Lymphoma: Full guide

What is lymphoma?

Lymphoma is a cancer of lymphocytes. Lymphocytes are white blood cells that help fight infection. They live in your lymph nodes, spleen, bone marrow, and blood.

Lymph nodes are small, bean-shaped glands. You have them in your neck, armpits, chest, belly, and groin. In lymphoma, one type of lymphocyte grows out of control. This often makes lymph nodes swell.

There are two main groups: Hodgkin lymphoma and non-Hodgkin lymphoma. There are more than 80 subtypes in all. Some grow fast (aggressive). Others grow slowly over many years (indolent). Knowing your exact subtype is the most important first step.

Some people have fever, heavy night sweats that soak the sheets, or weight loss without trying. Doctors call these "B symptoms." Many people have no symptoms at all and only notice a painless lump.

Many types of lymphoma can be cured. Slow-growing types often cannot be cured, but they can be controlled for many years. Your care team will explain what the goal of treatment is for you.

Types

Hodgkin lymphoma

A type of lymphoma with large, unusual cells called Reed-Sternberg cells. It is most common in young adults and in people over 70. Most people are cured.

Non-Hodgkin lymphoma (NHL)

The larger group, with many subtypes. Most start in B cells, a type of lymphocyte. A smaller number start in T cells.

Diffuse large B-cell lymphoma (DLBCL)

The most common lymphoma. It grows fast, so it is treated soon after diagnosis. Many people are cured with first treatment.

Follicular lymphoma

The most common slow-growing lymphoma. Many people do not need treatment right away. It can come and go over many years.

High-grade B-cell lymphoma ("double-hit")

A fast-growing lymphoma with changes in two genes, MYC and BCL2. It often needs stronger treatment than regular DLBCL.

Nodular lymphocyte-predominant lymphoma

A rare, slow-growing type that used to be grouped with Hodgkin lymphoma. It behaves more like a B-cell lymphoma and is treated differently.

Other subtypes

These include mantle cell, marginal zone, Burkitt, and T-cell lymphomas. Each has its own treatment plan. Ask your care team which one you have.

Tests you may have

Biopsy

A doctor removes a lymph node, or a piece of it, to look at under a microscope. Taking out the whole node is best, because the doctor needs to see how the cells are arranged. A needle sample is sometimes not enough.

PET-CT scan

A scan that uses a small amount of a sugar-like tracer. Lymphoma cells take up the tracer and light up. It shows where the lymphoma is and later shows how well treatment worked.

Blood tests

These check your blood counts, liver and kidney health, and LDH (a protein that can be high when lymphoma is active).

Hepatitis B, hepatitis C, and HIV tests

Some lymphoma drugs can wake up a hidden hepatitis B infection. If you have had hepatitis B, you may take a pill to prevent this.

Bone marrow biopsy

A needle takes a small sample from the back of the hip bone. It checks if lymphoma is in the marrow. Many people with Hodgkin lymphoma or DLBCL do not need one, because the PET scan is enough.

Heart test (echocardiogram)

An ultrasound of the heart. It is done before drugs like doxorubicin, which can affect the heart.

Lung function tests

Breathing tests done before bleomycin, a drug often used for Hodgkin lymphoma that can affect the lungs.

Lumbar puncture (spinal tap)

A thin needle takes fluid from the lower back. It is done if there is a higher chance the lymphoma could spread to the brain or spinal cord.

What the stage means

The stage tells how far the lymphoma has spread. Lymphoma is staged differently from many other cancers. A high stage does not always mean it cannot be cured. Many people with stage 3 or 4 lymphoma are cured.

Your stage may also have a letter. "A" means no B symptoms. "B" means you have fever, drenching night sweats, or weight loss. "E" means it has spread into an organ next to a lymph node. "Bulky" means one very large mass.

Stage 1

Lymphoma is in one lymph node area, or in one organ outside the lymph nodes.

Stage 2

Lymphoma is in two or more lymph node areas on the same side of the diaphragm. The diaphragm is the muscle under your lungs.

Stage 3

Lymphoma is in lymph nodes both above and below the diaphragm.

Stage 4

Lymphoma has spread more widely into organs such as the bone marrow, liver, or lungs.

Early vs advanced

Stages 1 and 2 are called early stage. Stages 3 and 4 are called advanced stage. Treatment plans are often based on this split.

Risk scores

Doctors also use scores based on age, blood tests, and how many areas are involved. These help predict how the lymphoma may behave and guide treatment. Examples are the IPI for DLBCL and the FLIPI for follicular lymphoma.

Lymphoma subtype and lab tests

Lab tests on your biopsy tell your doctors the exact subtype. This matters because each subtype is treated differently.

The lab looks for markers on the cell surface and for changes in certain genes. You do not need to memorize them. It helps to ask what your results mean for your treatment.

CD20

A marker found on most B-cell lymphomas. Drugs like rituximab attach to CD20 and help the immune system kill the lymphoma cells.

