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What You Need

To Know About™

Hodgkin

National Cancer Institute

Lymphoma

U.S. DEPARTMENT OF

HEALTH AND HUMAN SERVICES

National Institutes of Health

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About This Booklet

This National Cancer Institute (NCI) booklet is for you—

someone who has just been diagnosed with Hodgkin

lymphoma. This type of cancer starts in the lymph system.

Another name for this cancer is Hodgkin disease.

Words that may be new to you are shown in bold.

See the Words To Know on page 25 to learn what a new word means and how to pronounce it.

This booklet is about medical care for people with Hodgkin lymphoma. Learning about medical care for this disease can help you take an active part in making choices about your care.

You can read this booklet from front to back. Or, you can read only the sections you need right now.

This booklet has lists of questions that you may want 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. You may also want to have a family member or friend go with you when

you talk with the doctor—to take notes, ask questions, or just listen.

Contents

1

The Lymph System

3

Hodgkin Lymphoma

3

Types of Hodgkin Lymphoma

5

Staging Tests

6

Stages

9

Treatment

21 Nutrition

22 Follow-up Care

23 Sources of Support

25 Words To Know

The Lymph System

The lymph (lymphatic) system helps the body fight infections and other diseases. It’s made up of tissue and organs:

■■ Lymph vessels: The lymph system has a network of

lymph vessels. Lymph vessels branch into all the tissues of the body.

■■ Lymph: Lymph vessels carry clear fluid (lymph).

Lymph contains white blood cells, especially

lymphocytes such as B cells and T cells.

■■ Lymph nodes: Lymph vessels are connected to

small, round organs called lymph nodes. Groups of lymph nodes are found in the neck, armpits, chest,

abdomen, and groin. Lymph nodes store white blood

cells. They trap and remove harmful substances

that may be in lymph.

■■ Other parts of the lymph system: Other parts of the lymph system include the tonsils, thymus, and spleen.

Lymph tissue is also found in other parts of the body

including the stomach, skin, and small intestine.

1

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Tonsils

Lymph node

Lymph

Thymus

vessel

Spleen

This picture shows the lymph system – tonsils, thymus, lymph vessels, lymph nodes, and spleen.

2

Hodgkin Lymphoma

Hodgkin lymphoma starts in the lymph system, usual y

in a lymph node. The disease may be found because of a swollen lymph node in the neck, chest, or other areas.

The disease begins when a lymphocyte (almost always a

B cell) becomes abnormal. The abnormal cell divides to make copies of itself. The copies keep dividing, making more abnormal cel s that build up.

When white blood cel s collect around the abnormal cel s, the lymph node that contains abnormal cel s becomes

swollen. Abnormal cel s may spread through the lymph

vessels or blood vessels to other parts of the body.

Although normal cel s die when they get old or damaged, abnormal cel s don’t die. Also unlike normal cel s, abnormal cel s can’t help the body fight infections.

Types of Hodgkin Lymphoma

In 2013, more than 9,000 Americans will be diagnosed with Hodgkin lymphoma. About 4,000 of these people will be

children, teens, and adults younger than 35 years old.

Classical type

Most people diagnosed with Hodgkin lymphoma have

the classical type. In 2013, about 8,550 Americans will be diagnosed with this type.

3

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In classical Hodgkin lymphoma, the abnormal cell is called a

Reed-Sternberg cell. See photo of the large cell below.

Reed-Sternberg cells are much larger than normal lymphocytes.

Other abnormal cel s may also be found in people with

classical Hodgkin lymphoma. These cel s are called Hodgkin cel s. They are larger than normal lymphocytes but smaller than Reed-Sternberg cel s.

Rare type

In 2013, about 450 Americans will be diagnosed with

lymphocyte-predominant Hodgkin lymphoma. In this rare type of Hodgkin lymphoma, the abnormal cell is

called a lymphocyte-predominant cel , and the treatment options are different.

4

Staging Tests

After you learn that you have Hodgkin lymphoma, you

may need other tests to help with making decisions about treatment. Staging tests can show the stage (extent) of disease, such as whether lymphoma cel s are found in more than one group of lymph nodes.

Lymphoma cells usually spread from one group of lymph

nodes to the next. For example, Hodgkin lymphoma that

starts in lymph nodes in the neck may spread first to lymph nodes above the collarbones, and then to lymph nodes under the arms and within the chest.

In time, lymphoma cells can invade blood vessels and

spread to almost any other part of the body. For example, they can spread to the liver, lungs, bone, and bone marrow.

Staging tests may include:

■■ CT scan: Your doctor may order a CT scan of your neck, chest, abdomen, and pelvis. An x-ray machine linked to a computer will take a series of detailed pictures of these areas. You’ll receive contrast material by mouth and by injection into a blood vessel in your arm or hand.

The contrast material makes swollen lymph nodes and

other abnormal areas easier to see. The pictures can show whether Hodgkin lymphoma has spread.

■■ PET scan: Your doctor may use a PET scan to find Hodgkin lymphoma that has spread. You’ll receive

an injection of a small amount of radioactive sugar.

