Leukemia - Acute Myeloid - AML - Childhood

ON THIS PAGE: You will find information about the estimated number of children and teens who will be diagnosed with acute myeloid leukemia (AML) each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors, and no 2 people with cancer are the same. Use the menu to see other pages.

Every person is different, with different factors influencing their risk of being diagnosed with this cancer and the chance of recovery after a diagnosis. It is important to talk with your doctor about any questions you have around the general statistics provided below and what they may mean for your child individually. The original sources for these statistics are provided at the bottom of this page.

How many children and teens are diagnosed with AML?

In general, leukemia is the most common childhood cancer. AML is the second most common form of leukemia in children, after acute lymphoblastic leukemia (ALL) . AML makes up 17% of leukemia cases among children and teens. However, most cases of AML occur in adults. AML can be diagnosed at any age, but during childhood, it is a little more common during the first 2 years of life and during the teenage years. In the United States, about 730 people under age 20 are diagnosed with AML each year. AML is diagnosed in similar rates for children of different races and sexes.

What is the survival rate for children and teens with AML?

There are different types of statistics that can help doctors evaluate a person’s chance of recovery from AML. These are called survival statistics. A specific type of survival statistic is called the relative survival rate. It is often used to predict how having cancer may affect life expectancy. Relative survival rate looks at how likely people with AML are to survive for a certain amount of time after their initial diagnosis or start of treatment compared to the expected survival of similar people without this cancer.

Example: Here is an example to help explain what a relative survival rate means. Please note this is only an example and not specific to this type of cancer. Let’s assume that the 5-year relative survival rate for a specific type of cancer is 90%. “Percent” means how many out of 100. Imagine there are 1,000 people without cancer, and based on their age and other characteristics, you expect 900 of the 1,000 to be alive in 5 years. Also imagine there are another 1,000 people similar in age and other characteristics as the first 1,000, but they all have the specific type of cancer that has a 5-year survival rate of 90%. This means it is expected that 810 of the people with the specific cancer (90% of 900) will be alive in 5 years.

It is important to remember that statistics on the survival rates for children and teens with AML are only an estimate. They cannot tell an individual person if cancer will or will not shorten their life. Instead, these statistics describe trends in groups of people previously diagnosed with the same disease, including specific stages of the disease.

The 5-year relative survival rate for children under the age of 15 with AML is 68%. The 5-year relative survival rate for teens ages 15 to 19 is also 68%.

The survival rates for children and teens with AML vary based on several factors. These include their age and general health, and how well the treatment plan works. Another factor that can affect outcomes is the subtype of AML. For instance, research indicates that a subtype called acute promyelocytic leukemia has a 5-year relative survival rate of more than 80%.

Experts measure relative survival rate statistics for AML every 5 years. This means the estimate may not reflect the results of advancements in how AML in children and teens is diagnosed or treated from the last 5 years. Talk with your child’s doctor if you have any questions about this information. Learn more about understanding statistics .

Statistics adapted from the American Cancer Society's (ACS) publication, Cancer Facts & Figures 2023, the ACS website, and the Children’s Oncology Group (COG) CureSearch for Children’s Cancer website. Additional source was : Seigel R, et al.: Cancer Statistics 2023 . CA: A Cancer Journal for Clinicians . 2023 Jan; 73(1):17–48. doi/full/10.3322/caac.21763 . (All sources accessed February 2023.)

The next section in this guide is Medical Illustrations . It offers drawings of body parts often affected by childhood AML. Use the menu to choose a different section to read in this guide.

ON THIS PAGE : You will find out more about the factors that increase the chance of a child developing AML. Use the menu to see other pages.

A risk factor is anything that increases a person’s chance of developing cancer. Although risk factors often influence the development of cancer, most do not directly cause cancer. Some people with several risk factors never develop cancer, while others with no known risk factors do.

Doctors and researchers don’t know what causes most childhood cancers, including AML. The following factors may raise a child's risk of developing AML:

• Genetic factors . Sometimes, AML may be caused by certain genetic factors. For example, children who have Down syndrome have an increased risk of AML during the first 4 years of life. Children with other disorders of the bone marrow are also at risk of developing AML, which slowly increases as they age. However, the reasons for this increased risk are not well understood.

