Non-Hodgkin Lymphoma

First appointment

Your first appointment at Fred Hutchinson Cancer Center is a time for you and your hematologist-oncologist to meet. You might meet your advanced practice provider, too. You will talk about your diagnosis, subtype, disease stage and likely treatment. This visit is also a time for us to start getting to know you as a person. This helps us fit our recommendations to you. Together, you and your care team will decide what needs to happen next.

We encourage you to bring a family member or friend to your first appointment (and any future visits).

Hematologist A physician who specializes in diseases of the blood and blood-forming tissues. Stage The extent of a cancer in the body. Staging is usually based on the size of the tumor, whether lymph nodes contain cancer and whether the cancer has spread from the original site to other parts of the body.

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What to expect

First appointments usually last one to two hours. You will spend about one hour with your physician. The rest of your visit may involve checking in, being escorted to an exam room and getting settled in there, meeting other members of your team and setting up your next appointments. Here is what you can expect to happen.

Confirming your diagnosis

To confirm your NHL diagnosis, an experienced Fred Hutch hematopathologist looks carefully at your pathology slides and finds your NHL subtype.

Knowing your subtype is important, because it helps your physician decide which treatments will likely work best for you and when your treatment should start. For example, some subtypes respond well to certain medicines but not others. Some subtypes are best treated early on; for others, treatment is still important, but it’s less urgent.

Our hematopathologists may run more tests on your tissue sample to confirm your diagnosis or to narrow down your subtype. At your first appointment, your physician will have your results and go over them with you.

Staging your disease

Many patients who were diagnosed with NHL before coming to Fred Hutch have not had tests to stage their disease (check how far the disease has spread in their body). If you have had these tests and you already know the stage of your cancer, we will look at the test results before your appointment. If you have not had these tests, we will talk with you about which tests you need, why, how to get them and when you can expect results.

Discussing your treatment

The treatment we recommend for you depends in large part on your NHL subtype and stage. If you have had a biopsy and we know your subtype, your physician will explain generally which treatments you are likely to need. After we have the results of your staging tests, we will meet with you again to talk about your personalized treatment in more detail.

These appointments are also a time for you to tell us about yourself. Each patient and family has their own needs and preferences. We want to get to know you so we understand the best way to care for you.

Answering your questions

Starting with your first appointment (and after), we are here to answer your questions. We want to help you understand as much as you want to know about your disease, your treatment and how care happens at Fred Hutch. We invite you to bring a friend or family member with you to help keep track of your questions and the information that your team gives you. We also encourage you to talk with your care team about your hopes and concerns. Knowing more about you helps your team recommend the right treatment for you.

Before you leave, we will make sure you know what is going to happen next and how you can reach us if you have questions later. We will also schedule your next visit.

Staging NHL

Staging means finding out how far NHL has spread in your lymph system or other parts of your body. Accurate staging helps your physician predict which treatments are most likely to control your disease or put it into remission.

Lymph system The tissues and organs that produce, store and carry white blood cells that fight infections and other diseases. The tissues and organs that produce, store and carry white blood cells that fight infections and other diseases. This system includes the bone marrow, spleen, thymus, lymph nodes and lymphatic vessels (a network of thin tubes that carry lymph and white blood cells). Lymphatic vessels branch, like blood vessels, into all the tissues of the body. Staging Performing exams and tests to learn the extent of the cancer within the body, especially whether the disease has spread from where it first formed to other parts of the body. Performing exams and tests to learn the extent of the cancer within the body, especially whether the disease has spread from where it first formed to other parts of the body. It is important to know the stage of the disease in order to plan the best treatment.

Stages of NHL

Physicians use Roman numerals I (one), II (two), III (three) and IV (four) to name the stages of NHL. Stage I is the least advanced, and stage IV is the most advanced. All stages can be treated.

Stage I: Cancer is only in one group of lymph nodes or is only in one place outside your lymphatic system.
Stage II: Cancer is in two or more groups of lymph nodes, both above or both below your diaphragm. Cancer can also be in one organ and in lymph nodes in the same area (it can also be in other lymph nodes on the same side of your diaphragm).
Stage III: Cancer is in lymph nodes on both sides of your diaphragm.
Stage IV: Cancer has spread beyond your lymph nodes to other parts of your body, like your bone marrow, lungs or liver.

Your physician may add a letter to your stage to reflect details about your disease:

E (as in “Stage IIE [two E]”): Cancer is outside your lymphatic system (it is extralymphatic).
S (as in “Stage IIS [two S]”): Cancer is in your spleen.
X (as in “Stage IIX [two X]”): You have a larger tumor (usually at least 10 centimeters across or at least one-third of the width of your chest). Physicians also call this “bulky disease.”