A machine makes computerized pictures of cel s in

your body that have taken up the radioactive sugar.

5

Because lymphoma cel s take up sugar faster than do

normal cel s, areas with lymphoma cel s look brighter

on the pictures.

■■ Bone marrow biopsy: To check for lymphoma cel s in the bone marrow, your doctor will use 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.

Other staging tests may include biopsies of lymph nodes or other tissue.

Questions you may want to ask your doctor

about testing

■■ What type of Hodgkin lymphoma do I have?

■■ How do I get a copy of the report from the

pathologist?

■■ Has the lymphoma spread? Was it found on both

sides of the diaphragm?

Stages

The stage of Hodgkin lymphoma depends mainly on:

■■ The number and location of lymph nodes that have Hodgkin lymphoma cells

■■ Whether the disease has spread to the spleen, liver, bone marrow, lung, or bone

6

Stages of Hodgkin lymphoma

Doctors describe the stages of Hodgkin lymphoma using

the Roman numerals I, II, III, and IV. Stage I is early-stage

cancer, and Stage IV is advanced cancer, such as Hodgkin lymphoma that has spread to the liver.

Stage I

Lymphoma cel s are in one lymph node group (such as the lymph nodes in the neck or armpit). Very rarely, Hodgkin lymphoma may start somewhere in the body other than a

lymph node and lymphoma cel s are found in only that

one part.

Stage II

Lymphoma cel s are in at least two lymph node groups, but both groups are on the same side of the diaphragm. Or, lymphoma cel s are in one part of a tissue or an organ and the lymph nodes near that organ on the same side of the diaphragm. Lymphoma cel s may be in other lymph node

groups on the same side of the diaphragm.

Stage III

Lymphoma cel s are in lymph nodes on both sides of the diaphragm. Lymphoma cel s may also be found in one part of a tissue or an organ near these lymph node groups or in the spleen.

Stage IV

Lymphoma cel s are found in several parts of at least one organ or tissue. Or, lymphoma cel s are in an organ (such as the liver, lung, or bone) and in lymph nodes on the other side of the diaphragm.

7

A, B, E, and S

In addition to using the Roman numerals I, II, III, and IV, doctors describe the stages of Hodgkin lymphoma with the letters A, B, E, and S.

A and B

Your doctor may describe the stage as A or B:

■■ A (without symptoms): You have not had symptoms, such as weight loss, drenching night sweats, or fevers.

■■ B (with symptoms): You have had symptoms, such as weight loss, drenching night sweats, or fevers.

E and S

Your doctor may describe the stage with an E, S, or both letters:

■■ E (outside the lymph system): Lymphoma is found in tissues outside the lymph system, such as in liver or lung tissue. Other less common places to find lymphoma

include the bone, bone marrow, skin, digestive tract,

kidneys, ovaries, or testicles. For example, the stage may be IIE.

■■ S (in the spleen): Lymphoma is found in the spleen.

For example, the stage may be IIIS.

8

You and your doctor will develop a treatment plan.

Treatment

People with Hodgkin lymphoma have many treatment

options. Treatment options include:

■■ Chemotherapy

■■ Targeted Therapy

■■ Radiation Therapy

■■ Stem Cell Transplant

9

The treatment that’s right for you depends mainly on the type of Hodgkin lymphoma (most people have classical

Hodgkin lymphoma), where the lymphoma was found in

your body (its stage), and whether you’ve had weight loss, drenching night sweats, or fevers. It also may depend on whether you have a tumor that is bigger than 10 centimeters (4 inches). You may receive more than one type of treatment, such as chemotherapy and radiation therapy.

At any time, care is available to prevent infections, control pain, relieve the side effects of treatment, and ease emotional concerns. You can get information about coping on NCI’s website at http://www.cancer.gov/cancertopics/coping.

Also, you can get information about coping from

NCI’s Cancer Information Service at 1–800–4–CANCER

(1–800–422–6237). Or, chat using NCI’s instant messaging service, LiveHelp (https://livehelp.cancer.gov).

Doctors Who Treat Hodgkin Lymphoma

Whenever possible, people should be treated at a medical center that has doctors experienced in treating Hodgkin lymphoma. If this isn’t possible, your doctor may discuss the treatment plan with a specialist at such a center.

Resources are available to help you find doctors who treat Hodgkin lymphoma:

■■ Your doctor may be able to refer you to specialists.

■■ You can ask a hospital, medical school, or medical

society for names of specialists near you.

10

■■ NCI’s Cancer Information Service can give you

information about treatment centers near you. Call

1–800–4–CANCER (1–800–422–6237). Or, chat using LiveHelp (https://livehelp.cancer.gov), NCI’s instant messaging service.

■■ Other sources can be found in the NCI fact sheet How To Find a Doctor or Treatment Facility If You Have Cancer.

Your health care team may include the following specialists:

■■ Medical oncologist: A medical oncologist is a doctor who specializes in treating Hodgkin lymphoma and

other cancers with chemotherapy, targeted therapy, and stem cell transplants.

■■ Radiation oncologist: A radiation oncologist is a doctor who specializes in treating Hodgkin lymphoma

and other cancers with radiation therapy.

