection. When we took Jess to the doctor for the third time, we were told there was nothing wrong with her, but I insisted that we take her to hospital for extra checks and we got an appointment two days later.

‘I’ll never forget the day we took her to that hospital appointment. Jess was taken for an X-ray and the doctor told us that her lung had collapsed and was full of fluid. Two hours later we were blue-lighted to the hospital in Nottingham where she ended up on oxygen. The next morning, she had a drain put in her chest which drained three litres of fluid. She had very little normal lung to use and was extremely poorly.

‘They initially thought it was a chest infection that hadn’t been treated correctly but once the fluid was removed, they found a mass in her chest.

‘Within two weeks, she had started chemotherapy to treat non-Hodgkin lymphoma.’

Jessica’s treatment lasted two and half years and she is now doing well and has settled into life at secondary school.

(Case study courtesy of Children with Cancer UK)

Incidence and survival rates for childhood cancer

Cancer in children is rare. According to Cancer Research UK (CRUK), there are about 367,000 new cases of cancer diagnosed in the UK each year. Of these, fewer than 2,000 will be in children.

Treatment is often successful. In England and Wales, more than 80% of patients will survive childhood cancer for five or more years. And while each year about 240 children in the UK die from the disease, cancer in children accounts for less than 1% of all UK cancer deaths, according to CRUK.

But because childhood cancers are relatively uncommon, the causes of cancer in children and adolescents are difficult to determine.

Children with Cancer UK says that despite a wealth of research into the reasons why children and young people develop cancer, ‘much uncertainty remains’ – although the charity suggests there is ‘a great deal of support’ for the role of infection in the development of childhood leukaemia.

Most common children's cancers infographic

Parents often blame themselves for their child’s cancer diagnosis

Lifestyle does not play a significant role in childhood cancer. However, malignant melanoma accounts for about 10% of UK cancer cases among young people aged 15-24, according to data from the National Cancer Registration and Analysis Service (NCRAS).

Other skin cancers account for a further 5% of cases and both these cancer types are ‘highly amenable’ to primary prevention, the NCRAS says. Cervical cancer, which accounts for 6% of cancers in girls and women aged 15 to 24, is also largely preventable through vaccination against human papillomavirus.

‘The biggest challenge in primary care is having an awareness of childhood cancers, of the general symptoms and knowing that they can often mirror other childhood illnesses’

Hanna Simpson, Teenage Cancer Trust teenage and young adult lead nurse at The Christie NHS Foundation Trust

But parents’ worries that their child’s cancer is caused by something the parents did or didn’t do are groundless, according to Young Lives vs Cancer. ‘This is not the case so you shouldn’t feel guilty or that you’re to blame for your child’s cancer,’ the charity states.

Hanna Simpson, Teenage Cancer Trust teenage and young adult lead nurse at The Christie NHS Foundation Trust
Hanna Simpson

Hanna Simpson, Teenage Cancer Trust teenage and young adult lead nurse at The Christie NHS Foundation Trust, says that identifying cancer in children is not always straightforward: ‘You will hear how easy it is to attribute symptoms of cancer to normal childhood illness.

‘Fatigue, for example: in a child under three, you would attribute that to a raft of things, such as not sleeping well, teething or a cold.’

Fever and fatigue can be a sign of leukaemia

Lumps and bumps, fever, picking up lots of viruses – all these are also common in childhood.

‘But fever can be a sign of leukaemia and so can fatigue,’ says Ms Simpson. ‘And headaches or vomiting first thing in the morning can be signs of a brain tumour.’

If a child vomits but then appears fine for the rest of the day, parents may not be unduly concerned, especially if the family’s GP or health visitor, for example, assumes that a virus is causing the symptoms.

‘So the biggest challenge in primary care is having an awareness of childhood cancers, of the general symptoms and knowing that they can often mirror other childhood illnesses.’

Ms Simpson adds: ‘There is a school of thought that says a GP will only see a child or young person with cancer once in their whole career.’

Pattern of symptoms and signs may point towards cancer

The charity Children’s Cancer and Leukaemia Group says that in its early stages, cancer may share the signs and symptoms of other childhood illnesses.

But children usually recover quickly from less serious illness so lingering symptoms should be investigated. It is a pattern of symptoms and signs rather than individual features of illness that may point towards cancer.

