EASY READING

If You Have Non-Hodgkin Lymphoma

What is non-Hodgkin lymphoma?

Non-Hodgkin lymphoma is a cancer that starts in the lymphatic (pronounced lim-FAT-ick) system in blood cells called lymphocytes (LIM-fo-sites). This cancer can be almost any place in the body.

color diagram showing the lymphatic system in the human body (location of lymph nodes, lymphatic vessels)/also shows the location of the thymus, spleen, bone marrow, stomach, colon and small intestine

The lymphatic system

Ask your doctor to use this picture to show you where the lymphoma is

The lymphatic system and lymphocytes

The lymphatic system is part of the immune system. (The immune system is how the body resists and fights germs and some kinds of cancer.) The lymphatic system is a network of tube-like vessels, organs, and lymph (limf) nodes. Lymph nodes are small, bean-shaped sacs that help filter germs and cell waste out of the body. Non-Hodgkin lymphoma often makes lymph nodes swell.

Lymphocytes are a kind of white blood cell. The main types of lymphocytes are B lymphocytes (B cells) and T lymphocytes (T cells). Lymphomas that start in the B cells are most common in the United States.

Are there different kinds of non-Hodgkin lymphoma?

There are many types of non-Hodgkin lymphoma. Some are very rare. Your doctor can tell you more about the type you have.

Here are the medical names for the most common types of non-Hodgkin lymphoma in the US.

  • Diffuse large B-cell lymphoma
  • Follicular (fah-LICK-yuh-ler) lymphoma

Questions to ask the doctor

  • Why do you think I have lymphoma?
  • Is there a chance I don’t have lymphoma?
  • Would you please write down the kind of lymphoma you think I might have?
  • What will happen next?

How does the doctor know I have non-Hodgkin lymphoma?

Tests that may be done

A lump under the skin that doesn’t go away is often the first sign of non-Hodgkin lymphoma. Or you might just not feel well and go in for a check-up.

The doctor will ask you questions about your health and do a physical exam. The doctor will feel the lymph nodes and other organs that may be affected. Swollen or hard lymph nodes are a common sign of non-Hodgkin lymphoma.

If signs are pointing to non-Hodgkin lymphoma, more tests will be done. Here are some of the tests you may need:

Biopsy (BY-op-see): In this test, the doctor takes out a lymph node or a small piece of tissue to check it for cancer cells. This is often done in a hospital under local anesthesia (pronounced AN-es-THEE-zhuh). This means you’re awake but it’s numb around the lymph node. You may also be given medicine to make you sleepy.

A biopsy is the only way to tell for sure if you have non-Hodgkin lymphoma. There are many types of biopsies. Ask your doctor what kind you will need. Each type has pros and cons. The choice of which type to use depends on your own case.

Blood tests: Certain blood tests can tell the doctor more about the types of cells and chemicals in the blood.

Chest x-rays: X-rays may be done to look for enlarged lymph nodes in the chest.

CT scan: This is also called a “CAT scan.” It’s a special kind of x-ray that takes detailed pictures to look for swollen lymph nodes or other organs.

MRI scan: MRIs use radio waves and strong magnets instead of x-rays to take detailed pictures. MRIs may be used to look at the spinal cord and brain if the doctor thinks the lymphoma may have spread there.

Ultrasound: For this test, a small wand is moved around on your skin. It gives off sound waves and picks up the echoes as they bounce off tissues. The echoes are made into a picture on a computer screen. Ultrasound can be used to look for swollen lymph nodes in places like your belly.

PET scan: In this test, you are given a special type of sugar that can be seen inside your body with a special camera. If there is cancer, this sugar shows up as “hot spots” where the cancer is found. This test can help show where the non-Hodgkin lymphoma has spread.

Questions to ask the doctor

  • What tests will I need to have?
  • Who will do these tests?
  • Where will they be done?
  • Who can explain them to me?
  • How and when will I get the results?
  • Who will explain the results to me?
  • What do I need to do next?

