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Follow up after hairy cell leukaemia

Men and women discussing hairy cell leukaemia

This page tells you about follow up appointments for hairy cell leukaemia. You can find out about

 

A quick guide to what's on this page

Follow up for hairy cell leukaemia

Even after a long period where there is no sign of the leukaemia (remission) there is a possibility that it could return. Because of this your doctor will arrange for you to have regular check ups. These will continue for some years, and possibly for life.

How often you will have check ups

If you are not having any treatment, you will usually only need to see the doctor every 3 to 6 months. If you are having treatment, you will need to see your doctor more often. If you stay well, after a couple of years you may only need to go once a year.

What will happen during your check ups

You will have blood tests and your doctor will want to know how you are feeling. You may have a physical examination as well. If you are worried, or notice any new symptoms between appointments, let your doctor or nurse know straight away. You don't have to wait until the next appointment.

Coping with worry

Many people worry about going for their check ups. They can bring back all the worry about your cancer. You may find it helpful to tell someone close to you about how you are feeling.

It is quite common for people to have counselling after cancer treatment. To find out more about counselling, look in the coping with cancer section.

 

CR PDF Icon You can view and print the quick guides for all the pages in the Treating hairy cell leukaemia section.

 

 

Why you need check ups

Although treatment for hairy cell leukaemia works very well, doctors are usually trying to control the leukaemia rather than cure it. Even after a long period where there is no sign of the leukaemia (remission) there is a possibility that the leukaemia could return. So your doctor will arrange for you to have regular check ups. These will continue for some years, and possibly for life.

 

How often you will have check ups

How often you see your specialist will depend on whether you are having treatment and how you are doing generally. If you are having  treatment, you will need to see your doctor quite often to check how well your leukaemia is responding and for any side effects, such as low blood counts. If you are not having any treatment, you will usually only need to see the doctor every 6 to 8 weeks to start with. If you stay well, you may only need to have a check up every 3 to 6 months. After a couple of years you may only need to go once a year.

 

What will happen during your check ups

You will have blood tests and your doctor will want to know how you are feeling. You may have a physical examination as well. Sometimes your doctor may ask you to have a bone marrow test.

If you are worried, or notice any new symptoms between appointments, let your doctor or nurse know straight away. You don't have to wait until the next appointment. Your doctor would rather know if there is something worrying you.

Your doctor or nurse should give you some guidance about which symptoms to look out for and report if you are on treatment. And they will tell you who to contact if you have any problems or worries.

 

Coping with worry

Many people worry about going for their check ups. If you are well and getting on with your life it can bring back all the worry about your cancer. You may find it helpful to tell someone close to you about how you are feeling. Sharing your concerns can make them seem less of a burden. It is quite common nowadays for people to have counselling after cancer treatment. To find out more about counselling, look in the coping with cancer section.

You can also look in our help and support section at the chronic leukaemia organisations page for organisations that can put you in touch with counselling services and a support group. 

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Updated: 14 April 2015