The impact of COVID-19 on children’s cancer services

The psychological effects of the COVID-19 pandemic on young people already diagnosed with cancer, has led to many finding it difficult to cope
Picture: iStock

The first stages of the ongoing pandemic had a huge effect on cancer services as resources were diverted to treating people with COVID-19 and vulnerable patients were urged to shield.

The Forgotten ‘C’, a study by Macmillan Cancer Support published in October 2020, suggested that 50,000 people in the UK were living with cancer that had not been diagnosed. An estimated 33,000 should have started treatment but had not done so because of the pandemic.

The report did not single out the numbers of children and young people affected, but urgent referrals from primary to secondary care for children’s cancer in England showed a substantial decline.

The serious psychological impact of the pandemic on young people already diagnosed with cancer was laid out in a report by Young Lives Vs Cancer and CLIC Sargent published in September 2020.

A survey of 80 young people carried out by the charity found that 42 who responded felt they were not coping with the challenges the situation presented.

‘It’s making it a lot harder to be social,’ one young person with cancer told the charity. ‘I have no one who knows me well in a social support bubble near me to talk to.’

Common cancer symptoms in children include:

  • Feeling very tired all the time, with pale skin.
  • Repeated infections or infections that don’t get better.
  • Persistent flu-like symptoms.
  • Unexplained or excessive bleeding.
  • Bruising easily or pinpoint round spots on the skin (petechiae).
  • Constipation, diarrhoea or a feeling of not having ‘finished’ when going to the toilet.
  • Any unexplained lump, swelling or unusual firmness, especially in the abdomen, neck, chest, pelvis or armpits.
  • Unexplained weight loss.
  • Slow growth.
  • Noticeable changes in behaviour such as screaming and crying in young children.

What to do if you suspect a child may have cancer

Macmillan Cancer Support has produced rapid referral guidelines, endorsed by the National Institute of Health and Care Excellence, to help practitioners decide the urgency of suspected cancer in children and young people, as well as adults.

The guidelines underline how important it is that possible cancer symptoms are investigated as quickly as possible.

For example, primary care staff should consider a ‘very urgent direct access’ X-ray appointment – within 48 hours – for any child or young person with unexplained bone swelling or bone pain. Again, an urgent appointment within 48 hours should be considered for children and young people with newly abnormal central neurological function, including symptoms such as new-onset seizures, posture-related headaches and headaches accompanied by vomiting.

To eliminate leukaemia, a very urgent full blood count (within 48 hours) should be arranged for children and young people with a range of unexplained signs or symptoms that include pallor, persistent fatigue, fever, persistent infection, generalised lymphadenopathy, persistent or unexplained bone pain, bruising or bleeding.

Repeated attendances in primary care are a red flag

Ms Simpson says it is well documented that children and young people often have repeated attendances in primary care – often being seen up to ten times before they receive a cancer diagnosis.

‘It’s these repeated attendances which flag that this is not going away and should be escalated,’ she adds.

Delayed referral can have a profound effect on outcomes, she says.

‘A child with leukaemia, if they present two or three times at the start of the month with fatigue and generally feeling unwell, by the time they present three or four weeks later they’re going to have bruising, their blood count is going to be low, their leukaemia burden is going to be higher.’

As a result, when the child is first seen by a specialist cancer team, they are going to be much sicker.

‘And they’re going to be in a much worse condition to take their treatment,’ Ms Simpson says.

Learn to trust what parents say about their child’s symptoms

It might be thought that a child’s restricted ability to articulate symptoms clearly may contribute to delays in referral. But that’s not necessarily the case, says Ms Simpson.

‘Parents are adept at picking up on the subtle symptoms that children present with. It’s about believing that parents know their children well.

‘So when a parent says to a health visitor that their child is not looking around the room properly, they’re holding their head in one particular position, or they like to look in this direction but not the other direction, it’s about recognising that parents know their children because that might be a symptom of a brain tumour.

Ms Simpson adds: ‘It’s not that we want the first thought of every health visitor, GP or school nurse to be that it’s a childhood cancer but it’s just having that awareness.

‘Then, if the parent says, three weeks later, that the child now has a little bit of a squint, they’re prompted to refer appropriately to secondary providers.’


Further information


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