Cutaneous T-cell lymphoma (CTCL)

What is 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

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.

Sézary syndrome

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.

Symptoms of cutaneous T-cell lymphoma (CTCL)

In the early stages, cutaneous T-cell lymphoma (CTCL) can look like other more common skin conditions, such as eczema or psoriasis. This may mean it takes some time to diagnose.

CTCL may cause skin changes, including:

flat 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 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.

Diagnosis of cutaneous T-cell lymphoma (CTCL)

The most common test for diagnosing cutaneous T-cell lymphoma (CTCL) is a biopsy. A doctor will take a sample of tissue from an affected area of skin.

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. You may find it helpful to talk to your family, friends or specialist nurse.

Stages of cutaneous T-cell lymphoma (CTCL)

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:

Stage 1
There are red 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 in size. 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)

Doctors usually use treatments to treat the skin directly when cutaneous T-cell lymphoma (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. They are then carried in the blood to all areas of the body.

We have more detailed information about how these treatments are used for cutaneous T-cell lymphoma.

After cutaneous T-cell lymphoma (CTCL) treatment

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 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 is also here to support you. 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 T-cell lymphomas forum to talk with people who have been affected by T-cell 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.
Changing Faces

Changing Faces provides free help, support, and information for people with visible differences on their face or body. The charity runs individual teaching sessions on using 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 disfigurements.
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 cutaneous T-cell lymphoma (CTCL) information. If you would like more information about the sources we use, please contact us at cancerinformationteam@macmillan.org.uk

Willemze R, Hodak E, et al on behalf of the ESMO Guidelines Working Group. Primary cutaneous lymphomas: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Annals of Oncology. 2018. 29 (Supplement 6), IV30-IV40. Available from Primary cutaneous lymphomas: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up - Annals of Oncology.

National Institute of Health and Care Excellence (NICE). Blood and bone marrow cancers. NICE Pathways. Last accessed 3 December 2020.

National Institute of Health and Care Excellence (NICE).Brentuximab vedotin for treating CD30-positive cutaneous T-cell lymphoma (CTCL). Technology appraisal guidance (TA577). Published April 2019. Available at Overview | Brentuximab vedotin for treating CD30-positive cutaneous T-cell lymphoma | Guidance | NICE.

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.