Peripheral T-cell lymphoma, not otherwise specified (PTCL-NOS)
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What is peripheral T-cell lymphoma, not otherwise specified?
Peripheral T-cell lymphomas (PTCLs) are a group of rare blood cancers. They are a type of non-Hodgkin lymphoma (NHL).
PTCLs develop when blood cells called T-cell lymphocytes become abnormal. These blood cells normally help fight infection.
The abnormal T-cells usually build up in lymph nodes, but they can affect other parts of the body.
There are different types of PTCL. Doctors group similar types together. A PTCL that does not fit into one of these groups is called a peripheral T-cell lymphoma, not otherwise specified (PTCL-NOS). The lymphomas in this group are not all the same. But they develop in a similar way and are treated in the same way.
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Booklets and resources
Symptoms of PTCL-NOS
The most common symptom of lymphoma is a painless swelling or lump in the neck, armpit or at the top of the leg (groin). This is caused by abnormal cells building up in the lymph nodes.
PTCL-NOS may also affect parts of the body outside the lymph nodes. The symptoms depend on the area affected. You can find out more in our general information about lymphoma symptoms.
B symptoms
PTCL-NOS may also cause the following 3 symptoms:
- drenching night sweats
- unexplained high temperatures
- unexplained weight loss.
These are called B symptoms. Along with staging and grading (below), B symptoms can help your cancer team understand:
- how the lymphoma might develop
- which treatments might help.
Worried about symptoms?
A change in how you feel or how your body works can be caused by conditions other than PTCL-NOS. But always ask your GP to check any ongoing, new or unexplained symptoms.
We are also here if you need someone to talk to. You can:
- call the Macmillan Support Line free on 0808 808 00 00
- chat to our specialists online.
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Causes of PTCL-NOS
The causes of peripheral T-cell lymphomas are mostly unknown. We have more general information about causes and risk factors of non-Hodgkin lymphoma.
PTCL-NOS usually affects people in their 60s. But it can occur at any age. It is more common in men than women.
Like other cancers, PTCL-NOS is not infectious. You cannot spread it to other people.
Diagnosis of PTCL-NOS
If you have symptoms that worry you, you should begin by going to your GP. They will examine you. If they think cancer may be causing your symptoms, they will refer you to a specialist doctor at a hospital.
The most important test for diagnosing lymphoma is a biopsy. This means testing a small piece of tissue or a sample of cells from an affected area of your body.
Find out more about having a biopsy and other tests in our general lymphoma information.
Waiting for test results
Waiting for test results can be a difficult time. It may take up to 2 weeks for the results to be ready.
You may find it helpful to talk with your partner, your family or a close friend. Your specialist nurse can also provide support.
You can talk to one of our cancer support specialists for free on 0808 808 00 00, 7 days a week, 8am to 8pm.
Related pages
Booklets and resources
Staging and grading of PTCL-NOS
Your test results give your cancer team more information about the lymphoma. This includes:
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The stage
Staging describes how many areas of the body are affected by lymphoma and where these areas are.
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The grade
Grading describes how quickly the lymphoma cells are likely to grow. PTCL-NOS is a high grade lymphoma. High grade lymphoma grows more quickly and needs urgent treatment.
Knowing the stage and grade of the lymphoma helps your cancer team plan the right treatment for you.
We have more information about staging and grading non-Hodgkin lymphoma.
Treatment for PTCL-NOS
A team of specialists will meet to discuss the best possible treatment for you. They are called a multidisciplinary team (MDT).
After the MDT meeting, you will usually meet with your cancer doctor and specialist nurse. They will explain the different treatment options and possible side effects. They will also talk to you about things to consider when making treatment decisions.
Your treatment options will depend on:
- the stage of the lymphoma
- your general health
- your preferences.
The aim of treatment is to control the lymphoma for as long as possible. This is called remission.
You may have some treatments as part of a clinical trial.
Treatments for PTCL-NOS include:
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Cancer drug treatments
Treatment for PTCL-NOS usually involves a combination of chemotherapy drugs and steroids. For example:
Some people only have steroids. This is usually if they are not well enough to cope with chemotherapy. Some people have other types of cancer drug, such as targeted therapy drugs. But this is usually as part of a clinical trial.
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Radiotherapy
Radiotherapy uses high-energy rays called radiation to treat cancer. It destroys cancer cells in the area you have it.
