Cutaneous T-cell lymphoma (CTCL)

Cutaneous T-cell lymphoma (CTCL) is a rare type of non-Hodgkin lymphoma that affects the skin. CTCL can develop when T-cells become abnormal (cancerous). T-cells are white blood cells that normally help fight infection. They are sometimes called T-lymphocytes.

CTCL more commonly affects people aged 60 and over and is more common in men than women. There are different types of CTCL. The most common are called mycosis fungoides (MF) and Sézary syndrome.

Mycosis fungoides (MF) is the most common type of CTCL. It is usually a very slow-growing type of lymphoma. It often only affects the skin.

For most people, MF develops slowly or stays under control for many years. In a small number of people, MF may spread to other parts of the body over time.

In this type of CTCL, the abnormal T-cells circulate in the blood. They also affect the skin and can be found in other areas of the body, such as lymph nodes. Sezary syndrome is usually faster growing than MF.

If you are a healthcare professional, use our guide to find the right information and support for your patients affected by lymphoma. This explains the support available from Macmillan and from other trusted organisations.

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The causes of cutaneous T-cell lymphoma (CTCL) are not known.

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

We have more information about risk factors for non-Hodgkin lymphoma.

The stage of cutaneous T-cell lymphoma (CTCL) describes how much of the skin is affected, and if it has spread anywhere else. Knowing the stage helps your doctor plan the right treatment for you.

Symptoms of CTCL can sometimes stay the same for many years. Many people never progress beyond the first stage. A few people do not have any symptoms until they notice raised lumps (tumours) on their skin. The different stages of CTCL are:

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. 

You will have appointments with your lymphoma doctor or nurse less often than before. But at the same time, you may have new challenges to cope with and things to think about. 

We have information below about some of the things people ask about after lymphoma treatment. But you may have other questions or need information about something else. If there is something you want to talk about at any point after treatment, you can:

• call the Macmillan Support Line free on 0808 808 00 00
• chat to our specialists online
• visit our Online Community to talk to people who have been affected by lymphoma, share your experience, and ask an expert your questions.

The organisations below also offer information and support:

You may have some ongoing side effects as you recover from lymphoma treatment. You can use our impacts of cancer A-Z to search for information about managing different symptoms and side effects. Or find out more about side effects of treatment for Hodgkin lymphoma or treatment for non-Hodgkin lymphoma.

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.

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

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

• ask your GP or someone from your cancer team for advice about support in your area
• search cancercaremap.org to find cancer support services near you
• call us free on 0808 808 0000 or talk to us online - our cancer information and support specialists can offer guidance and help you find what you need. 

Our course Help to Overcome Problems Effectively (HOPE) helps people during and after cancer treatment. It is a free, interactive, group based, self management support course. It runs for 6 weeks, with each weekly session lasting 2.5 hours. To find out more about HOPE courses in your area, email ServiceOpsSupport@macmillan.org.uk

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

Other useful information

• Just been diagnosed?
• Physical impacts of cancer and treatment
• Help with money and work
• Cancer and your emotions
• Trouble sleeping
• Tiredness (fatigue)
• Uncertainty
• Walking (mobility) problems
• Coping with pain