• Age. In general, AML occurs more often in children younger than 2 . The number of people with AML increases again in late childhood (during the teenage years ) and continues to increase throughout later adulthood.

The next section in this guide is Symptoms and Signs . It explains what body changes or medical problems childhood AML can cause. Use the menu to choose a different section to read in this guide.

ON THIS PAGE : You will find a list of common tests, procedures, and scans that doctors use to find the cause of the medical problem. Use the menu to see other pages.

Doctors use many tests to find, or diagnose, leukemia. They also do tests to learn if cancer has spread to another part of the body from where it started. If this happens, it is called metastasis. For example, imaging tests can show if the cancer has spread. Imaging tests show pictures of the inside of the body. Doctors may also do tests to learn which treatments could work best.

For most types of cancer, a biopsy is the only sure way for the doctor to know if an area of the body has cancer. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory (see below).

This section describes options for diagnosing this type of leukemia. Not all tests listed below will be used for every person. Your child’s doctor may consider these factors when choosing a diagnostic test:

• The type of cancer suspected

• Your child's signs and symptoms

• Your child's age and general health

• The results of earlier medical tests

When a child has signs and symptoms of leukemia, the doctor will ask about the child’s medical history and perform a physical examination. In addition, the following tests may be used to diagnose AML:

• Blood tests. Complete blood count (CBC) and cell type (called differential count) are blood tests done to count the number of each type of blood cell under a microscope and to check if they look abnormal.
  
  
• Bone marrow aspiration and biopsy. These 2 procedures are similar and often done at the same time to examine the bone marrow. Bone marrow has both a solid and a liquid part. A bone marrow aspiration removes a sample of the fluid with a needle. A bone marrow biopsy is the removal of a small amount of solid tissue using a needle.
  
  A pathologist then analyzes the samples. A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease. A common site for a bone marrow aspiration and biopsy is the pelvic bone, which is located in the lower back by the hip. Doctors generally give a type of medication called "anesthesia" beforehand to numb the area. Anesthesia is a medication that blocks the awareness of pain. Stronger types of anesthesia can also be used to lessen pain. From this test, the doctor can find out whether the child has leukemia and, if so, what type of leukemia it is.
  
  

• Molecular and genetic testing. Your doctor may recommend running laboratory tests to identify specific genes, proteins, and other factors involved in the leukemia. Examining the genes in the leukemia cells is important because AML can be caused by a buildup of mutations (also called mistakes) in the cell’s genes. Identifying these genetic mutations helps diagnose the specific subtype of AML and choose treatment options. In addition, the results of those tests can also be used to monitor how well treatment is working. Listed below are the more common molecular or genetic tests used for AML.

• Cytochemical and immunohistochemical tests are laboratory tests that are used to find out the exact subtype of AML. In cytochemical tests, a special dye is used that stains the different types of leukemia cells differently based on the chemicals in the cells. For AML, immunohistochemical tests and a test called flow cytometry are used to find markers on the surface of the leukemia cells. The different subtypes of leukemia have different and unique combinations of cell surface markers.

• Cytogenetics is a way to look at a cell’s chromosomes (long strands of genes) through a microscope to analyze the number, size, shape, and the arrangement of the chromosomes to find genetic changes in the leukemia cells. Sometimes, a chromosome breaks off and reattaches to another chromosome, which is called a translocation. Other times, part of a chromosome is missing, called a deletion. A chromosome can also be made more than once, most often called a trisomy. Some subtypes of leukemia are caused by chromosome translocations, deletions, or trisomies. Knowing if there are certain translocations may help doctors determine the AML subtype and plan the best treatment. Flourescence-in-situ-hybridization (FISH) is a test to detect chromosome changes in cancer cells and is being used more often to help diagnose and determine the subtype of leukemia. This test is done on tissue removed during a bone marrow biopsy or aspiration (see above).

