What Is Hodgkin Lymphoma?
Nutrition and Physical Activity
Sources of Support
Taking Part in Cancer Research
About This Booklet
This National Cancer Institute (NCI) booklet [NIH Publication No. 07-1555] is about Hodgkin lymphoma,* a cancer that starts in the immune system. This type of cancer is also called Hodgkin disease. In 2013, more than 9,000 people in the United States will be diagnosed with this disease.
Cancer research has led to real progress against Hodgkin lymphoma. Most people diagnosed with Hodgkin lymphoma can now be cured, or their disease can be controlled for many years. Continuing research offers hope that, in the future, even more people with this disease will be treated successfully.
People with non-Hodgkin lymphoma have different treatment options. Instead of this booklet, they may want to read What You Need To Know About™ Non-Hodgkin Lymphoma.
This booklet tells about diagnosis, staging, treatment, and follow-up care. Learning about the medical care for Hodgkin lymphoma can help you take an active part in making choices about your own care.
This booklet has lists of questions to ask your doctor. Many people find it helpful to take a list of questions to a doctor visit. To help remember what your doctor says, you can take notes or ask whether you may use a tape recorder. You may also want to have a family member or friend go with you when you talk with the doctor -- to take part in the discussion, to take notes, or just to listen.
What Is Hodgkin Lymphoma?
The lymphatic system is part of the immune system. The lymphatic system includes the following:
- Lymph vessels: The lymphatic system has a network of lymph vessels. Lymph vessels branch into all the tissues of the body.
- Lymph: The lymph vessels carry clear fluid called lymph. Lymph contains white blood cells, especially lymphocytes such as B cells and T cells.
- Lymph nodes: Lymph vessels are connected to small, round masses of tissue called lymph nodes. Groups of lymph nodes are found in the neck, underarms, chest, abdomen, and groin. Lymph nodes store white blood cells. They trap and remove bacteria or other harmful substances that may be in the lymph.
- Other parts of the lymphatic system: Other parts of the lymphatic system include the tonsils, thymus, and spleen. Lymphatic tissue is also found in other parts of the body including the stomach, skin, and small intestine.
Because lymphatic tissue is in many parts of the body, Hodgkin lymphoma can start almost anywhere. Usually, it's first found in a lymph node above the diaphragm, the thin muscle that separates the chest from the abdomen. But Hodgkin lymphoma also may be found in a group of lymph nodes. Sometimes it starts in other parts of the lymphatic system.
Hodgkin lymphoma begins when a lymphocyte (usually a B cell) becomes abnormal. The abnormal cell is called a Reed-Sternberg cell. (See photo below.)
The Reed-Sternberg cell divides to make copies of itself. The new cells divide again and again, making more and more abnormal cells. The abnormal cells don't die when they should. They don't protect the body from infections or other diseases. The buildup of extra cells often forms a mass of tissue called a growth or tumor.
See the Staging section for information about Hodgkin lymphoma that has spread.
Doctors seldom know why one person develops Hodgkin lymphoma and another does not. But research shows that certain risk factors increase the chance that a person will develop this disease.
The risk factors for Hodgkin lymphoma include the following:
- Certain viruses: Having an infection with the Epstein-Barr virus (EBV) or the human immunodeficiency virus (HIV) may increase the risk of developing Hodgkin lymphoma. However, lymphoma is not contagious. You can't catch lymphoma from another person.
- Weakened immune system: The risk of developing Hodgkin lymphoma may be increased by having a weakened immune system (such as from an inherited condition or certain drugs used after an organ transplant).
- Age: Hodgkin lymphoma is most common among teens and adults aged 15 to 35 years and adults aged 55 years and older. (For information about this disease in children, call the NCI's Cancer Information Service at 1-800-4-CANCER.)
- Family history: Family members, especially brothers and sisters, of a person with Hodgkin lymphoma or other lymphomas may have an increased chance of developing this disease.
Having one or more risk factors does not mean that a person will develop Hodgkin lymphoma. Most people who have risk factors never develop cancer.
Hodgkin lymphoma can cause many symptoms:
- Swollen lymph nodes (that do not hurt) in the neck, underarms, or groin
- Becoming more sensitive to the effects of alcohol or having painful lymph nodes after drinking alcohol
- Weight loss for no known reason
- Fever that does not go away
- Soaking night sweats
- Itchy skin
- Coughing, trouble breathing, or chest pain
- Weakness and tiredness that don't go away
Most often, these symptoms are not due to cancer. Infections or other health problems may also cause these symptoms. Anyone with symptoms that last more than 2 weeks should see a doctor so that problems can be diagnosed and treated.
