It’s Time To Fight Childhood Cancer Together
What is Cancer?
Normal body cells grow, divide, and die in an orderly fashion. During the early years of a person’s life, normal cells divide more rapidly until the person becomes an adult. After that, cells in most parts of the body divide only to replace worn-out or dying cells and to repair injuries.
Cancer occurs when abnormal cells in the body begin to grow out of control. Instead of dying, they outlive normal cells and continue to form new abnormal cells. As their numbers increase they form a lump or tumour. When cancer cells break away and spread to other parts of the body they may produce secondary tumours known asmetastases.
Cancer cells grow out of control because of damage to DNA. DNA is in every cell and directs all its activities.
Most of the time when DNA becomes damaged the body is able to repair it. In cancer cells, the damaged DNA is not repaired.
People can inherit damaged DNA, which accounts for inherited cancers. Many times though, a person’s DNA becomes damaged by exposure to something in the environment.
What Causes Cancers?
In many cases, the exact cause of cancer remains a mystery. We know that certain changes in our cells can cause cancer to start, but we don’t yet know exactly how this happens. A great deal of research is currently underway studying a number of possible causes.
Cancers tend to occur by chance. This means that the main reason why one person gets cancer and another does not, is bad luck.
Cancers are not infectious nor, for most cancers, is there any evidence that they are inherited. It is exceptionally rare for a second child in a family to develop cancer. Parents often worry that their child has a cancer because of something they did or did not do. This is not the case and parents should not feel guilty or take any sort of blame for their child developing cancer.
Cancer is rare in children. In Malaysia, the incidence of paediatric cancer is about 77.4 per million children aged less than 15 years and these are quite different from cancers affecting adults and they respond differently to treatment. The prospects for many children have improved dramatically with advances in treatment. Cure rates for children are much higher than for most adult cancers and over 60% of all children can now be completely cured. However each type of cancer will have their own cure rate.
Children’s cancers are rare.These cancers are quite different from cancers affecting adults. They tend to occur in different parts of the body, they look different under the microscope and respond differently to treatment.
Cure rates for children are much higher than for most adult cancers and over 70% of all children can now be completely cured.
Types of Childhood Cancers:
- Acute Leukaemia
– Acute Lymphoblastic Leukaemia (ALL)
– Acute Myeloid Leukaemia (AML)
- Chronic Myeloid Leukaemia (CML)
- Brain tumours
- Ewing’s Sarcoma
- Germ Cell Tumours
- Liver tumours
- Lymphomas (Hodgkin’s Disease, Non Hodgkin’s Lymphoma)
- Osteosarcoma (cancer of the bone)
- Retinoblastoma (cancer of the retina)
- Rhabdomyosarcoma (cancer affecting muscles)
- Wilms’ Tumour (cancer of the kidney)
- Other rare tumours
Treatment aims to cure the cancer in many cases. With modern therapies, many cancers can be cured. Doctors tend to use the word ‘remission’ rather than the word ‘cured’. Remission means there is no evidence of cancer following treatment. However, in some cases a cancer returns months or years later.
There are three main ways of treating cancer:
- Surgery – the tumour can be cut out
- Chemotherapy – cancer cells can be killed with drugs
- Radiotherapy – cancer cells can be killed by radiation
Occasionally a stem cell transplant is also required. Your child’s treatment will depend on the type of cancer he / she has. Each type of cancer has its own treatment plan (protocol). Your doctor will explain your child’s protocol to you prior to starting treatment.
Surgery plays a very important part in the treatment of certain tumours. Depending on the size and position of the tumour in the body, an operation to remove it may be the first part of treatment. More often though a biopsy of the tumour is taken first to make the diagnosis.
Sometimes, an operation may be dangerous or cause too much damage to tissues because of the size and position of the tumour. In these cases, chemotherapy or radiotherapy may be given before an operation to shrink the tumour and make surgery easier.
It is a term applied to medications used to treat cancer. Chemotherapy is systemic, which means that the chemotherapy reaches most of the body through the bloodstream. If cancer cells are hiding out in different places of the body, chemotherapy can reach most of these areas and kill the cancer cells.
|How chemo can be given||Techinical term used||Shortened term|
|Into a vein||Intravenously||IV|
|Under the skin||Subcutaneously||SC|
|By lumbar puncture||Intrathecal||IT|
Chemotherapy drugs can’t tell the difference between normal cells and cancer cells. As a result, many of these drugs affect normal cells and cause side effects.