• Molecular genetic tests on leukemia cells can also be used to help find out if a person needs more or less chemotherapy and/or stem cell transplantation (also called bone marrow transplant; see the Types of Treatment section). The goal of this type of testing is to look for very small genetic mutations, called sub-microscopic mutations. People who have the FLT3 (pronounced "flit 3") genetic mutation have a high risk that the cancer will come back after treatment. For children with this type of AML, the use of a medical treatment called stem cell/bone marrow transplantation may lengthen their lives when used after the first complete remission (see the Types of Treatment section). There are also new drugs being tested that target FLT3 -positive cells to find out if the drugs can better treat the leukemia. At the same time, research has shown that children with 2 leukemia cell gene mutations called nucleophosmin-1 (NPM1) and CEBPα have a better prognosis (chance of recovery) than those without these mutations. If the leukemia has these mutations, the doctor may recommend chemotherapy without stem cell transplantation.

• Whole genome testing , also called whole exome testing, are highly advanced tools that can look at a person’s entire genetic make-up. These are recently developed tools, and these methods of testing are still emerging. They have been used to look for genetic mutations that can lead to cancer. However, these tests are still generally only available in research studies where they are being used to find out if using these tests improves diagnosis, treatment, and cure.

After diagnostic tests are done, your child’s doctor will review all of the results with you. If the diagnosis is AML, these results also help the doctor describe the cancer and determine the subtype.

The next section in this guide is Subtypes . It helps explain the different subtypes of AML. Use the menu to choose a different section to read in this guide.

ON THIS PAGE : You will learn about the different treatments doctors use for children with AML. Use the menu to see other pages.

The following terms are used to describe the state of disease for children with AML:

• Untreated AML. The child has not received any treatment except to relieve symptoms of the disease. The blood and/or bone marrow contains measurable amounts of leukemia cells, and the child may or may not have symptoms and signs of the disease.

• Complete Remission AML. After treatment, there are too few cancerous blast cells in the bone marrow to tell apart from healthy blasts under the microscope. Traditionally, this means there are fewer than 5% blasts in the bone marrow. New monitoring methods, called minimal residual disease (MRD; cancer cells not destroyed by treatment) methods, are better able to find very low numbers of cancerous blasts, as well as tell the difference between cancerous blasts and healthy blasts. MRD methods are now being used more often to determine remission, and recent research has shown these methods are better able to predict the chance of curing the disease. The child usually does not have any signs or symptoms of the disease when in complete remission.

• Partial Remission AML. The number of cancerous blast cells in the bone marrow is reduced after treatment but still can be seen under the microscope or by MRD methods. The child usually does not have any signs or symptoms of the disease, which only matters during initial therapy called induction (see below, under Chemotherapy).

• Recurrent AML. The disease has come back after the child had a period of remission following treatment (complete absence of symptoms; see above).

• Refractory AML. The leukemia did not go into complete remission after treatment.

Treatment overview

In general, cancer in children is uncommon. This means it can be hard for doctors to plan treatments unless they know what has been most effective in other children. That is why more than 60% of children with cancer are treated as part of a clinical trial. A clinical trial is a research study that tests a new approach to treatment. The “standard of care” is the best treatments known. Clinical trials may test such approaches as a new drug, a new combination of existing treatments, or new doses of current therapies. The health and safety of all children participating in clinical trials are closely monitored.

To take advantage of these newer treatments, children with cancer should be treated at a specialized cancer center if possible. Doctors at these centers have extensive experience in treating children with cancer and have access to the latest research. A doctor who specializes in treating children with cancer is called a pediatric oncologist. If a pediatric cancer center is not nearby, general cancer centers sometimes have pediatric specialists who are able to be part of your child’s care.

In many cases, a team of doctors works with a child and the family to provide care. This is called a multidisciplinary team . Pediatric cancer centers often have extra support services for children and their families, such as child life specialists, dietitians, physical and occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available.

An increasing number of pediatric cancer centers also have services for teenagers and young adults . Sometimes, adult cancer centers also offer services and clinical trials for teens and young adults with cancer.