Your health care team may also include an oncology nurse, a

social worker, and a registered dietitian.

Ask your health care team about your treatment options, the expected results of each option, and possible side effects. Because cancer treatments often damage healthy cel s and tissues, side effects are common. These side effects depend on many factors, including the type of treatment.

The specific side effects may not be the same for everyone, and they may even change from one treatment session

to the next.

You may want to talk with your doctor about taking part in a research study (clinical trial) of new treatment methods.

Research studies are an important option for people with Hodgkin lymphoma. See the Treatment Clinical Trials

section on page 14.

11

Questions you may want to ask your doctor about

treatment options

■■ What are my treatment options? Which do you

recommend for me? Why?

■■ What are the expected benefits of each kind of

treatment?

■■ What are the risks and possible side effects of each treatment? How can side effects be managed?

■■ What can I do to prepare for treatment?

■■ What is the treatment likely to cost? Will my

insurance cover it?

■■ How will treatment affect my normal activities?

■■ Would a treatment research study be right for me?

Second Opinion

Before starting treatment, you might want a second opinion about your diagnosis and treatment options. Some people worry that the doctor will be offended if they ask for a second opinion. Usual y the opposite is true. Most doctors welcome a second opinion. And many health insurance

companies will pay for a second opinion if you or your doctor requests it. Some insurance companies actual y

require a second opinion.

12

You may want to get a second opinion before starting treatment.

If you get a second opinion, the second doctor may

agree with your first doctor’s diagnosis and treatment recommendation. Or, the second doctor may suggest

another approach. Either way, you have more information and perhaps a greater sense of control. You can feel more confident about the decisions you make, knowing that

you’ve looked at all of your options.

It may take some time and effort to gather your medical records and see another doctor. In most cases, it’s not a problem to take several weeks to get a second opinion. The delay in starting treatment usual y will not make treatment less effective. To make sure, you should discuss this delay with your doctor. Some people with Hodgkin lymphoma

need treatment right away.

13

Treatment Clinical Trials

For anyone thinking about cancer treatment, clinical trials are an option. Clinical trials are research studies that involve people. They are an option for all stages of cancer.

Cancer research has led to real progress in the treatment of Hodgkin lymphoma. Because of research, most people

diagnosed with Hodgkin lymphoma can now be cured,

or their disease can be controlled for many years. Doctors continue to search for new and better ways to treat

Hodgkin lymphoma.

Like all other treatment options, clinical trials have possible benefits and risks. But, by looking closely at all options, including clinical trials, you are taking an active role in a decision that affects your life.

Even if you don’t benefit directly from the treatment under study, you may still make an important contribution by helping doctors learn more about Hodgkin lymphoma

and how to control it. If you’re interested in being part of a clinical trial, talk with your doctor.

NCI’s website has a section called Learn About Clinical Trials

at http://www.cancer.gov/clinicaltrials/learningabout. You can learn about:

■■ What clinical trials are and why they are important

■■ How your safety is protected

■■ Who pays for clinical trials

■■ What to think about if you’re deciding whether to take part in a clinical trial

■■ What to ask your doctor

14

In addition, NCI’s Cancer Information Service can answer your questions and provide information about clinical trials.

Contact CIS at 1–800–4–CANCER (1–800–422–6237) or at LiveHelp (https://livehelp.cancer.gov).

You can search for clinical trials of Hodgkin lymphoma at

http://www.cancer.gov/clinicaltrials/search on NCI’s website.

Chemotherapy

Most people with Hodgkin lymphoma are treated with

chemotherapy. Chemotherapy uses drugs to kill

lymphoma cel s.

Many drugs are used for Hodgkin lymphoma. Usual y, the drugs are given through a thin needle directly into a vein (intravenously). Some are given by mouth.

You’ll probably receive a combination of drugs in a clinic, at the doctor’s office, or at home. Some people need to stay in the hospital during treatment.

The side effects depend mainly on which drugs are given and how much. Chemotherapy kil s fast-growing Hodgkin

lymphoma cel s, but the drugs can also harm normal cel s that divide rapidly:

■■ Blood cells: When drugs lower the levels of healthy blood cel s, you’re more likely to get infections, bruise or bleed easily, and feel very weak and tired. Your health care team will check for low levels of blood cel s. If your levels are low, your health care team may stop the chemotherapy for a while or reduce the dose of the drug.

■■ Cells in hair roots: Chemotherapy may cause hair loss.

If you lose your hair, it will grow back after treatment, but the color and texture may be changed.

15

■■ Cells that line the digestive tract: Chemotherapy can cause a poor appetite, nausea and vomiting, diarrhea,

or mouth blisters. Your health care team can give

you medicines and suggest other ways to help with

these problems.

Ask your health care team whether the chemotherapy used for Hodgkin lymphoma could make you unable to have

children. The fertility of adults may be harmed by the drugs, but most children treated for Hodgkin lymphoma

seem to have normal fertility when they grow up. If you want to have a child someday after treatment, you may

choose to store sperm or eggs before treatment starts.

Some of the drugs used for Hodgkin lymphoma can