Cutaneous T-cell lymphoma (CTCL)
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- What is cutaneous T-cell lymphoma (CTCL)?
- Symptoms of cutaneous T-cell lymphoma (CTCL)
- Causes of cutaneous T-cell lymphoma (CTCL)
- Diagnosis of cutaneous T-cell lymphoma (CTCL)
- Stages of cutaneous T-cell lymphoma (CTCL)
- Treatment for cutaneous T-cell lymphoma (CTCL)
- After cutaneous T-cell lymphoma (CTCL) treatment
- About our information
- How we can help
Cutaneous T-cell lymphoma (CTCL) is a type of skin lymphoma. It is a rare type of non-Hodgkin lymphoma. It develops when cells called T-cells (also called T-lymphocytes) become abnormal. T-cells are white blood cells that fight infection. They are part of our immune system.
There are different types of CTCL. The most common are called mycosis fungoides and Sézary syndrome.
This is the most common type of CTCL. Mycosis fungoides is usually a very slow-growing type of lymphoma that often only affects the skin.
For most people, Mycosis fungoides will develop slowly or stay under control for many years. In a small number of people, Mycosis fungoides may spread to other parts of the body over time.
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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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)
Some people with CTCL have lumps where a lymph node is swollen.
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.
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.
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:
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.
There may be one or more tumours on the skin that are greater than 1cm. The lymph nodes may or may not be affected.
More than 80% of the skin is red (erythroderma). The lymph nodes may or may not be affected.
There may be any of the skin symptoms described in the previous stages. Abnormal lymphocytes have spread to the lymph nodes or the blood.
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.
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.
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.
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.
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:
The organisations below also offer information and support:
Blood Cancer UK
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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 firstname.lastname@example.org
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. 2013. 24 (Supplement 6), vi149–vi154. Available from: www.annalsofoncology.org/article/S0923-7534(19)31554-6/pdf.
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, Professor Rajnish Gupta, Macmillan Consultant Medical Oncologist.
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.