Cancer in children and young people is rare. In Portugal, around 400 children are diagnosed with cancer each year. The types of cancer they develop can be quite different from those that affect adults. They tend to occur in different parts of the body. They also look different under the microscope and respond differently to treatments. Cure rates in children are much higher than in most adult cancers. On average, 82% (more than 8 out of 10 cases) of all children can now be fully cured. For some types of pediatric cancer, the cure rate is even higher.
The organs and tissues of the body are made up of tiny components called cells. Cancer is a disease of these cells.
Normally, cells divide in an orderly and controlled way. However, this process can sometimes become uncontrolled, and the cells continue to divide. In many cases, these cells form a lump called a tumor. Tumors can be benign or malignant. Doctors can determine whether a tumor is benign or malignant by removing a piece of tissue and examining a small sample of the cells under a microscope (biopsy).
In a benign tumor, the cells do not spread to other parts of the body and are therefore not cancerous. However, they can continue to grow at the original site and may cause problems by pressing on nearby organs. In a malignant tumor, the cancerous cells can spread beyond the original area of the body.
Cancer is not infectious and cannot be transmitted to anyone who comes into contact with your child.
Leukemia is a cancer of the bone marrow. The bone marrow is the spongy material inside our bones where blood cells are produced. When someone has leukemia, their body produces too many abnormal white blood cells. These cells usually do not form a lump (tumor) but travel through the body via the bloodstream and can infiltrate other organs.
Leukemia is the most common cancer in children. The main types found in children are acute lymphoblastic leukemia (ALL) and acute myeloid leukemia (AML).
Only after identifying the exact type of leukemia can doctors determine the prognosis and plan the most effective treatment.
Central Nervous System (CNS) tumors – the system consisting of the brain and spinal cord – are solid neoplasms and represent the second most common type of tumor in children, after leukemia.
Sarcomas (including soft tissue sarcomas and osteosarcomas) develop from tissues such as bones or muscles and can occur in any part of the body
Neuroblastoma is the most common solid tumor in children after central nervous system tumors. It is a cancer of immature nerve cells that occurs most often in young children. It usually originates in the adrenal glands but can also develop in the neck, chest, abdomen, and spine, where cells of the peripheral sympathetic nervous system are present.
Lymphoma is cancer of the lymphatic system and can develop in any lymphatic tissue in the body. There are two main types of lymphoma: Hodgkin lymphoma (HL), sometimes called Hodgkin’s disease, and non-Hodgkin lymphoma (NHL).
The exact cause of pediatric cancer is still unknown, although science continues to search for answers.
It is very rare for two children in the same family to develop cancer, as most cancers are not hereditary. Therefore, it is usually not necessary to screen siblings.
Sometimes, parents may think they did—or failed to do—something that caused the illness. This is not the case; there is nothing they could have done or not done. Parents should not feel guilty or responsible for their child’s disease, as this feeling has no scientific basis.
Cancer is not infectious, so it cannot be transmitted by anyone, and your children cannot pass it on.
Diagnosis means determining whether your child has cancer and, if so, identifying the type. Doctors do this by assessing symptoms and conducting tests.
When a child shows symptoms that could be caused by cancer, they will be referred by their family doctor or local hospital to one of the following specialists: a pediatrician (a doctor who specializes in treating children) or a pediatric oncologist (a doctor who specializes in treating children with cancer).
In Portugal, most children with cancer are treated at the Pediatric Oncology Department of one of the following hospitals:
– Lisbon – IPO Lisbon
– Coimbra – Coimbra Pediatric Hospital
– Porto – IPO Porto and São João Hospital
Various tests may be performed to diagnose your child’s condition. These tests are conducted for the following reasons:
To accurately diagnose the cancer;
To determine where in the body the cancer is located;
To assess your child’s overall health, as this may influence the treatment plan.
