Many people with non-Hodgkin's lymphoma want to take an active part in making decisions about their medical care. It is natural to want to learn all you can about your disease and your treatment choices. However, shock and stress after the diagnosis can make it hard to think of everything you want to ask the doctor. It often helps to make a list of questions before you visit your doctor.

 

To help remember what your doctor says, you may take notes or ask whether you may use a tape recorder. You may also want to have a family member or friend with you when you talk to your doctor – to take part in the discussion, to take notes, or just to listen.

 

You do not need to ask all your questions at once. You will have other chances to ask your doctor to explain things that are not clear and to ask for more information.

 

Your doctor may refer you to a specialist, or you may ask for a referral. Specialists who treat non-Hodgkin's 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.

 

Getting a second opinion

Before starting treatment, you might want a second opinion about your diagnosis and your treatment plan.

 

It is 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.

 

You also may want a second opinion about 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 arrange to see another doctor. Most of the time, it is not a problem to take several weeks to get a second opinion. The delay in starting treatment usually will not make treatment less effective. To be sure, you should discuss this delay with your doctor. Some people with non-Hodgkin's lymphoma need treatment right away.

 

There are a number of ways to find a doctor for a second opinion:

 

  • Your doctor may refer you to one or more lymphoma specialists. At cancer centers, many specialists often work together as a team.

 

  • In the U.S., the NCI's Cancer Information Service, at 1-800-4-CANCER, can tell you about nearby treatment centers.

 

  • A local or state medical society, a nearby hospital, or a medical school can usually provide the names of specialists in your area.

 

  • The American Board of Medical Specialties (ABMS) has a list of doctors who have had training and passed exams in their specialty. You can find this list in the Official ABMS Directory of Board Certified Medical Specialists. This Directory is in most public libraries.

 

  • Nonprofit groups with an interest in lymphoma may be of help.

 

Preparing for treatment

The choice of treatment depends on many factors, including:

 

  • Which type of non-Hodgkin's lymphoma you have (for example, follicular lymphoma)
  • The stage of your cancer (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

 

Your doctor can describe your treatment choices and their expected results. You and your doctor can work together to develop a treatment plan that meets your needs.

 

You may want to ask the doctor these questions before treatment begins:

 

  • What is the stage of my cancer? Where are the tumors?

 

  • What are my treatment choices? Which do you recommend for me?

 

  • What are the expected benefits of each kind of treatment? How will we know the treatment is working? What tests will be used to check its effectiveness? How often will I get these tests?

 

  • What are the risks and possible side effects of each treatment? What can we do to control my side effects?

 

  • How long will treatment last?

 

  • Will I have to stay in the hospital?

 

  • How will treatment affect my normal activities?

 

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

 

  • What is the treatment likely to cost? Will my insurance cover this treatment?

 

  • How often will I need checkups?

 

  • Would a clinical trial (research study) be appropriate for me?

 

Treatment methods

If you have indolent non-Hodgkin's 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 patients 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.

 

If non-Hodgkin's lymphoma comes back after treatment, doctors call this a relapse or recurrence. People whose lymphoma comes back after treatment may receive stem cell transplantation.

 

Because cancer treatments often harm healthy cells and tissues, side effects are common. Side effects depend mainly on the type and extent of the treatment. Side effects may not be the same for each person, and they may change from one treatment session to the next. The younger a person is, the easier it may be to cope with treatment and its side effects.

 

Before treatment starts, the health care team will explain possible side effects and suggest ways to help you manage them.

 

At any stage of the disease, you can have treatments to control pain and other symptoms, to relieve the side effects of therapy, and to ease emotional and practical problems. This kind of treatment is called supportive care.

 

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

 

Watchful waiting

People who choose watchful waiting put off having cancer treatment until they have symptoms. Doctors sometimes suggest watchful waiting for a patient with indolent lymphoma. A person 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, a patient 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 the 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?

