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Lymphoma - Hodgkin - Childhood - Introduction

Approved by the Cancer.Net Editorial Board, 12/2018

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Childhood Hodgkin Lymphoma. Use the menu to see other pages. Think of that menu as a roadmap to this full guide.

Hodgkin lymphoma, previously called Hodgkin’s disease, is 1 type of lymphoma. Lymphoma is a cancer of the lymphatic system. Lymphoma begins when cells in the lymphatic system change and grow out of control, which may form a tumor.

About the lymphatic system and lymph nodes

The lymphatic system is made up of thin tubes that branch out to all parts of the body. Its job is to fight infection and other diseases. The lymphatic system carries lymph, a colorless fluid containing lymphocytes, which are white blood cells. Lymphocytes fight germs in the body. B-lymphocytes, which are also called B cells, make antibodies to fight bacteria. T-lymphocytes, or T cells, kill viruses and foreign cells and trigger the B cells to make antibodies.

Groups of bean-shaped organs called lymph nodes are located throughout the body at different areas in the lymphatic system. Lymph nodes are found in clusters in the neck, chest, underarms, abdomen, pelvis and groin. Other parts of the lymphatic system include the spleen, which makes lymphocytes and filters blood; the thymus, an organ under the breastbone; and the tonsils, which are located in the throat. See a medical illustration here.

Hodgkin lymphoma most commonly affects lymph nodes in the neck or the area between the lungs and behind the breastbone, which is called the mediastinum. It can also begin in groups of lymph nodes under the arms, in the groin, or in the abdomen or pelvis.

If Hodgkin lymphoma spreads, it typically spreads along the lymphatic channels to other lymph nodes and the spleen, or outside of the lymphatic system, most commonly to the lungs, liver, bone marrow, or bone.

Types of Hodgkin lymphoma

It is important to know the specific type of Hodgkin lymphoma, as this may affect the recommended treatment plan. Doctors find out the type of Hodgkin lymphoma based on how the cells in a tissue sample look under a microscope and whether the cells contain abnormal patterns of certain proteins. There are 2 main types of Hodgkin lymphoma: nodular lymphocyte predominant and classical.

Nodular lymphocyte predominant Hodgkin lymphoma. This is more common among male patients and younger patients. The disease is usually found in the neck, underarm, or groin.

Classical Hodgkin lymphoma. There are 4 subtypes of classical Hodgkin lymphoma: nodular sclerosis, mixed cellularity, lymphocyte rich, and lymphocyte depleted.

  • Nodular sclerosis Hodgkin lymphoma. This is the most common type of Hodgkin lymphoma in adolescents and young adults in the United States and in other developed countries. Tumors are often very bulky. They most often begin in the lymph nodes in the neck, chest, or abdomen and may spread to the lungs.

  • Mixed cellularity Hodgkin lymphoma. This type is more common in children age 10 years or younger. It shows the strongest link to the Epstein-Barr virus, the virus that causes mononucleosis. It usually begins in the lymph nodes in the abdomen or in the spleen.

  • Lymphocyte rich Hodgkin lymphoma. This type is rare and may be hard to distinguish from nodular lymphocyte predominant Hodgkin lymphoma. It usually begins in the lymph nodes of the neck, underarm, and groin, and sometimes involves the spleen and nodes in the chest.

  • Lymphocyte depleted Hodgkin lymphoma. This is a very rare, aggressive type that is uncommon in children. This type is usually more widespread, involving lymph nodes as well as the bones and bone marrow.

Age and Hodgkin lymphoma

There are 3 different forms of Hodgkin lymphoma, based on a person’s age.

  • Childhood form: develops in children 14 years or younger

  • Young adult form: develops in people 15 to 34 years old

  • Older adult form: develops in people 55 to 74 years old

The childhood form of Hodgkin lymphoma is less common in the United States and is especially rare in children younger than 5. In children younger than 5, Hodgkin lymphoma is more common in boys than in girls. Hodgkin lymphoma is most commonly diagnosed in the young adult form and older adult form. Among adolescents, the rates of Hodgkin lymphoma are almost equal among boys and girls.

This section covers Hodgkin lymphoma in children and adolescents. Learn more about adult Hodgkin lymphoma or non-Hodgkin lymphoma in children.

The next section in this guide is Statistics. It helps explain the number of people are diagnosed with childhood Hodgkin lymphoma and general survival rates. Use the menu to choose a different section to read in this guide. 

Lymphoma - Hodgkin - Childhood - Statistics

Approved by the Cancer.Net Editorial Board, 01/2020

ON THIS PAGE: You will find information about the number of children and adolescents who are diagnosed with Hodgkin lymphoma each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors. Use the menu to see other pages.

Hodgkin lymphoma makes up about 3% of cancer in children under 14. The disease is the most common cancer in adolescents between the ages of 15 and 19, accounting for 13% of all cancer cases in this age group. This year, approximately 800 new cases will be diagnosed in this age group. Hodgkin lymphoma is also common in young adults up to age 40 and in adults older than 55. It is very uncommon in children under age 5.

The 5-year survival rate tells you what percent of children live at least 5 years after the cancer is found. Percent means how many out of 100. The 5-year survival rate for children with Hodgkin lymphoma is 98%. The 5-year survival rate for adolescents is 97%.