Sometimes, it can be difficult to distinguish between specific types of cancer. For diagnosis, your child’s doctor may seek the opinion and advice of other physicians. If necessary, support from other cancer specialists throughout Portugal and abroad will also be available.
Even after a diagnosis has been made, additional tests may be necessary. This can mean that treatment may only begin after a few days. Cancer usually develops slowly, so a short delay in starting treatment is not a problem. It is important to understand the specifics of your child’s cancer so the doctor can choose the most effective treatment.
However, for some types of cancer, it is important to start treatment immediately. Your child’s doctor will discuss this with you.
Some of the most common tests are described here. Some tests may be repeated during the course of treatment to assess its effectiveness.
If the doctor suspects that the tumor may be malignant, a portion of it may be removed for examination under a microscope. There are two types of biopsy:
– Needle biopsy – a needle is inserted into the tumor through the skin to remove a small sample. This procedure can be done under local anesthesia.
– Excisional or surgical biopsy – a portion of the tumor is removed during a minor surgery under general anesthesia. Sometimes, the surgeon may be able to remove the entire tumor instead of just taking a sample.
The cell sample is sent to a laboratory to be examined by a pathologist (a doctor who studies body tissues). The pathologist can determine whether the sample is cancerous and, if so, what type of cancer it is. Biopsy results usually take several days.
The following tests may be performed:
Complete blood count (CBC) – this test measures the number of different types of blood cells (red blood cells, white blood cells, and platelets). It is one of the main ways to monitor the side effects of treatment.
Biochemistry – this test measures the levels of certain salts and proteins in the blood. It provides information about how the body’s organs, such as the liver and kidneys, are functioning.
Blood type – blood samples can be used to find a donor compatible with your child’s blood if a transfusion is needed during treatment.
Blood culture – a blood sample is tested for possible infection by microbiologists (scientists who study types of infections).
Blood clotting – blood can be tested to assess clotting time and the risk of bleeding. Clotting may be affected by cancer or its associated treatments.
Other tests – blood may also be taken to check if your child has had certain viruses in the past, such as measles, hepatitis, rubella, cytomegalovirus (CMV), or varicella-zoster virus (VZV).
Some types of cancer can affect the bone marrow. Bone marrow is the spongy material found inside certain bones. It produces cells called stem cells, which develop into three different types of blood cells:
– Red blood cells, which carry oxygen throughout the body;
– White blood cells, which are part of the immune system and essential for fighting infections;
– Platelets, which help the blood to clot and thereby control bleeding.
To obtain a bone marrow sample, a needle is gently inserted into the iliac bone. The sample is then sent to a laboratory for analysis.
This procedure is usually performed under general anesthesia or sedation to ensure that your child experiences minimal discomfort. Older children may prefer local anesthesia. The bone from which the sample is taken may be sore for a few days afterward.
A bone marrow examination may be performed when your child is diagnosed, or sometimes during or at the end of treatment.
In some situations, such as leukemia or lymphoma, cancer cells can spread to the fluid surrounding the brain and spinal cord (cerebrospinal fluid or CSF). To check if this has occurred, a few drops of CSF are taken. This is done by inserting a thin needle into the lower back region of the spine, between two vertebrae. This procedure is called a lumbar puncture and is usually performed under general anesthesia.
The CSF sample is then examined for the presence of cancer cells. Sometimes, as part of cancer treatment, medications (chemotherapy) are injected into the CSF. This is known as intrathecal chemotherapy.
When viewed on an X-ray, a tumor often appears different from healthy tissue. An X-ray can reveal whether there is a tumor in the chest, abdomen, or bones..
This test uses sound waves to create an image of the inside of the body. A gel is applied to the area being examined, and a small device, similar to a microphone that produces sound waves, is moved over the area. A computer converts the sound waves into an image.
Ultrasounds are completely safe and are mainly used to examine the abdomen, heart, and muscles.
