Mantle cell lymphoma (MCL)

Some people do not have any symptoms. The most common MCL symptom is a painless swelling or lump in the neck, armpit or at the top of the legs (groin). This is caused by lymphoma cells building up in the lymph nodes.

Sometimes MCL can affect other areas of the body. Depending on the area, this can cause symptoms such as:

• loss of appetite
• diarrhoea
• sickness (nausea)
• a full feeling in the tummy (abdomen) – this is caused by an enlarged spleen
• anaemia – this is caused by a low number of red blood cells in the blood.

MCL may also cause the following symptoms:

• drenching night sweats
• unexplained weight loss.

These are called B symptoms. Along with staging and grading (below), B symptoms can help your cancer team understand:

• how the lymphoma might develop
• which treatments might help.

A change in how you feel or how your body works can be caused by conditions other than MCL. But always ask your GP to check any ongoing, new or unexplained symptoms.

We are also here if you need someone to talk to. You can:

• call the Macmillan Support Line free on 0808 808 00 00
• chat to our specialists online.

If you have symptoms that worry you, you should begin by going to your GP. They may arrange for you to have blood tests or scans. If they think cancer may be causing your symptoms, they will refer you to a hospital for more tests and specialist advice and treatment.

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

The most important test for diagnosing lymphoma is a biopsy. A biopsy means testing a small piece of tissue or a sample of cells from an area of the body affected. Sometimes MCL can be found with a blood test.

Find out more about having a biopsy and other tests in our general lymphoma information.

You may also have biopsies from other areas affected by symptoms. For example, if you have symptoms affecting your swallowing or stomach, you may have a test called an endoscopy to collect a biopsy sample.

Waiting for test results can be a difficult time. It may take up to 2 weeks for the results to be ready.

You may find it helpful to talk to family members or a close friend. Your specialist nurse can also provide support.

You can talk to one of our cancer support specialists for free on 0808 808 0000, 7 days a week, 8am to 8pm.

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

After the MDT meeting, you will usually meet with your cancer doctor and specialist nurse. They will explain the different treatments and their side effects. They will also talk to you about things to consider when making treatment decisions.

Your treatment for MCL may depend on:

• whether you have symptoms that are causing problems
• the stage of the lymphoma
• the results of tests on the lymphoma cells
• whether the lymphoma has become active again after previous treatment.

You may need just one type of treatment or a combination of treatments.

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

Watch and wait

Watch and wait means monitoring the lymphoma and checking for signs that you need to start treatment. It involves regular tests and appointments.

Watch and wait may also be called active surveillance or active monitoring. It is a way of safely delaying treatment until it is needed.

You might be offered watch and wait if MCL is not causing any symptoms.

First line treatment

The first treatment you have is called first line treatment. MCL is often treated with a combination of cancer drugs. The exact treatment you have might depend on your general health. Some treatments for MCL are more intensive than others.

Maintenance treatment

If the lymphoma is in remission after the first line treatment, your cancer team may talk to you about having maintenance treatment. This means ongoing rituximab treatment every 8 weeks to help delay the lymphoma coming back. Your cancer team can tell you how long maintenance treatment might continue.

Treating mantle cell lymphoma relapse

First line treatment is often very effective. It may get rid of all signs of lymphoma for a time. But MCL usually comes back after treatment. This is called a recurrence or relapse.

You can usually have more cancer drug treatment to help control it again. Your cancer team will explain which drugs are suitable for you. This may depend on the first line treatment you had.

Treatments that may be used include:

• a targeted therapy drug such as ibrutinib
• rituximab and chemotherapy.

A treatment called brexucabtagene autoleucel (Tecartus®) may be used to treat MCL that has come back. But it depends on the treatments you have already had. Brexucabtagene autoleucel is made from your own white blood cells. It is also called CAR T-cell therapy.

People often have many different feelings during and after MCL treatment. If you have finished treatment, you may feel relieved it has ended but worried about what might happen in the future.

It is important to know where to get support or information if you need it. People often need support even some time after MCL treatment. But sometimes it is difficult to know who to ask for help.

You can:

• ask your GP or someone from your cancer team for advice about support in your area
• find cancer support services near you
• call the Macmillan Support Line for free on 0808 808 00 00.
• chat to our cancer information specialists online.
• visit our non-Hodgkin lymphoma forum to talk to people who have been affected by lymphoma, share your experience, and ask your questions.

You may also find the HOPE programme helpful. The programme is a free 6 week self-management course designed to help you develop techniques and strategies when living with or after cancer. Topics include goal setting, fatigue management, and wellbeing.

You can sign up for the online HOPE programme. Or to find out more about face to face programmes in your area, email ServiceOpsSupport@macmillan.org.uk

• 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. It provides helpline services and a range of peer support including online support meetings, educational events and webinars. Its website includes TrialsLink, a database of lymphoma clinical trials.

We know cancer can affect you physically, emotionally and financially. We have information and advice about different ways cancer might impact you, such as help with:

• eating problems and your appetite
• fertility
• how you're feeling
• improving your sexual well-being
• managing pain and discomfort
• money and work
• tiredness (fatigue)
• trouble sleeping
• uncertainty
• walking and mobility problems.