Non-Hodgkin lymphoma

What causes non-Hodgkin lymphoma?

The causes of non-Hodgkin lymphoma are mostly unknown. But some things may increase your risk of developing it. These are called risk factors.

Macmillan Cancer Support have more information about causes and risk factors for NHL.

Diagnosing non-Hodgkin lymphoma

If you have symptoms, you’ll usually start by going to your GP. They may arrange for you to have blood tests or scans. Your GP will refer you to hospital for tests and for specialist advice and treatment.

At the hospital, the cancer doctor will ask about any symptoms, your general health and any illnesses you have had. They’ll also examine you.

If you think you may be pregnant, tell your GP or doctor. Some tests and treatments for lymphoma can be harmful to a baby in the womb. You can usually still have tests and treatment for lymphoma while pregnant. But it’s important to talk to your cancer doctor so they can plan your care safely.

Waiting for test results can be a difficult time. Macmillan Cancer Support have more information that can help.

Taking a tissue sample (biopsy)

The most important test for diagnosing lymphoma is a biopsy. This is when doctor or nurse removes a small piece of tissue or a sample of cells from the area of the body they want to check. This is usually from an enlarged lymph node. You may have all or part of the lymph node removed.

You may have a local anaesthetic to numb the area, or a general anaesthetic and a small operation. Your cancer doctor or specialist nurse will explain the type of biopsy that’s best for you.

Tests after diagnosis

You’ll have more tests before you start treatment for lymphoma. These help your cancer team plan your treatment safely and effectively.

Some tests check your general health. They’ll also check how well your heart, lungs, liver and kidneys are working. This includes blood tests to check:

• the levels of different blood cells in your blood
• whether you have certain infections linked to lymphoma, like HIV and hepatitis

You might have other tests to find out more about the stage of the lymphoma.

Macmillan Cancer Support have advice on questions to ask your healthcare team about lymphoma.

CT scan

A CT scan makes a detailed picture of the inside of the body. The picture is built up using X-rays taken by the CT scanner.

PET or PET-CT scan

A PET scan uses a low dose of radiation to check the activity of cells in different parts of the body. A PET-CT scan is a PET scan and a CT scan together.

MRI scan

An MRI scan uses magnetism to build up a detailed picture of areas of the body.

Bone marrow biopsy

Bone marrow is spongy material found in the bones. Blood cells are made in the bone marrow. For a bone marrow biopsy, a small sample of bone marrow is usually taken from the back of the hip bone (pelvis). Rarely, the sample is taken from the breastbone (sternum).

Lumbar puncture

A lumbar puncture means taking a sample of the fluid that surrounds the brain and spinal cord. This fluid is called cerebrospinal fluid (CSF).

Staging and grading of non-Hodgkin lymphoma

Your test results give your cancer team more information about the lymphoma. This includes information about the stage and grading of NHL.

Staging describes how many areas of your body are affected by lymphoma and where these areas are.

Grading describes how quickly the lymphoma cells are likely to grow. There are many different types of NHL.

Some grow very slowly and may not need treatment for months or years. These are called low grade lymphomas. Other types grow quickly and always need treatment soon after diagnosis. These are called high grade lymphomas.

Knowing the stage of lymphoma helps your doctors plan the best treatment for you.

A team of specialists will sit together and work out the best possible treatment plan for you. This is called a multidisciplinary team, or MDT.

Your doctor, cancer specialist or nurse will walk you through the different treatment options and their side effects. They will also talk you through the things worth thinking about before you agree, or consent, to treatment.

Treatment often involves a combination of cancer drugs, and sometimes other treatments are added as well. In some cases you may be offered treatment as part of a clinical trial.

Some treatments for lymphoma can affect your ability to have children later on, that is, your fertility. Your cancer doctor or specialist nurse should raise this with you before treatment begins.

The information below explains, in general terms, how different stages of NHL are treated. It does not cover every situation, and your own treatment plan will also depend on the specific type of NHL you have.

Early stage, low grade lymphoma (stage 1 or 2)

If you have early stage, low grade NHL, you do not always need to start treatment right away. Low grade lymphomas usually grow slowly, so instead you will be monitored closely for any sign that treatment is needed. This approach is called watch and wait.

Some people are offered radiotherapy if the affected lymph nodes lie close together, even without any symptoms. This often clears the lymphoma completely, and some people are cured with radiotherapy alone. If radiotherapy is not suitable for you, your treatment options become the same as those used for advanced lymphoma.

Advanced stage, low grade lymphoma (stage 3 or 4)

Treatment for advanced stage, low grade NHL usually depends on whether or not you have symptoms.

If you are not having any trouble with symptoms, your doctor may ask you to choose between:

• delaying treatment until symptoms appear, known as watch and wait
• having treatment with a targeted therapy drug called rituximab

If you do have symptoms, the most commonly used treatments are:

• chemotherapy combined with rituximab or a similar targeted drug, sometimes called chemoimmunotherapy
• rituximab given on its own

Sometimes radiotherapy is also used, to shrink an area of lymphoma that is causing symptoms.