UA computed tomography (CT) scan takes a series of X-rays to create a three-dimensional image of the inside of the body. It takes 10 to 30 minutes and is painless, but your child may be given a sedative or general anesthesia to ensure they remain still. Sometimes special dyes (contrast) are injected into a vein or ingested to make certain parts of the body show up more clearly on the CT scan.
This test uses magnets to create a detailed image of areas of the body. The procedure is painless, but it can be a little intimidating because the machine is very noisy and your child must remain still and lie in a narrow tunnel. A sedative or general anesthesia may be given to ensure your child stays still. Earplugs or headphones will also be provided and should be used. Parents sign a form to confirm that their child does not have any metal objects in their body, such as braces. Parents may be allowed to stay in the room during the scan.
If your child has a bone tumor or a tumor that may have spread to the bones, this test will show the extent of bone involvement. A small dose of a radioactive substance is injected into a vein, usually in the arm. The substance is absorbed by the bone. Abnormal areas of bone absorb more of the substance than healthy bone and appear as ‘hot spots’ on the scanner. The radiation dose is very low and not harmful.
A PET scan uses a low dose of radioactive glucose (a type of sugar) to measure the activity of cells in different parts of the body. A very small amount of a mildly radioactive substance is injected into a vein, usually in the arm. After a short waiting period, the scan is performed using equipment similar to a CT scanner. Areas where cancer is present are typically more active than the surrounding tissue and therefore stand out clearly. The radiation dose is very low and not harmful.
This test shows how well the kidneys are functioning and whether they are eliminating the medications properly. It is performed before certain types of chemotherapy and may be repeated during treatment. The procedure involves injecting a radioactive dye into a vein. Blood samples are then taken two, three, and four hours later. A local anaesthetic cream can be applied before the injection and blood tests to make the procedure less uncomfortable. The radiation dose is very low and not harmful.
Some cancer treatments can affect your child’s hearing. For this reason, your child may undergo an audiogram (hearing test) before, during, and after treatment. This detailed hearing test is performed in a quiet room at the hospital. Your child will be asked to listen to sounds at different frequencies through headphones or speakers.
In some children, vision may be affected by the location of a tumor. The goal is to treat tumors before they cause significant damage, helping to prevent further vision loss. Regular monitoring is carried out in children whose vision is at higher risk of being affected.
Cancer staging refers to the size of the tumor and whether it has spread beyond its original location. Understanding the extent of the cancer helps doctors determine the most appropriate treatment for your child.
Staging applies to almost all types of cancer, except leukemia. Cancer is usually classified into four stages:
Stage 1 – The cancer is small and confined to a single area of the body.
Stage 2 or 3 – The cancer has spread to nearby areas of the body from where it started.
Stage 4 – The cancer may have spread to other parts of the body.
Different types of cancer have specific staging systems. The doctors will discuss your child’s situation with you and explain what it means.
Before your child receives any treatment, the doctor will explain the goals and possible side effects. A consent form must be signed to authorize the hospital team to proceed with the treatment. When a child is 16 years old, they may be able to give consent for their own treatment (the law regarding children’s consent to treatment is complex, so any concerns should be discussed with the doctor).
Before signing the form, you should request full information about:
If you haven’t understood everything, ask the team to explain it again. For most parents, this is an entirely new language, and emotional stress can make it difficult to absorb all the information.
It may also be helpful to make a list of questions before the appointment. Sometimes parents feel that the hospital team is too busy to answer questions, but it is important to ask for the time needed to clarify any doubts.
Surgery is an important part of the treatment for some types of cancer. Depending on the size and location of the tumor, the first step of treatment may be to remove it. In some cases, chemotherapy or radiotherapy may be given before surgery to shrink the tumor and make the operation easier.
Chemotherapy is the use of anti-cancer drugs (cytotoxic medications) to destroy cancer cells. These drugs travel through the bloodstream and can reach cancer cells throughout the body.
