Childhood Leukemia

Source: American Cancer Society

 

What are the differences between cancers in adults and children?

The types of cancers that develop in children are different from the types that are found in adults. Unlike many cancers in adults, childhood cancers are not strongly linked to lifestyle or environmental risk factors. In most cases, childhood cancers tend to respond better to treatments such as chemotherapy (chemo). Children’s bodies also tend to withstand chemo better than adults’ bodies do. But chemo and other treatments can have some long-term side effects, so children who survive their cancer need careful attention for the rest of their lives.

Children and teens with cancer and their families have special needs that are best met by children’s cancer centers. Treatment in these centers offers the advantage of a team of experts with experience in treating children. The team can include (besides doctors and nurses) psychologists, social workers, child life specialists, educators, and others.

In the United States, most children with cancer are treated at a pediatric cancer center that is a member of the Children’s Oncology Group (COG). All of these centers are part of a university or a children’s hospital. As doctors have learned more about treating childhood cancer, it has become even more important that treatment be given by experts in these diseases.

To find a listing of COG centers by state, go to their website at www.curesearch.org/resources/cog.aspx.

 

What is childhood leukemia?

Leukemia is a cancer of the blood-forming cells. Most of time, it is a cancer of the white blood cells, but some leukemias start in other kinds of blood cells. Leukemia starts in the bone marrow, the soft inner parts of certain bones where new blood cells are made, and quickly spreads to the blood. From there it can go to the lymph nodes, spleen, liver, brain and spinal cord, and other organs.

 

In contrast, some other types of childhood cancer, such as Wilms tumor (a kidney cancer), can start in other organs and then spread to the bone marrow (or elsewhere). But those cancers are not leukemia.

Normal bone marrow, blood, and lymphoid tissue

To understand the different types of leukemia, it helps to know something about the blood and lymph systems.

Bone marrow

Bone marrow is the soft, spongy, inner part of bones. It is where all new blood cells are made. In babies, new blood cells are made in nearly all of the bones of the body. But by the teenage years they are made mostly in the flat bones such as those of the skull, shoulder blades, ribs, pelvis, and back bones.

Bone marrow is made up of a small number of blood-forming cells (blood stem cells), other early forms of blood cells, fat cells, and tissues that help the blood cells grow. Early blood cells can grow to become red blood cells, white blood cells, or platelets.

Red blood cells

Red blood cells carry oxygen from the lungs to all other tissues of the body and take carbon dioxide back to the lungs to be removed.

Platelets

Platelets are actually pieces that break off from certain bone marrow cells. Platelets help stop bleeding by plugging holes in blood vessels caused by cuts or bruises.

White blood cells

White blood cells (also called leukocytes) help defend the body against germs. There are quite a few types (and subtypes) of white blood cells. Each has a special role to play in protecting the body against infection. The 3 main types of white blood cells are lymphocytes, granulocytes, and monocytes.

  • Lymphocytes: Lymphocytes are the main cells that make up lymphoid tissue, a major part of the immune system. The immune system helps the body fight off infections. More information about the lymphocytes is given below.
  • Granulocytes: The main job of these white blood cells is to destroy germs. Granulocytes go through several changes as they grow from early cells to mature, infection-fighting cells.
  • Monocytes: Monocytes are also important in protecting the body against germs. After a short time in the bloodstream, they enter tissues to become macrophages, which can destroy some germs by surrounding and “eating” them.

Lymphoid tissue

Lymphoid tissue is the main part of the immune system. It is found in many places throughout the body including lymph nodes, the thymus, the spleen, the tonsils and adenoids, and the bone marrow. It is also scattered within other systems such as the digestive system.

The main cell type that forms lymphoid tissue is the lymphocyte. These are the cells from which the most common type of leukemia in children, acute lymphocytic leukemia (ALL), develops. The 2 main types of lymphocytes are:

  • B lymphocytes (or B cells)
  • T lymphocytes (or T cells)

Normal T cells and B cells do different jobs within the immune system. Although both can develop into leukemia, B-cell leukemias are much more common than T-cell leukemias.

 

Types of leukemia in children

Leukemia can be either fast growing (acute), or slower growing (chronic). Almost all leukemia in children is acute.

Acute leukemias

There are 2 main types of acute leukemia:

  • Acute lymphocytic leukemia (ALL), also called acute lymphoblastic leukemia, accounts for about 3 out of 4 cases of childhood leukemia. This leukemia starts from the lymphoid cells in the bone marrow.
  • Acute myelogenous leukemia (AML), also called acute myeloid leukemia, accounts for most of the remaining cases. This leukemia starts from the cells that form white blood cells (other than lymphocytes), red blood cells, or platelets.
  • Hybrid or mixed lineage leukemias are rare. The cells have features of both ALL and AML. In children they are most often treated like ALL and respond to treatment like ALL.

Chronic leukemias

Chronic leukemia is also divided into 2 types. Chronic myeloid leukemia (CML) is rare in children. Chronic lymphocytic leukemia (CLL) is almost never seen in children and is not covered here.

Juvenile myelomonocytic leukemia (JMML)

This rare type of leukemia is neither chronic nor acute. It isn’t as fast growing as AML or as slow as CML. It occurs most often in young children (under age 4). Symptoms can include pale skin, fever, cough, trouble breathing (due to too many white blood cells in the lungs), and a swollen spleen and lymph nodes.

 

How many children get leukemia?

Leukemia is the most common cancer in children and teens. It accounts for almost 1 out of 3 of cancers in children. Even so, childhood leukemia is a rare disease.

Acute lymphocytic leukemia (ALL) accounts for about 3 out of 4 the leukemia cases among children and teens. Most of the rest of the cases will be acute myelogenous leukemia (AML). Chronic leukemia is rare in children.

ALL is most common in early childhood, peaking between 2 and 4 years of age. Cases of AML are more spread out across the childhood years, although it is slightly more common during the first 2 years of life and during the teenage years.

 

What are the risk factors for childhood leukemia?

The exact cause of most cases of leukemia is not known. But doctors have found that this cancer is linked to a few risk factors.

A risk factor is something that increases a person’s chance of getting a disease. Different cancers have different risk factors. Some risk factors, such as smoking, can be controlled. Others, like a person’s age or family history, can’t be changed.

Lifestyle risk factors such as diet, body weight, exercise, and tobacco use play a major role in many adult cancers. But these factors often take many years to affect cancer risk, and they are not thought to play much of a role in childhood cancers, including leukemias.

There are a few known risk factors for childhood leukemia. But most children with leukemia do not have any known risk factors, and the cause of their cancer is not known at this time.

Genetic risk factors

Genetic risk factors are those that are part of our DNA. DNA is the substance that carries our genes, the instructions for nearly everything our cells do. While we don’t know the exact cause of most cases of leukemia, during the past few years scientists have made great progress in learning how certain changes in DNA can cause bone marrow stem cells to develop into leukemia. But while some genetic factors increase the risk of childhood leukemia, most cases of leukemia are not linked to any known genetic causes.

Children with certain genetic conditions such as Li-Fraumeni syndrome, Down syndrome, Klinefelter syndrome, and others have an increased risk of leukemia. (A syndrome is a cluster of signs and symptoms that point to a certain disease or disorder.) Other genetic diseases that cause children to be born with an abnormal immune system may also increase their risk of getting leukemia.

Brothers and sisters of children with leukemia have a slightly higher chance of getting leukemia, although the overall risk is still low. The risk is higher among identical twins. If an identical twin develops childhood leukemia, the other twin has about a 1 in 5 chance of getting leukemia as well. This risk is even higher if the leukemia starts in the first year of life.

Having a parent who develops leukemia as an adult does not seem to raise a person’s risk of leukemia.

Lifestyle risk factors

For the most part, lifestyle risk factors such as diet and exercise play a very small role (if any) in childhood cancer risk, even though they are important in adult cancers. Some studies have suggested that a mother drinking a lot of alcohol during pregnancy may increase the risk of leukemia in her child, but not all studies have found such a link.

Environmental risk factors

Environmental risk factors are things around us such as radiation and certain chemicals, which increase the risk of getting diseases like leukemia.

Radiation

Exposure to high levels of radiation is a risk factor for childhood leukemia. Japanese atomic bomb survivors had a much higher risk of getting AML. There may also be some risk if a fetus is exposed to radiation within the first months of pregnancy, although the extent of the risk is not clear.