Chemotherapy has to be carefully planned so that it progressively destroys the cancer cells during the course of treatment, but not the normal cells and tissues. It may be given intensively in high doses over a short period, or it may be given in lower doses over a longer period.
Chemotherapy drugs leave the body in body fluids. It is very important for your own protection that you wear gloves when handling body fluids during the time that your child is receiving chemotherapy and for a short while afterwards.
Radiotherapy uses high energy x-rays which destroy cancer cells. Before treatment begins, it is necessary to undergo what is known as ‘planning’.
This allows the radiotherapist to work out the exact position in which to place your child, and ensures that treatment is given to exactly the right place to kill cancer cells each time.
Radiotherapy is painless and usually only takes a few minutes each day. During the treatment the child must lie perfectly still. This is to ensure precise delivery of the radiotherapy. Sometimes an anaesthetic is needed.
Radiotherapy is given daily and the duration of the course of treatment is variable according to your child’s type of cancer. Your radiotherapist will discuss the side effects of radiotherapy prior to your child’s treatment.
Children undergoing treatment for cancer will often require repeated blood tests and insertion of cannulas to enable chemotherapy and other drug treatment to be given. Even though doctors and nurses are very experienced at taking blood and inserting cannulae, it can sometimes hurt and is not a pleasant experience for the child.
Many children therefore have a special device called a central line, which is used to take samples of blood and to administer chemotherapy and other drugs (such as antibiotics). It can also be used to give blood or platelet transfusions.
A central line is a fine plastic tube, which is inserted into a vein in the child’s chest. This procedure is carried out under a general anaesthetic. When inserting the line, the surgeon makes a small cut into a vein in the neck and feeds the line down towards the heart. The other end is then tunnelled under the skin to emerge on the front of the chest as an external line.
Although inserted in a similar fashion, some lines do not come out through the skin. Instead, the line ends in a reservoir or ‘port’ that is buried under the skin As nothing comes out through the skin ports can be easier to look after but they still need to be accessed with a needle.
Central lines can remain in place for many months and are a very good way of avoiding the discomfort of repeated injections. However, the main risk associated with central lines is infection. Anytime a foreign body dwells inside the blood vessel, an increased risk of infection exists. Most of these infections are caused by skin bacteria. Attempts will be made to clear the infection with antibiotics, but sometimes the catheter may have to be removed.
Clotting inside the catheter, or outside around the catheter tip, may cause blockage of the catheter lumen or obstruction of the blood vessel the catheter is in. It may be impossible to draw blood from the catheter, or even to flush it or use it for infusion.
Heparin or urokinase may be tried to clear the blockage. Central lines can also slip out or get dislodged but this becomes less likely the longer the duration from insertion.
Your nurses and doctors will advice you on the care for your child’s central line.
The aim of the tests are to be sure that the correct cancer is diagnosed and to find out exactly where the tumour is and whether it has spread to other parts of the body.
The tests involved may delay the start of treatment for a few days, but without this information the right treatment cannot be chosen. Usually, starting treatment is not a matter of urgency. It is much more important to get all the necessary information to ensure that the right treatment is given.
Some of these tests are repeated during the course of treatment to study progress and to check for any side effects of treatment. There are also other tests to ensure your child is well enough to receive chemotherapy.
- Blood tests– To check effects of cancer and of treatment
- Bone marrow aspirate / Trephine biopsy
- Biopsy- This test is done by inserting a special needle through the skin (needle biopsy) or by doing a small operation (open biopsy). The specimen obtained is examined by the histopathologist (person who studies body tissues) who can tell whether or not it is malignant and exactly what type of tumour it is. Sometimes the surgeon may be able to remove the whole tumour rather than just taking a biopsy.
- Echocardiogram (ECHO)– Ultrasound examination to assess your child heart function
- Hearing test– This test is done prior to chemotherapy that may affect part of your child hearing.
- Lumbar puncture
- Radiological tests
Bone marrow is a spongy material that fills some of the bones and produces the cells (called stem cells) which develop into the three main different types of blood cells:
- red blood cells, which carry oxygen to all cells in the body
- white blood cells, which are essential for fighting infection
- platelets, which help the blood to clot and control bleeding
To tell whether the bone marrow is affected, a needle is put into the bone of the hip and some of the marrow is drawn out and taken for examination. A small sample of bone may also be taken (trephine biopsy). This test is done under heavy sedation, to avoid any discomfort to your child.
To find out whether cancer cells have passed into the cerebrospinal fluid (CSF) which surrounds the brain and the spinal cord.
This test involves putting a needle into the spine and letting some of the fluid drain out.
Your child will be asked to lie on his/her side and to curl up slightly so that his/her back rounds towards the doctor.