Chemotherapy can be administered in different ways—by tablets, capsules, liquid taken orally, or by injection. There are many technical terms used to describe how the medications are given. You will see these terms in your child’s medication chart and treatment plans (protocols).
Common terms include:
The most common way to administer chemotherapy is intravenously (IV). It can be given into a vein, either through a central venous catheter or an implanted port. Both involve tubes inserted into a vein that can remain in place for several months or, in some cases, years. They can be used to draw blood as well as to deliver treatment and other medications. These devices help avoid repeated needle sticks each time your child needs treatment.
Sometimes the treatment is given through a thin, flexible tube inserted into a peripheral vein and then secured with adhesive to your child’s arm. This is called a peripheral catheter (Abocath®). A peripheral catheter stays in place for only a few days.
Usually, doctors recommend the type of catheter most suitable for the situation. Chemotherapy drugs are typically diluted in a bag of liquid, such as saline, and administered as a drip (infusion) through the catheter.
Chemotherapy must be carefully planned. It is usually given as a series of treatment sessions. Each session destroys some cancer cells but may also damage healthy cells. After each treatment, there is typically a rest period to allow healthy cells to recover before the next dose. A chemotherapy session and its rest period are called a treatment cycle. A series of cycles makes up the complete treatment.
Immunotherapy targets specific cancer cells. For example, rituximab is a treatment used for certain types of lymphoma. It binds to a specific protein on the cancer cell and activates the body’s own immune system to attack and destroy the cancer cells. Because it targets specific cells, other parts of the body are not affected, and side effects are usually mild. Immunotherapy is suitable only for certain types of cancer and is generally administered alongside chemotherapy.
New drugs for pediatric cancer have been developed that work differently from chemotherapy. They act by blocking a specific gene or a protein present in the cancer cells. Specific laboratory tests may be performed on your child’s cancer cells to assess whether any of these new drugs could be used. Since these medications are new, they are often administered as part of clinical trials.
Radiotherapy treats cancer by using high-energy rays to destroy cancer cells in a specific part of the body, while minimizing damage to normal cells. The treatment is performed in the hospital’s radiotherapy department and consists of a series of short daily sessions.
Treatments are carried out from Monday to Friday, with a break on weekends. Your child’s doctor will discuss the treatment and possible side effects with you. The duration of the treatment will depend on the type of cancer your child has.
Radiotherapy must be carefully planned, which may require several visits to the hospital. During your child’s first visit to the Radiotherapy Department, they may need to undergo a computed tomography (CT) scan or lie under a machine called a simulator. The CT scanner or simulator takes an X-ray of the area to be treated.
The treatment is planned by a radiotherapy specialist (radiotherapist). Marks may be drawn on your child’s skin to help the technician administering the treatment position them accurately. This ensures that the treatment is always delivered to the correct area.
Sometimes a mold or mask is made to keep the affected part of the body still during treatment. Specialist doctors or nurses will provide more information if your child needs a mold or mask.
TREATMENT SESSIONS
At the beginning of each radiotherapy session, the radiotherapy technician will carefully position your child on the couch, ensuring they are comfortable. Your child will need to be alone in the room, but they can communicate with the technician, who is observing from the adjoining room.
Radiotherapy is not painful, but during the treatment, your child needs to remain completely still for a few minutes. General anesthesia may be necessary to ensure the treatment can be carried out safely.
Radiotherapy will not make your child radioactive, and it is safe for them to be around other people.
There are different types of radiotherapy, including proton therapy.
A stem cell transplant (sometimes called a bone marrow transplant) allows your child to receive much higher doses of chemotherapy than usual. This can improve the chances of curing the cancer but comes with more side effects.
Bone marrow and stem cells – Bone marrow is a spongy material found inside some of our hollow bones. Bone marrow contains stem cells, which are very early-stage cells that develop into the three different types of blood cells. Once the cells are fully matured, they are released into the bloodstream.
