Looking beyond the cure

CANCER can affect anyone at any age. For children with cancer, however, outcomes are more promising. With medical advances and extensive research, childhood cancer cases in Malaysia have a high cure rate, with children living healthily into adulthood.

One in every 6,500 individuals aged 18 and below has cancer. In Malaysia, approximately 800 new cases are seen annually. Cancer is the leading cause of death in children and adolescents in most developed countries.

The specialists who treat childhood cancers – paediatric oncologists – are aware of the longterm side effects of cancer treatment in childhood. In addition to curing patients, paediatric oncologists attempt to achieve a balance between improving cure rates and reducing late effects from treatment.

“There are always side effects of the various cytotoxic agents and drugs that are used in cancer treatment for children. Patients can lose their hair, develop mouth ulcers or, due to intake of steroids, gain a lot of weight. These are transient side effects.

“However, some of these drugs also contribute to direct damage to certain organs. Certain drugs can cause heart muscles to weaken, some affect nerve health – these are direct toxic effects from the drugs used in cancer treatment,” says Dr Hany Ariffin, professor of paediatrics at Universiti Malaya.

Paediatric oncologists have come to realise that childhood cancer survivors have a much higher rate or much earlier development of age-related morbidities, she adds, as reflected in results from various studies.

These include diabetes, hypertension and cardiovascular disease – all morbidities that

The incidence of ischaemic heart disease is five times higher in childhood cancer survivors and their risk of stroke is eight times higher compared to age-matched peers. Dr Hany Ariffin

more commonly occur later in life.

“Clearly, there is some element of premature or accelerated ageing that occurs in these childhood cancer survivors, because it is not something that is directly related to the drugs they received during treatment decades ago.

“Some drugs do directly contribute to injury in certain organs, but it is quite intriguing to think that something a child received 35 years ago has now caused early-onset hypertension,” says Dr Hany.

According to her, the incidence of ischaemic heart disease is five times higher in childhood cancer survivors and their risk of stroke is eight times higher compared to age-matched peers.

Dr Hany also mentions that the exact biological mechanisms linking premature ageing and cancer treatment in childhood are still being studied.

“The area of research on this particular matter is called childhood cancer survivorship, and there is a lot of work being done to investigate its cause and prevention.

“We are trying to help people who are currently experiencing symptoms of premature ageing, and prevent children undergoing cancer treatment now from the condition in the future,” says Dr Hany.

She also advises that managing, preventing and treating diabetes, hypertension and cardiovascular disease is already a huge burden on any country’s national health budget.

If these survivors are developing said chronic diseases at an age when they are supposed to be actively contributing to the economy, the implications to the country’s earning could be serious.

“In our country, the main focus for many years had been on curing patients. Only when we started curing more and more children did we realise that something is happening to our survivors. Now, we have shifted to thinking about how the treatment could affect them in the long run when we design treatment plans and strategies,” shares Dr Hany.

Helping develop cancer care

While medical professionals strive to find a balance between long-term physical effects and standard cancer treatment, the emotional impact on a child with cancer should also be considered.

Cancer can take its toll on both patients and caregivers emotionally, physically or financially. A representative from the National Cancer Council (MAKNA) shares that it is always advisable for patients and caregivers to trust their team of cancer management professionals and heed its advice throughout treatment.

However, while professionals handle the medical part, the caregiver of a child with cancer can help ease the child’s treatment journey by taking care of themselves first.

The MAKNA representative shares that support systems should be more visible to the public.

“Support groups have a significant impact on the cancer management journey because by everyone sharing their ordeal or experience, we can all learn from one another,” says the MAKNA representative.

Moreover, caregivers are often tasked with making medical decisions for their child, and they need to have a complete understanding about the range of treatment options and potential risks associated with those choices before giving their approval for tests and procedures.

Learning to communicate with their young patients is also important for caregivers.

Giving the child too much information on the disease and treatment methods will unnecessarily burden him, especially when the information is attained from too many sources with opposing views. It also confuses the caregiver.

A support group can help if both caregiver and patient are feeling overwhelmed, and reassure them that all parties involved are working towards one thing – curing the child.

“Those in urban areas know too much, but those in rural areas lack awareness! The foremost problem in this country when it comes to cancer detection and prevention is that people are afraid,” says the MAKNA representative.

She adds that some people she meets are under the impression that cancer is a death sentence, and that Malaysians are slowly but surely moving away from that mindset with many organisations encouraging cancer screening, early detection and prevention.

“In my experience, when we go to rural areas to spread cancer awareness and give public talks, people are much more inclined to participate in the screening services we provide. Reception is more favourable when people know what is happening,” she concludes.

At times, the slow progress of a certain treatment plan could distress parents, especially when its effects on their child are barely visible. Some people approach her about alternative therapy, says Dr Hany.

She advises that the use of traditional medicine along with prescribed treatment should be done carefully, but it does not mean they cannot complement each other.

Parents should be frank with their child’s oncologist about their desire to try out alternative medicine so they can have honest conversations about the child’s treatment.

“Alternative therapy is a popular thing, but no alternative methods have been proven to be able to treat cancer. Delaying medical treatment to try out other options only results in allowing the cancer to advance and decreasing the child’s chances to be cured,” says Dr Hany.