If you have swollen lymph nodes or another symptom that suggests Hodgkin lymphoma, your doctor will try to find out what's causing the problem. Your doctor may ask about your personal and family medical history.
You may have some of the following exams and tests:
- Physical exam: Your doctor checks for swollen lymph nodes in your neck, underarms, and groin. Your doctor also checks for a swollen spleen or liver.
- Blood tests: The lab does a complete blood count to check the number of white blood cells and other cells and substances.
- Chest x-rays: X-ray pictures may show swollen lymph nodes or other signs of disease in your chest.
- Biopsy: A biopsy is the only sure way to diagnose Hodgkin lymphoma. Your doctor may remove an entire lymph node (excisional biopsy) or only part of a lymph node (incisional biopsy). A thin needle (fine needle aspiration) usually cannot remove a large enough sample for the pathologist to diagnose Hodgkin lymphoma. Removing an entire lymph node is best. The pathologist uses a microscope to check the tissue for Hodgkin lymphoma cells. A person with Hodgkin lymphoma usually has large, abnormal cells known as Reed-Sternberg cells. They are not found in people with non-Hodgkin lymphoma. See the photo of a Reed-Sternberg cell.
- How will the biopsy be done?
- Will I have to stay in the hospital?
- Will I have to do anything to prepare for it?
- How long will it take? Will I be awake? Will it hurt?
- Are there any risks? What are the chances of swelling, infection, or bleeding after the procedure?
- How long will it take me to recover?
- How soon will I know the results? Who will explain them to me?
- If I do have cancer, who will talk to me about next steps? When?
Types of Hodgkin Lymphoma
When Hodgkin lymphoma is found, the pathologist reports the type. There are two major types of Hodgkin lymphoma:
- Classical Hodgkin lymphoma: Most people with Hodgkin lymphoma have the classical type. The Reed-Sternberg cell looks like the photo.
- Nodular lymphocyte-predominant Hodgkin lymphoma: This is a rare type of Hodgkin lymphoma. The abnormal cell is called a popcorn cell. It may be treated differently from the classical type.
Your doctor needs to know the extent (stage) of Hodgkin lymphoma to plan the best treatment. Staging is a careful attempt to find out what parts of the body are affected by the disease.
Hodgkin lymphoma tends to spread from one group of lymph nodes to the next group. For example, Hodgkin lymphoma that starts in the lymph nodes in the neck may spread first to the lymph nodes above the collarbones, and then to the lymph nodes under the arms and within the chest.
In time, the Hodgkin lymphoma cells can invade blood vessels and spread to almost any other part of the body. For example, it can spread to the liver, lungs, bone, and bone marrow.
Staging may involve one or more of the following tests:
- CT scan: An x-ray machine linked to a computer takes a series of detailed pictures of your chest, abdomen, and pelvis. You may receive an injection of contrast material. Also, you may be asked to drink another type of contrast material. The contrast material makes it easier for the doctor to see swollen lymph nodes and other abnormal areas on the x-ray.
- MRI: A powerful magnet linked to a computer is used to make detailed pictures of your bones, brain, or other tissues. Your doctor can view these pictures on a monitor and can print them on film.
- PET scan: You receive an injection of a small amount of radioactive sugar. A machine makes computerized pictures of the sugar being used by cells in your body. Lymphoma cells use sugar faster than normal cells, and areas with lymphoma look brighter on the pictures.
- Bone marrow biopsy: The doctor uses a thick needle to remove a small sample of bone and bone marrow from your hipbone or another large bone. Local anesthesia can help control pain. A pathologist looks for Hodgkin lymphoma cells in the sample.
Other staging procedures may include biopsies of other lymph nodes, the liver, or other tissue.
The doctor considers the following to determine the stage of Hodgkin lymphoma:
- The number of lymph nodes that have Hodgkin lymphoma cells
- Whether these lymph nodes are on one or both sides of the diaphragm (see picture)
- Whether the disease has spread to the bone marrow, spleen, liver, or lung.
The stages of Hodgkin lymphoma are as follows:
- Stage I: The lymphoma cells are in one lymph node group (such as in the neck or underarm). Or, if the lymphoma cells are not in the lymph nodes, they are in only one part of a tissue or an organ (such as the lung).
- Stage II: The lymphoma cells are in at least two lymph node groups on the same side of (either above or below) the diaphragm. Or, the lymphoma cells are in one part of a tissue or an organ and the lymph nodes near that organ (on the same side of the diaphragm). There may be lymphoma cells in other lymph node groups on the same side of the diaphragm.