Treatment is often successful at shrinking the lymphoma so you feel better and have fewer symptoms. This is called remission. Remission can last for years, but treatment does not fully cure the lymphoma, and in time it may come back. When it does, it can usually be treated again and brought back into remission.

In this way, advanced stage, low grade NHL can often be kept under control for a long time, and most people enjoy a good quality of life between courses of treatment.

If low grade lymphoma becomes high grade

Rarely, a low grade lymphoma can change over time and become high grade. This is called transformation, and when it happens, the lymphoma is then treated as a high grade lymphoma.

High grade lymphoma

High grade NHL usually grows quickly and needs to be treated straight away. The goal is to make the lymphoma disappear completely, which is called complete remission.

High grade NHL is usually treated with a combination of the following:

• chemotherapy
• steroids
• targeted therapy drugs such as rituximab and polatuzumab

Treatment can often shrink high grade lymphoma quickly. Sometimes radiotherapy is given afterward, usually if the lymph nodes were very enlarged (bulky), or if there was an area of lymphoma outside the lymph nodes before chemotherapy began. Radiotherapy may also be used when the lymphoma is confined to just one area of the body.

If non-Hodgkin lymphoma comes back

Low grade NHL almost always returns or starts growing again at some point after treatment, and it usually cannot be fully cured. Further treatment can help control it, and this can often keep you feeling well for long stretches of time. Some people are simply monitored rather than starting more treatment right away.

High grade NHL, on the other hand, can often be cured by treatment. But in some people it does come back, which is called a relapse or recurrence. If this happens, it may still be possible to have further, usually more intensive, treatment aimed at curing it and bringing the lymphoma back into remission. Intensive treatments include:

• CAR-T cell therapy
• stem cell transplant

After non-Hodgkin lymphoma treatment

You will have regular check-ups during and after your treatment, and your cancer doctor or specialist nurse will explain what to expect from these.

Follow-up appointments are also a good opportunity to raise any concerns with your cancer doctor or specialist nurse. Let them know as soon as possible if you notice any new problems or symptoms between appointments.

Macmillan Cancer Support has more information about follow-up care after lymphoma treatment.

Sometimes, side effects can continue or appear months or even years after treatment ends. These are known as late effects, and Macmillan Cancer Support also has information about late effects of lymphoma treatment.

Non-Hodgkin lymphoma prognosis

People sometimes search for non-Hodgkin lymphoma statistics to help them understand what might happen to someone in their situation. This is called prognosis.

Doctors can’t predict exactly what will happen in the future. But they may use some of the following types of statistics to help them make an estimate.

NHL survival rates

This is the number of people who are alive after certain periods of time after a non-Hodgkin lymphoma diagnosis. It includes people who have no signs of lymphoma and also people who have lymphoma that has come back.

NHL recurrence or relapse rates

This is the number of people whose non-Hodgkin lymphoma has come back after certain periods of time after treatment.

NHL mortality

This is the number of people who have died because of non-Hodgkin lymphoma during a certain period of time.

More about prognosis

You may find information about prognosis helpful. But not everyone wants or needs this information.

Statistics can be complex and difficult to understand. They may help you understand more, but they can’t tell you what will definitely happen to you.

Talk to your cancer doctor or specialist nurse about your prognosis. You can also ask them about whether information online might apply to you.

They can explain:

• which statistics apply to someone with your diagnosis
• what the information may mean to someone with your diagnosis
• how this may affect any treatment decisions you’re thinking about

Macmillan Cancer Support have more information on what is a cancer prognosis.

Wellbeing and recovery

It can take time to recover after lymphoma treatment. Some days you may feel better than others.

A healthy lifestyle can help speed up your recovery. Even small lifestyle changes may improve your well-being and long-term health.

Even if you already have a healthy lifestyle, you may choose to make some positive changes after treatment.

Macmillan Cancer Support have more information on leading a healthy lifestyle after treatment.

Support after non-Hodgkin lymphoma

People often have many different feelings when they finish lymphoma treatment. You may feel relieved that treatment has finished, but worried about what will happen in the future.

It’s important to know where to get support or information from if you need it. People often need support even some time after lymphoma treatment. But it can be difficult to know who to ask for help.

Ask your GP or someone from your cancer team for advice about support in your area.

Macmillan Cancer Support has further information to support you. You can:

• phone the Macmillan Support Line on 0808 808 00 00
• chat to Macmillan specialists online
• use the non-Hodgkin lymphoma forum – you can talk to others affected by lymphoma, ask questions and share your experience
• use the Cancer Care Map to find cancer support services near you

Other organisations who offer information and support include:

• Blood Cancer UK – offers support and information to people affected by blood cancers, including lymphoma
• Lymphoma Action –provides high quality information and support for people affected by lymphoma

Hope Programme

The HOPE programme is a free 6 session self-management course. It’s designed to help you develop techniques and strategies when living with or after cancer.

Topics include goal setting, fatigue management, and wellbeing.

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