Lymphoma - Non-Hodgkin - Childhood

ON THIS PAGE: You will find information about the estimated number of children and teens who will be diagnosed with non-Hodgkin lymphoma (NHL) 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 NHL?

NHL is more common in adults. Every year, approximately 800 children and teens in the United States are diagnosed with the disease. NHL accounts for 5% of childhood cancers in children ages 0 to 14 and 7% of cancers in teens ages 15 to 19. The risk for the disease increases with age. It is uncommon in children under 5.

NHL occurs 2 to 3 times more often in boys than in girls. More White children are diagnosed with the disease than Black children.

What is the survival rate for childhood NHL?

There are different types of statistics that can help doctors evaluate a person’s chance of recovery from NHL. 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 NHL 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 NHL 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 ages 0 to 14 with NHL is 91%. The 5-year relative survival rate for teens ages 15 to 19 is 89%.

The survival rates for childhood NHL vary based on several factors. These include the specific subtype of NHL, the stage of cancer, a person’s age and general health, and how well the treatment plan works.

Children and teens with NHL who are alive and disease-free after 5 years are usually considered “cured” because it is rare for childhood NHL to return after that much time.

Experts measure relative survival rate statistics for children and teens with NHL every 5 years. This means the estimate may not reflect the results of advancements in how NHL 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 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 a drawing of body parts often affected by childhood NHL. 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 developing childhood NHL. 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.

Although the exact cause of NHL is unknown, some children seem to have a slightly higher risk of developing the disease. These children:

• Have had an illness related to the Epstein-Barr virus, which is the virus that causes infectious mononucleosis (also called “mono”).

• Have acquired immune deficiency syndrome (AIDS).

• Have received an organ transplantation.

• Were born with immune system problems.

• Have been treated with certain drugs for other types of cancer.

• Take phenytoin (Dilantin), a drug used to control seizures, but this is rare.

The next section in this guide is Symptoms and Signs. It explains what body changes or medical problems childhood NHL 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, cancer. 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 a 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 on the lymphoma cells 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. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.

How childhood NHL is diagnosed

There are many tests used for diagnosing NHL. Not all tests described here 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

The doctor will first perform a physical examination and take a complete medical history to help determine if a child has NHL. In addition, the following tests may be used:

• Biopsy. A biopsy is the removal of a small amount of tissue for examination under a microscope. Other tests can suggest that cancer is present, but only a biopsy can make a definite diagnosis. A pathologist then analyzes the sample(s). A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease. If the tumor is near the surface, a local anesthetic is usually given to numb the biopsy area before the procedure. If it is deeper inside the body, a general anesthetic is usually given to block the awareness of pain.

• 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 removes a small amount of solid tissue using a needle.

  A pathologist then analyzes the sample(s). 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 anesthesia beforehand to numb the area. Anesthesia is medication that blocks the awareness of pain. Stronger types of anesthesia can also be used to lessen the pain.

• Lumbar puncture (spinal tap). A lumbar puncture is a procedure in which a needle is used to take a sample of cerebral spinal fluid (CSF) to look for cancer cells, blood, or tumor markers. Tumor markers are substances found in higher-than-normal amounts in the blood, urine, or body tissues of people with certain types of cancer. CSF is the fluid that flows around the brain and the spinal cord. Doctors generally give an anesthetic to numb the lower back before the procedure.

• Cytogenetic analysis. A pathologist may examine the tumor sample removed during biopsy to see if the pairs of chromosomes (strings of DNA that contain genes) in the tumor sample have abnormalities. This helps the doctor identify the subtype of NHL and plan treatment.

• Flow cytometry and immunocytochemistry. These tests help the doctor determine the subtype of NHL. In a flow cytometry test, cells from the lymph nodes, bone marrow, or blood are removed and treated with a fluorescent, dye-equipped antibody that attaches to DNA. The cells are then passed in front of a laser beam, which allows a special computer to measure their DNA level. Higher amounts of DNA than normal may indicate cancer. During an immunocytochemistry test, cells are tested with specific antibodies and stains to determine the subtype of NHL.

Imaging tests

To determine where the cancer is and whether it has spread, the doctor may use the following imaging tests:

• X-ray. An x-ray is a way to create a picture of the tissues and organs inside of the body using a small amount of radiation. A chest x-ray is the most common type of x-ray taken for diagnosing NHL.

• Computed tomography (CT or CAT) scan. A CT scan takes pictures of the inside of the body using x-rays taken from different angles. A computer combines these pictures into a detailed, 3-dimensional image that shows any abnormalities or tumors. A CT scan can be used to measure the tumor’s size. Usually, a special dye called a contrast medium is given before the scan to provide better detail on the image. This dye can be injected into a patient’s vein or given as a pill or liquid to swallow.

• Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. MRI can be used to measure the tumor’s size. A special dye called a contrast medium is given before the scan to create a clearer picture. This dye can be injected into a patient’s vein or given as a pill or liquid to swallow.

• Bone scan. A bone scan uses a radioactive tracer to look at the inside of the bones. The amount of radiation in the tracer is too low to be harmful. The tracer is injected into a patient’s vein. It collects in areas of the bone and is detected by a special camera. Healthy bone appears lighter to the camera, and areas of injury, such as those caused by cancer, stand out on the image.

• Positron emission tomography (PET) or PET-CT scan. A PET scan is usually combined with a CT scan (see above), called a PET-CT scan . But you may hear your doctor refer to this procedure just as a PET scan. A PET scan is a way to create pictures of organs and tissues inside the body. A small amount of a radioactive sugar substance is injected into the patient’s body. This sugar substance is taken up by cells that use the most energy. Because cancer tends to use energy actively, it absorbs more of the radioactive substance. However, the amount of radiation in the substance is too low to be harmful. A scanner then detects this substance to produce images of the inside of the body.

  The information from PET scans is often used with the information from a CT scan, MRI, and physical examination to find out if cancer is in tissues. It can help show the difference between benign (noncancerous) findings from a CT scan or MRI and malignant (cancerous) tumors that may not be clearly identified on a CT scan or MRI. The exact accuracy and role of PET scans in NHL is not yet clear, although tumors that contain lymphoma cells often show up on a PET scan. A PET scan may be used to determine where the lymphoma has spread and how well treatment is working.

After diagnostic tests are done, your child’s doctor will review the results with you. If the diagnosis is NHL, these results also help the doctor describe the cancer. This is called staging.

The next section in this guide is Stages . It explains the system doctors use to describe the extent of the disease. Use the menu to choose a different section to read in this guide.

ON THIS PAGE: You will learn about the different types of treatments doctors use to treat children with NHL. Use the menu to see other pages.

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 based on research studies. 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 and teens with cancer ideally should be treated at a specialized pediatric cancer center. 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.

How childhood NHL is treated

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. These services can reduce emotional pain and financial concerns, and they should be used to the fullest extent possible.

The common types of treatments used for NHL are described below. Your child's care plan also includes treatment for symptoms and side effects, an important part of cancer care.

There are 4 main types of treatment used for NHL in children: chemotherapy, immunotherapy, radiation therapy, and stem cell/bone marrow transplantation. Sometimes, the treatments are used in combination. Treatment for childhood NHL often involves hospital stays during treatment cycles and supportive care (1 to 2 weeks).

Treatment options and recommendations depend on several factors, including the type and stage of cancer, possible side effects, and the family’s preferences and overall health. Take time to learn about your child’s 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 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 doctors work together to choose treatments that fit the goals of your child's care. Shared decision-making is particularly important for NHL because there are different treatment options. Learn more about making treatment decisions .

Therapies using medication

Treatments using medication are used to destroy cancer cells. Medication may be given through the bloodstream to reach cancer cells throughout the body. When a drug is given this way, it is called systemic therapy. Medication may also be given locally, which is when the medication is applied directly to the cancer or kept in a single part of the body.

This type of medication is generally prescribed by a medical oncologist, a doctor who specializes in treating cancer with medication.

Medications are often given through an intravenous (IV) tube placed into a vein using a needle or as a pill or capsule that is swallowed (orally). If your child is given oral medications, be sure to ask your child's health care team about how to safely store and handle it.

The types of medications used for lymphoma include:

• Chemotherapy

• Targeted therapy

Each of these types of therapies is discussed below in more detail. A person may receive only 1 type of medication at a time or a combination of medications given at the same time. They can also be given as part of a treatment plan that includes surgery and/or radiation therapy.

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 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, causing unwanted side effects or reduced effectiveness. Learn more about your child’s prescriptions by using searchable drug databases .

Chemotherapy

Chemotherapy is the primary treatment for NHL. Chemotherapy is the use of drugs to destroy cancer cells, usually by keeping the cancer cells from growing, dividing, and making more cells.

In some cases, chemotherapy may be injected into the cerebral spinal fluid (CSF), which is the fluid in and around the brain and spinal cord. Chemotherapy delivered by any of these ways eventually enters the bloodstream to reach cancer cells throughout the body.

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 a combination of different drugs given at the same time.