It is not known how much risk there might be when children are exposed to lower levels of radiation, such as from x-rays or CT scans. Any risk increase is likely to be small, but to be safe, most doctors do not order these tests for pregnant women or children unless they are really needed.

Exposure to chemo drugs and certain other chemicals

Children and adults who were treated with chemo for other cancers have a higher risk of getting a second cancer such as AML later in life. These leukemias usually develop within 5 to 10 years of treatment and tend to be hard to treat.

Exposure to chemicals like benzene (a solvent used in the cleaning industry and in the making of some drugs, plastics, and dyes) may cause AML in adults and, rarely, in children. Chemical exposure is more strongly linked to an increased risk of AML than to ALL.

Some studies have found a possible link between childhood leukemia and household exposure to pesticides, either during pregnancy or early childhood. More research is needed to try to confirm these findings.

Weakened immune system

Patients who are taking drugs to suppress their immune systems (mainly organ transplant patients) have a higher risk of getting certain cancers, such as lymphoma and ALL.

Other possible risk factors

A few studies have suggested that some childhood leukemias may be caused by a combination of genetic and environmental factors. For example, certain genes normally control how our bodies break down and get rid of harmful chemicals. Some people have different versions of these genes that make them less effective. Children who inherit these genes may not be as able to break down harmful chemicals if they are exposed to them. The combination of genetics and exposure might increase their risk for leukemia.

Many other possible risk factors have been studied, such as living near power lines or nuclear power plants, or having infections early in life. But so far, most studies have not found strong links between any other risk factors and childhood leukemia.

 

Can childhood leukemia be prevented?

Right now there is no known way to prevent most cases of leukemia. Unlike some other types of cancer, leukemia is usually not linked to lifestyle risk factors.

For some children, treatment with chemotherapy (chemo) or radiation for other, earlier cancers may cause leukemia later on. But the clear need to treat life-threatening diseases with chemo, radiation therapy, or organ transplant must be balanced against the small chance of developing leukemia several years later.

Because the cause of most cases of leukemia is not known, parents of children with leukemia need to know that there is nothing they could have done to prevent this illness.

 

How is childhood leukemia found?

At this time, there are no special tests advised to help find leukemia early. The best way to find the disease early is for the parents to call the doctor right away if they notice that their child has any of the symptoms listed below.

Careful, regular medical checkups are important for children who have been treated with chemotherapy (chemo) or radiation therapy for an earlier cancer, children who have certain genetic conditions (such as Li-Fraumeni syndrome or Down syndrome), and children who have had organ transplants. These children are at greater risk for certain types of leukemia.

Childhood leukemia is often found because a child has symptoms that prompt a visit to the doctor. The exams and tests below are used to find the disease, measure how advanced it may be, and help decide what type of leukemia it is. That way, treatment can be tailored to provide the best chance of success.

Signs and symptoms of childhood leukemia

Most of the signs and symptoms of leukemia result from a lack of normal blood cells. This happens because the cancer cells crowd out the normal cells that make blood in the bone marrow. The leukemia cells may spread to other parts of the body, which can also cause symptoms.

Keep in mind that many of the symptoms listed here are most often caused by other problems – not leukemia. Still, it’s important to let your child’s doctor know about them so that the cause can be found and treated, if needed.

Tiredness (fatigue) and pale skin: A child may be very tired, weak, dizzy, pale, or short of breath. These problems are caused by a shortage of red blood cells called anemia.

Infections and fever: A child with leukemia may have a high fever and an infection that doesn’t get better with antibiotics. This can happen because there are not enough normal white blood cells to fight the infection. Although children with leukemia may have very high white blood cell counts, the cells are not normal and may not protect against infection the way they should.

Easy bleeding or bruising: A child with leukemia may bruise easily or bleed a lot from small cuts or nosebleeds. There may be small red spots on the skin caused by bleeding from tiny blood vessels. The bleeding is caused by a lack of blood platelets, which are needed to plug holes in blood vessels.

Bone or joint pain: Some children will have bone pain or joint pain. This is from the build-up of leukemia cells near the surface of the bone or inside the joint.

Swelling of the belly (abdomen): Leukemia can cause the liver or spleen to get larger. The doctor often can feel this swelling.

Loss of appetite and weight loss: If the spleen or the liver becomes large enough, it may press against other organs like the stomach. This can limit the amount of food that can be eaten, leading to a loss of appetite and weight loss over time.

Swollen lymph nodes: Leukemia can spread to lymph nodes causing them to swell. The child, a parent, or a doctor or nurse might notice swollen nodes as lumps under the skin on the sides of the neck, in the groin, in the underarm area, or above the collarbone. Swelling of the lymph nodes inside the chest or abdomen (belly) is usually found by tests such as CT or MRI scans. (An enlarged lymph node in a child is more often a sign of an infection than leukemia, but it should be checked by a doctor and followed closely.)

Coughing or trouble breathing: The T-cell type of acute lymphocytic leukemia (ALL) often involves the thymus, a small organ found in the chest behind the breastbone. Enlargement of the thymus or of lymph nodes inside the chest can press on the nearby windpipe. This can lead to coughing or trouble breathing.

Swelling of the face and arms: A large vein that carries blood from the head and arms back to the heart passes next to the thymus. Growth of the thymus may press on this vein, causing the blood to “back up” in the veins. This can lead to swelling and a bluish-red color of the head, arms, and upper chest. It can also cause headaches, dizziness, and a change in consciousness if it affects the brain. This is known as SVC syndrome. Patients with this problem need to see a doctor right away.

Headache, seizures, or vomiting: Leukemia cells can spread outside the bone marrow into the brain and spinal cord, causing headaches, trouble thinking, weakness, seizures, vomiting, problems with balance, and blurred vision. It can spread to other organs as well.

Rashes or gum problems: In children with acute myelogenous leukemia (AML), cancer cells can spread to the gums, causing swelling, pain, and bleeding. Spread to the skin can cause spots that look like rashes.

Extreme tiredness and weakness: One rare but very serious symptom of AML is extreme tiredness, weakness, and slurring of speech. This can happen when very high numbers of leukemia cells make the blood too thick and reduce the flow of blood to the brain.

Tests used to find leukemia

Most of the symptoms of leukemia are common and can be caused by something other than cancer. The doctor will want to do certain tests to find out if the child has leukemia and, if so, what type it is.

Medical history and physical exam

The doctor will want to get a complete medical history, including how long your child has had symptoms and whether your child has any risk factors. A family history of cancer, especially leukemia, may also be important.

The physical exam will likely focus on any swollen lymph nodes, areas of bleeding or bruising, or signs of infection. A full exam of the nervous system may also be done. The child’s eyes and mouth will likely be looked at carefully. The doctor will feel the belly for signs of a swollen spleen or liver.

The doctor may also get a blood sample to check your child’s blood counts. If these are not normal, the doctor may refer you to a childhood cancer doctor (a pediatric oncologist), who may run one or more of the tests described below.

Types of tests used to look for leukemia in children

Blood cell counts: Blood tests will be done on blood drawn from a vein or from a “finger stick.” Most children with leukemia will have too many white cells in their blood and not enough red blood cells or platelets. Also, the white blood cells will be blasts, an early type of blood cell normally found in the bone marrow but not in the blood. Changes in the numbers of different cell types and how these cells look under the microscope often make the doctor suspect leukemia. But usually a sample of bone marrow will need to be taken to be certain.

Bone marrow aspiration and biopsy: Bone marrow samples are taken by doing a bone marrow aspiration and biopsy – 2 tests that are usually done at the same time. The samples are most often taken from the back of the pelvic (hip) bones, although in some cases they may be taken from the breastbone or other bones.

These tests involve removing small amounts of bone marrow from the bone with thin needles. The samples are sent to the lab to see if cancer cells are present. These tests are also used later to see if the leukemia is responding to treatment.

For these tests, the area around the bone is numbed and the child may be given a drug to reduce pain or be asleep during the test. Once the tests are done, pressure will be applied to the site to help prevent any bleeding

Spinal tap (lumbar puncture): This test is done to look for leukemia cells in the liquid around the brain and spinal cord (cerebrospinal fluid or CSF).

For this test, the doctor first numbs an area in the lower part of the back over the spine. The doctor may also give the child medicine to make him or her sleep during the test. A small hollow needle is placed between the bones of the spine to draw out some of the fluid, which is checked for leukemia cells. It is important that someone who is an expert does this test. If the spinal tap isn’t done right and some blood leaks into the CSF, leukemia cells could get into the fluid and grow there.

