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.

What happens?

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

You might have:

• blood tests
• a bone marrow test

How often you 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, chemotherapy or radiotherapy. 

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.

If you are worried

Many people find their check ups quite worrying. A hospital appointment can bring back anxiety about your cancer.

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 and after cancer treatment.