 

Chemotherapy

Chemotherapy uses drugs to kill cancer cells. It is called systemic therapy because the drugs travel through the bloodstream. The drugs can reach cancer cells in almost all parts of the body.

 

You may receive chemotherapy by mouth, through a vein, or in the space around the spinal cord. Treatment is usually in an outpatient part of the hospital, at the doctor's office, or at home. Some patients need to stay in the hospital during treatment.

 

If a patient has lymphoma in the stomach caused by H. pylori infection, the doctor may treat this lymphoma with antibiotics. After the drug cures the infection, the cancer also may go away.

 

The side effects of chemotherapy depend mainly on the specific drugs and the dose. The drugs affect cancer cells and other cells that divide rapidly:

 

  • Blood cells: When drugs affect your healthy blood cells, you are more likely to get infections, bruise or bleed easily, and feel very weak and tired.

 

  • Cells in hair roots: Chemotherapy can cause you to lose your hair. Your hair will grow back, but sometimes the new hair is somewhat different in color and texture.

 

  • Cells that line the mouth, stomach, and other parts of the digestive tract: Chemotherapy can cause poor appetite, nausea and vomiting, diarrhea, trouble swallowing, or mouth and lip sores.

 

The drugs used for non-Hodgkin's 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 the doctor these questions before starting chemotherapy:

 

  • Which drug or drugs will I have?
  • How do the drugs work?
  • What are the expected benefits of the treatment?
  • What are the risks and possible side effects of treatment? What can we do about them?
  • Are there any long-term effects from the drugs?
  • When will treatment start? When will it end?
  • How will treatment affect my normal activities?

 

Biological therapy

People with certain types of non-Hodgkin's lymphoma may have biological therapy. This type of treatment helps the immune system fight cancer.

 

Monoclonal antibodies are the type of biological therapy used for lymphoma. They are proteins made in the lab that can bind to cancer cells. They help the immune system kill lymphoma cells. Patients receive this treatment through a vein at the doctor's office, clinic, or hospital.

 

Flu-like symptoms such as fever, chills, headache, weakness, and nausea may occur. Most side effects are easy to treat. Rarely, a patient may have more serious side effects, such as breathing problems, low blood pressure, or severe skin rashes. Your doctor or nurse can tell you about the side effects that you can expect and how to manage them.

 

You may want to ask the doctor these questions before having biological therapy:

 

  • What will the treatment do?
  • Will I have to stay in the hospital?
  • How will we know if the treatment is working?
  • How long will I be on biological therapy?
  • Will I have side effects during treatment? How long will they last? What can we do about them?

 

Radiation therapy

Radiation therapy (also called radiotherapy) uses high-energy rays to kill non-Hodgkin's lymphoma cells. It can shrink tumors and help control pain.

 

Two types of radiation therapy are used for people with lymphoma:

 

  • External radiation: A large machine aims the rays at the part of the body where lymphoma cells have collected. 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.

 

  • Systemic radiation: Some people with lymphoma receive an injection of radioactive material that travels throughout the body. The radioactive material is bound to antibodies that seek out lymphoma cells. The radiation destroys the lymphoma cells.

 

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. Radiation to the lung can cause coughing or shortness of breath. In addition, your skin in the treated area may become red, dry, and tender. You also may lose your hair in the treated area.

 

You are likely to become very tired during external radiation therapy, especially in the later weeks of treatment. Resting is important, but doctors usually advise patients to try to stay as active as they can.

 

People who get systemic radiation also may feel very tired. They may be more likely to get infections.

 

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 the doctor these questions before starting radiation therapy:

 

  • Why do I need this treatment?
  • What are the expected benefits of radiation therapy?
  • What are the risks and side effects of this treatment? What can we do about them?
  • Are there any long-term effects?
  • When will the treatments begin? When will they end?
  • How will I feel during therapy?
  • How will treatment affect my normal activities?

 

Stem cell transplantation

A transplant of blood-forming stem cells allows a person 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. Later, the patient receives healthy blood-forming stem cells through a flexible tube placed in a large vein in the neck or chest area. New blood cells develop from the transplanted stem cells.