For children already known to have leukemia, a lumbar puncture can also be used to give chemotherapy drugs into the CSF to try to prevent or treat the spread of leukemia to the spinal cord and brain.

Lymph node biopsy: For this test, a whole lymph node is removed. If the node is near the skin’s surface, this is a simple operation. But it may be more complex if the node is inside the chest or belly. Most often the child will need general anesthesia (where the child is in a deep asleep). This test is rarely needed for children with leukemia.

Lab tests for leukemia

A doctor with special training in lab tests (a pathologist) will look at all of the test samples (blood, bone marrow, CSF, and lymph node tissue) under a microscope. The doctor looks at the size and shape of the cells as well as other features to classify the cells into specific types.

A key factor is whether or not the cells look mature. Leukemia cells do not have the features of normal blood cells and do not work well in fighting infections. The most immature cells are called blasts. Having too many blasts in the sample, especially in the blood, is a typical sign of leukemia.

There are also a number of very precise lab tests the doctor might use to diagnose and classify leukemia. You might hear some of the following terms used: cytochemistry, cytogenetics, flow cytometry, FISH, and immunohistochemistry. These tests are explained in detail our document Childhood Leukemia.

Other blood tests: If the child does have leukemia, other blood tests will be done to measure certain chemicals in the blood to see how well the liver, kidneys, and other organs are working. Tests may also be done to check for infections so they can be treated right away.

Imaging tests

Imaging tests are ways of taking pictures of the inside of the body. Leukemia does not usually form tumors, so imaging tests aren’t as useful as they are for other types of cancer. But some of these tests might be done in children with leukemia to get a better idea of the extent of the disease or to look for other problems like infections.

Chest x-rays: A chest x-ray can help tell if the thymus or lymph nodes in the chest are swollen. It can also help to look for pneumonia if the child seems to have a lung infection.

CT (computed tomography) scans: CT scans (sometimes called CAT scans) are special kinds of x-ray tests in which a beam moves around the body, taking pictures from different angles. This test can help tell if the leukemia has spread into lymph nodes in the chest or to organs like the spleen or liver.

Instead of taking one picture, like a regular x-ray, a CT scanner takes many pictures as it rotates around your child. A computer then combines these pictures into detailed pictures of the part of the body that is being studied.

Before the scan, your child may get an injection of a contrast dye (it is put into a vein) or be asked to drink a solution of contrast liquid. This helps better outline abnormal areas in the body. Some people are allergic to the contrast and get hives or, rarely, more serious reactions like trouble breathing and low blood pressure. Be sure to tell the doctor if your child has any allergies or has ever had a reaction to any contrast material used for x-rays.

CT scans take longer than regular x-rays. Your child will need to lie still on a table while it slides in and out of the scanner. Some children may need to be sedated before the test.

Spiral CT (also known as helical CT) is now used in many medical centers. This type of CT scan uses a faster machine that uses less radiation and gives more detailed pictures.

PET/CT scan: In recent years, newer machines have been made that combine the CT scan with a PET (positron emission tomography) scan. For a PET scan, a form of sugar that contains a radioactive atom is injected into the blood. Because cancer cells in the body grow quickly, they absorb large amounts of the sugar. A special camera can then create a picture of areas of radioactivity in the body. The PET/CT scan combines the 2 pictures to give the doctor more details about any areas of cancer.

MRI (magnetic resonance imaging): An MRI is like a CT scan except that magnets and radio waves are used to make the pictures instead of x-rays. MRI scans are helpful in looking at the brain and spinal cord.

MRI scans take longer than CT scans – often up to an hour. Your child may have to lie inside a narrow tube, which can be hard for some children. Drugs are sometimes needed to help them sleep for this test. Newer, more open MRI machines may be another option, but your child will still have to lie still. The MRI machine makes loud buzzing noises and clicks that may scare your child. Some places provide headphones to block this out.

Ultrasound: Ultrasound uses sound waves to make a picture of the inside of the body. Ultrasound can be used to look for enlarged organs inside the belly. This is an easy test to have done. Your child simply lies on a table, and a technician moves a sort of wand over the part of the body being looked at.

Gallium scan and bone scan: These scans are not often done for childhood leukemias, but they may be useful if the child has bone pain that might be caused by infection or cancer in the bones. They are done in a way much like PET scans. If the child has already been found to have leukemia or if a PET scan has already been done, there is often no need for these scans.

 

Classification of childhood leukemia

Most types of cancers are assigned numbered stages to describe their extent in the body, based on the size of the tumor and how far the cancer has spread.

But leukemia is not staged like most other cancers. The cancer starts in the bone marrow and quickly spreads to the blood, so leukemia cells are already throughout the body. The major concern is whether the leukemia cells have also started to collect in other organs such as the liver, spleen, lymph nodes, or central nervous system (brain and spinal cord). For instance, if the cancer cells have spread to the central nervous system in large numbers, they can be seen under a microscope in samples of the cerebral spinal fluid (CSF), the fluid that surrounds the brain and spine. If that has happened, treatment will need to be more intense in order to kill these cells.

The most important factor for leukemias is figuring out the type (ALL vs. AML) and subtype of the leukemia. This is done by testing samples of the blood, bone marrow, and sometimes lymph nodes or CSF. Figuring out the exact type and subtype of leukemia is a complex process that can be hard even for doctors to understand. For more detailed information, please see Childhood Leukemia.

Acute lymphocytic leukemia (ALL)

There are 4 main subtypes of ALL, based on the type of lymphocyte the leukemia cells come from and how mature they are. They are:

  • Early Pre-B cell
  • Pre-B cell
  • Mature B cell
  • T cell

Acute myelogenous leukemia (AML)

AML has many subtypes, based on the type of cell involved and how mature it is. The subtypes of AML are classified by how they look under the microscope and on the changes in the genes or chromosomes in the leukemia cells.

Hybrid or mixed leukemias

These leukemias have cells with features of both ALL and AML when they are tested in the lab. In children, these leukemias are generally treated like ALL and respond to treatment like ALL.

Chronic myelogenous leukemia (CML)

Chronic myelogenous leukemia (CML) is often a slower-growing cancer of early (immature) myeloid bone marrow cells. CML is not common in children, but it can occur.

The course of CML is divided into 3 phases, based mainly on the number of immature white blood cells (blasts) that are seen in the blood or bone marrow. If the leukemia is not cured with treatment, it can progress to more advanced phases over time.

  • Chronic phase
  • Accelerated phase
  • Blast phase

If you have questions about what phase your child’s CML is in, be sure to have the doctor explain it to you.

Prognostic factors in childhood leukemia

Prognostic factors are important in helping the doctor decide whether to use standard treatment or more intense treatment. These factors refer to certain differences among patients that affect the response to treatment. Prognostic factors seem to be more important in ALL than in AML.

Prognostic factors for children with acute lymphocytic leukemia (ALL)

Children with ALL are often divided into standard-risk, high-risk, or very high-risk groups. The higher-risk groups are given more intense treatment. As a rule, children in lower-risk groups have a better outlook than those at very high risk.

There are many prognostic factors used in ALL, but these 2 are the most important. Keep in mind that many children with one or more poor factors can still be cured.

  • Age: Children with B-cell ALL between the ages of 1 and 9 tend to do better. Children younger than 1 and children older than 10 years are at higher risk. The outlook in T-cell ALL isn’t affected much by age.
  • White blood cell count (WBC): Children who have very high white cell counts (greater than 50,000 cells per cubic millimeter) when the leukemia is found are at high risk and need more intense treatment.

Other factors that can affect risk include the subtype of ALL, the child’s gender and race, whether the leukemia has spread to certain organs, chromosome changes in the leukemia cells, and how quickly the leukemia responds to treatment.

Prognostic factors for children with AML

Prognostic factors do not seem quite as important for AML as they are for ALL. These factors can include the age of the child when the AML is found, the white blood cell count, the subtype of AML, certain changes in chromosomes, how the cancer cells look under a microscope, whether the leukemia is a result of treatment for another cancer, and how quickly the leukemia responds to treatment.

Survival rates for childhood leukemia

Some people with cancer may want to know the survival rates for their type of cancer. Others may not find the numbers helpful, or may even not want to know them. Whether or not you want to read about survival rates is up to you. If you would rather not read about the survival rates, skip to the next section, “How is childhood leukemia treated?