Some people have radiotherapy after cancer drug treatment to treat an area of lymphoma. This can treat any remaining lymphoma cells in the area. It can also reduce the risk of lymphoma coming back in that area.
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Stem cell transplant
Stem cell transplants are sometimes used to treat PTCL-NOS. Stem cell transplants are intensive treatments, so they are not suitable for everyone. They may be used to help keep PTCL-NOS in remission after cancer drug treatment.
Further treatment
Treatments aim to make all signs of the lymphoma disappear. This is called remission.
Sometimes PTCL-NOS comes back after treatment. This is called a relapse or recurrence.
If this happens, your cancer team will talk to you about further treatment options. Further treatment is unlikely to cure the lymphoma, but it may help control it for a time.
After PTCL-NOS treatment
Follow-up after treatment for PTCL-NOS
You will have regular check-ups during and after your treatment. Your cancer doctor or specialist nurse will explain what to expect.
Follow-up appointments are a good time for you to talk to your cancer doctor or specialist nurse about any concerns you have. Tell them as soon as possible if you have any problems or notice new symptoms between appointments. We have more information about follow-up care after treatment.
Sometimes side effects may continue or develop months or years after treatment. These are called late effects. We have more information about late effects of lymphoma treatment.
Wellbeing and recovery
Looking after yourself can help speed up your recovery after DLBCL treatment. Even small lifestyle changes may improve your wellbeing and long term health.
Even if you already have a healthy lifestyle, you may choose to make some positive changes after treatment. We have more information on leading a healthy lifestyle after treatment.
Support for people with PTCL-NOS
People often have many different feelings during and after PTCL-NOS treatment. If you have finished treatment, you may feel relieved it has ended but worried about what might happen in the future.
It is important to know where to get support or information if you need it. People often need support even some time after PTCL-NOS treatment. But sometimes it is difficult to know who to ask for help.
You can:
- ask your GP or someone from your cancer team for advice about support in your area
- find cancer support services near you
- call the Macmillan Support Line for free on 0808 808 00 00.
- chat to our cancer information specialists online.
- visit our non-Hodgkin lymphoma forum to talk to people who have been affected by lymphoma, share your experience, and ask your questions.
You may also find the HOPE programme helpful. The programme is a free 6 week self-management course designed to help you develop techniques and strategies when living with or after cancer. Topics include goal setting, fatigue management, and wellbeing.
You can sign up for the online HOPE programme. Or to find out more about face to face programmes in your area, email ServiceOpsSupport@macmillan.org.uk
More information and advice
We know cancer can affect you physically, emotionally and financially. We have information and advice about different ways cancer might impact you, such as help with:
About our information
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.
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References
Below is a sample of the sources used in our lymphoma information. If you would like more information about the sources we use, please contact us at informationproductionteam@macmillan.org.uk
Cwynarski K, Marzolini MAV, Barrington SF, et al. The management of primary mediastinal B-cell lymphoma: a British Society for Haematology Good Practice Paper. Br J Haematol. 2019;185:402-9.
Eyre TA, Bishton MJ, McCulloch R, et al. Diagnosis and management of mantle cell lymphoma: A British Society for Haematology Guideline. Br J Haematol. 2024;204(1):108–26.
Ferreri AJM, Illerhaus G, Doorduijn K, et al., on behalf of the EHA and ESMO Guidelines Committees. Primary central nervous system lymphomas: EHA–ESMO Clinical Practice Guideline for diagnosis, treatment and follow-up. Ann Oncol. 2024;35(6):491-507.
Fox CP, Ahearne MJ, Pettengell R, et al. Guidelines for the management of mature T- and natural killer-cell lymphomas (excluding cutaneous T-cell lymphoma): a British Society for Haematology Guideline. Br J Haematol. 2022;196:507-22.
Fox CP, Chaganti S, McIlroy G, et al. The management of newly diagnosed large B-cell lymphoma: A British Society for Haematology Guideline. Br J Haematol. 2024;204(4):1178–92.
McNamara C, Montoto S, Eyre TA, et al. The investigation and management of follicular lymphoma. Br J Haematol. 2020;191:363-81.
Pratt G, El-Sharkawi D, Kothari J, et al. Diagnosis and management of Waldenström macroglobulinaemia—A British Society for Haematology guideline. Br J Haematol. 2022;197:171–87.
Walewska R, Eyre TA, Barrington S, et al. Guideline for the diagnosis and management of marginal zone lymphomas: A British Society of Haematology Guideline. Br J Haematol. 2024;204(1):86–107.
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