Non-Hodgkin lymphoma

Non-Hodgkin lymphoma (NHL) is a type of blood cancer. It starts when blood cells called lymphocytes become abnormal.

In the UK, NHL is the 6th most common cancer. Around 14,200 people are diagnosed with it each year.

It can affect people at any age, but it becomes more common as people get older. Most people diagnosed with NHL are over 55, and the highest rate of diagnosis is in people aged 80 to 84.

There are 2 main types of lymphoma, and non-Hodgkin lymphoma is one of them. The other is called Hodgkin lymphoma. How the lymphoma develops, and the treatment you may need, depends on which type you have.

In the video below, Dr Ranj is joined by Dr Priya Sriskandarajah. They take an in-depth look at lymphoma, talking through its symptoms, stages and treatment options.

The most important test for diagnosing non-Hodgkin lymphoma is a biopsy. In this test, a doctor or nurse takes a small piece of tissue, or a sample of cells, from the part of your body they want to check. Most often it comes from an enlarged lymph node. You may have the whole lymph node removed, or only part of it.

You may be given a local anaesthetic to numb the area. Or you may have a general anaesthetic and a small operation. Your cancer doctor or specialist nurse will explain which type of biopsy is best for you.

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

Some tests check your general health. They 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.

Cancer support organisations have advice on questions to ask your doctor and care team about lymphoma.

A CT scan gives a detailed picture of the inside of your body. The scanner takes X-rays, and these are put together to build up the picture.

A PET scan uses a low dose of radiation to check how active the cells are in different parts of your body. A PET-CT scan combines a PET scan and a CT scan in one.

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

Bone marrow is the spongy material inside your bones, and it's where your blood cells are made. In a bone marrow biopsy, the doctor takes a small sample of this marrow. It usually comes from the back of the hip bone (the pelvis). Rarely, the sample is taken from the breastbone (sternum).

In a lumbar puncture, a doctor takes a small sample of the fluid that surrounds your brain and spinal cord. This fluid is called cerebrospinal fluid (CSF).

Your test results give your cancer team more information about the lymphoma, including its stage and grade. Both matter in non-Hodgkin lymphoma (NHL).

Staging describes how many areas of your body are affected by the lymphoma, and where those 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. Others grow quickly and always need treatment soon after diagnosis. These are called high grade lymphomas.

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

If you have non-Hodgkin lymphoma, a team of specialists will meet to discuss the best possible treatment for you. This is called a multidisciplinary team (MDT).

Your doctor, cancer specialist or nurse will explain the different treatments and their side effects. They'll also talk with you about what to consider when making treatment decisions, before you agree (consent) to have treatment.

Treatment often involves a combination of cancer drugs. Sometimes other treatments may be used, and you may have some treatments as part of a clinical trial.

Some cancer treatments for lymphoma can affect your fertility, which means your ability to get pregnant or make someone pregnant. Your cancer doctor or specialist nurse should talk to you about this before you start treatment.

The general information below explains how different stages of HL are treated. It doesn't cover every situation, because your treatment plan will also depend on the specific type of NHL you have.

If you have early stage, low grade non-Hodgkin lymphoma (NHL), you don't always need to start treatment straight away. Low grade lymphomas usually grow slowly, so the doctor will instead keep an eye on you for signs that treatment is needed. This is called watch and wait.

Some people may be offered radiotherapy if the affected lymph nodes are close together, even when they have no symptoms. It often makes the lymphoma disappear completely. Some people are cured after radiotherapy alone.

If radiotherapy is not suitable for you, your treatment options will be the same as those used for advanced lymphoma.

What treatment you get for advanced stage, low grade non-Hodgkin lymphoma (NHL) usually depends on whether you have symptoms or not.

If you're not having problems with symptoms, your doctor may ask you to choose between:

• delaying treatment until symptoms develop, which is called watch and wait
• having treatment with a targeted therapy drug called rituximab

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

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

Radiotherapy may sometimes be used as well, to shrink an area of lymphoma that is causing symptoms.

Treatment often works well at shrinking the lymphoma, so you feel better and have fewer symptoms. This is called remission.

Remission may last for years. But treatment will not fully cure the lymphoma, and it may come back in time. When it does, it can be treated again and may be put into remission again.

In this way, advanced stage, low grade NHL can be controlled for a long time. Most people have a good quality of life between courses of treatment.

Some low grade lymphomas can change over time and become high grade, though this is rare. Doctors call this transformation. If it happens in non-Hodgkin lymphoma, the lymphoma is then treated as a high grade lymphoma.

High grade non-Hodgkin lymphoma (NHL) usually grows fast, so it needs to be treated straight away. The aim is to make the lymphoma disappear completely. Doctors call this complete remission.

Treatment for high grade NHL is usually a combination of these cancer drugs:

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

Treatment can often shrink high grade lymphoma quickly. Sometimes radiotherapy is given after chemotherapy. This is usually if:

• the lymph nodes were very enlarged (bulky)
• there was an area of lymphoma outside the lymph nodes before you had chemotherapy

Radiotherapy may also be used if the lymphoma is only in one area of the body.

Low grade non-Hodgkin lymphoma (NHL) nearly always comes back, or starts to grow again, at some point after treatment. It can't usually be cured.

You can have more treatment to control the lymphoma, and this can often keep you feeling well for long periods of time. Some people are monitored instead of starting more treatment straight away.

High grade NHL can often be cured with treatment. In some people, though, the lymphoma comes back. This is called a relapse or a recurrence.

If this happens, it may be possible to have more treatment to try to cure it. The treatment is usually more intensive, because the aim is to get the lymphoma into remission.

Intensive treatments include:

• CAR-T cell therapy
• stem cell transplant

Many people look up non-Hodgkin lymphoma statistics when they want to understand what might happen to someone in their situation. This is called prognosis.

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

Survival figures for non-Hodgkin lymphoma tell you how many people are still alive at certain points in time after they were diagnosed. The count includes people who show no signs of lymphoma, and it also includes people whose lymphoma has come back.

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

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

You'll have regular check-ups during and after your treatment. Your cancer doctor or specialist nurse will explain what to expect.

Follow-up appointments are a good time to talk to them about any concerns you have. If you have any problems or notice new symptoms between appointments, tell them as soon as possible.

Sometimes side effects continue, or only appear, months or years after treatment. These are called late effects.

Macmillan Cancer Support, a charity based in the UK, has more information about follow-up care and about the late effects of treatment for lymphoma.

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

A healthy lifestyle can help speed up your recovery. Even small changes may improve your well-being and your long-term health. If your lifestyle is already healthy, you may still choose to make some positive changes after treatment.

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

Many people feel several things at once when lymphoma treatment ends. You may be relieved that treatment is over, and still worry about what comes next.

It helps to know where you can get support or information if you need it. People often need support even some time after lymphoma treatment has finished. But it isn't always easy to know who to ask.

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

Macmillan Cancer Support also 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, where 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 that offer information and support include:

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