The 5-year survival rate refers to the percentage of children who live at least 5 years after their cancer is found. Of course, many children live much longer than 5 years. With acute leukemias, children who are free of disease after 5 years are very likely to have been cured, as it very rare for these cancers to return after such a period of time.

The 5-year survival rate for children with ALL has greatly increased over time and is now more than 85% overall. But current 5-year survival rates are based on children first diagnosed and treated more than 5 years ago. Improvements in treatment since then may mean an even better outlook for children treated today.

The 5-year survival rate for children with AML has also increased over time, and is now in the range of 60% to 70%. However, survival rates can vary depending on the subtype of AML. For instance, most studies suggest that the cure rate for acute promyelocytic leukemia (APL), a subtype of AML, is now higher than 80%.

For chronic leukemias, which are rare in children, 5-year survival rates are less helpful, because some children may live for a long time with the leukemia without actually being cured. In the past, 5-year survival rates for chronic myelogenous leukemia (CML) were reported to be in the range of 60% to 80%. Since newer medicines that work better have been found for CML in recent years, survival rates are likely to be higher now, although these new drugs have not been in use long enough to be sure.

Of course, the outlook for each child is different, depending on a number of things such as the prognostic factors. Talk with your cancer care team if you have questions about your child’s chances of a cure. They know the situation best.

 

How is childhood leukemia treated?

This information represents the views of the doctors and nurses serving on the American Cancer Society’s Cancer Information Database Editorial Board. These views are based on their interpretation of studies published in medical journals, as well as their own professional experience.

The treatment information in this document is not official policy of the Society and is not intended as medical advice to replace the expertise and judgment of your cancer care team. It is intended to help you and your family make informed decisions, together with your doctor.

Your doctor may have reasons for suggesting a treatment plan different from these general treatment options. Don’t hesitate to ask him or her questions about your treatment options.

About treatment

Children and teens with leukemia and their families have special needs. These needs can be met best by cancer centers for children and teens, working closely with the child’s primary care doctor. Treatment in these centers gives you the advantage of having teams of specialists who know the differences between cancers in adults and those in children and teens, as well as the special needs of younger people with cancer.

Your child’s cancer care team will talk to you about treatment options. The most important factor in choosing a treatment is the type of leukemia, although other factors also play a role.

The main treatment for childhood leukemia is chemotherapy (chemo). Other treatments such as surgery and radiation treatment may be used in some cases.

Your doctor should make sure that your child’s treatment reflects his or her risk group. Your child should be treated according to a set of instructions called a protocol from the National Cancer Institute (NCI) or a cooperative study group. This will ensure the most up-to-date treatment for your child. And be sure to ask your doctor about any side effects your child might have from treatment. Many parents find it helpful to bring a note pad or a tape recorder when they talk to the doctor.

Be sure to tell your child’s doctor about any drugs, herbal remedies, or other things you might be giving your child. These could affect how well the treatment works.

The next few sections contain general comments about types of treatments used for childhood leukemia, followed by a discussion of treatment options based on the type of leukemia.

 

Immediate treatment of childhood leukemia

Some children are very ill when they are found to have leukemia. Low blood counts can result in serious problems such as infections, bleeding, and even heart failure. Antibiotics, other drugs, and blood transfusions may be needed to treat or prevent some of these problems before the leukemia is treated.

 

Surgery for childhood leukemia

Unlike most other cancers, surgery has only a small role in the treatment of leukemia. This is because leukemia is a disease of blood and bone marrow and cannot be cured with surgery.

Surgery may be used to help give other treatments. A small plastic tube may be placed into a large vein. The tube, called a central venous catheter (CVC) or a venous access device (VAD), allows medicines such as chemotherapy to be given and blood samples to be removed without the need for repeated needle sticks. The end of the tube stays just under the skin or sticks out in the chest area or upper arm. It is important for parents to learn how to care for the VAD.

In cases where a boy with leukemia has a relapse of the disease in a testicle, surgery may be done to remove the testicle (along with giving chemotherapy to treat the rest of the body).

 

Radiation treatment for childhood leukemia

Radiation therapy is the use of high-energy radiation to kill cancer cells. For children with acute leukemia, radiation might be used to try to prevent or treat cancer in the brain or in the testicles. It can also be used, though rarely, to shrink a tumor that is pressing on the windpipe. But chemotherapy is often used instead since it may work faster.

Radiation to the whole body is often an important part of treatment before a bone marrow or peripheral blood stem cell transplant (see the section, “High-dose chemotherapy and stem cell transplant for childhood leukemia”).

Radiation therapy is much like getting an x-ray, but the radiation is stronger. The procedure itself is painless, but some younger children may need to be sedated to make sure they don’t move during the treatment. Each treatment lasts only a few minutes, although the setup time – getting your child into place for treatment – usually takes longer.

The possible short-term side effects depend on where the radiation is aimed. It can cause sunburn-like skin changes and hair loss in the treated area. Radiation to the belly (abdomen) can sometimes cause nausea, vomiting, or diarrhea. For radiation that includes large parts of the body, the effects may include fatigue and an increased risk of infection.

Longer-term side effects are also possible and are described in the section “Long-term effects of treatment for childhood leukemia.”

 

Chemotherapy for childhood leukemia

Chemotherapy (chemo) refers to the use of drugs to kill cancer cells. Usually the drugs are given either into a vein, into the cerebrospinal fluid (CSF), or as pills. Once the drugs enter the bloodstream, they spread throughout the body. Chemo is the main treatment for nearly all types of leukemia. Children might get several drugs at different times during the course of treatment.

Doctors give chemo in cycles, with each cycle of treatment followed by a rest period. As a rule, AML treatment uses higher doses of chemo over a shorter period of time, while ALL treatment uses lower doses over a longer period of time (about 2 to 3 years).

Immediate side effects

While chemo drugs kill cancer cells, they can also damage normal cells. This happens because they are aimed at cells that are growing quickly such as cancer cells, but in the process they also damage other fast-growing cells. The lining of the mouth and intestines, hair, and bone marrow (where new blood cells are made) all grow quickly and are likely to be damaged by chemo, which can lead to the following side effects:

  • Hair loss
  • Mouth sores
  • Loss of appetite
  • Diarrhea
  • Nausea and vomiting
  • Increased risk of infections (because of low white blood cell counts)
  • Bruising and bleeding easily (from low platelet counts)
  • Tiredness (caused by low red blood cell counts)

These side effects usually go away after treatment ends. And there are often ways to manage these side effects during treatment. For example, there are drugs that can help prevent or reduce nausea and vomiting. Drugs known as growth factors are sometimes given to keep blood counts higher and reduce the chance of infection.

Tumor lysis syndrome can be a side effect of chemo. When large numbers of leukemia cells are killed, they break open and release their contents into the bloodstream. This can affect the kidneys, heart, and nervous system. Giving the child extra fluids or certain drugs that help rid the body of these toxins can help prevent this problem.

Some side effects depend on which drugs are used. Be sure to ask your child’s doctor or nurse about any specific side effects you should watch for and about what you can do to help reduce them.

Long-term side effects

Possible long-term effects of chemo are described in the section, “Long-term effects of treatment for childhood leukemia.”

 

Targeted therapy for childhood leukemia

In recent years, new drugs that are aimed at certain parts of cancer cells have been developed. These are called targeted drugs. They work differently than standard chemotherapy drugs. They often have less severe side effects. Some of these drugs may be useful in certain cases of childhood leukemia.

These drugs are taken daily as pills. Possible side effects include diarrhea, nausea, muscle pain, fatigue, and skin rashes. Often these side effects are mild. A common side effect is swelling around the eyes or in the hands or feet. These drugs may also slow a child’s growth, especially if used before puberty.

 

High-dose chemotherapy and stem cell transplant for childhood leukemia

Stem cell transplant (SCT) can sometimes be used for children whose chances of cure are poor with standard or even intense chemo. SCT allows doctors to use very high doses of chemo. The high doses of these drugs destroy the bone marrow, which keeps new blood cells from being made. This poses a threat to the child’s life. But after treatment is finished, the child gets a transplant of blood-forming stem cells to replace the bone marrow. Stem cells are very early cells that are able to make new blood cells.

Types of transplants

There are 2 main types of stem cell transplants: allogeneic and autologous. The difference is the source of the blood-forming stem cells.

Allogeneic SCT: For childhood leukemia, the blood-forming stem cells come from the blood or bone marrow of another person. This is called an allogeneic stem cell transplant.

