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«What you need to know about Non-Hodgkin Lymphoma This brochure is a part of a Patient Information Series supported by Baxter. This information is not ...»

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Patient Information

What you need to know about

Non-Hodgkin Lymphoma

This brochure is a part of a Patient Information

Series supported by Baxter.

This information is not meant to be a substitute for the advice

provided by your own physician or other medical professional.

You should not use this information for diagnosing a health

problem or disease but should always consult your own



We would like to thank the U.S. Department of Health and Human Services, Public Health Service, National Cancer Institute, for their friendly permission to reprint and distribute this publication.

3rd Update Contents Page

1. Introduction 5

2. What is Non-Hodgkin Lymphoma 6

3. Risk Factors 9

4. Symptoms 11

5. Diagnosis 12

6. Staging 14

7. Treatment 17

8. Second Opinion 26

9. Supportive Care 27

10. Nutrition and Physical Activity 28

11. Follow-Up Care 29

12. Sources of Support 30

13. Taking Part in Cancer Research 31

14. Glossary 32

1. Introduction

1. Introduction This booklet is about non-Hodgkin lymphoma, a cancer that starts in the immune system. Non-Hodgkin lymphoma is also called NHL. Each year, more than 63,000 US-Americans learn they have non-Hodgkin lymphoma.

This booklet is only about non-Hodgkin lymphoma. It is not about Hodgkin lymphoma (also called Hodgkin disease).

People with Hodgkin lymphoma have different treatment options.

This booklet tells about diagnosis, treatment, and supportive care. Learning about the medical care for people with 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.


2. What is Non-Hodgkin Lymphoma

2. What is Non-Hodgkin Lymphoma Non-Hodgkin lymphoma is cancer that begins in cells of the Type of cancer immune system. The immune system fights infections and that develops in the lymphatic other diseases.

system The lymphatic system is part of the immune system. The

lymphatic system includes the following:

• Lymph vessels: The lym

–  –  –

In general, the risk factors for non-Hodgkin lymphoma include

the following:

• Weakened immune system: The risk of developing lymphoma may be increased by having a weakened immune system (such as from an inherited condition or certain drugs used after an organ transplant).

• Certain infections: Having certain types of infections increases the risk of developing lymphoma. However, lymphoma is not contagious. You cannot catch lymphoma from another person. The following are the main types of

infection that can increase the risk of lymphoma:

Human immunodeficiency virus (HIV): HIV is the virus that causes AIDS. People who have HIV infection are at much greater risk of some types of non-Hodgkin lymphoma.

Epstein-Barr virus (EBV): Infection with EBV has been linked to an increased risk of lymphoma. In Africa, EBV infection is linked to Burkitt lymphoma.

Helicobacter pylori: H. pylori are bacteria that can cause stomach ulcers. They also increase a person's risk of lymphoma in the stomach lining.

Human T-cell leukemia/lymphoma virus type 1 (HTLV-1): Infection with HTLV-1 increases a person's risk of lymphoma and leukemia.

Hepatitis C virus: Some studies have found an increased risk of lymphoma in people with hepatitis C virus. More research is needed to understand the role of hepatitis C virus.

–  –  –

Most often, these symptoms are not due to cancer. Infections or other health problems may also cause these symptoms.

Anyone with symptoms that do not go away within 2 weeks should see a doctor so that problems can be diagnosed and treated.

–  –  –

You may want to ask your doctor these questions before

having a biopsy:

• How will the biopsy be done?

• Where will I have my biopsy?

• 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 biopsy?

• 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?


Types of non-Hodgkin lymphoma When lymphoma is found, the pathologist reports the type.

There are many types of lymphoma. The most common types are diffuse large B-cell lymphoma and follicular lymphoma.

Lymphomas may be grouped by how quickly they are likely to


• Indolent (also called low-grade) lymphomas grow slowly.

They tend to cause few symptoms.

• Aggressive (also called intermediate-grade and highgrade) lymphomas grow and spread more quickly. They tend to cause severe symptoms. Over time, many indolent lymphomas become aggressive lymphomas.

It's a good idea to get a second opinion about the type of lymphoma that you have. The treatment plan varies by the type of lymphoma. A pathologist at a major referral center can review your biopsy. See the Second Opinion section for more information.