It is important to remember that statistics on the survival rates for children and adolescents with Hodgkin lymphoma are an estimate. The estimate comes from annual data based on children and adolescents with this cancer in the United States. Also, experts measure the survival statistics every 5 years. So the estimate may not show the results of better diagnosis or treatment available for less than 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 publication, Cancer Facts & Figures 2020 and the ACS website (January 2020).

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

Lymphoma - Hodgkin - Childhood - Medical Illustrations

Approved by the Cancer.Net Editorial Board, 12/2018

ON THIS PAGE: You will find a drawing of the main body parts affected by this disease in children and adolescents. Use the menu to see other pages.

This illustration of the lymphatic system shows the lymphatic vessels, which are thin tubes that branch out to all parts of the body. It also shows other lymphatic organs, including the spleen, located on the left side of the body under the liver, the tonsils, located in the throat, and the thymus, located behind the breastbone. Groups of lymph nodes, tiny bean-shaped organs, are located throughout the body at different areas in the lymphatic system. The largest groups of lymph nodes are shown in the abdomen, groin, pelvis, underarms, and neck. A cross section of a lymph node shows that veins, arteries, and lymphatic vessels allow blood and lymph to flow through a system of lymph nodules in the cortex of the lymph node. Copyright 2004 American Society of Clinical Oncology. Robert Morreale/Visual Explanations, LLC.

The next section in this guide is Risk Factors. It explains the factors that may increase the chance of developing childhood Hodgkin lymphoma. Use the menu on to choose a different section to read in this guide. 

Lymphoma - Hodgkin - Childhood - Risk Factors

Approved by the Cancer.Net Editorial Board, 12/2018

ON THIS PAGE: You will find out more about the factors that increase the chance of a child or adolescent developing Hodgkin lymphoma. 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 children with several risk factors never develop cancer, while others with no known risk factors do.

The cause of Hodgkin lymphoma is unknown, although the Epstein-Barr virus (EBV) may play a role in the development of the cancer in approximately 30% of children and teens. This is the virus that causes mononucleosis or “mono.”

People with immune system problems also have a higher risk of developing Hodgkin lymphoma. This group includes:

  • Children born with the hereditary condition of ataxia telangiectasia, which causes immune system problems

  • Children with human immunodeficiency virus (HIV), the virus that causes acquired immune deficiency syndrome (AIDS)

  • Children who are taking drugs that suppress the immune system following an organ transplant

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

Lymphoma - Hodgkin - Childhood - Symptoms and Signs

Approved by the Cancer.Net Editorial Board, 12/2018

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. Use the menu to see other pages.

Children and adolescents with Hodgkin lymphoma may experience the following symptoms or signs. Sometimes, people with Hodgkin lymphoma do not have any of these changes. Or, the cause of a symptom may be a different medical condition that is not cancer.

  • Painless swelling of lymph nodes in the neck, underarm, or groin that does not go away in a few weeks

  • Coughing or problems breathing, which may mean that the lymph nodes in the chest are swollen and pressing on the windpipe

  • Unexplained fever, without other signs of infection, that does not go away

  • Unexplained weight loss

  • Night sweats, usually drenching

  • Itching

  • Fatigue

If you are concerned about any changes your child experiences, please talk with your child’s doctor. Your child’s doctor will ask how long and how often they have been experiencing the symptom(s), in addition to other questions. This is to help figure out the cause of the problem, called a diagnosis.

If Hodgkin lymphoma is diagnosed, relieving symptoms remains an important part of cancer care and treatment. This may be called palliative care or supportive care. It is often started soon after diagnosis and continued throughout treatment. Be sure to talk with your child’s health care team about the symptoms your child experiences, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis and it explains what tests may be needed to learn more about the cause of the symptoms. Use the menu to choose a different section to read in this guide. 

Lymphoma - Hodgkin - Childhood - Diagnosis

Approved by the Cancer.Net Editorial Board, 12/2018

ON THIS PAGE: You will find a list of the common tests, procedures, and scans that doctors can use to find out what’s wrong and identify the cause of the 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 metastasis. For example, imaging tests can show if the cancer has spread. Imaging tests show pictures 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. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.

This section describes options for diagnosing this type of cancer. 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

In addition to a physical examination, the following tests may be used to diagnose Hodgkin lymphoma:

Physical examination/blood tests. Children tend to have larger lymph nodes than adults. Usually, a child has enlarged lymph nodes for several weeks or months before a doctor suspects Hodgkin lymphoma, which is uncommon in this age group. The doctor first looks for signs of a more common infection that may cause the lymph nodes to swell and may prescribe antibiotics.

If swelling in the lymph nodes does not go down after a course of antibiotics, the swelling may be caused by something other than an infection. In these instances, the doctor does a physical examination of all the lymph node areas, the liver, and the spleen, which may be enlarged in children or adolescents with Hodgkin lymphoma.

  • Blood tests may also be done to check blood counts and evaluate how the liver and kidneys are working. There is no specific blood test for Hodgkin lymphoma, but changes in blood counts, such as unexplained anemia or a low number of red blood cells, are sometimes more common in people with Hodgkin lymphoma.

  • Biopsy. If the lymph nodes do not feel normal when the doctor examines them and do not respond to antibiotics, the doctor will check tissue from the abnormal lymph node for cancer cells. The process of removing the tissue for examination is called a biopsy.