 

Stem cell transplants take place in the hospital. The stem cells may come from the patient or from a donor:

 

  • Autologous stem cell transplantation: This type of transplant uses the patient's own stem cells. The stem cells are removed from the patient, and the cells may be treated to kill lymphoma cells that may be present. The stem cells are frozen and stored. After the patient receives high-dose treatment, the stored stem cells are thawed and returned to the patient.

 

  • Allogeneic stem cell transplantation: Sometimes healthy stem cells from a donor are available. The patient's brother, sister, or parent may be the donor. Or the stem cells may come from an unrelated donor. Doctors use blood tests to be sure the donor's cells match the patient's cells.

 

  • Syngeneic stem cell transplantation: This type of transplant uses stem cells from the patient's healthy identical twin.

 

You may want to ask the doctor these questions before having a stem cell transplant:

 

  • What are the possible benefits and risks of different types of transplants?
  • What kind of stem cell transplant will I have? If I need a donor, how will we find one?
  • How long will I need to be in the hospital? Will I need special care?
  • How will we know if the treatment is working?
  • What can we do about side effects?
  • How will treatment affect my normal activities?
  • What is my chance of a full recovery?

 

Supportive care

Non-Hodgkin's lymphoma and its treatment can lead to other health problems. You may receive supportive care to prevent or control these problems and to improve your comfort and quality of life during treatment.

 

You may receive antibiotics and other drugs to help protect you from infections. Your health care team may advise you to stay away from crowds and from people with colds and other contagious diseases. If an infection develops, it can be serious, and you will need treatment right away.

 

Non-Hodgkin's lymphoma and its treatment also can lead to anemia, which may make you feel very tired. Drugs or blood transfusions can help with this problem.

 

Complementary and alternative medicine

Some people with cancer use complementary and alternative medicine (CAM):

 

  • An approach is generally called complementary medicine when it is used along with standard treatment.

 

  • An approach is called alternative medicine when it is used instead of standard treatment.

 

Acupuncture, massage therapy, herbal products, vitamins or special diets, visualization, meditation, and spiritual healing are types of CAM. Some people report that such approaches help them feel better.

 

However, some types of CAM can create health problems. An alternative medicine may not work as well as standard treatment. Patients with aggressive lymphoma who use alternative medicine instead of standard treatment may reduce the chance to control or cure their disease.

 

It is important to keep in mind that some complementary medicines may interfere with standard treatment. Combining CAM with standard treatment may even be harmful. Before trying any type of CAM, you should discuss its possible benefits and risks with your doctor.

 

Some types of CAM are expensive. Health insurance may not cover the cost.

 

You may want to ask the doctor these questions before you choose CAM:

 

  • What benefits can I expect from this therapy?
  • What are its risks?
  • Do the expected benefits outweigh the risks?
  • What side effects should I watch for?
  • Will the therapy change the way my cancer treatment works? Could this be harmful?
  • Is this therapy under study in a clinical trial? If so, who sponsors the trial?
  • Will my health insurance pay for this therapy?

 

Nutrition

It is important for you to eat well. Eating well means getting enough calories to maintain a good weight and enough protein to keep up your strength. Good nutrition may help people with cancer feel better and have more energy.

 

But eating well can be hard. You may not feel like eating if you are tired or in pain. Also, the side effects of treatment (such as nausea, vomiting, or mouth sores) can be a problem. Some people find that foods do not taste as good during cancer treatment.

 

The doctor, dietitian, or other health care provider can suggest ways to maintain a healthy diet.

 

Follow-up care

Follow-up care for non-Hodgkin's lymphoma is important. Your doctor will watch your recovery closely and check for recurrence of the lymphoma. Checkups help make sure that any changes in your health are noted and treated as needed. Checkups may include a physical exam, lab tests, chest X-rays, and other procedures. Between scheduled visits, you should contact the doctor right away if you have any health problems.