A fine needle is inserted into his/her back between two vertebral bones in the lower spine and a few drops of the fluid are removed. Sometimes drugs are injected into the fluid at the same time as part of the treatment. This test is done under sedation or under local anaethetic (EMLA).
Ultrasound waves are sound waves that the human ear cannot hear. Ultrasound scans are completely safe and are used particularly to look at the abdomen and heart.
If your child has a cancer which has spread to bone, a bone scan will show how much of the bone is affected. Small doses of a radioactive substance can be injected into a vein to show up abnormal areas in the bones.
CT (Computerised Tomography) Scan
A CT (computerised tomography) scanner is a special kind of X-ray machine. It is used for taking pictures of soft body tissue.
Pictures of the part of the body to be scanned are taken from different angles by a camera in a rotating drum instead of sending out a single X-ray through the body as with ordinary X-rays
MRI (Magnetic Resonance Imaging)
MRI scanning builds up a series of cross section pictures of the body. The process is harmless and painless. But the machine is noisy and, looks frightening as your child has to lie in a tunnel.
He / She may be given a sedative or general anaesthetic to make sure that he lies still during the scan.
Side Effects & Nutrition
Different chemotherapy drugs cause different side effects. Cancer treatments cause different reactions in different children and reactions can vary from treatment to treatment. Almost all side effects are only short-term and will gradually disappear once the treatment has stopped.
The main areas of your body that may be affected by chemotherapy are those where normal cells rapidly divide and grow, such as the lining of your mouth, the digestive system, your skin, hair and bone marrow. Although the side effects of chemotherapy can be unpleasant, they must be weighed against the benefits of the treatment.
The more common side effects are:
Hair loss occurs with most chemotherapy drugs. Hair loss can begin 10 to 21 days after drugs are begun, with total loss in 1 to 2 months. Hair on your head is often lost first, but hair over the entire body can be lost. Regrowth may begin while you are still on chemotherapy, although it will be slow. Full regrowth happens when chemotherapy is finished.
Nausea and vomiting can range from slight to severe. Your child’s doctors will prescribe anti-emetics (to stop the nausea and vomiting) when he/she is on chemotherapy. Your child may be on more than one type of anti-emetics during chemotherapy. If your child vomits too many times, he/she can get dehydrated.
These suggestions may help your child when he/she is nauseated:
- Do not give his/her favourite foods
- Do not eat fatty, fried, very spicy or very sweet foods
- Eat cooked foods that are at room temperature. The smells from hot foods may make your child’s nausea worse
- Keep your child’s mouth clean; brush at least twice a day
- Do not force your child to eat
Infection is an important problem of cancer treatment. Your child may be at risk for infection due to the cancer itself affecting his/her body’s own defences (leukaemia/lymphoma) or from the side effects of treatment (chemo/RT) affecting the production of white blood cells (WBC).
The body has many ways to protect us from infections. Skin, acid in the stomach and coughing are some ways that the body protects itself. WBC destroy germs after they enter the body.
Neutrophils are the special WBCs that fight infection. When the number of neutrophils (ANC) are <1.0 x 109/l, you are said to be ‘neutropenic’ and very prone to infections. If you are neutropenic for only a few days, the risk of infection is small. If the neutropenia lasts for a week or longer, the risk of infection is very high. Even mild infections can cause life-threatening illness.
Infection cannot be completely prevented. However, there are many things you can do to decrease the risk of infection in your child.
- Avoid large crowds or anyone with signs of infection.
- Avoid contact with people with contagious diseases such as flu, measles or chicken pox
- Keep your child clean by bathing daily and washing hands after using the bathroom.
- Keep your child’s mouth very clean by brushing his/her teeth
- Avoid uncooked vegetables. Fruits need to be washed thoroughly and peeled. Avoid grapes as far as possible as they are difficult to wash and peel
- Avoid constipation and straining to have a bowel movement
- Remove fresh flowers and live plants from the rooms as they may harbour fungus
Cancer and cancer treatment can sometimes cause mucositis (a sore mouth). This may cause your child to have a reduced oral intake and be dehydrated. There are things you can do to help your child’s mouth heal and to make it feel better.
- Examine your child’s mouth at least once daily. Look for any ulcers, sores, red areas, or white patches. Report changes and any mouth pain to your doctor or nurse.
- Keep your child’s mouth clean and moist. Clean your child’s teeth even though it is sore. If it hurts to use a soft brush, use an oral swab.
- Ensure your child rinses his/her mouth frequently with salt water or Sodium Bicarbonate solution (can be obtained from the ward).
