Childhood is the age where children have lot of fun, wishes and desires. But for children with cancer it is battle against the odds. These children are an inspiration in their ability to put aside their pain and sorrow and make the best of whatever life has to offer.
Childhood cancer is the term given to a variety of malignant tumours that occur in children under the age of 16 years.Childhood cancers constitute to 3-4% of all cancers. Every year 250000 children are diagnosed with cancer worldwide. In India it is estimated that nearly 40000 new childhood cancer cases occur each year. In one of the reports not more than 20000 cases are being diagnosed. Of those diagnosed a good number of cases come in advanced stage. Around 70% children die of cancer in India despite the high cure rates in developed countries due to lack of awareness, late detection and late diagnosis, inadequate facilities, high cost of treatment and lack of supportive care.
The common types of childhood cancers are (see the figure 1)
Leukaemia (Blood cancer):Leukaemias are cancers of the blood-forming cells of the bone marrow. It accounts forabout one third of all childhood cancers. They are subdivided into acute and chronic, myeloid and lymphatic. Approximately98% of leukaemias are acute in those under 16. Acute lymphatic (lymphoblastic) leukaemia(ALL) accounts for around 75% of all childhood leukaemias, with the highest incidence occurring in those aged 1-4 years.
Brain and Spinal Cord: Brain and spinal cord cancers are the most common type of solidtumour in children accounting for approximately 20% of all childhood cancers. The two main types of childhood brain tumoursare gliomas and medulloblastoma. Gliomas develop in the supporting cells of the brain (which hold the nerve cells in place) and
are subdivided into two main types, astrocytomas(which account for between 30-50% of cases) and ependymomas(which account for approximately 10%). Medulloblastomas usually develop in the cerebellum at the back of the brain and account for25% of childhood brain tumours.
Lymphomas: Lymphomas are cancers of the lymphatic system which typically arise inlymph node tissue, but may also develop in other sites such as bone, stomach, spleen and the small intestine. Theyare usually divided into two groups, Hodgkin’s disease (which accounts for about 5% of childhood cancers) and Non-Hodgkin’slymphoma (accounting for approximately 7% of childhood cancers). There are two main types of Non-Hodgkin’s lymphoma, Bcell which usually involves the lymph nodes in the head, neck, throat and abdomen, and T cell which usually affects lymphnodes in the chest.
Neuroblastoma:Neuroblastoma is a solid tumour of specialised nerve cells(neural crest cells). It can occur anywhere in the sympathetic nervous system but is commonly diagnosed in the adrenal gland.Neuroblastoma accounts for about 8% of childhood cancers with 80% of cases occurring before the age of 4.
Nephroblastoma(Wilms’ tumour): Nephroblastoma is the most common renal (kidney) tumour of childhood accounting for approximately 7% of paediatric cancers, principally in those under 5 years old.
Sarcomas are malignant tumours that arise from mesenchymal tissue (bone, cartilage, connective tissue and muscle). Themost common sarcomas of childhood are rhabdomyosarcoma, osteosarcoma and Ewing’s sarcoma.
Rhabdomyosarcomaarises mainly from muscle and is the most common soft tissue sarcoma of childhood. Embryonalrhabdomyosarcoma occurs prim arily in the head and neck (40%) or genitourinary tract (20%) of younger children (4-6 years).
Alveolar rhabdomyosarcoma is found most frequently in the trunk and extremities (30%) of older children (>10 years).
Osteosarcoma is a bone tumour that commonly occurs in the arms or legs, accounting forapproximately 5% of all childhood cancers.
Ewing’s sarcomais a small round cell tumour of the bone usually affecting patients aged 10-15 years. It is mainly found in the femur, humerus, pelvic bones and ribs and is extremelymalignant with metastasis at diagnosis in 90% of patients.
Retinoblastoma:Retinoblastoma is a malignant eye tumour occurring in the retina that accounts for 2% of all paediatric cancers. The tumour may be present at birth due to a strong hereditary tendency and usually presents in childrenunder 3 years old.
Other: Other childhood tumours include germ cell tumours, hepatic (liver) tumours and rare tumours.
Causes of cancer in children
Parents often worry that something they did or didn’t do may have caused their child’s cancer. This is not the case, so you shouldn’t feel guilty or that you’re to blame for your child’s illness.It’s very rare for another child in a family to develop cancer, as most cancers aren’t caused by an inherited faulty gene and so it is usually not necessary to investigate siblings.Cancer is not infectious and can’t be passed on to anyone who comes into contact with your child.
