Follicular lymphoma (2023)

Follicular lymphoma is a type of non-Hodgkin lymphoma (NHL). NHL is a cancer of the lymphatic system.

Follicular lymphoma develops when the body makes abnormal B lymphocytes. These lymphocytes are a type of white blood cellthat normally helps us fight infections. When you have a lymphoma, the abnormal lymphocytes build up in the lymph nodes or other body organs.

Follicular lymphoma is slow growing and you might not need treatment straight away.

The lymphatic system

The lymphatic system is an important part of our immune system. It has tubes that branch through all parts of the body.

These tubes are called lymph vessels or lymphatic vessels and they carry a colourless liquid called lymph. This liquid circulates around the body tissues. It contains a high number of white blood cells (lymphocytes) which fight infection.

When you have lymphoma, some the white blood cells (lymphocytes) don't work properly.

There are different types of non-Hodgkin lymphoma. The type you have depends on several factors including the type of cell it starts in and how fast growing it is.

There are 2 main types of lymphocytes - B cells and T cells. They both help us fight infections but in slightly different ways.

Follicular lymphoma affects the B cells and so is called a B cell lymphoma.

How common is it?

Follicular lymphoma is the most common type of low grade lymphoma. Each year around 2,600 people are diagnosed with follicular lymphoma in the UK.

Out of all people with NHL, 19out of 100 people (19%) have follicular lymphoma. It mainly affects adults over the age of 60.

Symptoms

Painless swellings

The most common symptom is one or more painless swellings in the:

• neck
• armpit
• groin

These swellings are enlarged lymph nodes.

General symptoms (B symptoms)

You might have other general symptoms such as:

• heavy sweating at night
• high temperatures that come and go with no obvious cause
• losing a lot of weight (more than one tenth of your weight)

Doctors call this group of symptoms B symptoms. Some people might also have unexplained itching. It is important to tell your doctor about any symptoms like this.

Some people with NHL have these symptoms, but many don't.

Getting diagnosed

The main tests are:

• removal of the enlarged lymph node, or taking a sample of tissue from a lymph node (lymph node biopsy)
• blood tests

You have different tests if lymphoma cells are found in the biopsy. You might have different scans and a bone marrow test.

Stages and grades

Doctors put NHL into 2 groups, depending on how quickly they are likely to grow and spread. The 2 groups are:

• low grade (slow growing)
• high grade (fast growing)

Follicular lymphoma is usually slow growing and called a low grade lymphoma.

Doctors might further subdivide follicular lymphoma into 3 grades. These are 1, 2, and 3. Grade 3 is divided into 3A and 3B. Grade describes how the cells look under a microscope. The grade is based on the number of large, follicular lymphoma cells (centroblasts) that they can see.

Grade 1, 2 and 3A are generally thought to be low grade or slow growing. Grade 3B follicular lymphoma is faster growing and is likely to be treated as a high grade lymphoma.

You can ask your doctor about the grade of your follicular lymphoma and what this means for you.

Your stage means the number and position of lymph nodes or other organs affected by lymphoma. Doctors use your stage and grade to plan the best treatment for you.

Treatment overview

Your doctors decide about treatment depending on whether you have limited (early) or advanced lymphoma.

Limited stage generally means you have stage 1 or 2 non-Hodgkin lymphoma.

Advanced disease means you have stage 3 or stage 4 lymphoma.

Some people with stage 2 bulky lymphoma might have advanced disease, depending on their circumstances.

Your doctor or specialist nurse can explain your stage, and what this means in your situation.

Treatment for limited disease

Radiotherapy

You are most likely to have radiotherapy as a treatment for limited disease. You have radiotherapy to the affected lymph nodes. This can help to control the lymphoma for a long time and may cure it.

Active Monitoring

Some people might not need treatment straight away. You have regular check ups instead. This is called active monitoring or watch and wait.

This might be suitable if all of your lymphoma was removed with your biopsy, and there is no sign of disease elsewhere in the body.

Your doctor might suggest active monitoring if you don't have any symptoms. You would only start treatment when you have symptoms. When the symptoms start, you have the same treatment as someone with advanced disease.

How often you have appointments depends on your situation. So you might have appointments every few months at first. These might become less often if you are well and nothing changes. At your appointment you usually have:

• an examination
• blood tests

Treatment for advanced disease (stage 3 or 4)

The treatment for advanced low grade NHL usually aims to control it for as long as possible, rather than to cure it. Treatment can often control the disease for several years.

The time when the lymphoma disappears is called remission. Remission can last for many years. But second and later remissions are usually shorter than the first remission. You usually have more treatment when the lymphoma comes back.

