Follicular lymphoma (a type of non-Hodgkin lymphoma)

What is follicular lymphoma (FL)?

Follicular lymphoma (FL) is a type of non-Hodgkin lymphoma. FL develops when B cells become abnormal (cancerous). B-cells are white blood cells that normally help fight infection. They are sometimes called B-lymphocytes.

The abnormal B-cells (lymphoma cells) usually build up in lymph nodes, but they can affect other parts of the body.

Follicular lymphoma develops slowly. You may not need treatment straightaway.

Symptoms of follicular lymphoma (FL)

Painless swelling in the neck, armpit or groin

Painless swelling in the neck, armpit or groin is the most common symptom of FL. It is caused by lymphoma cells building up in the lymph nodes, which makes them bigger.

B symptoms

Some people also have symptoms that doctors call B symptoms. These can include:

drenching night sweats which require a change of nightwear and bed covers
high temperatures (fevers) with no obvious cause
unexplained weight loss.

Knowing if you have any B symptoms will help your doctor to stage the lymphoma and plan your treatment.

Other symptoms

Sometimes FL can affect other areas of the body, such as the bone marrow.

This can cause symptoms such as:

anaemia - this is caused by the low number of red blood cells in your blood
bruising or bleeding easily - this is caused by the low number of blood-clotting cells (platelets) in your blood.

Causes of follicular lymphoma (FL)

The causes of follicular lymphoma (FL) are mostly unknown. Having a close relative (parent, brother or sister) with FL may slightly increase your risk of developing it. We do not know why this is.

Like other cancers, FL is not infectious. It cannot be passed on to other people.

We have more information about causes and risk factors in our information about non-Hodgkin lymphoma.

Diagnosis of follicular lymphoma (FL)

The most common test for diagnosing lymphoma is a biopsy. This may be done under local or general anaesthetic. A doctor will take a sample of tissue from the affected area. The most common place to take a biopsy from is an enlarged lymph node. This is called a lymph node biopsy. You may have all or a part of the lymph node removed. The tissue will be sent to a laboratory for testing. You may also have biopsies taken from other areas of your body, such as your bone marrow.

You can read more about further tests you may have in our information about non-Hodgkin lymphoma.

Waiting for test results can be a difficult time. It may help to talk to your family, friends or specialist nurse.

Staging and grade of follicular lymphoma (FL)

Your test results will help your doctors find out how many areas of your body are affected by lymphoma and where these areas are. This is called staging.

Lymphomas are also grouped as either low-grade or high-grade. Low-grade lymphomas are usually slow growing. High-grade lymphomas usually grow more quickly. Follicular lymphoma (FL) is a low-grade lymphoma and normally develops slowly. Sometimes it can change (transform) to a high-grade lymphoma.

Knowing the stage and grade of the lymphoma helps your doctor plan the right treatment for you.

We have more information about staging and grading of non-Hodgkin lymphoma.

Treatment for follicular lymphoma (FL)

A team of specialists will meet to discuss the best possible treatment for you. They are called a multidisciplinary team (MDT).

Your doctor, cancer specialist or nurse will explain the different treatments and their side effects to you. They will also talk to you about things to consider when making treatment decisions.

Treatment for follicular lymphoma (FL) depends on the stage of the lymphoma and whether you have symptoms that are causing problems. FL can often be kept under control with treatment.

You may have some treatments as part of a clinical trial.

Watch and wait

FL usually develops slowly. Some people may not need treatment for months or years. During this time, they have regular check-ups to monitor the lymphoma. This is called watch and wait.

First line treatment

The first treatments you have are called first line treatment. The aim of treatment is to control the lymphoma for as long as possible. This is called remission.

These are the most common treatments for FL.