Although we have identified a number of lifestyle changes that can help to prevent many adults developing cancer, we don’t know how to prevent most childhood cancers. We don’t know what causes childhood cancers either. We do know some factors that increase risk, but most children with cancer don’t have any of these risk factors. And many children who do have risk factors won’t go on to develop cancer.
The known risk factors include
- Inherited medical conditions(Downs syndrome, Neurofibromatosis, Klenifelters syndrome)
- Family history/Genes (Retinoblastoma, Li-Fraumeni syndrome)
- Problems with development in the womb
- Exposure to infections (Epstein Barr Virus EBV,
- Exposure to radiation
- Previous cancer treatments
Symptoms of cancer in children
As mentioned above there are many different types of cancers and their symptoms vary depending on the type, stage of cancer and the age of child. The symptoms `vary between children. If your child has a symptom we haven’t included here, and it hasn’t gone away after a few weeks, take them to the paediatrician. The following symptoms are not usually cancer, but see your doctor if your child has any of these
- Not able to pass urine, or blood in urine
- An unexplained lump or firmness or swelling anywhere in the body
- Swollen glands
- Back pain that doesn’t go away
- Persistent headaches
- Frequent bruising
- Feeling tired all the time
- Unexplained fits (seizures) or changes in vision or behaviour
- Abdominal pain or swelling all the time
- Unexplained vomiting
- Unexplained sweating or fever
- Unexplained weight loss or poor appetite
- Changes in appearance of the eye or unusual eye reflections in photos
- Frequent infections or flu-like symptoms
For most childhood cancers tissue biopsy is needed to confirm a diagnosis. For leukaemia, lymphoma or neuroblastoma a bonemarrow aspiration and biopsy may be taken. X-rays, CT (computerised tomography), MRI (magnetic resonance imaging) and ultrasoundscans may be used to identify most childhood tumours and establish the extent of any disease. For suspected leukaemia,lymphoma or retinoblastoma a lumbar puncture (spinal tap) may be performed to determine whether the fluid surrounding the
brain and spinal cord (cerebrospinal fluid) contains cancerous cells. Blood tests may help determine the extent of any diseaseand for a diagnosis of abnormal genes in retinoblastoma. A urine test may show the presence of VMA(vanillylmandellic acid) or HVA (homovanillic acid) which are increased in more than 90% of neuroblastoma patients. Nuclear medicine scans such as MIBG(meta-iodo-benzyl guanidine) scans may show the location of a neuroblastoma whereby the tracer is selectively taken up bycatecholaminergic cells
The stage of a cancer describes the extent of a disease and is important in terms of planning treatment and indicatingprognosis. There are various staging classifications relating to the site of the tumour but the TNM (tumour, nodes, metastasis)
system is the most widely used for solid tumours. In general, stage 1 shows a cancer confined to the primary organ. This lesiontends to be operable and completely resectable. Prognosis for this stage cancer is usually good. Stage 4 tumours show
evidence of distant metastases beyond the site of origin. Survival rates are lower in higher stage cancers compared to early stage cancers. Bone and PET(Positron Emission Tomography)-FDGscans help us to find out extent of spread the disease.
Because of the rarity of paediatric cancers, children are referred to specialist centres for their treatment. The treatment receivedvaries with each individual depending on factors such as tumour site, stage and the child’s general health.
In the 1960s only about 3 out of every 10 children (30%) with cancer were successfully treated. But in the past 40 years treatment for children with cancer has improved greatly. Now more than 8 out of every 10 children diagnosed with cancer will live for at least 5 years. Most of these children will be cured.For some types of childhood cancer such as acute lymphoblastic leukaemia (ALL) and Wilms’ tumour (a type of kidney cancer in children) this rate is even higher. With these types of cancer more than 8 out of 10 children (80%) diagnosed will live for at least 5 years. Hodgkin lymphoma and an eye cancer called retinoblastoma are curable in more than 9 out of 10 children (90%).Even though cancer is not common in children; it is one of the important cause of death in children.
pie chart Missing (page 8) incidence rates
- FACTS OF CHILDHOOD CANCER
- The incidence of childhood cancer is on the rise
- The average age at diagnosis is 6 years old
- Childhood cancer is not one disease, there are 16 major types of pediatric cancers and over 100 subtypes
- Unlike the cause of adult Cancers, the causes of most childhood cancers are unknown. At present, childhood cancer cannot be prevented
- Survival rates can range from almost 0% for cancers such as Diffuse Intrinsic Pontine Glioma, a type of brain cancer, to as high as 90% for the most common type of childhood cancer known as Acute Lymphoma Leukemia (ALL).