Descriptions of each treatment option for AML are listed below. Two types of treatment commonly used to treat AML in children are chemotherapy and stem cell/bone marrow transplantation. Radiation therapy is used occasionally in specific situations. Sometimes, more than one treatment is used.

Treatment options and recommendations depend on several factors, including the subtype of AML, possible side effects, the family’s preferences, and the patient’s overall health. Take time to learn about all of the treatment options and be sure to ask questions about things that are unclear. Talk with your child’s doctor about the goals of each treatment and what you and your child can expect while receiving the treatment. These types of talks are called “shared decision making.” Shared decision making is when you and your child's doctors work together to choose treatments that fit the goals of your child’s care. Shared decision making is particularly important for AML because there are different treatment options. Learn more about making treatment decisions .

Chemotherapy

Chemotherapy is the most common treatment for AML. It is the use of drugs to destroy cancer cells, usually by keeping the cells from growing, dividing, and making more cells.

A chemotherapy regimen, or schedule, usually consists of a specific number of cycles given over a set period of time. A patient may receive 1 drug at a time or combinations of different drugs given at the same time.

Several treatment regimens have been developed that involve intensive use of several drugs. Following these regimens, about 85% of children will have an initial remission, and about 50% to 70% will be cured, meaning that the cancer never returns. See above for detailed descriptions about the levels of remission used to describe the state of disease. During treatment, children with AML need to be watched very carefully and often spend many weeks in the hospital because very low blood cell counts increase the risk of developing infections .

The choice of drugs depends on whether the child has previously been treated for AML, as well as other factors. Chemotherapy for AML is usually divided into 2 phases of treatment: induction and intensification.

• Induction chemotherapy uses chemotherapy to destroy as many of the cancer cells as possible to make the AML to go into remission.

• Intensification chemotherapy is used to destroy any cancer cells that may be hiding after induction chemotherapy has led to remission. This means that there are too few to detect by modern tests. Stem cell/bone marrow transplantation also can be used for intensification therapy (see below).

The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, low blood cell counts, risk of infection, hair loss, nausea and vomiting, loss of appetite, or diarrhea.

These side effects usually go away after treatment is finished. The severity of side effects may also be affected by other factors, including genetic differences in the way the drugs are used by the body and the child’s overall health and well-being.

Doctors understand that everyone is different. Most children are initially treated similarly to other children with the same cancer. However, based on the side effects, doses or schedules may be changed. This is a constant balance between the effort to destroy all the cancer cells and the need to avoid severe side effects. Your child’s doctor will discuss changes to the treatment plan with you as they are needed, and not all children will need to have their chemotherapy changed.

There are 2 very unique subtypes of childhood AML that are treated differently from the other subtypes:

• Children with Down syndrome who develop AML under 4 years of age . The AML that develops in this case is more sensitive to chemotherapy, and less intense chemotherapy may be used with very good cure rates of nearly 90% survival at 5 years.

• Acute Promyelocytic Leukemia (APL) with PML-RARA . This leukemia results from 2 genes, PML and RARA , which due to chromosome abnormalities are brought next to each other. There are 2 drugs called all-trans retinoic acid (ATRA) and arsenic trioxide that are unique agents and unlike traditional chemotherapy. This treatment approach, when combined with chemotherapy, has achieved excellent response rates above 90%. Other studies have shown a similar benefit when both drugs are used without chemotherapy.

The medications used to treat cancer are continually being evaluated. Talking with your child’s doctor is often the best way to learn about the medications prescribed for you/your child, their purpose, and their potential side effects or interactions with other medications. It is also important to let your doctor know if your child is taking any other prescription or over-the-counter medications or supplements. Herbs, supplements, and other drugs can interact with cancer medications. Learn more about your child’s prescriptions by using searchable drug databases . Learn more about the basics of chemotherapy .

Bone marrow transplantation/stem cell transplantation

Children with AML have different risks of recurrence depending on the AML's subtype . Recurrence is when the leukemia returns following treatment. For children with a higher risk of recurrence, it is more likely that the doctor will recommend stem cell/bone marrow transplantation to help prevent a recurrence.