Usually the donor is a brother or sister but, rarely, the donor could be an unrelated volunteer. Stored cells from umbilical cord blood have also been used for unrelated donor transplants. These stem cells come from blood drained from the umbilical cord and placenta after a baby is born and the cord is cut.

Autologous SCT: In an autologous stem cell transplant, the patient’s own stem cells are removed from his or her bone marrow or bloodstream. They are frozen until after treatment with chemo and/or radiation and then given back to the patient.

This procedure is not used for childhood leukemia, for a couple of reasons. One concern is that there may be leukemia cells among the stem cells, which could be given back to the child after treatment. And leukemia has more of a chance to relapse if the child’s own stem cells are used.

When SCT may be used

SCT may be used for children with ALL whose leukemia doesn’t respond well to the first treatment or comes back early after going into remission. It is less clear whether it should be used if more than 6 months has passed since the chemo was given. These children will often do well with another round of standard chemo. SCT may also be advised for children with some less common forms of ALL.

Because AML comes back more often, some doctors recommend SCT for some children with AML right after they have gone into remission, especially if the child has a brother or sister who can donate cells. If the cancer comes back after the first round of chemo, then most doctors will suggest SCT as soon as the child goes into remission again.

In any case, it is important that the leukemia is in remission before the transplant. Otherwise, it is more likely to return.

SCT may also offer the best chance to cure some less common types of childhood leukemia, such as juvenile myelomonocytic leukemia (JMML) and CML.

What SCT involves

Here is how the SCT process works: Stem cells are collected from either the bone marrow or from the bloodstream. The cells are frozen and stored.

The child is admitted to the hospital and is given very high doses of chemo (and sometimes radiation) to kill the cancer cells. As a result, all of the normal cells in the bone marrow are also killed. After treatment, the stored stem cells are thawed and given to the child as a blood transfusion. The stem cells settle in the child’s bone marrow over the next few days and start to grow and make new blood cells. For the next few weeks the child is at high risk for serious infections (because of low white blood cell counts), as well as bleeding (because of low platelet counts). Transfusions and antibiotics are often used to prevent or treat these problems.

Patients most often stay in the hospital until a certain white blood cell count (called the ANC) is near 1,000. The child is then seen in an outpatient clinic almost every day for several weeks. Patients may make regular visits to the outpatient clinic for about 6 months, after which time their care may be given by their regular doctors.

Stem cell transplant is a complex treatment that can cause life-threatening side effects. If the doctors think that a child with leukemia might be helped by this treatment, it is important that it be done at a hospital where the staff has a lot or experience with the procedure.

Stem cell transplant can also be very expensive (often costing well over $100,000) and often involves a long hospital stay. Because it is so costly, parents should be sure to get a written approval from their insurer if their child is to have this treatment. Even if the transplant is covered by your insurance, your co-pays or other costs could easily amount to many thousands of dollars. It is important to find out what your insurer will cover before the transplant to get an idea of what you might have to pay.

Side effects of SCT

Side effects from a stem cell transplant can be divided into early and long-term effects.

Short-term side effects: Early side effects are about the same as those of any other type of high-dose chemo (low blood cell counts, mouth sores, nausea, vomiting, diarrhea, hair loss, etc.) and can be severe. These side effects are caused by damage to the bone marrow and other tissues that divide quickly.

One of the most common and serious short-term effects is the increased risk of severe infection. Antibiotics are often given to try to prevent this. Other side effects, like low red blood cell and platelet counts, may mean that the patient will need transfusions or other treatments.

Long-term side effects: Some side effects can go on for a long time. Sometimes they don’t show up until months or even years after the transplant. Long-term side effects could include the following:

  • Graft-versus-host disease (see below)
  • Radiation damage to the lungs
  • Problems with the thyroid or other hormone-making glands
  • Problems with fertility
  • Damage to bones or problems with bone growth
  • Development of another cancer (including leukemia) years later

Graft-versus-host disease (GVHD) is a major concern of an allogeneic (donor) stem cell transplant. It happens when the immune system of the patient is taken over by that of the donor. The donor immune system then begins to attack the patient’s other tissues and organs.

Symptoms can include severe skin rashes with itching and severe diarrhea. The liver and lungs may also be damaged. The patient may also become tired and have aching muscles. If severe enough, the disease can be fatal. Drugs that weaken the immune system are often given to try to keep GVHD under control.

To learn more about stem cell transplants, see our article Stem Cell Transplant (Peripheral Blood, Bone Marrow, and Cord Blood Transplants). You can find out more about long-term effects in the section, “Long-term effects of treatment for childhood leukemia.”

 

Treatment of children with acute lymphocytic leukemia

The main treatment for children with acute lymphocytic leukemia (ALL) is chemotherapy (chemo), which has 3 phases:

  • Induction
  • Consolidation (also called intensification)
  • Maintenance

Children with ALL are divided into risk groups to make sure that the correct types and doses of chemo drugs are given.

Induction

The goal of induction is to bring about a remission. This means that leukemia cells are no longer found in bone marrow samples, the normal marrow cells return, and the blood counts become normal. (A remission is not the same as a cure.) More than 95% of children with ALL will go into remission after 1 month of treatment.

During induction, frequent trips to the doctor will be needed. Your child may spend some or much of this time in the hospital. Children with standard-risk ALL often receive 3 drugs for the first month of treatment. A fourth drug is typically added for high-risk children.

All children will need to have spinal taps to put chemo right into the cerebrospinal fluid (CSF) to try to keep cancer from spreading to the central nervous system (brain and spinal cord). And some, such as those with T-cell leukemia or cancer cells in the CSF, may need radiation to the head, too. This was more common in the past, but recent studies have found that many children even with high-risk ALL may not need radiation therapy if they are given more intense chemo. Doctors try to avoid radiation because, no matter how low the dose, it may cause some problems in thinking and growth.

Consolidation

The goal of this phase (also called intensification) is to get rid of leukemia cells from places where they can “hide.” This phase lasts about 1 to 2 months. Several drugs are used, depending on the child’s risk category. Some children may benefit from a stem cell transplant at this time.

Maintenance

If the leukemia stays in remission after the first 2 phases of treatment, this last phase, maintenance chemo, can begin. The total length of therapy for all 3 phases is 2 to 3 years for most children with ALL. Because boys are at higher risk for relapse than girls, many doctors favor giving them several more months of treatment.

Treatment of residual disease

All these treatment plans may change if the leukemia doesn’t completely go away in the first few months. Soon after treatment has begun the doctor may check the child’s bone marrow to see if the leukemia is going away. If not, treatment may be increased or given for a longer time. When the leukemia seems to have disappeared, the doctor may do a special chemical test to look for leukemia cells. If any are found, then once again, chemo may be increased or prolonged.

Treatment of recurrent ALL

If the leukemia comes back during or after treatment, the child will again be treated with chemo. This may include the same or different drugs, depending on how long the remission lasted. A stem cell transplant may be considered for children whose leukemia comes back within 6 months of starting treatment, especially if there is a brother or sister who is a good match. Stem cell transplant may also be used for other children who relapse after a second course of chemo.

Some children have a relapse in which leukemia cells are found in one part of the body (such as the cerebrospinal fluid or the testicles) but are not found in the bone marrow. These children may have intense chemo, sometimes along with radiation treatment to the affected area.

 

Treatment of children with acute myeloid leukemia

Treatment for most children with acute myeloid leukemia (AML) has 2 phases:

  • Induction
  • Consolidation (intensification)

Compared to treatment for ALL, the treatment for AML generally uses higher doses of chemotherapy (chemo) but for a shorter time. Because treatment is very intense and there is a risk of serious complications, children with AML should be treated in cancer centers or hospitals that have a lot of experience with this disease.

Induction

The combinations of drugs used to treat AML are different from those used for ALL. Treatment is given in cycles that usually last several days. The schedule of treatment may be repeated in 10 days or 2 weeks, depending on how intense the doctor wants the treatment to be. Treatment is repeated until the bone marrow shows no more leukemia. This usually happens after 2 or 3 treatments. Often chemo is put into the cerebrospinal fluid (CSF), too. Usually radiation treatment to the brain is not needed.

Consolidation (intensification)

This phase begins after a remission when no more leukemia cells are seen in the bone marrow. Some children have a brother or sister who would be a good stem cell donor. For these children, a stem cell transplant is often recommended. Most studies have found this improves the chance for long-term survival over chemo alone. But it is also more likely to cause serious complications. For children with good prognostic factors, some doctors recommend just giving high-dose chemo and holding off on the stem cell transplant in case the AML relapses.

