Cutaneous T-cell lymphoma (CTCL)
Cutaneous T-cell lymphoma is a type of non-Hodgkin lymphoma of the skin (cutaneous means skin).
We hope this information answers your questions. If you have any further questions, you can ask your doctor or nurse at the hospital where you are having treatment.
Non-Hodgkin lymphoma is a cancer of the lymphatic system. This is part of the body’s immune system and helps us fight infection.
It's made up of organs such as the bone marrow, thymus, spleen and the lymph nodes (or lymph glands). Lymph nodes are connected by a network of tiny lymphatic vessels that contain lymph fluid.
There is also lymphatic tissue in other organs, such as the skin, lungs and stomach.
There are lymph nodes all over the body. As lymph fluid flows through the lymph nodes, the nodes help to collect and filter out anything harmful or anything that the body doesn't need. This includes bacteria, viruses, damaged cells and cancer cells.
Lymph fluid contains lymphocytes. Lymphocytes are a type of white blood cell that help the body fight infection and disease. They are made and start to grow in the bone marrow. The two main types of lymphocyte are B-cells and T-cells. B-cells mature in the bone marrow, while T-cells mature in the thymus gland behind the breastbone. When they're mature, both B-cells and T-cells help fight infections.
Lymphoma is a disease in which either T-cells or B-cells grow in an uncontrolled way.
There are many different types of non-Hodgkin lymphomas. They're grouped (or classified) according to certain characteristics, such as the type of cell involved (B-cells or T-cells) and what it looks like under a microscope. The most widely used classification system is produced by the World Health Organisation.
Cutaneous T-cell lymphoma (CTCL)
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CTCL is rare and usually affects people aged 40-60. It's caused by T-cells in the skin growing in an uncontrolled way. CTCL is more common in men than in women. There are different types of CTCL:
Mycosis fungoides (MF)
This is the most common type of CTCL. It is a very slow growing form of lymphoma and usually only affects the skin. Treatments can often keep it under control for many years.
There are different stages of MF, but, it doesn't have to progress from one to the other. Over time, in a small number of people, it may spread to other parts of the body.
In this type of CTCL, there are abnormal lymphocytes in the blood and large areas of the skin are affected with redness (erythroderma) and scaling. The skin can be very itchy and may look thicker in parts. The lymph nodes may be swollen.
The causes of CTCL are unknown. Like other cancers, it’s not infectious and can't be passed on to other people.
In the very early stage, CTCL can look like other skin conditions such as eczema or psoriasis, which can make it difficult to diagnose.
CTCL may cause changes in the skin including:
red, rash-like patches
itchy, sometimes painful, areas
raised patches (plaques)
Some people with CTCL have swollen lymph nodes.
Your doctor will check your skin and take a small sample from an area of affected skin. This is called a skin biopsy. The sample is examined under a microscope for abnormal cells.
The doctor will check your lymph nodes for swelling. You will also have blood tests to check for abnormal lymphocytes in your blood.
Some people have a CT (computerised tomography) scan or an MRI (magnetic resonance imaging) scan done. These give a picture of lymph nodes and organs inside your body. A scan may be done to check that the lymphoma hasn't spread.
If your lymph nodes are swollen, you may have a lymph node biopsy. This involves a small operation. The doctor will remove an enlarged lymph node so that it can be examined under a microscope.
A small number of people have a bone marrow biopsy. This can be done in the outpatient department. You will lie on your side and a doctor will inject a local anaesthetic into the skin over the back of your hip bone to numb it. They then use a specially designed needle to take a small amount of marrow (biopsy) from your hip bone. The sample is sent to a laboratory to be looked at under a microscope.
Our general information about non-Hodgkin lymphoma explains these tests in more detail.
The stage of CTCL describes how much of the skin is affected and whether it has spread anywhere else.
CTCL usually develops very slowly. The symptoms can remain the same for many years and most people never progress beyond the first stage. Occasionally, some people don't experience the early stages of CTCL and their first symptoms may be tumours (raised lumps) on the skin.
