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People say that when you get diagnosed with blood cancer it's like learning a new language. Here we explain the medical language around T-cell lymphoma and how the different types can affect you.

T cells and NK cells

Lymphoma is a type of blood cancer that usually affects white blood cells called B lymphocytes, or B cells.

More rarely, lymphoma can affect white blood cells called T cells, and some affect white blood cells called natural killer cells, or NK cells. Doctors usually class NK-cell and T-cell lymphomas as a group, separate from the more common B-cell lymphomas.

There are several types of T-cell lymphoma. Around 500 people are diagnosed in the UK each year, across all types. Individually, each type is very rare.

The emotional impact

It’s never easy to hear you have blood cancer. You may feel a range of emotions at different times, but a lot of people say they feel isolated, especially if the diagnosis is very rare.

It may help to talk to other people living with blood cancer, including people with rare types. You can connect with some of them on our online community forum.

You can also call our Support Line on 0808 2080 888 to speak to one of our experienced nurses. Or email [email protected] if you prefer.

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Explaining some terms

Here are some medical terms you may hear if you are diagnosed with a type of T-cell lymphoma:

You may hear this group of blood cancers described as peripheral T-cell lymphoma or mature T-cell lymphoma. These medical names mean that fully grown blood cells circulating in the lymphatic system are affected, rather than undeveloped cells in the bone marrow.

Some types of T-cell lymphoma are described as nodal. Nodal means that the lymphoma develops in one or more lymph nodes, commonly known as glands. There are lymph nodes in many places around your body and any of them could be affected.

Some types of T-cell lymphoma are extra nodal. Here, extra means outside. In extra nodal disease, the lymphoma develops outside the lymph nodes, affecting any organ in the body, especially the liver or gut.

There are two main types of lymphoma: Hodgkin lymphoma and non-Hodgkin lymphoma (NHL). T-cell lymphomas are all types of non-Hodgkin lymphoma.

Types of T-cell lymphoma

Different types of T-cell lymphoma have different effects on the body.

Adult T-cell leukaemia/lymphoma (ATLL)

ATLL can affect your T-cells in your blood (leukaemia) or your lymph nodes (lymphoma). It is caused by a virus called HTLV-1 which is common in Japan, the Caribbean and some parts of Africa.

There are four types of ATLL: acute leukaemic, lymphoma type, chronic and smouldering. Acute leukaemic and lymphoma type are fast growing, and chronic and smouldering are slower growing.

Angioimmunoblastic T-cell lymphoma (AITL)

AITL affects your lymph nodes (glands) and sometimes your spleen, an organ that’s part of your lymphatic system. It may also affect other organs in your body, such as your bone marrow, where blood cells are made, or your liver.

Anaplastic large cell lymphoma (ALCL)

ALCL can affect your lymph nodes, or it can be extra nodal, affecting any organ in your body.

There is a specific gene that doctors test for if they think you have ALCL. This is called anaplastic lymphoma kinase (ALK). So you may be told you have either ALK+ (positive) or ALK- (negative) ALCL.

Very rarely, breast implants can cause a type of ALCL.

There is a separate type of ALCL that affects the skin, called cutaneous ALCL. Lymphoma Action has more information about skin lymphoma.

Extranodal NK/T-cell lymphoma, nasal type

Extranodal NK/T-cell lymphoma usually affects your nose, sinuses and the top part of your throat, but it can affect other areas such as your skin and gut.

This type of T-cell lymphoma is linked to the Epstein-Barr virus (EBV), the virus that causes glandular fever. It is rare for someone who has had glandular fever to develop lymphoma.

Intestinal T-cell lymphoma (EATL and MEITL)

Some types of T-cell lymphoma affect your gut (your small or large intestine). This can be linked to coeliac disease, where gluten - the protein in wheat and barley - causes the immune system to attack its own gut cells.

Enteropathy-associated T-cell lymphoma (EATL) and monomorphic epitheliotropic intestinal T-cell lymphoma (MEITL) are types of intestinal T-cell lymphoma.

Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS)

This is the most common type of T-cell lymphoma. “Not otherwise specified” means that tests have ruled out other types of T-cell lymphoma.

PTCL-NOS is usually nodal, affecting one or more lymph nodes (glands), but it can also affect organs like the spleen, liver, skin or gut.

You may get a diagnosis of follicular T-cell lymphoma or nodal peripheral lymphoma with TFH. These are specific types of T-cell lymphoma which have recently been added to the World Health Organisation’s classification of blood cancers, but are currently treated the same way as PTCL-NOS.

The prognosis for T-cell lymphoma

Generally, the prognosis for T-cell lymphoma (what is likely to happen in the future) will depend on things that are personal to you. These include:

  • the type of T-cell lymphoma you have
  • whether it is fast growing or slow growing (chronic)
  • your age and general level of fitness
  • where the lymphoma is in your body
  • your test results.

Your doctor may use some of this information to work out a risk score. This helps them decide how best to treat you. They should talk through what your risk score means for you.

Remember that prognosis information varies from person to person, and things you read online may not be true for you. Speak to your hospital team about your personal prognosis. If you would like to talk through what questions to ask, contact our Support Service.

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Contact our support services team

Our team of nurses and trained staff offer support and information to anyone affected by or worried about blood cancer. Contact them by phone, email, or on our Community Forum.

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