- Stage III: The lymphoma cells are in lymph nodes above and below the diaphragm. Lymphoma also may be found in one part of a tissue or an organ (such as the liver, lung, or bone) near these lymph node groups. It may also be found in the spleen.
- Stage IV: Lymphoma cells are found in several parts of one or more organs or tissues. Or, the lymphoma is in an organ (such as the liver, lung, or bone) and in distant lymph nodes.
- Recurrent: The disease returns after treatment.
In addition to these stage numbers, your doctor may also describe the stage as A or B:
- A: You have not had weight loss, drenching night sweats, or fevers.
- B: You have had weight loss, drenching night sweats, or fevers.
Your doctor can describe your treatment choices and the expected results. You and your doctor can work together to develop a treatment plan that meets your needs.
Your doctor may refer you to a specialist, or you may ask for a referral. Specialists who treat Hodgkin lymphoma include hematologists, medical oncologists, and radiation oncologists. Your doctor may suggest that you choose an oncologist who specializes in the treatment of Hodgkin lymphoma. Often, such doctors are associated with major academic centers. Your health care team may also include an oncology nurse and a registered dietitian.
The choice of treatment depends mainly on the following:
- The type of your Hodgkin lymphoma (most people have classical Hodgkin lymphoma)
- Its stage (where the lymphoma is found)
- Whether you have a tumor that is more than 4 inches (10 centimeters) wide
- Your age
- Whether you've had weight loss, drenching night sweats, or fevers.
If Hodgkin lymphoma comes back after treatment, doctors call this a relapse or recurrence. People with Hodgkin lymphoma that comes back after treatment may receive high doses of chemotherapy, radiation therapy, or both, followed by stem cell transplantation.
You may want to know about side effects and how treatment may change your normal activities. Because chemotherapy and radiation therapy often damage healthy cells and tissues, side effects are common. Side effects may not be the same for each person, and they may change from one treatment session to the next. Before treatment starts, your health care team will explain possible side effects and suggest ways to help you manage them. The younger a person is, the easier it may be to cope with treatment and its side effects.
At any stage of the disease, you can have supportive care. Supportive care is treatment to prevent or fight infections, to control pain and other symptoms, to relieve the side effects of therapy, and to help you cope with the feelings that a diagnosis of cancer can bring. You can get information about coping on NCI's Web site at http://www.cancer.gov/cancertopics/coping and from NCI's Cancer Information Service at 1-800-4-CANCER or LiveHelp (https://livehelp.cancer.gov).
- What type of Hodgkin lymphoma do I have? May I have a copy of the report from the pathologist?
- What is the stage of my disease? Where are the tumors?
- What are my treatment choices? Which do you recommend for me? Why?
- Will I have more than one kind of treatment?
- What are the expected benefits of each kind of treatment?
- What are the risks and possible side effects of each treatment? What can we do to control the side effects?
- How long will the treatment last?
- What can I do to prepare for treatment?
- Will I need to stay in the hospital? If so, for how long?
- What is the treatment likely to cost? Will my insurance cover the cost?
- How will treatment affect my normal activities?
- Would a clinical trial be right for me?
- How often should I have checkups after treatment?
Chemotherapy for Hodgkin lymphoma uses drugs to kill lymphoma cells. It is called systemic therapy because the drugs travel through the bloodstream. The drugs can reach lymphoma cells in almost all parts of the body.
Usually, more than one drug is given. Most drugs for Hodgkin lymphoma are given through a vein (intravenous), but some are taken by mouth.
Chemotherapy is given in cycles. You have a treatment period followed by a rest period. The length of the rest period and the number of treatment cycles depend on the stage of your disease and on the anticancer drugs used.
You may have your treatment in a clinic, at the doctor's office, or at home. Some people may need to stay in the hospital for treatment.
The side effects depend mainly on which drugs are given and how much. The drugs can harm normal cells that divide rapidly:
- Blood cells: When chemotherapy lowers the levels of healthy blood cells, you are more likely to get infections, bruise or bleed easily, and feel very weak and tired. Your health care team gives you blood tests to check for low levels of blood cells. If levels are low, there are medicines that can help your body make new blood cells.
- Cells in hair roots: Chemotherapy may cause hair loss. If you lose your hair, it will grow back, but it may be somewhat different in color and texture.
- Cells that line the digestive tract: Chemotherapy can cause poor appetite, nausea and vomiting, diarrhea, or mouth and lip sores. Ask your health care team about medicines and other ways to help you cope with these problems.
