Primary CNS lymphoma

Primary CNS lymphoma (PCNSL) may cause different symptoms, depending on:

• where the tumour is in the brain or spinal cord
• how quickly it grows.

Possible symptoms can include:

• Behaviour or personality changes. These are common in primary CNS lymphoma, but changes are often slight to start with and may only be noticed by close family or friends.
• Finding it difficult to remember things. Problems with concentration or making decisions.
• Numbness, tingling or weakness. This may include numbness or weakness on one side of the body, or tingling and weakness in an arm or leg.
• Speech problems – difficulties with finding words or forming sentences.
• Changes in balance or movement. If your balance and co-ordination are affected, walking may be more difficult.
• Fits (seizures).
• Problems with eyesight, such as blurred vision or blind spots. These can happen if the lymphoma starts in or near the eye or in the part of the brain that controls your vision.
• Headaches and vomiting. Sometimes the lymphoma can increase the pressure in the skull. This may happen because of swelling or blockages caused by the tumour.

We have more information about these and other symptoms of brain tumours.

The most common tests for diagnosing primary CNS lymphoma (PCNSL) are:

• a brain scan (MRI scan) 
• a biopsy.

A biopsy is when the surgeon removes a piece of the tumour from the affected area. The tissue will be sent to a laboratory for testing.

There are different ways to take a brain biopsy. Your surgeon can explain more about biopsies.

We have more information about diagnosing brain tumours.

You may also have tests to check for signs of lymphoma in other parts of your body. These may include:

• blood tests
• a CT scan 
• a PET-CT scan 
• a lumbar puncture 
• bone marrow samples
• eye tests
• an ultrasound scan of the testicles.

Your doctor will usually ask you if they can take a blood sample to check for HIV and other infections such as hepatitis B and C. They can plan safer and more effective treatment for you when they know if you have these infections.

You will not be allowed to drive from the time of your diagnosis until at least 2 years after your treatment has ended.

If you do drive, this change may be upsetting and frustrating. But it is a legal requirement. It is important to follow the advice you are given.

If you live in England, Scotland or Wales, you must contact the Driver and Vehicle Licensing Agency (DVLA) to tell them about your illness. If you live in Northern Ireland, contact the Driver and Vehicle Agency (DVA).

People often have many different feelings when they finish lymphoma treatment. You may feel relieved that treatment has finished, but worried about what will happen in the future. 

You will have appointments with your lymphoma doctor or nurse less often than before. But at the same time, you may have new challenges to cope with and things to think about. 

We have information below about some of the things people ask about after lymphoma treatment. But you may have other questions or need information about something else. If there is something you want to talk about at any point after treatment, you can:

• call the Macmillan Support Line free on 0808 808 00 00
• chat to our specialists online
• visit our Online Community to talk to people who have been affected by lymphoma, share your experience, and ask an expert your questions.

The organisations below also offer information and support:

You may have some ongoing side effects as you recover from lymphoma treatment. You can use our impacts of cancer A-Z to search for information about managing different symptoms and side effects. Or find out more about side effects of treatment for Hodgkin lymphoma or treatment for non-Hodgkin lymphoma.

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.

It can take time to recover after lymphoma treatment. Some days you may feel better than others. 

It is important to know where to get support or information if you need it. People often need support even some time after lymphoma treatment. But sometimes it is difficult to know who to ask for help. To find support:

• ask your GP or someone from your cancer team for advice about support in your area
• search cancercaremap.org to find cancer support services near you
• call us free on 0808 808 0000 or talk to us online - our cancer information and support specialists can offer guidance and help you find what you need. 

Our course Help to Overcome Problems Effectively (HOPE) helps people during and after cancer treatment. It is a free, interactive, group based, self management support course. It runs for 6 weeks, with each weekly session lasting 2.5 hours. To find out more about HOPE courses in your area, email ServiceOpsSupport@macmillan.org.uk

A healthy lifestyle can help speed up your recovery. Even small lifestyle changes may improve your well-being and long-term health.

Other useful information

• Just been diagnosed?
• Physical impacts of cancer and treatment
• Help with money and work
• Cancer and your emotions
• Trouble sleeping
• Tiredness (fatigue)
• Uncertainty
• Walking (mobility) problems
• Coping with pain