For most children, high-dose chemo is given for at least several months. Chemo into the CSF is usually given at the start and every 1 to 2 months for as long as this phase lasts.

Most children with AML (except those with acute promyelocytic leukemia) do not need maintenance chemo.

An important aspect of treatment for AML is supportive care (nursing care, nutrition, antibiotics, blood transfusions, etc.). With this care, a high rate of remission at the end of induction can be achieved.

Treatment of refractory or recurrent AML

Less than 15% of children have refractory AML (leukemia that does not respond to initial treatment). These leukemias are often very hard to cure. The doctor may recommend a stem cell transplant if it can be done.

As a rule, the outlook for a child whose AML comes back after treatment is slightly better than if a remission were never achieved. But this depends on how long the first remission lasted. More than half of these children will go into a second remission with more chemo. The chance of a second remission is better if the first one lasted for at least a year, but long-term second remissions are rare without a stem cell transplant.

Most children whose leukemia has relapsed will be offered a clinical trial in the hope that if a remission is brought about, a stem cell transplant can then be done. Sometimes the doctor may suggest a stem cell transplant even without a remission.

 

Treatment of children with acute promyelocytic leukemia

Treatment of acute promyelocytic leukemia (APL) differs from usual AML treatment. Most children respond well to this treatment.

Induction

Many children with APL may have blood-clotting problems, which can be serious. They may be given a “blood thinner” to help prevent or treat this.

Along with chemotherapy (chemo), children with APL get a drug something like vitamin A called ATRA (all-trans retinoic acid). Although ATRA alone often brings about a remission, combining it with chemo gives better long-term results.

Spread to the brain or spinal cord is very rare with APL, so these areas most often do not need to be treated with chemo.

The side effects of ATRA treatment differ from those of standard AML chemo because of a possible problem called retinoic acid syndrome. It can include breathing problems due to fluid build-up in the lungs, low blood pressure, kidney damage, and severe fluid build-up elsewhere in the body. It can often be treated by stopping the ATRA for a while and giving a steroid.

Consolidation (Intensification)

This is usually much like induction, involving both ATRA and chemo. Because of the success of this treatment, stem cell transplant is not usually advised as long as the child stays in remission.

Maintenance

Children with APL may get maintenance therapy with ATRA, often with chemo, for about a year.

Relapsed APL

If the leukemia comes back after treatment, most children can be put into a second remission. Arsenic trioxide is a drug that works very well in this setting, but it can sometimes cause problems with heart rhythms. Children getting this drug need to have their blood mineral levels watched closely. ATRA plus chemotherapy may be another option. A stem cell transplant may be considered once a second remission is brought about.

 

Treatment of children with juvenile myelomonocytic leukemia

Juvenile myelomonocytic leukemia (JMML) is fairly rare, and there is no standard treatment for this leukemia. A stem cell transplant offers the best chance to cure JMML and is the treatment of choice when possible. About half of the children with JMML who get a stem cell transplant are still free of leukemia after several years. Sometimes, even if the leukemia recurs, a second stem cell transplant can be helpful. Because JMML is hard to treat with current chemo drugs, taking part in a clinical trial looking at newer drugs may be a good option for children who cannot get a stem cell transplant.

 

Treatment of children with chronic myelogenous leukemia

Chronic myelogenous leukemia (CML) is rare in children, but it does occur. Treatment in children is like treatment in adults.

Some targeted drugs attack cells with the Philadelphia chromosome, which is the gene abnormality in CML. These drugs usually work well at keeping CML under control, often for a long time and with less severe side effects than with chemo drugs. But these drugs do not seem to cure CML when used by themselves, and they must be taken every day. Doctors are now looking at whether adding these drugs to stem cell transplant plans can help increase cure rates.

To learn more about CML and its treatment, see our document, Leukemia–Chronic Myeloid Overview.

 

More information on treating childhood leukemia

For more details on treatment options – including some that may not be addressed in this document – the National Cancer Institute (NCI) and CureSearch are good sources of information.

The NCI provides treatment guidelines via its telephone information center (1-800-4-CANCER) and its Web site (www.cancer.gov). CureSearch is a combined effort of the National Childhood Cancer Foundation and the Children’s Oncology Group (COG). CureSearch can be contacted via telephone at 1-800-458-6223 or on the Web at www.curesearch.org.

 

Status of acute leukemia after treatment

How well acute leukemia (ALL or AML) responds to the first (induction) treatment has an effect on long-term outlook.

A remission or complete remission is usually defined as showing no leukemia after the 4 to 6 weeks of induction treatment. This means the bone marrow has fewer than 5% blast cells, the blood cell counts are normal, and there are no signs or symptoms of the disease. A molecular complete remission means there is no evidence of leukemia cells in the bone marrow, even when using very sensitive lab tests. Even when leukemia is in remission, this does not always mean that it has been cured.

Minimal residual disease (MRD) is a term used after treatment when leukemia cells can’t be found in the bone marrow using standard lab tests (such as looking at cells under a microscope), but more sensitive tests find that leukemia cells are still in the bone marrow. Children with MRD during or after induction are more likely to have their leukemia come back and may require more intense treatment.

Active disease means that either the leukemia is still present during treatment or that the disease has relapsed (come back) after treatment. For a patient to be in relapse, more than 5% of the marrow must be made up of blast cells.

 

Clinical trials for childhood leukemia

You may have had to make a lot of decisions since you’ve been told that your child has leukemia. One of the most important decisions you will make is deciding which treatment is best for your child. You may have heard about clinical trials being done for his or her type of cancer. Or maybe someone on your health care team has mentioned a clinical trial to you.

Clinical trials are carefully controlled research studies that are done with patients who volunteer for them. They are done to get a closer look at promising new treatments or procedures.

If you would like your child to take part in a clinical trial, you should start by asking your doctor if your clinic or hospital conducts clinical trials. You can also call our clinical trials matching service for a list of clinical trials that meet your medical needs. You can reach this service at 1-800-303-5691 or on our Web site at www.cancer.org/clinicaltrials. You can also get a list of current clinical trials by calling the National Cancer Institute’s Cancer Information Service toll-free at 1-800-4-CANCER (1-800-422-6237) or by visiting the NCI clinical trials Web site at www.cancer.gov/clinicaltrials.

There are requirements your child must meet to take part in any clinical trial. If he or she does qualify for a clinical trial, it is up to you whether or not to enter (enroll in) it.

Clinical trials are one way to get state-of-the art cancer treatment. Sometimes they may be the only way to get access to some newer treatments. They are also the only way for doctors to learn better methods to treat cancer. Still, they are not right for everyone.

You can get a lot more information on clinical trials in our document called Clinical Trials: What You Need to Know. You can read it on our Web site or call our toll-free number and have it sent to you.

 

Complementary and alternative therapies for childhood leukemia

When your child has leukemia you are likely to hear about ways to treat his or her cancer or relieve symptoms that your doctor hasn’t mentioned. Everyone from friends and family to Internet groups and Web sites may offer ideas for what might help. These methods can include vitamins, herbs, and special diets, or other methods such as acupuncture or massage, to name a few.

What are complementary and alternative therapies?

It can be confusing because not everyone uses these terms the same way, and they are used to refer to many different methods. We use complementary to refer to treatments that are used along with your regular medical care. Alternative treatments are used instead of a doctor’s medical treatment.

Complementary methods: Most complementary treatment methods are not offered as cures for cancer. Mainly, they are used to help the person with cancer feel better. Some examples of methods that are used along with regular treatment are: art therapy or play therapy to reduce stress, acupuncture to help relieve pain, or peppermint tea to relieve nausea. Some complementary methods are known to help, while others have not been tested. Some have been proven not to be helpful, and a few are even harmful.

Alternative treatments: Alternative treatments may be offered as cancer cures. These treatments have not been proven safe and effective in clinical trials. Some of these methods may be harmful, or have life-threatening side effects. But the biggest danger in most cases is that you may lose the chance to be helped by standard medical treatment. Delays or interruptions in your medical treatments may give the cancer more time to grow and make it less likely that treatment will help.

Finding out more

It is easy to see why parents who have children with cancer think about alternative methods. You want to do all you can to help fight the cancer, and the idea of a treatment with no few or no side effects sounds great. Sometimes medical treatments like chemotherapy can be hard to take, or they may no longer be working. But the truth is that most of these alternative methods have not been tested and proven to work in treating cancer.