How serious is my cancer?

If you have non-Hodgkin lymphoma, the doctor will want to find out how far it has spread. This is called staging. You may have heard other people say that their cancer was “stage 1” or “stage 2.” Your doctor will want to find out the stage of your lymphoma to help decide what type of treatment is best for you.

The stage describes the spread of the lymphoma through your body. It also tells if the lymphoma has spread outside the lymph nodes to other organs of your body that are close by or farther away.

Non-Hodgkin lymphoma can be stage 1, 2, 3, or 4. The lower the number, the less the cancer has spread. A higher number, like stage 4, means a more serious cancer that has spread beyond the lymphatic system. Be sure to ask the doctor about the cancer stage and what it means for you.

Questions to ask the doctor

  • Do you know the stage of the lymphoma?
  • If not, how and when will you find out the stage of the lymphoma?
  • Would you explain to me what the stage means in my case?
  • Based on the stage of the lymphoma, how long do you think I’ll live?
  • What will happen next?

What kind of treatment will I need?

Some types of non-Hodgkin lymphoma may not need to be treated right away.

There are many ways to treat non-Hodgkin lymphoma. The main types of treatment are local or systemic.

Radiation is used to treat only the cancer. It doesn’t affect the rest of the body. This is called local treatment.

Chemo, immunotherapy (IM-yuh-no-THER-uh-pee), and targeted therapy drugs go through the whole body. They can reach cancer cells anywhere in the body. They are called systemic (pronounced sis-TEM-ick) treatment.

Doctors often use both radiation and systemic treatments to treat non-Hodgkin lymphoma. The treatment plan that’s best for you will depend on:

  • The type of non-Hodgkin lymphoma you have
  • The stage of your lymphoma
  • The chance that a type of treatment will cure your lymphoma or help in some way
  • Your age
  • Other health problems you have
  • Your feelings about the treatment and the side effects that come with it

Chemo

Chemo (pronounced KEY-mo) is the short word for chemotherapy (pronounced KEY-mo-THAIR-uh-pee) – the use of drugs to fight cancer. The drugs may be given into a vein or taken as pills. These drugs go into the blood and spread through the body. Chemo is given in cycles or rounds. Each round of treatment is followed by a break. Most of the time, 2 or more chemo drugs are given. Treatment often lasts for many months.

Side effects of chemo

Chemo can make you feel very tired, sick to your stomach, and cause your hair to fall out. These problems go away after treatment ends.

There are ways to treat most chemo side effects. If you have side effects, talk to your cancer care team so they can help.

Immunotherapy

Immunotherapy (pronounced IM-yuh-no-THAIR-uh-pee) is treatment that either boosts your own immune system or uses man-made versions of parts of the immune system that attack the lymphoma cells. These drugs can be given into a vein or taken as pills. Immunotherapy may kill non-Hodgkin lymphoma cells or slow their growth.

Side effects of immunotherapy

Immunotherapy can cause many different side effects depending on which drug is used. These drugs often make you feel tired, sick to your stomach, and cause fever, chills, and rashes. Most of these problems go away after treatment ends.

There are ways to treat most of the side effects caused by immunotherapy. If you have side effects, talk to your cancer care team so they can help.

Targeted therapy

Targeted therapy drugs target the changes in cells that cause cancer. These drugs don’t work the same as chemo drugs and often cause fewer side effects. They can be given into a vein, as a shot, or as pills.

Side effects of targeted therapy

Targeted therapy can cause many different side effects depending on which drug is used. These drugs often make you feel sick to your stomach and cause low blood counts. These side effects go away after treatment ends.

There are ways to treat most of the side effects caused by targeted therapy. If you have side effects, talk to your cancer care team so they can help.

Radiation treatments

Radiation (pronounced RAY-dee-A-shun) uses high-energy rays (like x-rays) to kill cancer cells. This treatment may be used as the main treatment for some stage 1 or 2 lymphomas. In some cases, it’s given along with chemo.