There are several phases of treatment. These are:

• active monitoring or watch and wait
• first line treatment
• maintenance treatment
• further treatment if your lymphoma comes back

Active monitoring

Your doctor might decide not to give treatment if you don't have any symptoms when you are diagnosed. Instead, your doctor monitors you with regular check ups. This is called active monitoring or watch and wait.

Your doctor chooses to do this because you have no symptoms bothering you and your lymphoma can be very slow growing. All treatment has side effects, so doctors don't want to give people treatment they don't need.

There is generally no evidence to show it is helpful to give treatment straight away to people with advanced low grade NHL, if they don't have symptoms.

First line treatment

Your first treatment is called first line treatment.

Your doctor might recommend a drug such as rituximab on its own as a first line treatment. Rituximab is a type of cancer drug called a monoclonal antibody. It helps your immune system to find and kill the lymphoma cells.

You might have this if you have advanced disease with no symptoms. This might delay the need to have chemotherapy and rituximab. Having the 2 treatments together are likely to cause more side effects than rituximab alone.

Your doctor might offer you a combination of treatments if you have symptoms, or if you have very enlarged lymph nodes. You have chemotherapywith rituximab. This combination of chemotherapy and rituximab is called chemoimmunotherapy.

You might have rituximab with one of the following:

• we must have
• a combination of cyclophosphamide, doxorubicin, vincristine and dexamethasone (CHOP)
• a combination of cyclophosphamide, vincristine and prednisolone (CVP)
• chlorambucil

These are all chemotherapy drugs except dexamethasone and prednisolone, which are steroids. You might haverituximab or chlorambucil tablets if you are fit enough to have a combination of drugs at the same time.

Maintenance treatment

Once you are in remission, you have treatment to try to delay the lymphoma coming back. This is called maintenance treatment. You usually have rituximab every 2 months for up to 2 years.

If your lymphoma comes back

Follicular lymphoma tends to come back after some time. You need more treatment if this happens. There are lots of options. You might have one of the following:

• a combination of 3 or 4 chemotherapy drugs with rituximab
• R-CVP again if you were in remission for a long time
• a single chemotherapy drug, with or without rituximab
• rituximab on its own
• lenalidomide with rituximab

Your lymphoma might go back into remission after treatment. You may then have rituximab as a maintenance treatment for up to 2 years.

Some people might have a drug similar to rituximab called obinutuzumab. You have this with the chemotherapy drug bendamustine.

Your doctor might suggest joining a clinical trial. Trials might be looking at newer drugs with or without standard treatment.

Or your doctor might recommend more intensive treatment following your second relapse, or a later relapse. You have high dose chemotherapy and a stem cell transplant. You must be fairly fit and well to have this treatment.

Transforming from low grade to high grade

Over time, low grade lymphoma might change into a more aggressive high grade lymphoma. This doesn't happen in everyone. If it does, it might be many years after you were first diagnosed with your lymphoma.

Treatment when a low grade lymphoma transforms is the same treatment as a high grade lymphoma.

This is usually a combination of chemotherapy drugs andyou might also have rituximab. The drugs you have depends on the type of high grade lymphoma you have. You might have a stem cell transplant.

It used to be the case that transformed lymphomas were harder to treat. But treatments are improving for this group of people. This is particularly since the introduction of rituximab and other drugs. Some people can be treated successfully.

Follow up

After treatment, you have regular follow ups. A doctor will examine you and ask about side effects. You usually have blood tests.

You don't usually have a scan as part of your routine check ups.

Your appointments might be every few months at first. They might become less often if you are well and your disease is stable. Take the opportunity to ask questions. But don't wait for a booked appointment if you have symptoms, or other concerns.

Your medical team will go through what symptoms to look out for, and who to contact.

Research

There is research looking at how best to treat non-Hodgkin lymphoma.

• Find a clinical trial

Survival

The best person to talk to about your prognosis or outlook is your specialist. Not everyone wants to know.People cope differentlywith their lymphoma and want different information.

Survival depends on many factors. So no one can tell you how long you will live. Your doctor might be able to give you some guide, based on their knowledge and experience.

• More information about survival

Coping with follicular lymphoma

It can be very difficult coping with a diagnosis of low grade lymphoma. For many, it is a chronic condition that you live with.

Some people find that a watch and wait approachcan make them feel anxious. Especially when their check up appointment is approaching. Other people are relieved that they don't need treatment just yet. And they can go back to work or on the holiday they had planned.

You might have periods of time when you are in remission and are well. Then times when your lymphoma has relapsed and you need to start treatment again.

It can help to talk to friends and family. Or join a support group to meet people in a similar situation.

• Read more about living with NHL