As you think about your child’s options, here are 3 important steps you can take:

  • Look for “red flags” that suggest fraud. Does the method promise to cure all or most cancers? Are you told not to use regular medical treatments? Is the treatment a “secret” that requires you to take your child to certain providers or to another country?
  • Talk to your child’s doctor or nurse about any method you are thinking of using.
  • Contact us at 1-800-227-2345 to learn more about complementary and alternative methods in general and to find out about the specific methods you are looking at.

The choice is yours

You always have a say in how your child’s cancer is treated. If you want to consider a non-standard treatment, learn all you can about the method and talk to your child’s doctor about it. With good information and the support of your child’s health care team, you may be able to safely use the methods that can help your child while avoiding those that could be harmful.

 

What are some questions you can ask the doctor about childhood leukemia?

As you cope with your child’s cancer and cancer treatment, we encourage you to have honest, open talks with the doctor. Feel free to ask any question that’s on your mind, no matter how small it might seem. Here are some questions you might want to ask. Be sure to add your own questions as you think of them. Nurses, social workers, and other members of the treatment team may also be able to answer many of your questions.

  • Would you write down exactly what kind of leukemia my child has?
  • Are there any factors that might affect my child’s outlook?
  • Are there other tests that need to be done before we can decide on treatment?
  • Are there other doctors we need to see?
  • How much experience do you have treating this type of leukemia?
  • Should we get a second opinion?
  • What treatment choices do we have?
  • What do you recommend and why?
  • Should we think about a stem cell transplant?
  • What should we do to be ready for treatment?
  • How long will treatment last? What will it be like?
  • How much of the treatment will need to be done in the hospital?
  • How will treatment affect our daily activities?
  • What risks or side effects are there to the treatments you recommend?
  • Which side effects start shortly after treatment and which ones may happen later on?
  • How might treatment affect my child’s ability to learn, grow, and develop?
  • Will treatment affect my child’s future ability to have children?
  • What are the chances of curing the leukemia?
  • What would our options be if the treatment doesn’t work or if the leukemia comes back?
  • What type of follow-up will we need after treatment?
  • How will we pay for treatment? Will our insurance cover all or part of it?

 

Moving on after treatment

After treatment for childhood leukemia, the main concerns for most families are the short and long-term effects of the leukemia and its treatment, and concerns about whether the cancer might come back.

Of course, it’s normal to want to put the leukemia and its treatment behind you and to get back to a life that doesn’t revolve around the cancer. But it’s important to realize that follow-up care is a central part of this process that offers your child the best chance for recovery and long-term survival.

Follow-up exams

Follow-up exams are needed for several years after treatment. These visits are very important. The doctor will watch for signs that the cancer has come back, as well as for short-term and long-term side effects of treatment.

Checkups most often include careful physical exams, lab tests, and sometimes, imaging tests. These checkups will likely take place monthly during the first year, and then less often for at least 5 years after treatment. After that time, most children see their doctor at least yearly for a checkup.

If the leukemia returns, it usually does so during treatment or within a year or so after treatment ends. It’s unusual for ALL or AML to come back if there are no signs of the disease within the next 2 years.

Follow-up care gives you a chance to discuss questions and concerns that come up during and after your child’s recovery. For example, almost any cancer treatment can have side effects. Some may last for a few weeks to several months, but others can be permanent. It is important to report any new symptoms to the doctor right away, so that the cause can be found and treated, if needed.

 

Emotional issues after treatment of childhood leukemia

Emotional issues may come up both during and after treatment. Factors such as the child’s age when the leukemia was found and the extent of treatment may play a role here.

During treatment, families tend to focus on the daily aspects of getting through it and beating the leukemia. But once treatment is finished, a number of emotional concerns may arise. Some of these may last a long time. They can include things like:

  • Dealing with physical changes that result from the treatment
  • Worries about the leukemia returning or new health problems developing
  • Feelings of resentment for having had leukemia or having to go through treatment when others do not
  • Concerns about being treated differently or discriminated against (by friends, classmates, coworkers, employers, etc.)
  • Concerns about dating, marrying, and having a family later in life

No one would choose to have leukemia, but for many childhood leukemia survivors, the experience can have positive effects, helping to establish strong self-values. Other survivors may have a harder time recovering, adjusting to life after cancer, and moving on. It is normal to have some fear or other emotions after treatment, but feeling overly worried, depressed, or angry can affect many aspects of a young person’s growth. It can get in the way of relationships, school, work, and other aspects of life. With support from family, friends, other survivors, mental health professionals, and others, many people who have survived cancer can thrive in spite of the challenges they’ve had to face.

 

Long-term effects of treatment for childhood leukemia

Because of major advances in treatment, more children treated for cancer are living into adulthood. With childhood cancer survivors living longer, their health as they get older has come more into focus in recent years.

Just as the treatment of childhood cancer requires a very special approach, so does follow-up and watching for late effects. Careful follow-up after cancer treatment is very important.

Childhood leukemia survivors are at risk, to some degree, for several possible late effects of their cancer treatment. This risk depends on a number of factors, such as the type of leukemia, the treatments given, doses of cancer treatment, and age at time of treatment.

Children who have been treated for leukemia are at higher risk of getting other cancers later in life. One of the most serious side effects of treatment for acute lymphocytic leukemia (ALL) is the small chance of getting acute myelogenous leukemia (AML) at a later time. This happens in about 5% of treated patients after they have had certain types of chemotherapy (chemo) drugs. Of course, the risk of getting these second cancers must be balanced against the clear value of treating a life-threatening disease like leukemia with chemo.

Late effects may also include heart or lung problems after getting certain chemo drugs or radiation to these parts of the body. The risks of heart disease and stroke later in life are much higher among those treated for ALL as children, so careful follow-up is very important. ALL survivors are also more likely to be overweight and to have high blood pressure.

Children whose treatment for leukemia has included radiation therapy of the brain may have some decrease in their learning ability Doctors try to limit radiation to the brain whenever they can.

Survivors of childhood leukemia often suffer from psychological problems. They also may have some problems with normal functioning and school work. These often can be helped with support and encouragement.

Some treatments may affect a child’s growth, and they may end up a bit shorter as adults. This is especially true after stem cell transplants. This can be helped by the treating survivors with growth hormone, if needed.

Cancer treatment may also affect sexual development and the ability to have children in some cases.

Bone damage or thinning of the bones (osteoporosis) may result from the use of some steroid drugs.

There may be other possible problems from treatment that your child’s doctor should carefully review with you before starting treatment. Special centers are often the best places for children to be treated when such effects happen.

To help improve follow-up care of childhood cancer survivors throughout their lives, the Children’s Oncology Group (COG) has written long-term follow-up guidelines for doctors. These guidelines describe in detail the suggested long-term follow-up care based on the treatments the child has received. To learn more, ask your child’s doctors about the COG survivor guidelines. You can also download them for free at the COG Web site: www.survivorshipguidelines.org. The guidelines are written for health care professionals. Patient versions of some of the guidelines available (as “Health Links”) on the site as well, but we urge you to review them with a doctor.

To learn more about possible late effects of treatment, please see our document, Children Diagnosed With Cancer: Late Effects of Cancer Treatment.

 

Keeping good medical records

After treatment is finished, you and your child may want to put the experience behind you as much as you can. Someday your child will be on his or her own and have new doctors. It is important that you or your child be able to give the new doctors the exact details of the cancer diagnosis and treatment. Gathering the details soon after treatment may be easier than trying to get them at some point in the future. There are certain pieces of information you should keep copies of and see that your child’s doctors have, even into adulthood. These include:

  • A copy of the pathology reports from any biopsies or surgeries.
  • If surgery was done, a copy of the operative report.
  • If your child was in the hospital, a copy of the discharge summaries that doctors prepare when patients are sent home.
  • A list of the final doses of each drug your child had. (Certain chemo drugs have specific long-term side effects. If you can get a list of these from the pediatric oncologist, this would also help any new doctor.)
  • If radiation was given, a final summary of the dose and field.

It is also very important to keep your child’s health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of the cancer coming back, this could happen.

 

To learn more about childhood leukemia

What`s new in childhood leukemia research?

Research into all aspects of childhood leukemia is now being done at many medical centers and hospitals.

Genetics

Scientists are making great progress in understanding how changes in DNA (the substance that holds information on cell growth and function) can cause normal cells to change into leukemia cells. Today, there are much better tests for finding the disease and for telling exactly what kind of leukemia a child has and how well treatment is working. For example, one test (called PCR) can help tell how much of the leukemia has been destroyed by treatment, and whether a relapse will occur if further treatment is not given.