Immunotherapy and chemotherapy
FL is often treated with an immunotherapy drug given on its own or in combination with chemotherapy (chemoimmunotherapy). The main immunotherapy drugs used are:

rituximab

obinutuzumab

The most common combinations of chemotherapy are:

CVP – called R-CVP (with rituximab) or O-CVP (with obintuzumab)

CHOP – called R-CHOP (with rituximab) or O-CHOP (with obintuzumab)

Sometimes the single chemotherapy drug bendamustine is used with an immunotherapy drug, instead of a combination chemotherapy. Other chemotherapy treatments may also sometimes be used.
Steroids

Steroids are drugs that are sometimes given with CVP or CHOP chemotherapy to help treat lymphomas. They also help you feel better and can make you feel less sick. Prednisolone tablets are the most commonly used steroid to treat FL.
Radiotherapy

Radiotherapy uses high-energy rays to destroy cancer cells, while doing as little harm as possible to nearby healthy cells. It may be used as a first treatment if the lymphoma cells are contained in 1 or 2 groups of lymph nodes in the same part of the body (stage 1 or 2). FL is usually very sensitive to radiotherapy.

Radiotherapy can also be used to treat lymphoma that has come back in one area of lymph nodes. Radiotherapy is also sometimes given to treat symptoms, such as pain.

Maintenance treatment

If the lymphoma is in remission after the first line treatment, you are usually offered further treatment to help stop it coming back. This is called maintenance treatment. You will be given rituximab or obinutuzumab, usually once every 2 months for up to 2 years.

If the lymphoma comes back

FL often comes back. This is called recurrence or relapse. If this happens you can usually have more treatment to help control it again. It may be possible to get the lymphoma into a second remission. You may then be able to have more maintenance treatment.

Treatments that can be used include:

the same combination of chemoimmunotherapy you had the first time – if you had a long remission
a different combination of chemoimmunotherapy
an immunotherapy drug on its own
a targeted therapy, such as lenalidomide or idelalisib
intensive treatment and a stem cell transplant.

Your doctor will discuss the best options for your situation. We have more information about treating lymphoma that has come back.

After treatment for follicular lymphoma (FL)

You will have regular follow-up appointments after your treatment. You can talk to your doctor or nurse about any concerns you may have at these appointments. Your doctor will want to know how you are feeling, and to check you are recovering from any side effects of treatment.

Late effects

Sometimes side effects may continue or develop months or years after treatment. These are called late effects. We have more information about long-term and late effects of treatment for lymphoma.

Sex life and fertility

Cancer and its treatment can sometimes affect your sex life. There are ways to improve your sexual well-being and to manage any problems.

Treatment for lymphoma may affect your fertility. If you are worried about your fertility it is important to talk with your doctor before you start treatment. We have more information about:

Well-being and recovery

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

Making small changes such as eating well and keeping active can improve your health and wellbeing and help your body recover.

Getting support

Everyone has their own way of dealing with illness and the different emotions they experience. You may find it helpful to talk things over with family and friends or your doctor or nurse.

Macmillan can offer emotional, practical and financial help and support. If you would like to talk, you can:

Call the Macmillan Support Line on 0808 808 00 00.
Chat to our specialists online.
Visit our follicular lymphoma forum to talk with people who have been affected by follicular lymphoma, share your experience, and ask an expert your questions.

The organisations below also offer information and support:

Blood Cancer UK

Blood Cancer UK offers support and information to people affected by blood cancers, including lymphoma.
Lymphoma Action

Lymphoma Action gives emotional support, advice and information for people with Hodgkin lymphoma or non-Hodgkin lymphoma and those close to them. It has a national network of people with lymphoma, as well as local groups. Their website has a section called trialslink where you can see information about lymphoma clinical trials.

About our information

References

Below is a sample of the sources used in our follicular lymphoma (FL) information. If you would like more information about the sources we use, please contact us at cancerinformationteam@macmillan.org.uk

Armitage JO and Longo DL. Is watch and wait still acceptable for patients with low-grade follicular lymphoma? Blood. 2016. 127:23:2804-2808. Available from: www.ashpublications.org/blood/article/127/23/2804/35265/Is-watch-and-wait-still-acceptable-for-patients

Dreyling M, Ghielmini M, et al on behalf of the ESMO Guidelines Working Group. Newly diagnosed and relapsed follicular lymphoma: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Annals of Oncology. 2014. 25 (Supplement 3), iii76–iii82. Available from: www.annalsofoncology.org/action/showPdf?pii=S0923-7534%2819%2934083-9

Reviewers

This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Senior Medical Editor, Dr Anne Parker, Consultant Haematologist.

Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.