    Hodgkin lymphoma makes a distinctive kind of abnormal cell, called a Reed-Sternberg cell, which is easily identified under the microscope. The only way to diagnose Hodgkin lymphoma is to look at the tissue from an abnormal lymph node under the microscope. 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.

    To perform a standard biopsy for Hodgkin lymphoma, a surgeon cuts through the skin and removes an entire lymph node or a piece of a mass of lymph nodes. In children, a lymph node biopsy is usually performed with general anesthesia or conscious sedation, in which the child is awake but the pain and discomfort are lessened with medication.

    Sometimes, a doctor may first try to obtain tissue from the lymph node by doing a fine needle aspiration biopsy. In this test, a thin needle is used to remove small amounts of fluid and tissue from the lymph node. This type of biopsy may not provide enough tissue to diagnose the disease, so it is recommended only when a standard, surgical biopsy may be too difficult or dangerous to perform. 

If a biopsy confirms the diagnosis of Hodgkin lymphoma, several tests and scans can help the doctor learn more about the disease and, through a process called staging, show how far the disease has spread. The tests and scans can also indicate how well treatment is working. Tests may include:

  • X-ray. An x-ray is a way to create a picture of the structures inside of the body using a small amount of radiation. For instance, a chest x-ray will show whether lymph nodes in the mediastinum are enlarged. A mediastinal tumor that takes up one-third or more of the chest cavity is considered "bulky." It may cause coughing or breathing problems by narrowing the airway.

  • Computed tomography (CT) 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 or 3-D image that shows any abnormalities or tumors. A CT scan can be used to measure the tumor’s size. A special dye called a contrast medium is given before the scan to provide better detail on the image. The dye can be injected into a patient’s vein or given as a pill to swallow. The CT scan shows if lymph nodes in the chest or abdomen are enlarged, which may be a sign of cancer. Also, this test will show if other organs, such as the lungs, liver, or spleen, are involved.

  • 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. This test may be used instead of or in addition to a CT scan at diagnosis or during follow-up care to check for lymphoma in the abdomen, bones, or lymph nodes in the chest.

  • Positron emission tomography (PET) scan or PET-CT 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. A scanner then detects this substance to produce images of the inside of the body. PET scans are often used to add to the information gathered from a CT scan and physical examination. This test can also be used to evaluate how well treatment is working. Before treatment, areas of active Hodgkin lymphoma appear bright on the scan in most people. During and after treatment, these bright areas usually go away as the cancer cells are being destroyed. This test can reassure families and doctors—without doing a biopsy—that scar tissue still present on a CT scan after treatment does not contain active cancer cells.

  • Bone marrow biopsy. Hodgkin lymphoma rarely spreads to the bone marrow in children with disease located only in the lymphatic system. Bone marrow has both a solid and liquid part. A bone marrow biopsy is the removal of a small amount of solid tissue using a needle, usually from pelvic bone located in the lower back by the hip. Doctors generally give a type of medication called "anesthesia" beforehand to numb the area or, more commonly, conscious sedation is given while a needle is inserted. Anesthesia is medication that blocks the awareness of pain.

    A small amount of marrow is removed and examined under a microscope. A pathologist then analyzes the sample(s). This type of biopsy may be recommended for children with signs of more widespread disease involving lymph glands above and below the diaphragm. It is also recommended for children with Hodgkin lymphoma that has spread outside the lymph node system to the lungs, liver, or bones, who are more likely to have lymphoma in the bone marrow.

After diagnostic tests are done, your child’s doctor will review all of the results with you. If the diagnosis is Hodgkin lymphoma, 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.

Lymphoma - Hodgkin - Childhood - Stages and Groups

Approved by the Cancer.Net Editorial Board, 12/2018

ON THIS PAGE: You will learn about how doctors describe a cancer’s growth or spread. This is called the stage. Use the menu to see other pages.

Staging is a way of describing where the cancer is located, if or where it has spread, and whether it is affecting other parts of the body.

Doctors use diagnostic tests to find out the cancer's stage, so staging may not be complete until all of the tests are finished. Knowing the stage helps the doctor to decide what kind of treatment is best and can help predict a patient's prognosis, which is the chance of recovery. There are different stage descriptions for different types of cancer. For childhood Hodgkin lymphoma, doctors use a staging system called the Ann Arbor system.

After the diagnostic tests (described in the Diagnosis section) are completed, the doctor will assign a stage. This is needed to plan treatment. The four stages of Hodgkin lymphoma (I to IV; one to four) are described below.

In addition, each person’s disease is put into 1 of 2 categories, “A” or “B”, based on whether the person has certain symptoms. These symptoms include unexplained fever (at least 100.4 degrees Fahrenheit or 38 degrees Celsius for 3 consecutive days), drenching night sweats, or weight loss of 10% or more in the 6 months before diagnosis. “A” means the patient does not have these symptoms, while “B” means that the patient has at least 1 of these symptoms.

Another category is “E” which means that the Hodgkin lymphoma has spread from the lymph node system to nearby tissues or organs.

Stage I: Cancer is in only 1 area of lymph nodes only.

Stage IE: Cancer is in only 1 area or organ next to the lymph nodes, and there are no lymph nodes with cancer.