- The average 5 year survival rate for childhood cancers when considered as a whole is 83%.
- Children with cancer often have a more advanced cancer when first diagnosed
- Majority (70-90%) of childhood cancer is curable because of better response to the treatment and protocols
- In India, it is estimated that nearly 40-50,000 new childhood cancer cases present each year
- In India, as in adult cancers, 70% children with cancer still die of disease in India due to lack of awareness, late detection and diagnosis, inadequate pediatric cancer treatment facilities, the exorbitant cost of treatment and lack of supportive care.
Although about 8 out of 10 children are now successfully treated, childhood cancer is still devastating for everyone concerned. Treatment can last for months, or even years, which means long stays in hospital and being away from the home, school, friends and siblings. In India we do not have facilities for children to do school work under the guidance of teachers in the hospital wards. Many of the times children may feel like not doing anything at times, except having a cuddle with mum or dad.As we make progress in reducing infection-related childhood deaths in India, it is no longer acceptable to ignore children with cancer, who have an increasing likelihood of cure with appropriate treatment. Early diagnosis, multidisciplinary team management, appropriate response assessment and following the evidence based medicine practice will improve these children’s ability to fight cancer.
Dr Harsha Prasada L
MD, DCH, DNB, MRCPCH(London), CCT (London)
Consultant Paediatric Haematologist and Oncologist, Special interest in primary immunodeficiency disorders.
KMC Hospital Mangalore 575001
What can we do to enable our children to survive cancer?
Why my child has cancer? What have I done to deserve this pain of seeing my beloved child go through the excruciating pain of being cancer affected, denying her/him of all the joys of childhood? These are questions that are posed by parents of the affected children we work with. In some cases, parents repeatedly ask such questions when their much-loved child takes her/his last painful gasps of breath and loses her/his battle for survival (heart-rending experience for them). Unfortunately, there are no answers to such questions as of now.
No doubt ‘childhood cancer is curable’. However, there are some ifs:
- if cancer is not diagnosed too late or after it has engulfed all the vital organs of the child’s tender body
- if the health care provided by hospitals inclusive of medicines is of good quality
- if the parents have adequate finances and if not support from the government and civil society to meet the heavy costs of long drawn treatment and regular follow up
- if the child gets the nutritive diet required to build the immunity to fight the disease
- if there is an emotionally and socially supportive climate which is conducive for child survival
- if the air, water, land and forest bodies do not suffer destruction and are not polluted
When these and other conditions are not fulfilled, some cancer affected children lose their battle for survival and many others live in danger of the recurrence of the disease. Further, many more get affected by the disease in the future. Childhood cancer impacts the child, the family, community and society at large in many adverse ways.
Children in pain: Loss of most meaningful and joyful childhood years: For the child, cancer means days, months and years of excruciating pain and discomfort often a life of listlessness. It means the pains of the needle inserted into one’s tender arms, lying in hospital beds for days at a time and staying away from homes and schools for months and years. It means the denial of all joys of childhood – the games, the laughter, the tastes, the little acts of mischief and fights with siblings, interaction with friends and the exploration of the world around. The child loses to cancer some of the most meaningful and carefree years of her/his life, and in some cases despite all efforts, the most precious life itself.
Families in crisis: Families face a situation of distress and crisis more so from the time the child is diagnosed with cancer. It is a traumatic experience for them to know that their member suffers from the much-dreaded disease. The grief, the fear, the guilt that follows throws many families off balance. There are other siblings who are younger or older than the affected child who has to face a new reality. The absence of one or both parents during periods of a child’s hospitalization affects the caregiving atmosphere at home for all the other siblings. The economic burden resulting from this, that many families with limited means have to carry despite availing the government schemes (only BPL families are eligible for it), or not getting any (i.e. above poverty line) adds to the distress experienced by them.