- Before meals and as needed for comfort, apply an anaesthetic (a numbing agent), such as ‘Lignocaine’, to sore areas of your child’s mouth. This will numb his/her mouth and make eating easier.
- Eat frequently and in small amounts.
There are other side effects that are specific to the chemotherapy your child is on. This will be explained to you during your treatment.
Nutrition while on Chemotheraphy
Many children with cancer may lose weight because of the cancer itself or due to poor appetite during chemotherapy. They may find that food makes them feel sick or they notice a change in the taste of some foods.
The dietitian or doctor may recommend foods for your child that you would normally think of as unhealthy, but don’t worry, they have good reasons for doing this.
A good diet is one that gives you everything you need to keep your body working well. The key to a good diet is variety and balance. There is no scientific evidence to prove that taking large amounts of supplements is helpful. In fact it can be harmful to take more than the daily recommended requirement.
We need energy even if we are not very active, just sitting in a chair we need energy to breathe. If there are too few we start to use up our body’s stores of energy and lose weight.
Energy is measured in calories. Sometimes the dietician will prescribe high calorie milks/drinks for your child to supplement his/her oral intake. This can also be given via a naso-gastric tube given at certain intervals or continuously. Occasionally, when your child is unable to take orally, nutrition could be given intravenously (TPN).
It is important to take cooked food. Fruits should be washed thoroughly and peeled before consumption. Please avoid non pasteurised milks, live or bio yoghurts, cheeses made from unpasteurised milk or not fully cooked eggs and ‘rojak’.
Support & Care
Care given to improve the quality of life of Cancer patients
2, Jalan 4/96
Off Jalan Sekuci
Taman Sri Bahtera
56100 Kuala Lumpur
Tel: 603-9133 3936
Fax: 603-9133 3941
Cancer care can be very expensive, however poor financial status doesn’t preclude your child from obtaining optimal treatment. All government hospitals charge a nominal fee for government officers and school going children.
Whilst most charges for cytotoxic agents and doctors consultations are waived, there will be other fees expected of parents.
If you need financial assistance, please feel free to approach your nurses or doctors for referral to the hospital social worker.
The Welfare Department of your state can also be approached for assistance. This may be in the form of travel warrants or other support.
In many states there are provisions for short term accommodation for you and your child e.g. at Cancerlink House and Ronald McDonald House.
Please approach the ward sister to make the arrangements.
Your child will be treated by a team of paediatric oncologists, who are doctors who specialise in children’s cancer, junior and senior medical officers, nurses, dieticians, physiotherapists and other specialties according to the needs of your child.
Please do not feel guilty if you need to take some time off the ward occasionally and have an alternative carer for your child. We understand that being in hospital all day when everyone is worried and frightened can be a great strain. Sometimes you cope better after spending the night away from the hospital. Feel free discuss any problems with the Ward team.
It is very likely that your child will spend some time in hospital during the course of his/her treatment. You will meet other parents and children who are undergoing similar treatment who may have helpful experiences to share with you.
There are no limitations to visiting on the ward and visits from healthy school friends can be very good for your child’s morale. But it can sometimes be tiring and frightening for a sick child if there are too many visitors in the room at the same time.
Children who have been in hospital are often understandably difficult and demanding when they return home. Younger children may behave in a more childish way whereas older children may be aggressive or jealous of their brothers and sisters. Maintaining discipline and having their friends or close relatives round can help children return to a normal routine.
During the most part of your child’s cancer treatment, he/she will not be able to attend school. Your doctors will be able to provide a letter to the school informing them of your child’s temporary absence. If your child is being treated for ALL, he/she will be able to return to school during the maintenance phase of treatment.
It is important for your child to take the all the oral medications prescribed. If you face any problems, please consult your doctors.
During your child’s treatment he/she should not be vaccinated as the vaccine will not be effective and live vaccines may be harmful. Once your child’s treatment has finished we will advise you about re-immunisation.
Take your child’s temperature any time your child feels hot or chilled. If his/her temperature is above 38.50C or 380C and persistent, please call your doctor immediately and get admitted for intravenous antibiotics.
Please remember to apply EMLA prior to coming to hospital if your child has a ‘Port‘.
Some symptoms of infection are as follows:
- Sore mouth
- Vomiting or Diarrhoea
- Pain on urination
- Pain or redness at the site of an intravenous catheter or central line
- Any other areas with redness or swelling
Please call your doctor for advice at any time if your child is unwell or if he/she develops pin prick bruises (petechiae) or any bleeding.