Bone marrow The soft, spongy material in the center of your bones that produces all your blood cells, such as white blood cells, red blood cells and platelets. Diaphragm The thin muscle below the lungs and heart that separates the chest from the abdomen. Lymph system The tissues and organs that produce, store and carry white blood cells that fight infections and other diseases. The tissues and organs that produce, store and carry white blood cells that fight infections and other diseases. This system includes the bone marrow, spleen, thymus, lymph nodes and lymphatic vessels (a network of thin tubes that carry lymph and white blood cells). Lymphatic vessels branch, like blood vessels, into all the tissues of the body. Spleen An organ that is part of the lymphatic system. The spleen makes lymphocytes, filters the blood, stores blood cells and destroys old blood cells. It is on the left side of the abdomen near the stomach. Stage The extent of a cancer in the body. Staging is usually based on the size of the tumor, whether lymph nodes contain cancer and whether the cancer has spread from the original site to other parts of the body.

Staging tests

To diagnose the stage of your NHL, you need imaging tests and blood tests.

Imaging tests show which lymph nodes are bigger than normal, if other organs are affected and if you have any large tumors.

Blood tests check for lymphoma cells in your blood. They also check for other substances (like proteins) that can tell physicians how severe your disease is, if your organs are working well and how urgently you need treatment.

You will probably also have tests to check whether lymphoma is in your bone marrow.

Imaging tests to stage NHL

Imaging tests to stage NHL include:

Chest X-ray
CT (computed tomography) scan
FDG-PET (fluorodeoxyglucose positron emission tomography) or PET (positron emission tomography) scan
MRI (magnetic resonance imaging)

Blood tests to stage NHL

Blood tests to assess NHL may include:

Complete blood count (CBC)
Comprehensive metabolic panel
Lactate dehydrogenase (LDH)
Hepatitis testing
Uric acid testing
Antibody testing

Bone marrow aspiration and biopsy

After numbing the area so there is no pain, a physician uses a hollow needle to take a sample of marrow (bone marrow aspiration) and a small piece of bone (bone marrow biopsy). A pathologist checks these samples for signs of cancer.

Other tests you might need

Your physician recommends other tests based on your NHL subtype and your signs and symptoms. For example, if you have a type of lymphoma that affects the digestive tract, you may need an endoscopy to check your esophagus, stomach or small intestine. You may need a colonoscopy to check your large intestine. If it seems like lymphoma is affecting your brain or spinal cord, you may need a lumbar puncture.