A bone marrow transplant is a medical procedure in which bone marrow that contains cancer is replaced by highly specialized cells. These cells, called hematopoietic stem cells, develop into healthy bone marrow. Hematopoietic stem cells are blood-forming cells found both in the bloodstream and in the bone marrow. Today, this procedure is more commonly called a stem cell transplant, rather than bone marrow transplant. This is because it is the stem cells in the blood that are typically being transplanted, not the actual bone marrow tissue.

The goal of stem cell transplantation is to destroy cancer cells in the marrow, blood, and other parts of the body and allow replacement blood stem cells to create healthy bone marrow. The doctors use chemotherapy and/or radiation therapy to destroy the cancer cells before the transplant takes place.

Before recommending stem cell transplantation, doctors will talk with the patient and their family about the risks of this treatment. They will also consider several other factors, such as the type of leukemia, whether there is a low or high risk of recurrence, whether there is any MRD after induction therapy, and patient’s age and general health.

Not all children with AML need stem cell transplantation. Children with subtypes of AML that have lower risks of recurrence and therefore higher chances of cure can usually receive chemotherapy alone. For instance, as explained above, children with Down syndrome and the subtype called APL with PML-RARA do not need stem cell transplantation unless the AML recurs. And, AML with certain genetic changes (for example, chromosome abnormalities known as inv 16 and t[8;21], or molecular changes known as NPM1 or CEBPα) is not treated with stem cell transplantation unless the leukemia has recurred.

Doctors sometimes look at how well induction chemotherapy worked to decide whether stem cell transplantation should be used. Children without high-risk factors for recurrence, such as FLT3 , monosomy 7, monosomy 5 or deletion of the q arm of chromosome 5 (5q deletion), who have no MRD in their bone marrow after induction, also may be treated without use of a stem cell transplant in the first remission.

There are 2 types of stem cell transplantation depending on the source of the replacement blood stem cells:

• Allogeneic (ALLO). ALLO transplantation is the type most often used for AML. An ALLO transplantation uses donated stem cells, from a related or unrelated donor.
  
  
• Autologous (AUTO). AUTO transplantation uses the patient’s own stem cells.

For children with a higher risk for AML recurrence, when a related donor is available, ALLO stem cell transplantation is the preferred treatment after a child has a first remission. For children with the highest risk of recurrence and the lowest chance of recovery, stem cell transplantation with either a related or unrelated donor is often used after the child has a first remission.

In the past, transplantations from unrelated donors were not done unless the AML had recurred. However, as the safety of using stem cells/bone marrow from unrelated donors has improved, these types of transplants are being used more often to prevent recurrence for children with high-risk AML. Clinical trials are studying the use of unrelated donor transplants for patients with AML that has certain high-risk features. Examples include a chromosome abnormality called monosomy 7 or a child who doesn’t experience a remission after their first induction chemotherapy.

Side effects depend on the type of transplant, your child’s general health, and other factors. Learn more about the process and side effects of stem cell and bone marrow transplantation .

Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to destroy cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. The most common type of radiation treatment is called external-beam radiation therapy, which is radiation given from a machine outside the body. When radiation treatment is given using implants, it is called internal radiation therapy or brachytherapy. A radiation therapy regimen, or schedule, usually consists of a specific number of treatments given over a set period of time.

Radiation therapy for AML is generally used only if the cancer has spread to the brain and does not respond to systemic chemotherapy given into a vein and/or chemotherapy given into the spinal fluid. Radiation therapy may also be used to treat a chloroma when chemotherapy has not fully worked. As explained above, radiation therapy may also be used during a stem cell/bone marrow transplant. Total body irradiation (TBI) is a type of radiation therapy that is given to the entire body to prepare the body to receive the transplant.

Side effects from radiation therapy may include fatigue, mild skin reactions, upset stomach, and loose bowel movements. Most side effects go away soon after treatment is finished. Radiation therapy can sometimes interfere with the normal growth and development of the child’s brain and body. Therefore, when possible, chemotherapy is used first to avoid radiation therapy. More information about long-term effects can be found in the Follow-up care section.

