The incidence rates (number of new cases per year) of all cases of childhood cancers (0-18 year) are about 150 - 160 cases per million children per year. This is the worldwide average incidence rate. Exact incidence rates for India are hard to obtain as there are no robust reporting systems in place to get an exact report about the status of paediatrics cancers in India. The few databases that are available are area specific and suffer from incomplete reporting. In developed countries, almost all cases are treated on multicentre clinical trials; hence an exact statistics can be obtained about incidence, treatment and outcomes of cases. This data is just not available for India. However, based on the available data we estimate that there are about 100,000 to 150,000 new cases of paediatric cancer per year in India.
Unfortunately in India there are many cases which are not recognised in time and late presentation of cases, especially from a rural population, is very common. Again exact percentages are hard to come by, but most available data seems to suggest that the overwhelming patients from a rural population have a late presentation mainly due to a lack of diagnostic facilities at the primary care level. A typical example would be that in cases of retinoblastoma, advanced disease with loss of vision and complete protrusion of the eyeball is still common in India, while being completely unseen in the West!
For surgical paediatric tumours such as Wilms’ tumour, Neuroblastoma and brain tumours, fortunately in paediatric cases, the majority of cases seen in the tertiary centres are operable. In the adult population, however, inoperable cases are still quite common. Increasingly nowadays paediatric surgeons and neurosurgeons are able to operate on cases previously considered to be inoperable with advances in surgical techniques and neuroimaging.
Overall cure rates for all paediatric cancers is currently at about 80% if diagnosed early and treated properly. 5 year survival rates for other paediatric cancers are as follows:
- Hodgkins Disease: 95%
- Wilms’ Tumour: 92%
- Acute Lymphoblastic Leukemia: 87%
- Non Hodgkins Lymphoma: 87%
- CNS Tumours: 74%
- Soft Tissue Tumours: 72%
- Bone Tumours: 72%
- Neuroblastoma: 59%
- AML: 54%
In Western countries, cancer is the number one cause of disease-related death in children. In India & developing countries, its rank order varies with socioeconomic status, but it is often the first cause of disease-related death in 5-14 year-olds and 15 to 24 year olds.
Due to late presentation and delay in diagnosis mortality from childhood cancer is 17 to 72% in India as compared to 20-24% for the USA and Britain.
Abandonment of treatment due to various socio-economic causes is a major cause of therapeutic failure in India, affecting up to 50-60% of cases.
More than 85% of all newly diagnosed children with cancer and 95% of deaths in children with cancer occur in countries like India.
A child diagnosed with cancer from a poor socio-economic background in developing countries has an 80% probability of dying, compared to less than 30% in developed world.
MYTH: A cancer diagnosis means my child will get really sick and probably die.
Where it comes from: People remember their aged relative who was diagnosed with a cancer and who was in the hospital all of the time and was probably very sick. What they don’t realise that you do get weaker with age and treatment options were not that well developed 20 years ago.
THE TRUTH: Most children, who are diagnosed with cancer, are otherwise healthy. They tend to handle chemotherapy and treatments better than adults. And although it differs on the type of cancer the child has, the vast majority of children will be able to survive their cancer. In fact, the five-year survival rate for childhood cancers increased from 58.1 percent to 78.1 percent over the past three decades. Children are also able to undergo treatment better as they don’t have a lot of emotional reaction to cancer that adults have, and they behave normally even if they are getting treatment.
MYTH: My child is sick because I did something wrong or failed to prevent illness.
Where it comes from: Believing that you did something wrong comes from simply not knowing or not understanding about paediatric cancer and its causes.
THE TRUTH: The cause of childhood cancers is still unknown in majority of the cases. There’s no evidence to suggest that there is anything that can be done to prevent childhood cancers.
MYTH: Childhood cancer is contagious and other people can catch it.
Where it comes from: Lack of education about cancer and its properties can sometimes create irrational fears among parents, family members and even neighbours when a child is diagnosed with a serious illness.
THE TRUTH: There is no evidence which suggests that a healthy person can catch cancer from another person. It is safe for a child with cancer to be around other children in the family and in the school and neighbourhood. However, germs from healthy children could cause illness in an immune-compromised child who is undergoing cancer treatments. So, doctors would advise when it is safe for a child with cancer to be able to go to a public place like schools and malls.
MYTH: Adult oncologists can treat childhood cancers effectively and with good results.
Where it comes from: There are still very few trained paediatric oncologists in the country and even many doctors are not aware that paediatric cancers are very different from adult cancers and need to be treated differently.
THE TRUTH: Adult treatments and protocols can cause more undesirable side effects in children, and in fact, even when adult physicians treat children with the same protocol as paediatric cancer specialists, the results are suboptimal. This fact has been proved repeatedly with various multicentre trial across the world.
MYTH: Treatment for paediatric cancer is difficult and survivors have little chance of leading a normal life following treatment.
Where it comes from: Due to the rarity of paediatric cancers, parents tend to rely on their experience of seeing family members diagnosed with a cancer and do not realise that childhood cancers are nowadays very treatable.
THE TRUTH: Most children with paediatric cancer go onto live healthy, successful lives and many go onto to have children of their own. Modern treatment in tertiary hospital with good supportive care allows kids be kids while they are undergoing treatment. Long term follow up clinics continue to monitor the patients health for years after they have completed treatment.