Chemotherapy used for NHL may include:

• Doxorubicin (available as a generic drug)

• Vincristine (Vincasar)

• Vinblastine (available as a generic drug)

• Prednisone (multiple brand names)

• Mercaptopurine (Purinethol, Purixan)

• Methotrexate (Rheumatrex, Trexall)

• Cytarabine (Cytosar-U)

• Asparaginase (Elspar)

• Ifosfamide (Ifex)

• Cyclophosphamide (Cytoxan)

• Etoposide (Toposar)

Because chemotherapy attacks rapidly dividing cells, including those in normal tissues such as the hair, lining of the mouth, intestines, and bone marrow, children receiving chemotherapy may lose their hair, develop mouth sores, or have nausea and vomiting. In addition, chemotherapy may lower the body’s resistance to infection, lead to increased bruising and bleeding, and cause fatigue. These side effects can be managed during treatment and usually go away after chemotherapy is completed. The severity of the side effects depends on the type and amount of the drug being given and the length of time the child receives the drug.

Learn more about the basics of chemotherapy .

Targeted therapy ( updated 11/2022 )

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 and limits damage to healthy cells.

Not all tumors have the same targets. To find the most effective treatment, your doctor may run tests to identify the genes, proteins, and other factors in your tumor. This helps doctors better match each patient with the most effective treatment whenever possible. In addition, research studies continue to find out more about specific molecular targets and new treatments directed at them. Learn more about the basics of targeted treatments .

Targeted therapy for NHL may include rituximab (Rituxan), an antibody that is often used to specifically target proteins on B-cell lymphomas, or brentuximab vedotin (Adcetris), an antibody-drug conjugate that attaches to targets on cancer cells and releases a small amount of chemotherapy or other toxin directly into the tumor cells. For children with previously untreated, high-risk NHL, brentuximab vedotin combined with chemotherapy may be recommended.

Newly developed drugs that target other specific mutations in cancer cells, such as crizotinib (Xalkori), may be offered as part of a clinical trial for treatment of newly diagnosed NHL or as a treatment for lymphoma that has come back after treatment. Targeted agents can often have fewer side effects, but they may not be an appropriate treatment for your child's type of NHL. Your child’s doctor may decide to use a specific drug based on the subtype or stage.

Talk with your doctor about possible side effects for a specific medication and how they can be managed.

Bone marrow transplantation/stem cell transplantation

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. This procedure is also called a stem cell transplant or hematopoietic stem cell transplant.

Before recommending transplantation, doctors will talk with the patient about the risks of this treatment. They will also consider several other factors, such as the type of NHL, results of any previous treatment, and the patient’s age and general health.

There are 2 types of hematopoietic stem cell transplantation, depending on the source of the replacement blood stem cells: allogeneic (ALLO) and autologous (AUTO). ALLO uses donated stem cells, while AUTO uses the patient’s own stem cells. In both types, the goal is to destroy all of the cancer cells in the marrow, blood, and other parts of the body using high doses of chemotherapy and/or radiation therapy and then allow replacement blood stem cells to create healthy bone marrow.

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

Radiation therapy

Radiation therapy uses 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 therapy is called external-beam radiation therapy, which is radiation given from a machine outside the body. A radiation therapy regimen, or schedule, usually consists of a specific number of treatments given over a set period of time.

Radiation therapy for NHL in children is generally used only in emergency or life-threatening situations. For example, it may be used to treat pressure from a tumor on the windpipe or spinal cord. Also, it may be used if the lymphoma affects the central nervous system (CNS; brain and spine) at the time of diagnosis.

Side effects from radiation therapy include fatigue, mild skin reactions, upset stomach, and loose bowel movements. Most side effects go away soon after treatment is finished. Learn more about the basics of radiation therapy .

Physical, emotional, and social effects of cancer

Cancer 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. 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 that 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, surgery, or radiation therapy.

Before treatment begins, talk with your child's doctor about the goals of each treatment being recommended in the treatment plan. You should also talk about the possible side effects of the specific treatment plan and palliative care options. Many patients also benefit from talking with a social worker and participating in support groups. Ask your doctor about these resources, too.

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 is 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

A remission is when NHL cannot be detected in the body and there are no 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 cancer returning. Understanding your child’s risk of recurrence and the treatment options may help you feel more prepared if the NHL does return. Learn more about coping with the fear of recurrence .

If the cancer returns after the original treatment, it is called recurrent cancer. It may come back in the same place (called a local recurrence), nearby (regional recurrence), or in another place (distant recurrence).