There are red patches and/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 surface is affected.
Skin symptoms are the same as in stage 1. Some lymph nodes are enlarged, but the lymphoma cells have not spread there.
There may be one or more tumours on the skin. 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. The lymphoma has spread to other organs in the body such as the liver. Lymphoma cells may or may not have spread to the lymph nodes and/or blood.
There are a number of treatments that can be used for CTCL. Sometimes a combination of treatments is used. Your specialist will discuss the options with you.
Doctors usually use treatments to treat the skin directly when CTCL is at an early stage. This includes using:
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 absorbed into the blood and travel to all areas of the body. Your doctors may offer you these treatments if:
CTCL doesn’t respond to direct skin treatments
it is affecting the lymph nodes or other organs
there are a lot of tumours on the skin.
Skin care is important for all stages of CTCL. Using moisturising creams regularly will help to make your skin less scaly and to feel more comfortable. Other preparations can be added to your bath water to keep your skin supple. Your specialist nurse and doctor can give you more advice on looking after your skin.
Creams for the skin (topical treatments)
Steroid cream applied to the skin may be the only treatment needed for early stage CTCL.
Chemotherapy creams may be used. Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. It can be given as a cream that can be applied to the affected skin. You'll need to make sure you only put the cream on the area where you've been told to apply it, and you must wear gloves to protect your hands. Some people may have a reaction to the cream. Let your doctor know if you have any side effects, such as redness or a burning sensation, in the area.
Your doctor, a nurse or a pharmacist will explain how to use these creams. It's important to follow the instructions they give you.
PUVA (sometimes known as photochemotherapy) is an effective treatment for early CTCL, especially for treating plaques (raised red patches). It involves taking a drug called psoralen (P), which makes your skin sensitive to ultraviolet light (UVA).
Once the drug has had time to collect in your skin, you go into an enclosed, air-conditioned cabinet to have the ultraviolet light treatment.
You may have this done a few times a week over several weeks.
Side effects of PUVA
This treatment tans the skin and can cause early ageing of the skin. Sometimes the skin may become red, like mild sunburn. Over the period of your treatment, you'll need to be careful not to expose your skin to extra ultraviolet light from the sun to avoid getting sunburnt.
Exposure to ultraviolet light can increase the risk of developing other types of skin cancer. The number of treatments you have with PUVA is limited to reduce the risk of this happening, and your skin is carefully monitored. Your doctor or specialist nurse can discuss this with you. We have more information on taking care of your skin in the sun.
Psoralen makes the eyes more sensitive to ultraviolet light, so you will need to wear protective glasses for about 12 hours from the time you take the drug. The psoralen tablets can make you feel sick. If this happens, you can take anti-sickness drugs, or it may be possible to be prescribed a different tablet.
Other possible side effects of PUVA include itching, dizziness and headaches.
UVB light (ultraviolet light from wavelength B) can help slow down the growth of skin cells and may be used to treat CTCL. The treatment is delivered in a similar way to PUVA, using an air-conditioned cabinet containing ultraviolet lights. However, you don’t need to take a drug to make your skin more sensitive to light. Treatment may be given a few times a week.
Side effects of UVB therapy
UVB therapy causes similar skin side effects to PUVA.
Because ultraviolet light increases the risk of other types of skin cancer, you will also need to avoid exposing the skin to extra UV light from the sun. Your doctor or specialist nurse will discuss this with you.
Radiotherapy is the use of high-energy rays to destroy cancer cells. It's an effective treatment for early CTCL. Radiotherapy can also be used to ease skin symptoms in specific areas affected by CTCL. The side effects are redness of the skin and hair loss in the area being treated.
Total skin electron beam therapy (TSEBT)
TSEBT is a way of treating all of the skin with radiotherapy. It may be used if the disease hasn’t spread below the skin surface and other treatments directed to the skin haven’t been effective. The treatment can be repeated if necessary. It's only available at some specialist centres.