A mother, in particular, carries the heaviest weight of suffering when there is cancer affected child. She could be a stay at home mother, a day labourer or a more or less regular jobholder who has to take frequent leave from work when the child is in pain or admitted to the hospital. She goes through much anxiety and fear. She consoles the child when in pain and persuades the child to consume food even when her/his taste buds are dulled by the disease, pushes the plate away. Especially when the father is absent (due to death, disease or addiction), it is she who has to carry the heaviest load on her shoulder inclusive of the financial, even though in some cases close relatives may offer support from time to time. In situations of domestic violence which women face in many authoritarian or male dominant households, mothers of affected children suffer much. This is not to say that the fathers suffer less. Fathers, especially those who share in caregiving, carry a heavy burden of grief too. Some have to work doubly hard as labourers, farmers or other job holders to pool money and take loans to meet the costs of treatment for the child besides the regular family expenses. Perhaps fathers hide their feelings of grief and inner turmoil under a veneer of external calm as the patriarchal family expects them to do so. Our caregivers encounter fathers who cannot bottle up their emotions any longer and burst out sobbing and crying when they find a listener who empathizes with them. In short ‘Childhood cancer means shared distress in the family’.
Insecurity in communities: Cancer is a disease which affects children – girls and boys across income groups (the poor, the middle and the rich), across ethnic (ex: castes, tribes and religion based) communities, and across geographies (urban, rural, developed and backward locations). Childhood cancer is an equalizer, unlike infectious diseases which take a much heavier toll on the economically marginalized for obvious reasons. As cancer is viewed as a disease over which one has the least control, it provokes intense fear and insecurity in the community – more such cases prevalent in the locality/community, more the anxiety. What if my child becomes the next victim? The bell could toll for me or someone very dear to me, my child or grandchild – we never know.
Society pays a heavy cost: Childhood cancer involve heavy costs to society – counted in terms of costs incurred by the state and people on health care, costs due to loss of labour days of parents, costs of reduced cognitive competencies and abilities of the affected children, costs in terms of loss of their productive potential in later years and costs due to loss of precious lives. The costs of pain/suffering the child and their family go through cannot be measured in economic terms. Meeting the conditions to ensure survival from cancer means a win-win situation for affected children, their families, communities and societies which include the state that has to incur larger portions of resources to meet the healthcare needs.
Concerted interventions are made by the state, health care sector and concerned individuals/organizations to meet at least some essential conditions required, contributing to increasing the survival rate among children affected by cancer. However, there are some who do not make it. Increasing number from the economically marginalized families are coming to the hospitals with their cancer affected child. The questions we need to ask are what we need to do to express solidarity with cancer affected children and their families? What we need to do to facilitate early detection and timely treatment? What we can do as individuals, organizations, institutions, communities to prevent cancer by promoting the health of our children? Safeguarding the right of children to live with dignity and joy is a collective responsibility of the state, the health service sector and all of us who are members of the civil society. Shall we join hands to make the child win, not cancer?
Dr. Rita Noronha Mr. Herald Moras
Director- CEDSE Chief Coordinator- CEDSE Care Child Cancer
Humane Society Saves Lives
As an undergraduate student, I first visited Wenlock District hospital in 1978 and continued my postgraduate studies in paediatrics in Kasturba Medical College. Later, I joined as a lecturer and continued to work there as a paediatric specialist and Head of the department and subsequently retired in 2018.
Working at Wenlock and Lady Goschen hospitals gave me unique “Life experiences” which helped me remain ‘Humane’ throughout my career as a teacher. However these experiences were often mingled with a feeling of desolation seeing the sufferings of children and pregnant mothers who came to hospital full of hope and returned empty handed. It touched my conscience deeply and I decided to give them a helping hand to alleviate their grievances and pain.
Initial years of struggle made me feel helpless and abandoned. There were no duty days without declaring death of their child to the unfortunate parents. Facilities available were not conducive to save lives and infrastructure for tertiary care was trivial.
Leading the initiative to improve the infrastructure along with colleagues in the department and philanthropists in the city, I struggled on. Facilities were upgraded with establishment of a High dependency paediatric unit in Wenlock (1995) and the Neonatal intensive care unit at Lady Goshen hospital (1998). These functional units not only saved the lives of many but also provided evidence based models to policy makers to improve public health care services for children elsewhere.
