Childhood cancer survival rates in the UK are at the highest they have ever been, but ‘late effects’ of cancer can develop in adulthood, and survivors need continued support, which is where pharmacy can help

Around 1,800 children are diagnosed with cancer in the UK each year, according to the charity Cancer Research UK, and new figures from the Office for National Statistics say that childhood cancer survival rates are at the highest they have ever been. Children diagnosed with cancer in England are now more likely to survive for at least five years, and 10-year survival rates are increasing.

However, Macmillan Cancer Support has warned about the so-called ‘late effects’ of cancer, which can develop in adulthood, and has highlighted the need for continued support for cancer survivors. 

Problems in later life

Leukaemia is the most commonly diagnosed cancer in children, with brain, other central nervous system (CNS) and intracranial tumours, and lymphomas accounting for more than two in three cancers diagnosed in children in the UK. 

But because of the nature of the disease, many children who survive cancer will live with long-term side effects which may have an impact on them as adults. In addition, studies have shown that childhood cancer survivors are more likely to develop conditions such as heart disease or lung damage when they reach adulthood. 

“There are often complications from the disease and also from the treatment,” explains Dr Donald Macgregor, consultant paediatrician and senior lecturer in child health. 

“For example, brain tumours may affect hormone function in some patients, who may then need replacement treatments. Or some adult patients may require treatment with growth hormone to increase the minerals in their bone, and their muscle bulk.” 

As for complications from treatment, Dr Macgregor, who is also president of the Scottish Paediatric Society, and a spokesperson for the Royal College of Paediatrics and Child Health (RCPCH), says there are issues associated with surgery, chemotherapy and radiotherapy. “For example,” he says, “complications arising from the disease could be something like if you had a kidney tumour and the kidney was removed then you are at increased risk of renal problems in later life. This means you need to have an increased awareness of your blood pressure, with an annual check of BP done and urine screening to look out for increased amounts of protein in the urine.” 

Dr Macgregor continues: “Radiotherapy has its problems as well. It may also cause hormone problems if directed at the brain, even if the tumour itself didn’t cause problems. There may be some degree of learning difficulty after brain cancer treatment, as well as hearing or blindness problems, so these patients could need help accessing information about medicines, for example. If radiation has been given to the lungs or heart, this may cause restrictions in function in later life.

“With chemotherapy, the long-term effects can weaken the heart muscle and affect its function, so those patients need to take selective exercise which is aerobic rather than body building, and be screened regularly in hospital.

“There is also a group of patients with hormone disturbances after leukaemia who are at increased risk of being overweight or obese, so they are susceptible to heart disease and diabetes, and regular screening is useful for them too.”

Care from childhood

Regular screening in adulthood is one way to keep an eye on the health of childhood cancer survivors, but how can children who have cancer reduce their risk of developing such conditions?

The nature of the support provided to children or young people diagnosed with cancer can have significant implications for the quality of survivorship, as well as for NHS costs.

The Department of Health (DH) has launched personalised recovery packages to help children receive tailored support once their treatment has stopped, but we know that for children and young people diagnosed with cancer, the period of sustaining their recovery can last for many decades, during which time their needs and preferences will change. 

In its 2013 report in partnership with Macmillan Cancer Support and NHS Improvement – Living with and Beyond Cancer: Taking Action to Improve Outcomes – the DH suggested a number of key interventions that make a difference to the long-term health outcomes for young patients. 

These include an integrated package of a Structured Holistic Needs Assessment and care planning; treatment summaries; patient education and support events at health and wellbeing clinics; and advice about, and access to, schemes that support people to undertake physical activity and healthy weight management.

However, many people still slip through the net. According to Emma Potter, late effects clinical nurse specialist at the Royal Marsden, there are only 16 primary treatment centres for children in the whole of the UK. So while patients should ideally be able to go back as young people to get the advice about where they can go next as an adult, for various reasons many do not.

“Childhood cancer survivors are usually always followed up to the age of 18, and some children will be followed up for life,” says Emma. “But as adolescents, they often don’t want to go back to hospital and so they are at risk of falling out of long-term follow up. It’s their choice and we can’t make them go. All we can do is wait and hope they will go back to their GP and get referred to adult long-term follow-up clinics.” 

In the meantime, Emma hopes the strongest message to hit home with survivors is that the biggest thing anybody can do is take care of their health and wellbeing. “This is a huge part of my job,” she says. “I ask about this at every appointment, which by the time they come to us, five years after they have finished treatment, is only once a year. I’ll check their height and weight, whether they are going through puberty, and I’ll ask about their activity levels. We come in hard and early on the topics of weight management and eating well, and we talk about the risks associated with smoking, alcohol and drugs – which are even more so for survivors of cancer.”

Emma stresses that everybody who has been treated for cancer should have a treatment summary and a long-term follow up care plan, and if they haven’t got one they should be going back to their primary treatment centre and asking for one. 

“It’s their passport to health,” she says, “but community pharmacy staff should be aware that not all survivors will have been told or remember they have one, or they could have lost their copy, so always ask if they have one, and signpost them to adult long-term follow-up clinics if they want more information.” 

A role for pharmacy

The DH admits that problems can occur during the transition between services (either from child to teenage or teenage to adult services) or at different points on the pathway. Despite this, there is no mention of community pharmacy or the role it could play in the DH’s Living with and Beyond Cancer report.

Nonetheless, there is much that pharmacy can offer childhood cancer survivors, and most of it falls within pharmacy’s regular service remit.

Julie Mycroft, consultant pharmacist children and young people at Royal Marsden NHS Foundation Trust, says: “It’s important that community pharmacists support healthy lifestyle approaches for all patients, but especially for patients who have had previous treatment known to cause morbidity, such as chemotherapy or radiotherapy.

“This would include not smoking or giving smoking cessation programmes and advice, healthy eating options such as plenty of fruit and vegetables – five a day, etc – maintaining a healthy weight, not exceeding Government recommendations for alcohol intake and generally an emphasis on regular exercise.”

For Dr Macgregor, the key message to get across is that most people treated will go on to live full, active, happy and healthy lives and live normally, although some may have some health problems in comparison to the general population. “The main advice is straightforward,” he says. “Take regular aerobic exercise, do not smoke, maintain a healthy weight, and avoid excessive exposure to the sun, if a skin area received radiotherapy as part of their treatment.”

Emma adds that community pharmacists should be aware that not all childhood cancer survivors will have been told or remember the potential long-term consequences of their cancer and its treatment.

“One of the key things we do with parents is to try to encourage them to let go a little bit and hand the reins of healthcare over to their children when they start to become teenagers and young adults,” Emma says. “If you’ve been very sick as a child, there is that tendency for parents to continue to look after the child, but the young people need the skills to understand their previous health issues and deal with what may be coming up in the future, and pharmacy can help a lot with information and support here.”

By encouraging customers who have survived cancer as children to take responsibility for staying as healthy as possible, you can help them reduce the impact of future health problems as a side effect of treatment, or even of the cancer itself returning. As Dany Bell, national programme lead cancer treatment and recovery at Macmillan Cancer Support, points out: “The best way of doing this is ensuring people are informed. Medical professionals, including GPs and pharmacists, can order free leaflets and booklets about all aspects of cancer, such as Life after cancer treatment, for free from: be.macmillan.org.uk and encourage patients to order them too.”

Childhood cancer survivors are more likely to develop conditions such as heart disease or lung damage when they reach adulthood