Stem cell transplant – Before a stem cell transplant, stem cells are collected either from the bone marrow or the blood. Your child will then receive very high doses of chemotherapy, usually over several days. Sometimes, whole-body radiotherapy, known as total body irradiation, is also given.
In addition to destroying any remaining cancer cells, the high doses of chemotherapy also destroy the bone marrow cells, which is essential for the transplant to take place (so the body can accept new marrow).
After chemotherapy, your child receives the previously collected stem cells through an infusion. The stem cells enter the bone marrow and begin producing mature blood cells again.
The main types of transplant:
Autologous or autotransplant – This type uses your child’s own stem cells. The stem cells are collected some time before treatment and stored until they are needed.
Allogeneic – This type uses stem cells from a donor and is also known as an allograft. An allogeneic transplant is a more complex procedure than an autologous transplant and is only performed in specialized hospitals. Recovery can take several months.
There are several ways to help reduce your child’s risk of infection:
– Good hand hygiene – always make sure hands are washed and cleaned regularly with soap and water, especially after using the bathroom, before eating or drinking, and after touching animals. Alcohol gel is a good way to quickly disinfect hands that have already been washed. This is good advice for the whole family to follow;
– Avoid anyone who is obviously infected, such as those coughing or sneezing excessively, for example on public transport, in shops, cinemas, during trips, or visiting your home;
– Drink bottled water;
– Vaccines / immunizations for the family – ensure your child’s doctor provides comprehensive advice on rubella, measles, live vaccines, and flu.
It is natural to want to help your child in every possible way.
Some parents turn to complementary treatments to help their children stay healthy, reduce side effects, and improve their sense of well-being. If you want your child to undergo a complementary treatment, it is important to discuss it with your child’s doctor beforehand, as some treatments may interfere with or interact with hospital care.
In order to discover new and better treatments for cancer, studies and research on the disease are conducted. Trials involving patients are known as clinical trials. The availability of clinical trials enables increasingly better outcomes in the treatment of pediatric cancer.
Types of research:
– Testing new treatments, such as new chemotherapy;
– Testing new treatments, such as novel chemotherapy;
– Comparing the effectiveness of medications used to manage symptoms;
– Discovering how cancer treatments work;
– Seeking to improve the quality of life and services for children and young people who have been treated for cancer;
– Examining the biology of cancer and its treatment;
– Determining which treatments are most cost-effective.
Trials are the only reliable way to find out whether a different type of surgery, chemotherapy, radiotherapy, or other treatment is better than what is currently available. The regular and effective participation of the three Portuguese pediatric oncology reference centers in clinical trials requires the allocation of financial and human resources, such as having qualified staff with dedicated research time. This has not been possible, despite efforts by clinicians, researchers, parents, and patients advocating for more resources and investment in this area. In Portugal, the participation of pediatric cancer patients in clinical trials remains minimal.
Knowing what to say and how much information to share with your child can be one of the most challenging aspects. Depending on their age, they may want to know what will happen to them, particularly regarding treatments, side effects (such as nausea and hair loss), how long they will stay in the hospital, what will happen to their relationships with friends, school, leisure activities, and other possible matters.
Some suggestions:
– Seek guidance from doctors, nurses, or psychologists on how to talk with your child;
Use Acreditar’s informational books to explain the illness and other related issues.
The illness and its treatments require increased attention to the sick child or adolescent, which, on top of all the inherent changes, will impact their siblings. They may feel scared about the illness, guilty, or sad due to the absence of their parents and the sick sibling.
Some suggestions:
– Acreditar has a book aimed at siblings. See it here.
– Whenever possible, involve siblings in the illness process, give them space to express their questions and fears, and ask for their help with small tasks;
Spend quality time with the siblings, giving them the attention and reassurance they need;
Psychological support from Acreditar is also available for them. Contact us.
Ao subscrever está a aceitar a Política de Privacidade da Acreditar. Damos muito valor à sua privacidade e por isso garantimos a confidencialidade dos seus dados.