CD30

A marker found on Hodgkin lymphoma cells and some other lymphomas. The drug brentuximab vedotin targets CD30.

Cell of origin (GCB or ABC)

In DLBCL, tests sort the lymphoma into two groups based on the kind of B cell it came from. This can help predict how it will behave.

MYC, BCL2, and BCL6 genes

A test called FISH checks for changes in these genes. If MYC and BCL2 are both changed, it is called "double-hit" lymphoma and may need different treatment.

Double expresser

The lymphoma makes too much MYC and BCL2 protein without the gene changes. It is usually treated like regular DLBCL.

t(14;18)

A gene swap found in most follicular lymphomas. It makes the cells live longer than they should.

EZH2

A gene that is changed in some follicular lymphomas. A pill called tazemetostat can be an option if follicular lymphoma comes back.

Grade

For follicular lymphoma, grade tells how many large cells are seen. Higher-grade follicular lymphoma can act more like a fast-growing lymphoma.

Main treatments

Watch and wait (active monitoring)

For some slow-growing lymphomas, like follicular lymphoma without symptoms, starting treatment early does not help people live longer. You have regular visits and tests, and treatment starts if needed.

Chemoimmunotherapy

Chemotherapy combined with an antibody like rituximab. For DLBCL, common plans are R-CHOP or Pola-R-CHP. For follicular lymphoma, a common plan is bendamustine with rituximab.

Hodgkin lymphoma chemotherapy

Plans such as ABVD or AVD are common. For advanced Hodgkin lymphoma, nivolumab (an immunotherapy drug) added to AVD is now a standard first treatment in the US.

Radiation therapy

High-energy beams aimed at one area. It is often used for early-stage lymphoma, sometimes after chemotherapy. It can be used alone for some small, slow-growing lymphomas.

Targeted and antibody drugs

These include antibody-drug conjugates, which carry a strong drug straight to the lymphoma cell. Examples are polatuzumab vedotin and brentuximab vedotin. Lenalidomide is a pill that helps the immune system.

CAR T-cell therapy

Your own T cells (a type of immune cell) are collected and changed in a lab so they can find and kill lymphoma cells. They are given back through a vein. It is used when DLBCL or follicular lymphoma comes back or does not respond, and can lead to long-lasting remission for some people.

Bispecific antibodies

Drugs that grab a lymphoma cell with one arm and a T cell with the other, bringing them together so the T cell can attack. Examples are glofitamab, epcoritamab, and mosunetuzumab. They are ready to use and do not need to be made from your cells.

Stem cell transplant

High-dose chemotherapy followed by stem cells to rebuild the bone marrow. An autologous transplant uses your own cells. It may be used if lymphoma comes back after first treatment.

Clinical trials

Studies that test new treatments. They can be a good option at any stage. Ask your care team if one fits you.

Common side effects and what helps

Infections

Treatment can lower white blood cells that fight germs. Wash hands often and avoid sick people. Call right away for a fever. Ask about vaccines, ideally before treatment starts.

Fatigue

Feeling very tired is common. Light activity like short walks can help. Rest when needed, and let others help with chores.

Nausea

Take anti-nausea medicine as prescribed, even before you feel sick. Eat small meals often. Bland foods may be easier.

Nerve problems (neuropathy)

Some drugs cause tingling or numbness in the hands and feet. Tell your care team early. They may change the dose or the drug.

Infusion reactions

Some antibody drugs can cause chills, fever, or rash during the first infusion. You get medicines beforehand to help prevent this, and nurses watch you closely.

Cytokine release syndrome (CRS)

A strong immune reaction that can happen after CAR T-cell therapy or bispecific antibodies. It can cause fever, low blood pressure, or trouble breathing. It is usually treatable when caught early.

Brain and nerve effects (ICANS)

After CAR T-cell therapy or some bispecific antibodies, some people get confused, have trouble speaking, or feel very sleepy. Caregivers should watch for this and call right away. People are often told not to drive for a period of time after CAR T.

Hair loss and mouth sores

Hair often grows back after treatment. Use a soft toothbrush and rinse your mouth often. Ask about special mouthwashes.

Constipation

Some drugs, like vincristine, slow the bowels. Drink fluids, eat fiber if allowed, and ask about stool softeners.

Living with and after lymphoma

After treatment, you will have regular check-ups. Many people do not need routine scans if they feel well. Tell your care team about new lumps, fevers, sweats, or weight loss.

Some treatments can have effects years later. Doxorubicin and chest radiation can affect the heart. Radiation can raise the risk of some other cancers, like breast cancer if the chest was treated. Ask your care team what checkups you need, such as heart tests, thyroid blood tests, or early breast screening.

Some treatments can affect fertility. If you may want children, ask about saving sperm or eggs before treatment starts.

With slow-growing lymphoma, living with the disease is like living with a long-term condition. You may have times of treatment and long times without it. Staying active, not smoking, and keeping your heart healthy all help.

It is normal to feel worried or low. Support groups, counselors, and social workers can help you and your family.