Clinical trials

Clinical trials are taking place to study why some children relapse, which children need more intense treatment, which drugs work the best, and whether natural substances made by the body can help the immune system fight the leukemia cells. These and many other issues are being addressed in clinical trials. Answers to these questions will mean better treatment of childhood leukemia in the future.

 

To learn more about childhood leukemia

From your American Cancer Society

The following information may also be helpful to you. These materials may be ordered from our toll-free number, 1-800-227-2345.

Childhood Leukemia Detailed Guide (also in Spanish)

Pediatric Cancer Centers

Health Professionals Associated With Cancer Care

After Diagnosis: A Guide for Patients and Families (also available in Spanish)

Nutrition for Children With Cancer (also available in Spanish)

Stem Cell Transplant (Peripheral Blood, Bone Marrow, and Cord Blood Transplants)

Children Diagnosed With Cancer: Dealing With Diagnosis (also available in Spanish)

Children Diagnosed With Cancer: Understanding the Health Care System (also available in Spanish)

Children Diagnosed With Cancer: Financial and Insurance Issues

Children Diagnosed With Cancer: Returning to School

Children Diagnosed With Cancer: Late Effects of Cancer Treatment

Clinical Trials: What You Need to Know

Fertility and Cancer: What Are My Options?

Second Cancers Caused by Cancer Treatment

Understanding Chemotherapy: A Guide for Patients and Families (also available in Spanish)

Understanding Radiation Therapy: A Guide for Patients and Families (also available in Spanish)

When Your Child’s Treatment Ends: A Guide for Families

Family and Medical Leave Act (FMLA)

What Happened to You, Happened to Me (children’s booklet)

When Your Brother or Sister Has Cancer (children’s booklet)

 

The following books are available from the American Cancer Society. Call us at 1-800-227-2345 to ask about costs or to place your order.

Because…Someone I Love Has Cancer (kids’ activity book)

American Cancer Society Complete Guide to Family Caregiving

Jacob Has Cancer: His Friends Want to Help (coloring book for a child with a friend who has cancer)

Let My Colors Out (picture book for young children)

What’s Up with Richard? Medikidz Explain Leukemia (graphic novel for teens)

National organizations and Web sites*

In addition to the American Cancer Society, other sources of patient information and support include:

American Childhood Cancer Organization (formerly Candlelighters)
Toll-free number: 1-800-366-CCCF (1-800-366-2223)
Web site: www.acco.org

 

Children’s Leukemia Research Association (CLRA)
(also known as National Leukemia Research Association)
Telephone: 1-516-222-1944
Web site: www.childrensleukemia.org

 

CureSearch (National Childhood Cancer Foundation and Children’s Oncology Group)
Toll-free number: 1-800-458-6223
Web site: www.curesearch.org

 

Leukemia & Lymphoma Society
Toll-free number: 1-800-955-4572
Web site: www.lls.org

 

National Cancer Institute
Toll-free number: 1-800-4-CANCER (1-800-422-6237)
Web site: www.cancer.gov

 

National Children’s Cancer Society, Inc.
Toll-free number: 1-800-5-FAMILY (1-800-532-6459)
Web site: www.children-cancer.org

 

National Dissemination Center for Children with Disabilities (NICHCY)
Toll-free number: 1-800-695-0285 (also for TTY)
Web site: www.nichcy.org

 

Starlight Children’s Foundation
Telephone: 1-310-479-1212
Web site: www.starlight.org

*Inclusion on this list does not imply endorsement by the American Cancer Society.

 

Other publications*

For adults

100 Questions & Answers About Your Child’s Cancer, by William L. Carroll and Jessica Reisman. Published by Jones and Bartlett Publishers, 2004.

Cancer & Self-Help: Bridging the Troubled Waters of Childhood Illness, by Mark A. Chester and Barbara K. Chesney. Published by the University of Wisconsin Press, 1995.

Care for Children and Adolescents with Cancer: Questions and Answers. National Cancer Institute, 2008. Available at: www.cancer.gov/cancertopics/factsheet/NCI/children-adolescents or call 1-800-332-8615.

Childhood Cancer: A Handbook from St Jude Children’s Research Hospital, by Grant Steen and Joseph Mirro (editors). Published by Perseus Publishing, 2000.

Childhood Cancer Survivors: A Practical Guide to Your Future, by Nancy Keene, Wendy Hobbie, and Kathy Ruccione. Published by O’Reilly and Associates, 2000.

Childhood Leukemia: A Guide for Families, Friends & Caregivers (3rd Edition), by Nancy Keene. Published by O’Reilly and Associates, 2002.

Children with Cancer: A Comprehensive Reference Guide for Parents (2nd Edition), by Jeanne Munn Bracken and Pruden Pruden. Published by Oxford University Press, 2005.

Educating the Child With Cancer: A Guide for Parents and Teachers, edited by Nancy Keene. Published by the Candlelighters Childhood Cancer Foundation, 2003.

Living with Childhood Cancer: A Practical Guide to Help Families Cope, by Leigh A. Woznick and Carol D. Goodheart. Published by American Psychological Association, 2002.

Surviving Childhood Cancer: A Guide for Families, by Margo Joan Fromer. Published by New Harbinger Publications, 1998.

When Bad Things Happen to Good People, by Harold Kushner. Published by G.K. Hall, 1982.

When Someone You Love Is Being Treated for Cancer. National Cancer Institute, 2012. Available at: www.cancer.gov/cancertopics/coping/when-someone-you-love-is-treated, or call 1-800-332-8615.

Young People with Cancer: A Handbook for Parents. National Cancer Institute, 2003. Available at: www.cancer.gov/cancertopics/coping/youngpeople, or call 1-800-332-8615.

Your Child in the Hospital: A Practical Guide for Parents (2nd Edition), by Nancy Keene and Rachel Prentice. Published by O’Reilly & Associates. 1999. (Also available in Spanish.)

Books for teens and children

Although these books are intended for children, younger kids are helped more when an adult reads with and helps the child reflect about what different parts of the book mean to the child.

The Amazing Hannah, Look at Everything I Can Do! by Amy Klett. Published by Candlelighters Childhood Cancer Foundation, 2002. For ages 1-6. (Also available in Spanish.)

Chemo, Craziness and Comfort: My Book about Childhood Cancer by Nancy Keene. Published by Candlelighters Childhood Cancer Foundation, 2002. Can be ordered from www.candlelighters.org. For ages 6-12.

Childhood Cancer Survivors: A Practical Guide to Your Future (2nd Edition), by Kathy Ruccione, Nancy Keene, and Wendy Hobbie. Published by Patient Centered Guides, 2006. For older teens.

Going to the Hospital, by Fred Rogers. Published by Paperstar Book, 1997. For ages 4-8.

Life Isn’t Always a Day at the Beach: A Book for All Children Whose Lives Are Affected by Cancer by Pam Ganz. Published by High-Five Publishing, 1996. Workbook for ages 6-10.

Little Tree: A Story for Children with Serious Medical Problems, by Joyce C. Mills. Published by Magination Press, 2003. For ages 4-8.

Living Well With My Serious Illness, by Marge Heegaard. Published by Fairview Press, 2003. For ages 8-12.

Me and My Marrow, by Karen Crowe. Published by Fujsawa Healthcare, 1999. For teens.

My Book for Kids with Cansur [sic], by Jason Gaes. Published by Viking Penguin, 1998.
For ages 4-8.

Oncology, Stupology…I Want to Go Home! by Marilyn K. Hershey. Published by Butterfly Press, 1999. For ages 8-12. (Also available in Spanish.)

What About Me? When Brothers and Sisters Get Sick, by Allan Peterkin and Frances Middendorf. Published by Magination Press, 1992. For brothers and sisters (ages 4-8) of a child with cancer.

When Someone Has a Very Serious Illness: Children Can Learn to Cope With Loss and Change, by Marge Heegaard. Published by Woodland Press, 1991. For ages 6-12.

Why, Charlie Brown, Why? A Story About What Happens When a Friend Is Very Ill, by Charles M. Schultz. Published by Ballantine Publishing Group, 1990. For ages 6-12.

*Inclusion on this list does not imply endorsement by the American Cancer Society.

No matter who you are, we can help. Contact us anytime, day or night, for cancer-related information and support. Call us at 1-800-227-2345 or visit www.cancer.org.