Some types of chemotherapy can cause infertility:
- Men: Chemotherapy may damage sperm cells. Because these changes to sperm may be permanent, some men have their sperm frozen and stored before treatment (sperm banking).
- Women: Chemotherapy may damage the ovaries. Women who may want to get pregnant in the future should ask their health care team about ways to preserve their eggs before treatment starts.
Some of the drugs used for Hodgkin lymphoma may cause heart disease or cancer later on. See the Follow-up Care section for information about checkups after treatment.
You may find it helpful to read NCI's booklet Chemotherapy and You.
- Which drugs will I have? What are the expected benefits?
- When will treatment start? When will it end? How often will I have treatments?
- Where will I go for treatment? Will I be able to drive home afterward?
- What can I do to take care of myself during treatment?
- How will we know the treatment is working?
- What side effects should I tell you about? Can I prevent or treat any of these side effects?
- Will there be lasting side effects?
Radiation therapy (also called radiotherapy) for Hodgkin lymphoma uses high-energy rays to kill lymphoma cells. It can shrink tumors and help control pain.
A large machine aims the rays at the lymph node areas affected by lymphoma. This is local therapy because it affects cells in the treated area only. Most people go to a hospital or clinic for treatment 5 days a week for several weeks.
The side effects of radiation therapy depend mainly on the dose of radiation and the part of the body that is treated. For example, radiation to your abdomen can cause nausea, vomiting, and diarrhea. When your chest and neck are treated, you may have a dry, sore throat and some trouble swallowing.
In addition, your skin in the area being treated may become red, dry, and tender. You also may lose your hair in the treated area.
Many people become very tired during radiation therapy, especially in the later weeks of treatment. Resting is important, but doctors usually advise people to try to stay as active as they can.
Although the side effects of radiation therapy can be distressing, they can usually be treated or controlled. You can talk with your doctor about ways to ease these problems.
It may also help to know that, in most cases, the side effects are not permanent. However, you may want to discuss with your doctor the possible long-term effects of radiation treatment. After treatment is over, you may have an increased chance of developing a second cancer. Also, radiation therapy aimed at the chest may cause heart disease or lung damage.
Radiation therapy aimed at the pelvis can cause infertility. Loss of fertility may be temporary or permanent, depending on your age:
- Men: If radiation therapy is aimed at the pelvic area, the testes may be harmed. Sperm banking before treatment may be a choice.
- Women: Radiation aimed at the pelvic area can harm the ovaries. Menstrual periods may stop, and women may have hot flashes and vaginal dryness. Menstrual periods are more likely to return for younger women. Women who may want to get pregnant after radiation therapy should ask their health care team about ways to preserve their eggs before treatment starts.
You may find it helpful to read NCI's booklet Radiation Therapy and You.
- Why do I need this treatment?
- When will the treatments begin? When will they end?
- How will I feel during treatment?
- How will we know if the radiation treatment is working?
- Are there any lasting side effects?
Stem Cell Transplantation
If Hodgkin lymphoma returns after treatment, you may receive stem cell transplantation. A transplant of your own blood-forming stem cells (autologous stem cell transplantation) allows you to receive high doses of chemotherapy, radiation therapy, or both. The high doses destroy both Hodgkin lymphoma cells and healthy blood cells in the bone marrow.
Stem cell transplants take place in the hospital. Before you receive high-dose treatment, your stem cells are removed and may be treated to kill lymphoma cells that may be present. Your stem cells are frozen and stored. After you receive high-dose treatment to kill Hodgkin lymphoma cells, your stored stem cells are thawed and given back to you through a flexible tube placed in a large vein in your neck or chest area. New blood cells develop from the transplanted stem cells.
You may find it helpful to read NCI's fact sheet Bone Marrow Transplantation and Peripheral Blood Stem Cell Transplantation.
- What are the possible benefits and risks of a stem cell transplant?
- How long will I need to be in the hospital? Will I need special care? How will I be protected from germs?
- What can we do about side effects?
- How will having a stem cell transplant affect my normal activities?
- What is my chance of a full recovery?
Before starting treatment, you might want a second opinion about your diagnosis and your treatment plan. Many insurance companies cover a second opinion if you or your doctor requests it.
It may take some time and effort to gather your medical records and see another doctor. In most cases, a brief delay in starting treatment will not make treatment less effective. To make sure, you should discuss this delay with your doctor. Sometimes people with Hodgkin lymphoma need treatment right away.
There are many ways to find a doctor for a second opinion. You can ask your doctor, a local or state medical society, a nearby hospital, or a medical school for names of specialists. Other sources can be found in the NCI fact sheet How To Find a Doctor or Treatment Facility If You Have Cancer.
