Follow up for chronic lymphocytic leukaemia (CLL)

You usually have follow up appointments to check how you are and see whether you have any problems or worries. The appointments also give you the chance to raise any concerns you have about your progress.

As CLL is a long term (chronic) condition you work together with your healthcare team to make decisions about your care.

How often you have appointments depends on if you:

• are having treatment for CLL

• have had treatment for CLL recently

• how you’re feeling

In some cases, your GP will lead the care of your CLL. This might be the case if, for example, you are diagnosed during a routine blood test for something else. In this case, your GP will let you know if you need to see a hospital doctor.

Watch and wait

The amount of time you wait before starting treatment for CLL varies. CLL can change and develop at different speeds. And this varies for each person. Your doctor will talk to you about what might happen. 

Some people can wait for a very long time before they need treatment, sometimes years. And some people never need to have any treatment. 

What happens?

Your doctor or nurse examines you at each appointment. They ask how you are feeling, whether you have had any symptoms or side effects, and if you are worried about anything. You might also have tests at some visits.

You might have:

• blood tests
• a bone marrow test

How often do I have check ups?

How often you see your specialist depends on:

• whether you are having treatment
• how you are feeling
• the stage of your CLL

You need to see your doctor regularly, maybe weekly or monthly, if you are having treatment.

If you are not having any treatment, you see your doctor less often. The time between check ups will gradually get longer if everything is going well. You might only need to see your doctor once a year if your leukaemia is very stable. 

Where you go for your follow up

You usually go to the haematology or cancer clinic if you have had targeted drugs, immunotherapy or chemotherapy. 

Contact your doctor or specialist nurse if you have any concerns. You should also contact them if you notice any new symptoms between appointments. You don’t have to wait until your next visit.

You might see your GP at your GP surgery if they are looking after your care.

If you are worried

Some people find that a watch and wait approach makes them anxious. It can be particularly worrying in the run up to check up appointments. But other people feel relieved that they don't need treatment just yet. And they feel able to carry on with work or carry on with other plans.

If you are feeling anxious about CLL, or your treatment, it can help to tell someone close to you how you’re feeling. Sharing your worries can mean they don’t seem so overwhelming. Many people find it helpful to have counselling during or after cancer treatment.

You can also find people to share experiences with by using our online forum, Cancer Chat.