Stage II: Cancer is in 2 or more lymph node areas on the same side of the diaphragm.

Stage IIE: Cancer is in 1 lymph node area and in 1 area or organ next to the lymph nodes, with or without lymph nodes with cancer on the same side of the diaphragm.

Stage III: Cancer is in lymph node areas above and below the diaphragm. If the cancer has spread to the lymph nodes above the diaphragm, this stage indicates cancer is also in the spleen.

Stage IV: Cancer has spread outside of the lymph node system to the lungs, liver, bones, bone marrow, or other organs.

Recurrent: Recurrent cancer is cancer that has come back after treatment. If the cancer does return, there will be another round of tests to learn about the extent of the recurrence. These tests and scans are often similar to those done at the time of the original diagnosis.

Risk grouping

A treatment regimen, which is your child’s treatment plan, may be selected based on the disease’s classification as low risk, intermediate risk, or high risk. This classification is based on several factors, including the cancer’s stage, whether the tumor is bulky, and whether the patient is experiencing specific symptoms. Those symptoms are defined as “A” or “B”, as explained above.

  • In low-risk Hodgkin lymphoma, the cancer is usually stage IA or stage IIA disease without bulky tumors.

  • In high-risk Hodgkin lymphoma, the cancer is in a later stage or is causing B symptoms like fever, drenching night sweats, or weight loss. This could include stages IIIB and IVB.

  • Patients not in either of these categories are usually considered to have intermediate-risk Hodgkin lymphoma.

Information about the cancer’s stage will help the doctor recommend a specific treatment plan. The next section in this guide is Types of Treatment. Use the menu to choose a different section to read in this guide.

Lymphoma - Hodgkin - Childhood - Types of Treatment

Approved by the Cancer.Net Editorial Board, 12/2018

ON THIS PAGE: You will learn about the different treatments doctors use for children with Hodgkin Lymphoma. 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 or 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 Hodgkin lymphoma should be treated at a specialized 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.

Treatment overview

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 patients 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 special services and clinical trials for teens and young adults with cancer.

Treatment options and recommendations depend on several factors, including the type and stage of cancer, its risk grouping, possible side effects, the family’s preferences, and the patient's overall health.

Descriptions of the most common types of treatment used for Hodgkin lymphoma for children and adolescents are listed below. Your child’s care plan also includes treatment for symptoms and side effects, an important part of cancer care. Take time to learn about all of 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 your family and the doctors work together to choose treatments that fit the goals of your child’s care. Shared decision making is particularly important for Hodgkin lymphoma because there are different treatment options. Learn more about making treatment decisions.

In general, a treatment plan for Hodgkin lymphoma includes chemotherapy and/or radiation therapy. These treatment are described below. Surgery is not commonly used as a treatment, although it may sometimes be used for the specific type called localized nodular lymphocyte predominant Hodgkin lymphoma, when the doctor believes the involved lymph nodes can be completely removed by surgery.

The amount and type of treatment used to treat Hodgkin lymphoma also depends on how many lymph node areas are involved and how large the lymph nodes have grown. Children with more high-risk or bulky disease may have more cycles of chemotherapy and radiation therapy than children with low-risk disease. Ongoing studies of childhood Hodgkin lymphoma are trying to further reduce the amount of treatment to avoid long-term side effects. Some treatments can affect the patient’s reproductive ability to have a child in the future. It is important to talk with your child’s doctor about ways to preserve fertility before treatment begins.

Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by keeping the cancer cells from growing, dividing, and making more cells. Chemotherapy for childhood Hodgkin lymphoma is given by a pediatric hematologist-oncologist, a doctor who specializes in treating this type of cancer in children using medication.

For Hodgkin lymphoma, chemotherapy circulates into the bloodstream to reach cancer cells throughout the body. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed (orally).

A chemotherapy regimen (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. Learn more about the basics of chemotherapy.

In the past, treatments for Hodgkin lymphoma were one of two combinations of chemotherapy, one called MOPP and another called ABVD. MOPP includes the drugs mechlorethamine (Mustargen), prednisone (multiple brand names), procarbazine (Matulane), and vincristine (Vincasar). ABVD includes the drugs bleomycin (Blenoxane), dacarbazine (DTIC-Dome), doxorubicin (Adriamycin), and vinblastine (Velban). Many of the same drugs included in the original MOPP and ABVD regimens are used in current treatment plans and combinations for children and adolescents with Hodgkin lymphoma but at lower total doses.

Newer treatment combinations for children may replace mechlorethamine with cyclophosphamide (Neosar) and often replace procarbazine with etoposide (Toposar, VePesid) or dacarbazine (DTIC-Dome) to reduce the risk of infertility, which is the inability to have a child in the future. More recently, treatment plans for high-risk Hodgkin lymphoma use more intensive combinations of drugs, called dose-dense, over shorter periods of time. These are therapies with combinations of drugs called ABVE-PC, Stanford V, OEPA-COPDac, and BEACOPP.

Doctors may recommend treatment with chemotherapy alone or a combination of chemotherapy and radiation therapy (see below). Current chemotherapy regimens evaluate the lymphoma’s response to treatment early in the treatment schedule. A child with lymphoma that responds more quickly to treatment may need less treatment than children with lymphoma that responds to treatment more slowly. For earlier-stage lymphoma, many research studies do not include radiation therapy for children whose disease is treated successfully with chemotherapy. For later-stage disease, current clinical trials often include radiation therapy. 