Antibody A protein made by immune system cells and released into the blood. Antibodies defend the body against foreign substances, such as bacteria. Biopsy The removal of a sample of tissue or fluid that is examined to see whether cancer is present. This may be done with a large needle or through surgical removal of tissue or fluids. Bone marrow The soft, spongy material in the center of your bones that produces all your blood cells, such as white blood cells, red blood cells and platelets. Chest X-ray A type of high-energy radiation that can go through the body and onto film, making pictures of areas inside the chest, which can be used to diagnose disease. An X-ray is a type of high-energy radiation that can go through the body and onto film, making pictures of areas inside the chest, which can be used to diagnose disease. Colonoscopy An examination of the inside of the colon using a colonoscope, which is inserted into the rectum. A colonoscope is a thin, tube-like instrument with a light and a lens for viewing. An examination of the inside of the colon using a colonoscope, which is inserted into the rectum. A colonoscope is a thin, tube-like instrument with a light and a lens for viewing. It may also have a tool to remove tissue to be checked under a microscope for signs of disease. Computed tomography A procedure that uses a computer linked to an X-ray machine to make a series of detailed pictures of areas inside the body. The pictures are used to create three-dimensional (3-D) views of tissues and organs. A procedure that uses a computer linked to an X-ray machine to make a series of detailed pictures of areas inside the body. The pictures are taken from different angles and are used to create three-dimensional (3-D) views of tissues and organs. A dye may be injected into a vein or swallowed to help the tissues and organs show up more clearly. This scan may be used to help diagnose disease, plan treatment or find out how well treatment is working. Digestive tract The organs that food and liquids travel through when they are swallowed, digested and absorbed before leaving the body as feces. The organs that food and liquids travel through when they are swallowed, digested and absorbed before leaving the body as feces. These organs include the mouth, pharynx (throat), esophagus, stomach, small intestine, large intestine, rectum and anus. The digestive tract is part of the digestive system. Also called alimentary tract and gastrointestinal tract. Endoscopy A procedure that uses an endoscope to examine the inside of the body. An endoscope is a thin, tube-like instrument with a light and a lens for viewing. A procedure that uses an endoscope to examine the inside of the body. An endoscope is a thin, tube-like instrument with a light and a lens for viewing. It may also have a tool to remove tissue to be checked under a microscope for signs of disease. Imaging In medicine, a process that makes pictures of areas inside the body. Imaging uses methods such as X-rays (high-energy radiation), ultrasound (high-energy sound waves) and radio waves. Lumbar puncture A procedure in which a thin needle called a spinal needle is put into the lower part of the spinal column to collect cerebrospinal fluid or to give drugs. Also called spinal tap. Lymphoma Cancer that begins in the cells of the immune system. There are two basic categories of lymphomas: Hodgkin lymphoma and non-Hodgkin lymphomas. Cancer that begins in cells of the immune system. There are two basic categories of lymphomas. One is Hodgkin lymphoma, which is marked by the presence of a type of cell called the Reed-Sternberg cell. The other category is non-Hodgkin lymphomas, which includes a large, diverse group of cancers of immune system cells. Non-Hodgkin lymphomas can be further divided into cancers that have an indolent (slow-growing) course and those that have an aggressive (fast-growing) course. These subtypes behave and respond to treatment differently. Both Hodgkin and non-Hodgkin lymphomas can occur in children and adults, and prognosis and treatment depend on the stage and the type of cancer. Magnetic resonance imaging A procedure in which radio waves and a powerful magnet linked to a computer are used to create detailed pictures of areas inside the body. A procedure in which radio waves and a powerful magnet linked to a computer are used to create detailed pictures of areas inside the body. These pictures can show the difference between normal and diseased tissue. MRI makes better images of organs and soft tissue than other scanning techniques, such as computed tomography (CT) or X-ray. MRI is especially useful for imaging the brain, the spine, the soft tissue of joints and the inside of bones. Pathologist A physician who has special training in identifying diseases by studying cells and tissues under a microscope. Sign In medicine, a sign is something found during a physical exam or from a laboratory test that shows that a person may have a condition or disease. In medicine, a sign is something found during a physical exam or from a laboratory test that shows that a person may have a condition or disease. Some examples of signs are fever, swelling, skin rash, high blood pressure and high blood glucose. Stage The extent of a cancer in the body. Staging is usually based on the size of the tumor, whether lymph nodes contain cancer and whether the cancer has spread from the original site to other parts of the body. Symptom A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. A physical or mental problem that a person experiences that may indicate a disease or condition. Symptoms cannot be seen and do not show up on medical tests. Some examples of symptoms are headache, fatigue, nausea and pain. Bone marrow aspiration A procedure in which a small sample of bone marrow is removed, usually from the hip bone, breastbone or thigh bone.

A procedure in which a small sample of bone marrow is removed, usually from the hip bone, breastbone or thigh bone. A small area of skin and the surface of the bone underneath are numbed with an anesthetic. Then, a special wide needle is pushed into the bone. A sample of liquid bone marrow is removed with a syringe attached to the needle. The bone marrow is sent to a laboratory to be looked at under a microscope. This procedure may be done at the same time as a bone marrow biopsy.

Resources for patients and caregivers

Here are tips about how to prepare for your first appointment at Fred Hutch and what to bring.

Preparing For Your First Visit

Resources For New Patients

Just like every patient’s situation is different, every caregiver may be asked to help with different tasks.
Learn how you can offer support during a first visit.

Caregiver A person who gives care to people who need help, such as children, older people or patients who have chronic illnesses or disabilities. A person who gives care to people who need help taking care of themselves, such as children, older people or patients who have chronic illnesses or disabilities. Caregivers may be health professionals, family members, friends, social workers or members of the clergy. They may give care at home, in a hospital or in another health care setting.

Caregiving at the first appointment

As a caregiver, you can give your loved one both emotional and practical support for their first appointment. Ask them if you can help with things like these:

Helping them manage their stress, worry or other feelings.
Planning how to get to and from the appointment, what time to leave home and where to park.
Making a list of questions they want to ask the physician. Fred Hutch’s Guide to Your Care (PDF) has a list of questions they may want to ask the care team. At the appointment, make sure that all their questions get answered.
Taking notes during the visit. The physician will be giving a lot of details, which can be hard to remember later without notes.

Resources For Caregivers

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“We’re lucky to have Seattle Cancer Care Alliance (SCCA) in our backyard,” said Scott Lundberg, a survivor of non-Hodgkin lymphoma (NHL). Scott is a plaintiff’s personal injury lawyer who talks to many doctors in the course of his work. He is also a long-distance athlete whose strength and endurance proved invaluable during cancer treatment.

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