Learn more about the basics of radiation therapy .

Physical, emotional, and social effects of cancer

Leukemia and its treatment cause physical symptoms and side effects, as well as emotional, social, and financial effects. Managing all of these effects is called palliative care or supportive care. It is an important part of your child’s care that is included along with treatments intended to slow, stop, or eliminate the cancer.

Palliative care focuses on improving how your child feels during treatment by managing symptoms and supporting patients and their families with other, non-medical needs. Any person, regardless of age or type and stage of cancer, may receive this type of care. And it often works best when it is started right after a cancer diagnosis. People who receive palliative care along with treatment for the cancer often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional and spiritual support, and other therapies. Your child may also receive palliative treatments similar to those meant to get rid of the cancer, such as chemotherapy or radiation therapy.

Before treatment begins, talk with your child’s doctor about the goals of each treatment in the treatment plan. You should also talk about the possible side effects of the specific treatment plan and palliative care options.

During treatment, your child’s health care team may ask you to answer questions about your child’s symptoms and side effects and to describe each problem. Be sure to tell the health care team if your child are experiencing a problem. This helps the health care team treat any symptoms and side effects as quickly as possible. It can also help prevent more serious problems in the future.

Learn more about the importance of tracking side effects in another part of this guide. Learn more about palliative care in a separate section of this website.

Remission and the chance of recurrence

As described above at the beginning of this section, a complete remission is when leukemia cannot be detected in the body or at very low levels, and the patient usually doesn’t experience any symptoms. This may also be called having “no evidence of disease” or NED.

A remission may be temporary or permanent. This uncertainty causes many people to worry that the cancer will come back. While many remissions are permanent, it is important to talk with your child’s doctor about the possibility of the disease returning. Understanding the risk of recurrence and the treatment options may help patients and their families feel more prepared if the leukemia does return. Learn more about coping with the fear of recurrence .

If the cancer returns after the original treatment, it is called recurrent (or relapsed) cancer. Most often, AML comes back in the bone marrow, but sometimes it may come back in the brain or other parts of the body.

When this occurs, a new cycle of testing will begin again to learn as much as possible about the recurrence. After this testing is done, you and your child’s doctor will talk about the treatment options. Treatment usually includes chemotherapy followed by stem cell transplantation. However, each child’s treatment is planned individually based on his or her specific circumstances. Your child’s doctor may suggest clinical trials that are studying new ways to treat this type of recurrent cancer. For some children, recurrent AML can be cured.

Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

When cancer recurs, patients and their families often experience emotions such as disbelief or fear. Families are encouraged to talk with their health care team about these feelings and ask about support services to help them cope.

Learn more about dealing with cancer recurrence .

If treatment does not work

Although treatment is successful for most children with cancer, sometimes it is not. If a child’s cancer cannot be cured or controlled, this is called advanced or terminal cancer.

This diagnosis is stressful, and advanced cancer may be difficult to discuss. However, it is important to have open and honest conversations with your child’s health care team to express your family’s feelings, preferences, and concerns. The health care team has special skills, experience, and knowledge to support patients and their families and is there to help.

Hospice care is designed to provide the best possible quality of life for people who are expected to live less than 6 months. Parents and guardians are encouraged to talk with the health care team about hospice options, which include hospice care at home, a special hospice center, or other health care locations. Nursing care and special equipment can make staying at home a workable option for many families. Some children may be happier if they can attend school part-time or keep up other activities and social connections. The child’s health care team can help parents or guardians decide on an appropriate level of activity.

Making sure a child is physically comfortable and free from pain is extremely important as part of end-of-life care. Learn more about caring for a terminally ill child and advanced cancer care planning .

The death of a child is an enormous tragedy, and families may need support to help them cope with the loss. Pediatric cancer centers often have professional staff and support groups to help with the process of grieving. Learn more on grieving the loss of a child .

The next section in this guide is About Clinical Trials . It offers more information about research studies that are focused on finding better ways to care for people with cancer. Use the menu to choose a different section to read in this guide.