There are 2 main ways radiation can be given. It can be aimed at the cancer from a machine outside the body. This is called external beam radiation. Or, the radiation can be attached to an immunotherapy drug which takes it right to the lymphoma cells.

Side effects of radiation treatments

If your doctor says you should have radiation treatment, talk about what side effects might happen. Side effects depend on the type of radiation that’s used and the part of the body that’s treated. The most common side effects of radiation are:

  • Skin changes where the radiation is given
  • Feeling very tired (fatigue, which is pronounced fuh-TEEG)

Most side effects get better after treatment ends. Some might last longer. Talk to your cancer care team about what you can expect.

Surgery

Surgery is often used to do a biopsy to find out if a person has non-Hodgkin lymphoma and, if so, the type. But it’s rarely used as a form of treatment.

Clinical trials

Clinical trials are research studies that test new drugs or other treatments in people. They compare standard treatments with others that may be better.

If you would like to be in a clinical trial, start by asking your doctor if your clinic or hospital takes part in clinical trials. You can also call our clinical trials matching service at 1-800-303-5691 or go online at www.cancer.org/clinicaltrials to find studies near you.

Clinical trials are one way to get the newest cancer treatment. They are the best way for doctors to find better ways to treat cancer. If your doctor can find one that’s studying the kind of cancer you have, it’s up to you whether to take part. And if you do sign up for a clinical trial, you can always stop at any time.

What about other treatments that I hear about?

When you have cancer you might hear about other ways to treat the cancer or treat your symptoms. These may not always be standard medical treatments. These treatments may be vitamins, herbs, special diets, and other things. You may wonder about these treatments.

Some of these are known to help, but many have not been tested. Some have been shown not to help. A few have even been found to be harmful. Talk to your doctor about anything you’re thinking about using, whether it’s a vitamin, a diet, or anything else.

Questions to ask the doctor

  • Do I need to start treatment right away?
  • What treatment do you think is best for me?
  • What’s the goal of this treatment? Do you think it could cure the lymphoma?
  • Will I need other types of treatment, too?
  • What’s the goal of these treatments?
  • What side effects could I have from these treatments?
  • What can I do about side effects that I might have?
  • Is there a clinical trial that might be right for me?
  • What about special vitamins or diets that friends tell me about? How will I know if they are safe?
  • What should I do to be ready for treatment?
  • Is there anything I can do to help the treatment work better?
  • What’s the next step?

What will happen after treatment?

You’ll be glad when treatment is over. But it’s hard not to worry about cancer coming back. Even when cancer never comes back, people still worry about it. For years after treatment ends, you will see your cancer doctor. Be sure to go to all of these follow-up visits. You will have exams, blood tests, and scans to see if the cancer has come back. At first, your visits may be every few months. Then, the longer you’re cancer-free, the less often the visits are needed.

Having cancer and dealing with treatment can be hard, but it can also be a time to look at your life in new ways. You might be thinking about how to improve your health. Call us at 1-800-227-2345 or talk to your cancer care team to find out what you can do to feel better.

You can’t change the fact that you have cancer. What you can change is how you live the rest of your life – making healthy choices and feeling as good as you can.

The American Cancer Society medical and editorial content team
Our team is made up of doctors and master’s-prepared nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

Biopsy (BY-op-see): taking out a small piece of tissue to see if there are cancer cells in it

Immune system: the body system that fights infection

Lymph (limf) nodes: small, bean-shaped collections of immune system tissue found all over the body and connected by lymph vessels; also called lymph glands

Lymphocyte (LIM-fo-site): a type of white blood cell that helps fight infection; also the cell in which non-Hodgkin lymphoma starts

Spleen: an immune system organ found in the upper left side of the belly; it helps make white blood cells like lymphocytes

We have a lot more information for you. You can find it online at www.cancer.org. Or, you can call our toll-free number at 1-800-227-2345 to talk to one of our cancer information specialists.

Last Medical Review: January 13, 2016 Last Revised: January 13, 2016

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