Nonprofit groups with an interest in lymphoma may be of help. Many such groups are listed in NCI's list of organizations that offer support services.
Nutrition and Physical Activity
It's important for you to take care of yourself by eating well and staying as active as you can.
You need the right amount of calories to maintain a good weight. You also need enough protein to keep up your strength. Eating well may help you feel better and have more energy.
Sometimes, especially during or soon after treatment, you may not feel like eating. You may be uncomfortable or tired. You may find that foods do not taste as good as they used to. In addition, the side effects of treatment (such as poor appetite, nausea, vomiting, or mouth sores) can make it hard to eat well. Your doctor, a registered dietitian, or another health care provider can suggest ways to deal with these problems. Also, the NCI booklet Eating Hints has many useful ideas and recipes.
Many people find they feel better when they stay active. Walking, yoga, swimming, and other activities can keep you strong and increase your energy. Exercise may reduce nausea and pain and make treatment easier to handle. It also can help relieve stress. Whatever physical activity you choose, be sure to talk to your doctor before you start. Also, if your activity causes you pain or other problems, be sure to let your doctor or nurse know about it.
You'll need regular checkups after treatment for Hodgkin lymphoma. Even when there are no longer any signs of cancer, the disease sometimes returns because undetected lymphoma cells may remain somewhere in your body after treatment.
Also, checkups help detect health problems that can result from cancer treatment. People treated for Hodgkin lymphoma have an increased chance of developing heart disease; leukemia; melanoma; non-Hodgkin lymphoma; and cancers of the bone, breast, lung, stomach, and thyroid. Checkups help ensure that any changes in your health are noted and treated if needed. Checkups may include a physical exam, blood tests, chest x-rays, CT scans, and other tests.
After treatment, people with Hodgkin lymphoma may receive the flu vaccine and other vaccines. You may want to talk with your health care team about when to get certain vaccines.
If you have any health problems between checkups, you should contact your doctor.
You may wish to get the NCI booklet Facing Forward: Life After Cancer Treatment. It answers questions about follow-up care and other concerns.
- How often will I need checkups?
- Which follow-up tests do you suggest for me?
- Between checkups, what health problems or symptoms should I tell you about?
Sources of Support
Learning you have Hodgkin lymphoma can change your life and the lives of those close to you. These changes can be hard to handle. It's normal for you, your family, and your friends to have many different and sometimes confusing feelings.
Concerns about treatments and managing side effects, hospital stays, and medical bills are common. You may also worry about caring for your family, keeping your job, or continuing daily activities.
Here's where you can go for support:
- Doctors, nurses, and other members of your health care team can answer many of your questions about treatment, working, or other activities.
- Social workers, counselors, or members of the clergy can be helpful if you want to talk about your feelings or concerns. Often, social workers can suggest resources for financial aid, transportation, home care, or emotional support.
- Support groups can also help. In these groups, patients or their family members meet with other patients or their families to share what they have learned about coping with the disease and the effects of treatment. Groups may offer support in person, over the telephone, or on the Internet. You may want to talk with a member of your health care team about finding a support group.
- Information specialists at 1-800-4-CANCER and at LiveHelp (https://livehelp.cancer.gov) can help you locate programs, services, and publications. They can give you names of national organizations that offer services to people with cancer and their families.
For tips on coping, you may want to read the NCI booklet Taking Time: Support for People With Cancer.
Taking Part in Cancer Research
Doctors all over the country are conducting many types of clinical trials (research studies in which people volunteer to take part). Clinical trials are designed to answer important questions and to find out whether new approaches are safe and effective.
Research already has led to advances, and doctors continue to search for more effective methods for treating Hodgkin lymphoma. Doctors are studying methods of new and better ways to treat it, and ways to improve quality of life.
People who join clinical trials may be among the first to benefit if a new approach is effective. And even if people in a trial do not benefit directly, they still make an important contribution by helping doctors learn more about Hodgkin lymphoma and how to control it. Although clinical trials may pose some risks, doctors do all they can to protect their patients.
If you are interested in being part of a clinical trial, talk with your doctor. You may want to read the NCI booklet Taking Part in Cancer Treatment Research Studies. This booklet describes how treatment studies are carried out and explains their possible benefits and risks.
NCI's Web site includes a section on clinical trials at http://www.cancer.gov/clinicaltrials. It has general information about clinical trials as well as detailed information about specific ongoing studies of Hodgkin lymphoma. Information specialists at 1-800-4-CANCER and at LiveHelp (https://livehelp.cancer.gov) can answer questions and provide information about clinical trials.