The side effects are mainly skin changes and hair loss. Sweat glands in treated areas may no longer work. Your doctor can give you more information about this treatment and its effects.
If CTCL is causing a lot of tumours on the skin, affecting the lymph nodes or other organs, or is not responding to other treatments, chemotherapy by injection into a vein, or as a tablet, may be given to help control it. You may be given a single drug or a combination of drugs. Chemotherapy drugs that may be used are gemcitabine, pentostatin or liposomal doxorubicin.
Interferon is a protein that occurs naturally in the body. A man-made version may be used to treat CTCL. It works by boosting the body’s immune system to control the lymphoma. It is injected under the skin (subcutaneously) and may be given on its own or with other treatments. The most common side effects of interferon are tiredness, aches and pains, fever and a low mood.
Bexarotene (Targretin ®) belongs to a group of drugs called retinoids. It may be used to treat CTCL that has come back after treatment. It is taken daily as a capsule and may be used with other treatments such as PUVA. Bexarotene can affect the fats in the blood and prevent the thyroid gland from working properly. You will be given other medicines with bexarotene to manage these side effects. You will need to have regular blood tests when you start the treatment.
Extra-corporeal photopheresis (ECP)
ECP may be used if there are abnormal lymphocytes in the blood. ECP is a type of PUVA treatment for the blood. It treats the whole body.
You are connected to a machine and some of your blood goes from your body into the machine. The blood is treated with ultraviolet light and drugs that become active when exposed to light. The treated blood is then returned to the body. The treatment continues until all of your blood has been treated by passing through the machine. This treatment is only available in some specialist centres. Your doctor or nurse will give you more information about the treatment.
Clinical trials for CTCL
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New treatments for CTCL are being researched all the time.
Your doctor must discuss the treatment with you, and have your informed consent before entering you into a trial.
Before any trial is allowed to take place, it must be approved by a research ethics committee, which protects the interests of those taking part.
You may decide not to take part or to withdraw from the trial at any stage. You will then receive the best standard treatment available.
Everyone has their own way of dealing with their illness and the different emotions they experience. Some people find it helpful to talk about things with family and friends, or their doctor or nurse. You can also contact our cancer support specialists or the organisations listed below for more information and support.
Other useful organisations
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Having a visible skin condition that affects how you look can be very distressing. You may find support from the following organisations helpful in dealing with any changes to your appearance.
British Red Cross
The British Red Cross offers a special service providing camouflage makeup and individual teaching sessions.
Changing Faces provides free help, support, and information for people with a facial disfigurement.
Let’s Face It
Let's Face It provides support, information, social activities and advice on camouflage makeup for people with facial disfigurement.
Leukaemia CARE is a national group promoting the welfare of people with leukaemia and other blood disorders, including non-Hodgkin lymphoma. Has regional support groups in many counties.
The Lymphoma Association
The Lymphoma Association gives emotional support, advice and information on all aspects of Hodgkin lymphoma and non-Hodgkin lymphoma. Has a national network of people with lymphoma and has local groups.
This section has been compiled using information from a number of reliable sources, including:
BMJ best practice: Cutaneous T-Cell Lymphoma (accessed March 2014).
Primary cutaneous lymphomas: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow up. Annals of Oncology. 2010. 21 (5): 177-180. 2010. 21 (5): 177-180.
Edge SB, et al. AJCC Cancer Staging Manual. 7th edition. 2010. New York: Springer.
Guidelines for the Management of Primary Cutaneous T-cell Lymphoma. British Journal of Dermatology. July 2003. 149: 1095-1107.July 2003. 149: 1095-1107.
Thanks to Professor Rajnish Gupta, Consultant Medical Oncologist, and the people affected by cancer who reviewed this edition. Reviewing information is just one of the ways you could help when you join our Cancer Voices network.
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