For children with bulky or advanced disease, many doctors feel that combination treatment gives the best chance for cure because there are 2 ways to attack the cancer cells. In combination treatment, doctors reduce the total amount of chemotherapy and radiation therapy, which should reduce long-term side effects. The most important consideration is to use enough treatment to cure the disease with the first treatment plan. This is because the intensity of therapy is high if the disease comes back.

In addition, ongoing clinical trials for children with high-risk Hodgkin lymphoma are testing the combination of chemotherapy and a targeted therapy called brentuximab vedotin. 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 healthy cells. This special drug combines a type of antibody (a manufactured version of an immune system protein) that finds and attaches to the surface of most lymphoma cells with an anti-cancer drug that stops cancer cells from dividing. Researchers hope that this approach will destroy cancer cells and cause less side effects for patients. Learn more about targeted therapy.

Because cancer medications 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 risk of bruising and bleeding, and cause fatigue. These side effects usually can be controlled during treatment and 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 long-term side effects of chemotherapy in the Follow-Up Care section.

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. Learn more about your child’s prescriptions by using searchable drug databases.

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.

A radiation therapy regimen, or schedule, usually consists of a specific number of treatments given over a set period of time.

In the past, treatments for Hodgkin lymphoma used high doses of radiation therapy to all of the lymph node areas. Children treated this way had problems as they got older with muscle and bone growth and had a higher risk of heart disease and second cancers in adulthood. Today, treatment with radiation therapy alone is never used for children, but low-dose radiation therapy may be given to areas where the lymph nodes contain cancer cells. This approach reduces the amount of radiation therapy to the body compared with previous regimens.

The need for radiation therapy is determined by the stage of disease and how well the disease responds to chemotherapy. Clinical trials are currently in progress to identify patients whose disease can be treated successfully using chemotherapy alone. See the Latest Research section for more information. However, radiation therapy is a very effective treatment for Hodgkin lymphoma and plays a major role in curing the disease.

In general, short-term side effects from radiation therapy include tiredness, sore throat, dry mouth, mild skin reactions, upset stomach, and loose bowel movements, depending on the parts of the body affected by radiation treatment. Long-term side effects of radiation therapy may include growth problems of bones and soft tissues; dental, thyroid, heart, and lung problems; and second cancers. In particular, girls treated for Hodgkin lymphoma with radiation to the mediastinum (chest area) are at increased risk of breast cancer. 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. 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, surgery, 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

A remission is when cancer 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 the risk of recurrence and the treatment options may help you feel more prepared if the cancer does return. Learn more about coping with the fear of recurrence.

If the cancer returns after the original treatment, it is called recurrent cancer. The disease can come back in the same area in which it began or in a new area 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. Often the treatment plan will include the treatment described above, such as chemotherapy and radiation therapy, 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.

Treatment for recurrent Hodgkin lymphoma depends on where the disease recurs, the type of treatment the child has had previously, and the length of time since the first treatment was completed. For example, if chemotherapy was given initially, then the child may be given another round of chemotherapy using different drugs.

If the disease has come back very soon after the first treatment or after the use of chemotherapy and radiation therapy, more aggressive therapy may be recommended to increase the chances of keeping the disease in remission. This may include bone marrow/stem cell transplantation, which is described below. A chemotherapy combination like Ifosfamide (Cyfos, Ifex, Ifosfamidum) and vinorelbine (Navelbine) is typically used to shrink sites of recurrent disease before stem cell transplantation/bone marrow transplantation.

Another combination that has been shown to have activity in recurrent Hodgkin lymphoma is gemcitabine (Gemzar) and vinorelbine. These are examples of possible drug combinations but other treatment plans are also effective in treating this disease. Such combination names include ICE, MIED, DHAP, ESHPA, APE, and DECAL.

Other, newer treatments that scientists are looking at including monoclonal antibodies, which are a type of targeted therapy (described above). Each monoclonal antibody is directed against a specific protein on the surface of cancer cells, and it does not affect cells that do not have that protein. Targeted therapies under study include rituximab (Rituxan) and brentuximab vedotin (Adcetris). It is important to talk with your child’s doctor about which treatment plan is best.

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

Stem cell transplantation/bone marrow transplant

Often when high doses of chemotherapy or radiation therapy are used to treat recurrent Hodgkin lymphoma, the bone marrow becomes damaged and cannot produce healthy blood cells. To replace those lost cells, a stem cell/bone marrow transplant may be recommended.

A bone marrow transplant is a medical procedure in which bone marrow that contains cancer is replaced by highly specialized cells, called hematopoietic stem cells, that 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, because it is the stem cells in the blood that are typically being transplanted, not the actual bone marrow tissue.

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

There are two types of stem cell transplantation, depending on the source of the blood stem cells: allogeneic (ALLO) and autologous (AUTO). ALLO uses donated stem cells, while AUTO uses the child’s own stem cells. An AUTO transplant is the type most commonly used for Hodgkin lymphoma. An ALLO transplant is not used as frequently for patients with recurrent Hodgkin lymphoma because of the greater risks of serious side effects.

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.

