One of the most agonizing news a parent is confronted with, is that his/her child has been diagnosed with cancer. While cancer in children is rare, cancer specialists are concerned that recent reports indicate there is an emerging trend of a rise in the disease in Sri Lanka ( around 750 new cases detected every year) due to a combination of factors, including better reporting. Of these, leukaemia or blood cancers are the commonest followed by tumours of the kidney, bone tumours, cancers affecting the nervous system, lymphatic system and liver .
While a few important Sri Lankan state hospitals, at Maharagama and Sri Jayawardenapura now have most of the latest equipment to treat these cancers, free of charge, doctors have expressed concern that there are delays in taking children for examination due to lack of awareness of such facilities .
In this interview with Consultant in Paediatric Oncology Dr Sanjeeva Gunasekera, Cancer Specialist, Karapitiya Teaching Hospital, tells the Sunday Observer about how childhood cancer is detected, how it is treated and the role of parents in helping their children to deal with their illness.
Excerpts ...
Q. Although cancer in children is rare, recent news reports of children with cancer needing help seems to indicate an emerging trend of a rise in the disease in Sri Lanka. What are the most recent statistics you have on childhood cancer in Sri Lanka?
A. Cancer in children are rare compared to adults. However, as in all cancers there is a rising trend in the incidence of childhood cancers. This is because of a combination of factors such as, an actual increase, better detection, better reporting, etc. Around 750 children are diagnosed with a cancer in Sri Lanka, each year.
Q. What are the most common cancers in children that you see in our country?
A. Like in all other countries, leukaemia or blood cancers are the commonest cancer in children in Sri Lanka. Specifically, a sub type called, Acute Lymphocytic Leukaemia. Out of non haematological (blood) cancers, brain tumours are the commonest. These are followed by tumours of the kidney (nephroblastoma), sympathatic nervous system (Neuroblastoma), bone tumours (Osteosarcoma, Ewing sarcoma), lymphatic system(Lymphoma), liver (Hepatoblastoma), eyes (Retinoblastoma) etc.
Q. Are cancers in children different from cancers in adults?
A. There are many differences in cancers of children and adults. Some of them are - In adults, cancers usually originate from epithelial cells while in children it’s from other tissues, generally speaking, paediatric cancers have better treatment outcomes. Environmental and lifestyle risk factors have relatively less impact on paediatric cancers. Only a small number of paediatric cancers are caused by genetic changes handed over from parents to children.
Q. Globally I understand it is leukaemia that causes the most number of deaths in childhood cancer. Is this the case in Sri Lanka as well?
A. In Sri Lanka, Leukaemia is the number one cause of death in absolute terms. This is mainly because Leukaemia will consist of around 70% of all paediatric cancers. However, if you look at the percentage of deaths out of the total diagnosed, some aggressive brain tumours and neuroblastomas take the lead.
Q. A US study says, only 1% of all newly diagnosed cancers are among children, it is however, the leading cause of deaths among children from 1-19 years. What is the Lankan scenario?
A. In Sri Lanka, deaths due to infections and accidents arestill higher than cancer deaths.
Q. What causes childhood cancer? Are there scientifically proven studies that show why? Or is research still continuing?
A. There is no easy answer for this. There are a number of ongoing research projects conducted in many countries to answer this question. However, what is clear is that there is no single cause. It is likely that a number of causes in combination is the real factor.
Q. Are infections also a contributory cause or a symptom?
A. There are some rare cancers caused by infections. However, infections in cancer patients are mainly due to the weakened immune system of the patient due to the cancer itself or the treatment. (chemotherapy)
Q. How does cancer affect a child’s body?
A. The effect of cancer on the body depends on what type of cancer the child is having. For instance, in blood cancerswhen leukaemia cells arise in the bone marrow they quickly multiply to take up space in the marrow.
This is the same space where in healthy children normal blood cells are formed. Therefore, formation and multiplication of these normal cells are severely impaired.
This will result in deficiency of these normal blood components. Also, leukaemia cells can invade organs like liver and spleen, and make them swell up. If we consider brain tumours, it causes death of normal underlying brain tissue as well as, increasing the pressure inside the cranial cavity. This would result in the symptoms we see, such as, headaches, vomiting, fits, weakness of limbs, etc.
Q. How is it detected? What are the symptoms and signs of childhood cancer?
A. Each cancer has different symptoms and signs. The common symptoms of leukaemia are prolonged fever, leg and back pain, bleeding from gums or into the skin, pale looking skin due to low haemoglobin levels, etc. Brain tumours can present as fits, early morning headaches which resolve after vomiting, sudden deterioration of school work, weakness of arms or legs, etc.
In kidney or liver tumours parents might actually feel a lump in the abdomen. You would see severe pain and swelling of limbs in bone tumours. Some symptoms common to all tumours are, poor weight gain and loss of appetite, frequent infections, etc.
What is important to bear in mind is that most of the above signs and symptoms are non specific and can appear at different times in most healthy children. They become alarming when seen in combination or if present in severe forms. So, we should caution any parent that, if they think some of these symptoms are present in their children, they should not panic but seek medical advice.
Q. In the West, as in UK and USA, it is the Primary care professionals who first detect the symptoms and advise the parents to see a paediatric oncologist. What is the procedure here?
