What is cutaneous T-cell lymphoma (CTCL)?

Cutaneous T-cell lymphoma (CTCL) is a rare type of non-Hodgkin lymphoma that affects the skin. It develops when T-cells (also called T-lymphocytes) become abnormal. T-cells are white blood cells that fight infection.

There are different types of CTCL. The most common are called mycosis fungoides and Sézary syndrome.

Mycosis fungoides

This is the most common type of CTCL. MF is usually a very slow-growing type of lymphoma that often only affects the skin.

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

Sézary syndrome

In this type of CTCL, the abnormal T-cells affect the skin but are also found in other areas of the body such as the blood and lymph nodes. Lymph nodes are part of the body’s lymphatic system. They filter out disease and germs (bacteria and viruses) as fluid passes through them.

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Symptoms of cutaneous T-cell lymphoma (CTCL)

In the early stages, CTCL can look like other skin conditions, such as eczema or psoriasis. This may mean it takes some time to diagnose.

CTCL may cause changes to the skin, including:

  • red, rash-like patches
  • itchy, sometimes painful, areas
  • raised patches (plaques)
  • lumps.

Some people with CTCL have lumps where a lymph node is swollen.

Causes of cutaneous T-cell lymphoma (CTCL)

The causes of CTCL are not known. Like other cancers, it is not infectious and can not be passed on to other people. It usually affects people aged 40 to 60 and is more common in men than women.

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

Diagnosis of cutaneous T-cell lymphoma (CTCL)

You usually start by seeing your GP. They can arrange for you to see a specialist at the hospital for tests and advice. This specialist is often a dermatologist (a doctor who treats skin problems) or a lymphoma doctor.

The specialist doctor will check your skin. They will take a small sample (a skin biopsy) from an area of affected skin. You usually have an injection to numb the area first. The sample is then examined under a microscope for abnormal cells.

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

Waiting for tests results can be a difficult time, we have more information that can help.

Stages of cutaneous T-cell lymphoma (CTCL)

The stage of CTCL describes how much of the skin is affected and if it has spread anywhere else. Knowing the stage helps your doctors plan the best treatment for you.

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

  • Stage 1

    There are red patches or raised red patches (plaques) on the skin. This stage is sometimes divided into:

    • Stage 1A – less than 10% of the skin is affected.
    • Stage 1B – 10% or more of the skin is affected.
  • Stage 2A

    Skin symptoms are the same as in stage 1. Some lymph nodes are enlarged. There may be signs of abnormal lymphocytes in the lymph nodes.

  • Stage 2B

    There may be one or more tumours on the skin that are greater than 1cm. The lymph nodes may or may not be affected.

  • Stage 3

    More than 80% of the skin is red (erythroderma). The lymph nodes may or may not be affected.

  • Stage 4A

    There may be any of the skin symptoms described in the previous stages. Abnormal lymphocytes have spread to the lymph nodes or the blood.

  • Stage 4B

    There may be any of the skin symptoms described in the previous stages. Abnormal lymphocytes have spread to the lymph nodes or the blood. The lymphoma has spread to other organs in the body, such as the liver, lungs or bone marrow.

Treatment for cutaneous T-cell lymphoma (CTCL)

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

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

Doctors usually use treatments to treat the skin directly when CTCL is at an early stage. These include creams, light therapy and radiotherapy.

Sometimes treatments that work throughout the body are used. These treatments may be given as tablets, or as an injection into a vein or under the skin.

We have more information about treatment for cutaneous T-cell lymphoma.

After cutaneous T-cell lymphoma (CTCL) treatment

You have regular follow-up appointments after treatment. These appointments are a good opportunity for you to talk to your doctor or nurse about any concerns you have. Your doctor will want to know how you are feeling generally, and to check you are recovering from any side effects of treatment.

Late effects

Sometimes a side effect may continue or develop months or years after treatment. This is called a late effect.

We have more information about long-term and late effects of treatment for lymphoma.

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.

The organisations below also offer information and support:

  • Bloodwise

    Bloodwise offers support and information to people affected by blood cancers, including lymphoma.

  • Changing Faces

    Changing Faces provides free help, support, and information for people with a facial disfigurement. Runs a service providing individual teaching sessions on how to use camouflage make-up.

  • Let's Face It

    Let’s Face It provides support, information, social activities and advice on camouflage make-up for people with facial disfigurement.

  • Lymphoma Action

    Lymphoma Action gives emotional support, advice and information on all aspects of Hodgkin lymphoma and non-Hodgkin lymphoma. It has a national network of people with lymphoma, and local groups.

 

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.

How we can help

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