Learn more about the basics of bone marrow and stem cell transplantation.

If treatment does not work

Although treatment is successful for most children with Hodgkin lymphoma, 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 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.

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ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. Use the menu to see other pages.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for children with Hodgkin lymphoma. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. In fact, every drug that is now approved by the U.S. Food and Drug Administration (FDA) was previously tested in clinical trials.

Clinical trials are used for all types and stages of Hodgkin lymphoma. Many focus on new treatments to learn if a new treatment is safe, effective, and possibly better than the existing treatments. These types of studies evaluate new drugs, different combinations of treatments, new approaches to radiation therapy or surgery, and new methods of treatment.

Children who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there are some risks with a clinical trial, including possible side effects and the chance that the new treatment may not work. Parents are encouraged to talk with their child’s health care team about the pros and cons of joining a specific study.

Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your child’s doctor about clinical trials for symptoms and side effects.

Deciding to join a clinical trial

People decide to participate in clinical trials for many reasons. For some people, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other patients volunteer for clinical trials because they know that these studies are a way to contribute to the progress in treating Hodgkin lymphoma. Even if they do not benefit directly from the clinical trial, their participation may benefit future children with Hodgkin lymphoma.

Insurance coverage and the costs of clinical trials differ by location and by study. In some programs, some of the expenses from participating in the clinical trial are reimbursed. In others, they are not. It is important to talk with the research team and your insurance company first to learn if and how your treatment in a clinical trial will be covered. Learn more about health insurance coverage of clinical trials.

Sometimes people have concerns that, in a clinical trial, their child may receive no treatment by being given a placebo or a “sugar pill.” The use of placebos in cancer clinical trials in this way is rare overall and not done at all in childhood cancer research. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, parents and children must participate in a process known as informed consent. During informed consent, the doctor should:

  • Describe all of the treatment options so that the person understands how the new treatment differs from the standard treatment.

  • List all of the risks of the new treatment, which may or may not be different from the risks of standard treatment.

  • Explain what will be required of each person in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

Clinical trials also have certain rules called “eligibility criteria” that help structure the research and keep patients safe. You and the research team will carefully review these criteria together.

People who participate in a clinical trial may stop participating at any time for personal or medical reasons. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that people participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if they choose to leave the clinical trial before it ends.

Finding a clinical trial

Research through clinical trials is ongoing for all types of cancer. For specific topics being studied for Hodgkin lymphoma, learn more in the Latest Research section.

Cancer.Net offers a lot of information about cancer clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of cancer.

PRE-ACT, Preparatory Education About Clinical Trials

In addition, you can find a free video-based educational program about cancer clinical trials, located in another section of this website.

The next section in this guide is Latest Research. It explains areas of scientific research for Hodgkin lymphoma in children and adolescents. Use the menu to choose a different section to read in this guide.

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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 Hodgkin lymphoma, ways to prevent it, how to best treat it, and how to provide the best care to children and adolescents 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.

  • New drugs. To reduce side effects and improve the effectiveness of treatment, it is important for researchers to find new drugs, as well as new combinations of current drugs.

  • Targeted therapy. Targeted therapy is a treatment that targets specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. As mentioned in Types of Treatment, recent studies are evaluating antibodies—such as brentuximab vedotin (SGN-35)—directed against proteins on the Hodgkin lymphoma cells. Learn more about the basics of targeted treatments.

  • ALLO stem cell transplantation. As explained in the Types of Treatment section, stem cell/bone marrow transplantation is sometimes used to treat Hodgkin lymphoma. Doctors are researching increasing the use of transplantation, including ALLO transplantation using donor blood stem cells to replace the patient’s bone marrow (called allogeneic transplantation).

  • Personalized treatments. The major goal of Hodgkin lymphoma research is to improve treatment effectiveness while reducing long-term side effects. Early response of the disease to a specific treatment is being studied as a method to tailor therapy to the individual. Shorter, more intensive regimens may improve effectiveness. It is important that researchers learn which patients need radiation therapy and which patients may be cured without the long-term side effects of radiation exposure.

  • Palliative care/supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current Hodgkin lymphoma treatments in order 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 Hodgkin lymphoma, explore these related items that take you outside of this guide:

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.

Lymphoma - Hodgkin - Childhood - Coping with Treatment

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ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of Hodgkin lymphoma and its treatment. This page includes several links outside of this guide to other sections of this website. Use the menu to see other pages.

Every cancer treatment can cause side effects or changes to your child’s body and how he or she feels. For many reasons, people do not experience the same side effects even when given the same treatment for the same type of cancer. This can make it hard to predict how your child will feel during treatment.

As your family prepares to start cancer treatment, it is normal to fear treatment-related side effects. It may help to know that your child's health care team will work to prevent and relieve side effects. Doctors call this part of cancer treatment “palliative care” or "supportive care." It is an important part of your child’s treatment plan, regardless of his or her age or the stage of disease.

There are possible side effects for every cancer treatment, but people don’t experience the same side effects when given the same treatments for many reasons. That can make it hard to predict exactly how you will feel during treatment. Common side effects from each treatment option for Hodgkin lymphoma are described in detail within the Types of Treatment section. Learn more about the most common side effects of cancer and different treatments, along with ways to prevent or control them. Side effects depend on a variety of factors, including the cancer’s stage, the length and dosage of treatment(s), and your child’s overall health.