ON THIS PAGE : You will read about the scientific research being done to learn more about this type of cancer and how to treat it. Use the menu to see other pages.

Doctors are working to learn more about AML, ways to prevent it, how to best treat it, and how to provide the best care to children diagnosed with this disease. The following areas of research may include new options for patients through clinical trials . Always talk with your child’s doctor about the best diagnostic and treatment options for your child.

• Genetic testing. The genetics of leukemia cells are being tested to see if they can help doctors decide which patients may need more or less intense treatment. These discoveries help doctors better understand the causes of leukemia, determine the prognosis for each child, and even develop new drugs that target these specific genetic changes.

• Better detection. New methods to measure minimal residual disease (MRD) can find 1 leukemia cell in 10,000 healthy cells, which can help determine the likelihood of recurrence. Increasingly, changes made to chemotherapy treatments and/or the use of stem cell transplantation are partly based on these new types of tests.

• New drugs and combinations of drugs. Targeted therapy is a treatment that targets the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. This type of treatment blocks the growth and spread of cancer cells while limiting damage to normal cells. FLT3 inhibitors are a type of targeted therapy called a protein kinase inhibitor that specifically targets AML blasts with the FLT3 genetic mutation. These are being tested in combination with chemotherapy for children newly diagnosed with AML. Other new drugs that may be used for AML are being tested in clinical trials or are in development in research laboratories. Learn more about the basics of targeted treatments .

• Palliative care/supportive care . Clinical trials are underway to find better ways of reducing symptoms and side effects of current leukemia treatments to improve comfort and quality of life for patients.

Looking for More About the Latest Research?

If you would like additional information about the latest areas of childhood leukemia research, explore these related items that take you outside of this guide:

• To find clinical trials specific to your child’s diagnosis, talk with the doctor or search online clinical trial databases now .
  

• Visit the website of Conquer Cancer, the ASCO Foundation to find out how to help support cancer research. Please note that this link takes you to a separate ASCO website.

The next section in this guide is Coping with Treatment . It offers some guidance in how to cope with the physical, emotional, social, and financial changes that cancer and its treatment can bring. Use the menu to choose a different section to read in this guide.

ON THIS PAGE : You will read about your child’s medical care after cancer treatment is finished and why this follow-up care is important. Use the menu to see other pages.

Care for children diagnosed with cancer does not end when active treatment has finished. Your child’s health care team will continue to check that the cancer has not come back, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children treated for cancer, including AML, should have life-long, follow-up care.

Your child’s follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your child’s recovery in the months and years ahead. Follow-up care should also address your child’s quality of life, including any developmental or emotional concerns. Learn more about the importance of follow-up care .

Watching for recurrence

One goal of follow-up care is to check for a recurrence, which means that the cancer has come back. Cancer recurs because small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms.

During follow-up care, a doctor familiar with your child’s medical history can give you personalized information about the risk of recurrence. Your child's doctor will ask specific questions about your child’s health. Some children may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of cancer originally diagnosed and the types of treatment given.

The anticipation before having a follow-up test or waiting for test results can add stress to you or a family member. This is sometimes called “scan-xiety.” Learn more about how to cope with this type of stress .

Managing long-term and late side effects of childhood cancer

Sometimes, side effects may linger beyond the active treatment period. These are called long-term side effects. Based on the type of treatment your child received, the doctor will plan what examinations and tests are needed to check for long-term side effects, such as problems with the heart, lungs, or growth hormones and the development of a learning disability.

Another possible long-term side effect is a secondary cancer. This is a new type of cancer that develops after treatment for the first cancer. While this risk is generally low, your child should be closely monitored for their entire life for secondary cancers. Your child’s doctor can recommend the necessary screening tests.

In addition, other side effects called late effects may develop months or even years afterwards. Late effects can occur almost anywhere in the body. They include physical problems, such as heart and lung problems or a secondary cancer.  They also include emotional problems, such as anxiety and depression, and problems with memory, thinking, attention, and learning.

Based on the type of treatment your child received, the doctor will recommend what examinations and tests are needed to check for late effects. Follow-up care should address your child’s quality of life, including any developmental or emotional concerns.