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, your child’s doctor will talk with you about the treatment options. Often the treatment plan will include the therapies described above, such as chemotherapy and bone marrow/stem cell transplantation, but they may be used in a different combination or given at a different pace. Your child’s doctor may suggest clinical trials that are studying new ways to treat this type of recurrent cancer. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

The choice of treatment for recurrent NHL depends on 3 factors:

• Whether the tumor came back in the same place or in another part of the body

• The type of treatment the child had for the original tumor

• The overall health of the child

People with recurrent cancer sometimes experience emotions such as disbelief or fear. You are encouraged to talk with your child's health care team about these feelings and ask about support services to help you cope. Learn more about dealing with cancer recurrence .

If treatment does not work

Although treatment is successful for many children with NHL, 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 or guardians are encouraged to talk with the health care team about hospice care 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 and more comfortable 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 childhood NHL and how to treat it. Use the menu to see other pages.

Doctors are working to learn more about childhood NHL, ways to prevent it, how to best treat it, and how to provide the best care to people 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.

• Genetics. One of the most important areas of research involves learning more about the genetic traits that may increase the risk of developing childhood NHL and about how well treatments will work against specific genetic subtypes of NHL. Learn more about genetics and cancer .

• Immunotherapy. Immunotherapy (also called biologic therapy) is designed to boost the body’s natural defenses to fight the cancer. Researchers are studying the use of monoclonal antibodies designed to destroy lymphoma cells that make a specific protein but do not harm normal cells. Another type of immunotherapy, called adoptive cell immunotherapy, is chimeric antigen receptor (CAR) T-cell therapy . In CAR T-cell therapy, a patient's immune cells, called T cells, are "reprogrammed" to attack their specific cancer.

• Targeted therapy. As explained in the Types of Treatment section, targeted therapy is a treatment that targets the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. For NHL, researchers are studying specific drugs that affect lymphoma cells and limit damage to normal cells.

• Expanded use of bone marrow/stem cell transplantation. Researchers are studying using reduced intensity conditioning therapy followed by allogeneic stem cell transplantation for children with recurrent NHL. In reduced intensity conditioning therapy, lower doses of chemotherapy and radiation therapy are given, with the goal of reducing side effects after the transplant.

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

Looking for More About Latest Research?

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

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

• Visit the Cancer.Net Blog to review recent information and research about lymphoma.

• 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 on how to cope with the physical, emotional, social, and financial changes that NHL 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 NHL 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 NHL, 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.

Cancer rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, family or individual counseling, nutritional planning, and/or educational assistance. The goal of rehabilitation is to help survivors and their families regain control over many aspects of their lives and remain as independent as possible. Learn more about cancer rehabilitation.

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. NHL recurs because small areas of lymphoma 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 NHL first diagnosed and the types of treatment given.

The anticipation before having a follow-up test or waiting for test results may add stress to you or a family member. This is sometimes called “scanxiety.” 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. 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 and second cancers, which is a new cancer that happens in someone who has had cancer before. 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, such as heart problems and/or infertility (inability to have a child). The risk of secondary cancers after treatment of childhood NHL is also possible, although the risks are low, about 1% to 2%. Yearly follow-up care by an experienced health care team is highly encouraged for survivors of childhood NHL. 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 your child’s medical information. The doctor will help you create this. That way, as the child enters adulthood, they have 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 primary care 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 their 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 them 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 their 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 your child’s 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. 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.

Questions to ask after getting a diagnosis

• What type of NHL does my child have?

• What is the stage of the disease? What does this mean?

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

Questions to ask about choosing a treatment and managing side effects

• What are my child's 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?

• Will my child receive chemotherapy, targeted therapy, or immunotherapy?

• Should my child receive a bone marrow/stem cell transplantation?

• Will my child receive radiation therapy?

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

• Will my child need to stay in the hospital? If so, for how long? How often?

• 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 they be able to go to school and perform their usual activities?

• Will this treatment affect my child’s ability to become pregnant or have children in the future? If so, should we 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 I have questions or problems, who should I call?

Questions to ask about having surgery

• What type of surgery will my child have? Will lymph nodes be removed?

• How long will the operation take?

• How long will my child be in the hospital?

• Can you describe what my child's recovery from surgery will be like?

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

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

Questions to ask about having therapies using medication

• What type of treatment is recommended?

• What is the goal of this treatment?

• How long will it take to give this treatment?

• Will my child receive this treatment at a hospital or clinic? Or will they take it at home?

• What side effects can my child expect during treatment?

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

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

• What can be done to relieve the side effects?

Questions to ask about having radiation therapy

• What type of treatment is recommended?

• What is the goal of this treatment?

• How long will it take to give this treatment?

• What side effects can my child expect during treatment?

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

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

• What can be done to relieve the side effects?

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 those tests be needed?

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

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

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

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