Coping with physical side effects

Common physical side effects from each treatment option for Hodgkin lymphoma are described within the Types of Treatment section. Learn more about side effects of cancer and its treatment, along with ways to prevent or control them. Changes to your child’s physical health depend on several factors, including the cancer’s stage, the length and dose of treatment, and your child’s general health.

It is important to discuss any new side effects or changes in existing side effects with your child’s health care team. Providing this information helps them find ways to treat or manage the side effects so your child feels more comfortable and can potentially keep any side effects from worsening.

You may find it helpful to keep track of your child’s side effects so you are prepared to discuss any changes with the health care team. Learn more about why tracking side effects is helpful.

Sometimes, physical side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment late effects. Treating long-term side effects and late effects is an important part of care for childhood cancer survivors. Learn more by reading the Follow-up Care section of this guide or talking with your child’s doctor.

Coping with emotional and social effects

Your family can have emotional and social effects as well as physical effects after a cancer diagnosis. This may include dealing with difficult emotions, such as anxiety or anger, or managing stress. Sometimes, people find it difficult to express how they feel to their loved ones. Some have found that talking to an oncology social worker, counselor, or member of the clergy can help them develop more effective ways of coping and talking about cancer.

You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your family’s needs.

Coping with financial effects

Cancer treatment can be expensive. It is often a big source of stress and anxiety for families dealing with a cancer diagnosis. In addition to treatment costs, many people find they have extra, unplanned expenses related to their child’s care. Families are encouraged to talk about financial concerns with a member of their health care team. Learn more about managing financial considerations in a separate part of this website.

Caring for a child with cancer

Family members and friends often play an important role in taking care of a person with Hodgkin lymphoma. This is called being a caregiver. As a parent or guardian, you are the primary caregiver for your child. However, friends and family members can give your family valuable support, even if they live far away.

When your child has Hodgkin lymphoma, you may have an additional range of responsibilities. These may include giving medications or managing symptoms and side effects. However, it is important to seek help from others. Below are some of the responsibilities your family or friends could help with:

  • Providing short-term care for your child

  • Giving support and encouragement

  • Assisting with meals or household chores

  • Helping with insurance and billing issues

Learn more about caregiving.

Talking with your child's health care team about side effects

Before starting treatment, talk with your child’s doctor about possible side effects. Ask:

  • Which side effects are most likely?

  • When are they likely to happen?

  • What can we do to prevent or relieve them?

Be sure to tell your child's health care team about any side effects that happen during treatment and afterward, too. Tell them even if you do not think the side effects are serious. This discussion should include physical, emotional, and social effects of cancer.

Also, ask how much care your child may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan

Create a caregiving plan with this 1-page fact sheet that includes an action plan to help make caregiving a team effort. This free fact sheet is available as a PDF, so it is easy to print out.

Looking for More on How to Track Side Effects?

Cancer.Net offers several resources to help you keep track of symptoms and side effects. Please note that these links will take you to other sections of Cancer.Net:

  • Cancer.Net Mobile: The free Cancer.Net mobile app allows you to securely record the time and severity of symptoms and side effects.

  • ASCO Answers Managing Pain: Get this 36-page booklet about the importance of pain relief that includes a pain tracking sheet to record how pain affects your child. The free booklet is available as a PDF, so it is easy to print out.

  • ASCO Answers Fact Sheets: Read 1-page fact sheets on diarrhea and rash that provide a tracking sheet to record the timing and severity of the side effect. These free fact sheets are available as a PDF, so it is easy to print out.

The next section in this guide is Follow-up Care. It explains the importance of checkups after your child finishes cancer treatment. Use the menu to choose a different section to read in this guide. 

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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. To see other pages, use the menu.

Care for children and adolescents diagnosed with Hodgkin lymphoma 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 Hodgkin lymphoma, 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.

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, stage, and risk group of lymphoma 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. 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, fertility 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 difficulties. The risk of specific late effects is directly related to the specific chemotherapy drugs, and areas treated by radiation therapy and surgery.

Based on the type of treatment your child received, the doctor will recommend what examinations and tests are needed to check for late effects. The long-term side effects of chemotherapy also depend on the type and total dose of each drug. These include:

  • Heart problems after doxorubicin or radiation therapy

  • Lung problems after bleomycin or radiation therapy

  • Thyroid problems after radiation therapy

  • Secondary cancers after radiation therapy or chemotherapy

  • Reproductive/infertility effects after cyclophosphamide, mechlorethamine, procarbazine, or pelvic radiation

In addition, children who had a splenectomy—the surgical removal of the spleen—have an ongoing chance of serious infection. Rarely, children with Hodgkin lymphoma develop a second cancer, called acute myeloid leukemia, because of chemotherapy’s effects on bone marrow function. Fortunately, the risk of long-term side effects is much lower with newer treatment plans that limit the doses of drugs and radiation therapy that cause serious health problems.

For most Hodgkin lymphoma survivors, the medical side effects of treatment do not significantly affect life span. However, Hodgkin lymphoma survivors report significant concerns regarding their health compared with other survivors of childhood cancer. This may result from the social and emotional effects of treatment during adolescence, when the adolescent may feel different from healthy peers. In addition, some Hodgkin lymphoma survivors experience long-term fatigue that may require lifestyle changes, such as taking a reduced course load at college or choosing employment that is consistent with the individual’s energy level.
Learn more about late effects for childhood and young adult cancer survivors.