A. Most of our referrals are from general paediatricians. Usually, patients present with the above symptoms to them. They would do the basictests and if that suggest a cancer, paediatric oncologists would get involved.
Also, some patients present with certain specific signs like lumps to paediatric surgeons or bone problems to orthopaedic surgeons. When a cancer is one of the diagnosis they are considering, again we are called in. It is rare for us to get a direct referral from general practitioners.
Q. Do children have better survival rates than adults with cancer?
A. The simple answer is yes. This might be due to many factors. Biological nature of children’s cancer is such that they are more susceptible for treatment modalities like chemotherapy. They have fewer comorbidities such as, diabetes, high blood pressure, heart problems, etc compared to adults leading to lesser rates of these disease related complications. Children tend to present early, compared to adults. These are some of the possible reasons why children have better outcomes.
Q. A study in US states that children have a survival rate of 80% more than adults with cancer and in some groups of cancer the rate of survival in children could go up to 95%. Do you agree?
A. In many centres in the developed world, a leukaemia type called B Cell Acute Lymphocytic Leukaemia (ALL) has 5 year survival rates of around 95%. This is quite a success as it’s better than some of the so called benign diseases, such as, meningitis, pneumonia, etc. So, in this group of patients now the focus is to actuallycut down treatment so as to minimize the treatment related side effects.
Q. What is the usual rate of survival for a child diagnosed with cancer? Does it depend on the cancer and at what stage it has advanced?
A. Survival rates would widely vary according to the cancer type, stage of presentation of the patient, general health status of the child, etc. In general, we can say that B cell ALL, germ cell tumours, nephroblastomas , etc have excellent prognosis while pontine gliomas, high risk neuroblastomas have poorer outcomes.
Q. Can early detection increase chances of survival in children?
A. As in all cancers, the earlier you detect the cancer, the better it is in terms of outcome.
However, we are lucky because when it comes to children, if parents think there is something not quite right in their child they would quickly seek medical help. Hence, presentation delays are not so common. This is not always the case when it comes to adults.
Q. What are the treatment options for children with cancer? Surgery? Chemotherapy?
A. As doctors treating cancer patients we have three main weapons in hand. That is, surgical excision, chemotherapy and radiotherapy. Depending on the cancer type, we use one, two or all three modalities in combination when treating children with cancer. Targeted therapies and immunotherapy are other newer armaments we have been equipped with recently in this war against cancer.
Q. What is the role of parents in helping afflicted children to overcome their fears and return to their normal life after cancer treatment?
A. Parents play a very important role in helping the children to come to terms with their illness and treatment. The fact that they have a cancer should not be hidden from the children. What needs to be conveyed is that they can get back to their normal life if the prescribed treatment course is followed properly.
The children can quickly sense the anxieties of parents and form their own opinions about the illness and treatment. Therefore, parents need to make an extra effort to always have a positive attitude regarding the whole process. This is not much different from the treatment of any other illness.
Q. How soon can a child return to school after surgery or chemotherapy?
A. Generally, after surgery they can return to school as soon as they are comfortable with their day to day activities. After chemotherapy it depends on the type of treatment they had. While on low intense chemotherapy regimens like ALL maintenance phase they can go to school while on chemotherapy. However, after very intense chemotherapy they have to wait for around 3 to 6 months to minimize the risk of infections.
Q. One fear in children and parents is the loss of hair after chemotherapy. How soon will the hair grow back?
A. It’s a side effect of many chemotherapy agents. There will be signs of hair starting to grow back after about 6 weeks post chemotherapy. Most children get their normal hair back when they are off chemotherapy for 6 to 9 months.
Q. At the Children’s Ward at Maharagama I understand, efforts are made to provide some facilities for a parent too in the case of a sick child . Tell us more about what is being done to help parents of needy children.
A. In Sri Lanka also there are regulations in place to provide paid leave to carers of children with cancer.
They are also paid a small stipend by the Social Services Department. In addition, there are a number of charities who work with the Paediatric Unit of the Apeksha Hospital and Teaching Hospital Karapitiya to help parents to meet transport, nutritional and finance needs.
Q. What are the gaps in our health system regarding the care of children with cancer?
A. In Sri Lanka, infection rates tend to be still pretty high. This is mainly due to overcrowding of wards because of lack of physical space, non availability of some antimicrobials, some cultural practices, etc. We also need to improve the palliative care facilities available for children. Post treatment, physical and mental rehabilitation is another area where there is room for improvement.
When you have a child with a chronic illness it’s not just the child who suffers. The parents and other siblings also undergo much hardship. Our systems are not very well geared to deal with this social aspect of patients with chronic disease.
Q. Your words of advice to parents / caregivers dealing with children having cancer?
A. A diagnosis of cancer in your child is something that no parent wishes to ever hear. However, unfortunately, if such a thing occurs, you need to be aware that there is a very good chance that the child can, not only be completely cured but also lead a completely normal life after treatment. However, to achieve this you need to strictly follow the prescribed treatment regimen. This can be a long, oftentimes difficult course but the end result makes it all worthwhile.
Q. A report in a Sunday paper on Feb 11 reported that Sri Lankan dairy product traders who use gelatin, a protein made from collagen in cured as a binding agent, will face prosecutions from April 1. Can these agents also lead to cancer in the long run?
A. I don’t think there is evidence directly linking gelatin to cancer.