Follow up for hairy cell leukaemia

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.

Treatment for hairy cell leukaemia works very well. But doctors are usually trying to control the leukaemia rather than cure it. 

There is a possibility that the leukaemia could come back. This can  happen after a long period when there has been no sign of the leukaemia (remission).  So you have regular check ups. These continue for some years, and possibly for the rest of your life.

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.

Tests might include a:

  • blood test
  • bone marrow test

Let your team know straight away if you are worried or if you notice any new symptoms between appointments. You don't have to wait until the next appointment.

How often you have check ups

You might have follow up appointments regularly at first, then:

  • every 3 to 6 months if you stay well
  • once a year after a couple of years if you stay well

Coping with worry

Many people find their check ups quite worrying. If you are well and getting on with your life it can bring back all the worry 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 after cancer treatment.

You can call Cancer Research UK's information nurses on freephone 0808 800 4040 to talk through follow up appointments. Lines are open 9am to 5pm, Monday to Friday.

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