Follow-up care should address your child’s quality of life, including any developmental or emotional concerns.

Ongoing follow-up care by health care professionals experienced in long-term side effects is important. Preventive health care, including breast cancer screening after mediastinal radiation therapy; not smoking after bleomycin or radiation therapy due to enhanced lung cancer risk; and reducing the risk for heart disease through exercise, diet, and medication are important steps for Hodgkin lymphoma survivors. Such preventative measures may foster better, long-term health outcomes and offer the person some control of his or her own health.

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 should 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. These documents are often referred to as cancer treatment summaries and/or survivorship care plans. ASCO offers forms to help 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.

Lymphoma - Hodgkin - Childhood - Survivorship

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ON THIS PAGE: You will read about how to cope with challenges in everyday life after your child’s cancer diagnosis. Use the menu to see other pages.

What is survivorship?

The word “survivorship” means different things to different people, but it often describes living with, through, and beyond cancer. In some ways, survivorship is one of the most complex aspects of the cancer experience because it is different for every person and his or her family.

After active cancer treatment ends, children and their families may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a cancer diagnosis. Other families stay very anxious about their child’s health and become uncertain about coping with everyday life.

One source of stress may occur when frequent visits to the health care team end after completing treatment. Often, relationships built with the cancer care team provide a sense of security during treatment, and children and their families miss this source of support. This may be especially true when new worries and challenges surface over time, such as any late effects of treatment, educational issues, emotional challenges, sexual development and fertility concerns, and/or financial issues.

Every family faces different concerns and challenges. With any challenge, a good first step is being able to recognize each fear and talk about it. Effective coping requires:

  • Understanding the challenge your family is facing

  • Thinking through solutions

  • Asking for and allowing the support of others

  • Feeling comfortable with the course of action your family chooses

It may be helpful to join an in-person support group or online community of childhood or adolescent cancer survivors. Support groups also exist for parents of children diagnosed with cancer. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of the health care team, individual counseling, or asking for assistance at the learning resource center of the place where your child received treatment.

Changing role of caregivers

Parents, other family members, and friends may also go through periods of transition. A caregiver plays a very important role in supporting a child diagnosed with cancer, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to a child’s cancer diagnosis will become much less or come to an end as your child gets older. Family counselors at pediatric cancer centers can help with this transition. You can also learn more about adjusting to life after caregiving.

Healthy living after cancer

Survivorship often serves as a strong motivator to make lifestyle changes, often for the family as a whole.

Children who have had cancer can enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, maintaining a healthy weight, eating well, managing stress, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child’s needs. Learn more about making healthy lifestyle choices.

It is important that your child has recommended medical checkups and tests (see Follow-up Care) to take care of his or her health. 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 and productive as possible.

Talk with the doctor to develop a survivorship care plan that is best for your child’s needs.

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.

Looking for More Survivorship Resources?

For more information about cancer survivorship, explore these related items. Please note these links will take you to other sections of Cancer.Net:

  • Survivorship Resources: Cancer.Net offers a lot of information and resources to help survivors cope, including specific sections for childrenteens, and young adults. There is also a main section on survivorship for people of all ages.

  • ASCO Answers Cancer Survivorship GuideThis 44-page booklet can help with the transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The free booklet is available as a PDF, so it is easy to print out.

  • Cancer.Net Patient Education VideoView a short video led by an ASCO expert that provides information about childhood cancer survivorship.

The next section offers Questions to Ask the Health Care Team to help start conversations with your child's cancer care team. Use the menu to choose a different section to read in this guide.

Lymphoma - Hodgkin - Childhood - Questions to Ask the Health Care Team

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ON THIS PAGE: You will find some questions to ask your 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 health care team to make informed decisions about your child’s health care. These suggested questions are a starting point to help you learn more about your 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. 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 lymphoma has been diagnosed?

  • What subtype of Hodgkin lymphoma does my child have?

  • What is the stage of the disease? What is the risk grouping?

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

  • What are my child’s treatment options?

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

Questions to ask about choosing a treatment and managing side effects

  • 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?

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

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

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

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

  • If I am worried about managing the costs related to my child’s cancer care, who can help me with these concerns?

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

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

  • If I’m worried about managing the costs related to my child’s cancer care, who can help me with these concerns?

  • 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 chemotherapy, targeted therapy, or radiation therapy

  • What type of treatment, or combination of treatments, is recommended?

  • How long will it take to give this treatment?

  • What side effects can we expect during my child's 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 risk of the cancer returning? Are there signs and symptoms I should watch for?

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

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

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

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

  • What survivorship support services are available to me/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.

Lymphoma - Hodgkin - Childhood - Additional Resources

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ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about cancer care and treatment. This is the final page of Cancer.Net’s Guide to Childhood Hodgkin Lymphoma. Use the menu to go back and see other page.

Cancer.Net includes many other sections about the medical and emotional aspects of cancer, for the person diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Here are a few links to help you explore other parts of Cancer.Net:

This is the end of Cancer.Net’s Guide to Childhood Hodgkin Lymphoma. Use the menu to choose a different section in this guide.