–  –  –

• Spinal tap: The doctor uses a long, thin needle to remove fluid from the spinal column. Local anesthesia can help control pain. You must lie flat for a few hours afterward so that you don't get a headache. The lab checks the fluid for lymphoma cells or other problems.

• 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.

The stage is based on where lymphoma cells are found (in the lymph nodes or in other organs or tissues). The stage also

depends on how many areas are affected. The stages of nonHodgkin 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 abnormal cells are not in the lymph nodes, they are in only one part of a tissue or organ (such as the lung, but not the liver or bone marrow).

• Stage II: The lymphoma cells are in at least two lymph node groups on the same side of (either above or below) the diaphragm. (See the picture of the diaphragm.) Or, the lymphoma cells are in one part of 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 is in lymph nodes above and below the diaphragm. It also may be found in one part of a tissue or an organ near these lymph node groups.

• Stage IV: Lymphoma cells are found in several parts of one or more organs or tissues (in addition to the lymph nodes).

Or, it is in the liver, blood, or bone marrow.

–  –  –

Your doctor may refer you to a specialist, or you may ask for a referral. Specialists who treat non-Hodgkin lymphoma include hematologists, medical oncologists, and radiation oncologists.

Your doctor may suggest that you choose an oncologist who specializes in the treatment of 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 non-Hodgkin lymphoma (for example, follicular lymphoma)

• Its stage (where the lymphoma is found)

• How quickly the cancer is growing (whether it is indolent or aggressive lymphoma)

• Your age

• Whether you have other health problems If you have indolent non-Hodgkin lymphoma without symptoms, you may not need treatment for the cancer right away. The doctor watches your health closely so that treatment can start when you begin to have symptoms. Not getting cancer treatment right away is called watchful waiting.

If you have indolent lymphoma with symptoms, you will probably receive chemotherapy and biological therapy. Radiation therapy may be used for people with Stage I or Stage II lymphoma.

If you have aggressive lymphoma, the treatment is usually chemotherapy and biological therapy. Radiation therapy also may be used.

–  –  –

• How long will treatment last?

• Will I have to stay in the hospital? If so, for how long?

• What can I do to take care of myself during treatment?

• 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 will I need checkups?

Watchful waiting

People who choose watchful waiting put off having cancer treatment until they have symptoms. Doctors sometimes suggest watchful waiting for people with indolent lymphoma.

People with indolent lymphoma may not have problems that require cancer treatment for a long time. Sometimes the tumor may even shrink for a while without therapy. By putting off treatment, they can avoid the side effects of chemotherapy or radiation therapy.

If you and your doctor agree that watchful waiting is a good idea, the doctor will check you regularly (every 3 months). You will receive treatment if symptoms occur or get worse.

Some people do not choose watchful waiting because they don't want to worry about having cancer that is not treated.

Those who choose watchful waiting but later become worried should discuss their feelings with the doctor.

You may want to ask your doctor these questions before

choosing watchful waiting:

• If I choose watchful waiting, can I change my mind later on?

• Will the disease be harder to treat later?

• How often will I have checkups?

• Between checkups, what problems should I report?

–  –  –

• Cells that line the digestive tract: Chemotherapy can cause poor appetite, nausea and vomiting, diarrhea, trouble swallowing, or mouth and lip sores. Ask your health care team about medicines or other treatments that help with these problems.

The drugs used for non-Hodgkin lymphoma also may cause skin rashes or blisters, and headaches or other aches. Your skin may become darker. Your nails may develop ridges or dark bands. Your doctor can suggest ways to control many of these side effects.

You may want to ask your doctor these questions before

having chemotherapy:

• 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?

Biological therapy

–  –  –

The side effects of radiation therapy depend mainly on the type of radiation therapy, the dose of radiation, and the part of the body that is treated. For example, external 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 treated area may become red, dry, and tender. You also may lose your hair in the treated area.

–  –  –

If you have radiation therapy and chemotherapy at the same time, your side effects may be worse. The side effects can be distressing. You can talk with your doctor about ways to relieve them.

You may want to ask your doctor these questions before

having radiation therapy:

• 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 lymphoma returns after treatment, you may receive stem cell transplantation. A transplant of your own blood-forming stem cells allows you to receive high doses of chemotherapy, radiation therapy, or both. The high doses destroy both lymphoma cells and healthy blood cells in the bone marrow.

–  –  –

8. Second Opinion 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 non-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.

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