With establishment of the Regional Advanced Paediatric Care Centre at Wenlock hospital funded by Infosys foundation and Government of Karnataka and many others, I was of the opinion that children would get best of treatment. There was systemic improvement in the quality of care provided to children in the government hospitals in Mangaluru. But to our dismay many a time’s patients refused treatment and left the hospital with their ailing child, often reaching their homes with a dead baby!
Analysis of the situation responsible made us realise that there were reasons for such early discharges. Incidental expenditure such as transportation cost, daily needs of the parents (and relatives) such as food and loss of earnings of the day did amount to large sums leaving them at the mercy of unscrupulous money lenders in the community. Hospital admission of the sick child had worsened their financial status forcing the unfortunate parents to take decisions to stop treatment much against their wishes making them carry a big burden of guilt throughout their life!
Balasanjivini program started in March 2011 by department of women and child development came as a ‘Life Line’ for such families. Unique feature of this program was that all the incidental expenditures were met and the compliance for treatment improved. Unfortunately this program was stopped in April 2016.
Despite Balasanjivini program (and), supply of free anticancer drugs by the government and free investigations by Kasturba Medical College, utilization of cancer treatment services at Government Wenlock hospital was unsatisfactory. Long hospital stay, frequent visits to the hospital, family maintenance expenditure resulted in debts and sale of even small personal (accumulated) wealth they owned.
Need of an NGO to provide psychological support to the entire family and meet their urgent financial needs was realised. Centre for Development, studies and Education took the initiative and started Care Child Cancer (CCC). In this program a holistic approach was adopted by providing not only financial but also counselling and emotional support to the entire family, besides regular follow-up. This resulted in significant turnaround by parents of cancer children and treatment compliance improved, survival of cancer children reached around 70%. A small gesture by CCC was the key to survival of many cancer affected children.
A small help from the civil society towards humanising treatment in Government hospitals will help save not only children but also many young patients who are dying for want of ‘timely’ care in spite of all facilities is the learning that emerges from this experience.
Dr. B. Shantharam Baliga,
Mangaluru – India
Pediatric Tumours: Importance of Preventive Measures
According to global cancer statistics, childhood cancers (cancers in children <18 yrs age) constitute 0.5-4.6% of all cancers and 1% of all cancer deaths. Leukemias, lymphomas (tumours of blood and lymphatics) and tumours of Central Nervous System are the major types of cancer in children. International Agency for Research on Cancer (IARC) estimates 3 lakh annual cases and close to 80,000 childhood deaths due to cancers.
Alarming concern is, although five year survival rates (this means out of 100 cancer affected children, the number of those living five years after diagnosis) tend to be close to 80% in developed countries, in developing countries it is somewhere around 10%. Although there is significant advancement in medical technology and treatment rates the inequity rates are mainly due to non specific signs and symptoms of pediatric cancers, poor access and cancer diagnostic services close to community. An additional challenge is the cost of the medical services after cancer suspicion that could push the family below poverty line due to out of pocket expenditure on child’s treatment and care. The saying “Prevention is better than cure” holds true even with pediatric cancers. World Health Organization (WHO) commemorates 15th February every year as International Childhood Cancer Day to create awareness about the topic. Although preventing pediatric cancers is difficult as most would have been acquired through genetic or radiation exposure, let’s have a look at common risk factors by chronology of susceptibility:-
- Prenatal period – Older parental age, radiological exposure or radiation exposure in utero, genetic syndromes, drug exposure (diethyl stilbesterol- a hormone) during pregnancy, chromosomal abnormalities
- Infancy – chemical exposures (pesticides in food, Carcinogen exposure through environment), viral infections
- Childhood – indoor air pollution (parental smoking-second hand smoke), mobile phones, obesity, infections
- Adolescence – early menarche
- Exclusive Breastfeeding for 6 months
- Prenatal folic acid consumption
- Childhood physical activity
- Eating healthy – fruits, green leafy vegetables, salt and sugar restriction in diet
- Dawn M. Holman, Natasha D. Buchanan and on behalf of the Cancer Prevention During Early Life Expert Group Opportunities During Early Life for Cancer Prevention: Highlights From a Series of Virtual Meetings With Experts. Pediatrics 2016; 138; S3. Available from: http://pediatrics.aappublications.org/content/pediatrics/138/Supplement_1/S3.full.pdf
Dr Sudhir Prabhu H
Associate Professor, Community Medicine