The Children's Oncology Group (COG) has studied the physical and psychological effects that childhood cancer survivors face. Based on these studies, COG has created recommendations for long-term follow-up care for childhood, adolescent, and young adult cancer survivors that can be found on a separate website: www.survivorshipguidelines.org .

Keeping a child’s personal health record

You are encouraged to organize and keep a personal record of the child’s medical information. The doctor will help you create this. That way, as the child enters adulthood, he or she has a clear, written history of the diagnosis, the treatments, and the doctor’s recommendations about the schedule for follow-up care. ASCO offers forms to help create a treatment summary to keep track of the cancer treatment your child received and develop a survivorship care plan when treatment is completed.

Some children continue to see their oncologist, while others transition back to the care of their family doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, side effects, health insurance rules, and your family’s personal preferences. Talk with the health care team about your child’s ongoing medical care and any concerns you have about his or her future health.

If a doctor who was not directly involved in your child’s cancer care will lead the follow-up care, be sure to share the cancer treatment summary and survivorship care plan forms with him or her, and with all future health care providers. Details about the specific cancer treatment given are very valuable to the health care professionals who will care for your child throughout his or her lifetime.

The next section in this guide is Survivorship . It describes how to cope with challenges in everyday life after a cancer diagnosis. Use the menu to choose a different section to read in this guide.

ON THIS PAGE : You will find some questions to ask your child's doctor or other members of your child's health care team, to help you better understand your child's diagnosis, treatment plan, and overall care. Use the menu to see other pages.

Talking often with the health care team is important to make informed decisions about your child’s health care. These suggested questions are a starting point to help you learn more about your child’s cancer care and treatment. You are also encouraged to ask additional questions that are important to you and your child. You may want to print this list and bring it to your child's next appointment, or download Cancer.Net’s free mobile app for a digital list and other interactive tools to manage your child's care. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes.

Questions to ask after getting a diagnosis

• What type of leukemia has been diagnosed?

• What subtype of AML has been diagnosed? What does this mean?

• Can you explain my child’s pathology report (laboratory test results) to me?

Questions to about choosing a treatment and managing side effects

• What are the treatment options?

• What clinical trials are available for my child? Where are they located, and how do I find out more about them?

• What treatment plan do you recommend? Why?

• What is the goal of each treatment? Is it to eliminate the cancer, help my child feel better, or both?

• What are the possible side effects of this treatment, both in the short-term and the long-term?

• Who will be part of my child’s health care team, and what does each member do?

• Who will be leading my child’s overall treatment?

• How will this treatment affect my child’s daily life? Will he or she be able to attend school and perform their usual activities?

• Could this treatment affect my child’s ability to become pregnant or have children in the future? If so, should I talk with a fertility specialist before treatment begins?

• If I’m worried about managing the costs of cancer care, who can help me?

• What support services are available to my child? To my family?

• If my family has questions or problems, who should I call?

Questions to ask about your child’s treatment plan

• What chemotherapy will my child receive?

• Should my child receive stem cell/bone marrow transplantation? Why or why not?

• Will my child receive radiation therapy?

• How long will my child need to stay in the hospital?

• What is the goal of each treatment?

• How long will it take to give each treatment?

• What side effects can my child expect during each treatment? How will they be relieved or managed?

• What are the possible long-term effects of having this treatment?

• What can be done to relieve or manage the side effects in the long term?

• Who should we contact about any side effects my child experiences? And how soon?

Questions to ask about planning follow-up care

• What is the chance that the cancer will come back? Should I watch for specific signs or symptoms?

• What long-term side effects or late effects are possible based on the cancer treatment my child received?

• What follow-up tests will my child need, and how often will he or she need them?

• How do I get my child’s treatment summary and survivorship care plan to keep in my personal records?
  

• Who will be leading my child’s follow-up care?

• What survivorship support services are available to my child? To my family?

The next section in this guide is Additional Resources . It offers some more resources on this website that may be helpful to you. Use the menu to choose a different section to read in this guide.