Follow up for acute lymphoblastic leukaemia (ALL)

After treatment for ALL, you have regular check ups and blood tests at your hospital. Over time, these appointments become less frequent.

You usually have follow up appointments with your doctor or specialist nurse (CNS) or both.

This page is about follow up for adults with ALL. We have separate information for children with ALL.

Why you have follow up appointments

You usually have follow up appointments every few months at first 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.

How often are check ups?

Your check ups will continue for several years. The frequency of appointments will depend on:

• the type of treatment you have had

• how you are feeling

• if you have any side effects that need checking on

You see your doctor every month while you're having maintenance treatment.

A typical schedule for follow up appointments might be:

• 3 monthly for 2 years

• 4 monthly for another 2 years

• then 6 monthly for 1 year

This is an example, so don’t be worried if your appointments are slightly different. 

After 5 years, you may have appointments in long term follow up clinics or late effects clinics. These are usually every year.

Follow up is tailored to your needs. Before you leave hospital, you are usually told when you will next have an appointment. Contact your specialist nurse if you are expecting an appointment but haven’t heard anything.

What happens at your appointment?

You might have your appointment face to face, by video or telephone. Your healthcare team will let you know which type of appointment you will be having.

Face to face appointments

Some follow up appointments might ask you to see a nurse or healthcare assistant to check your:

• temperature

• blood pressure

• heart and breathing rate

• weight

On the day of your clinic appointment you have a blood test and you may also have a bone marrow test. 

Telephone or video appointments

You might feel relieved that you don't have to go to hospital. But some people find a video or telephone appointment can feel less personal than a face to face appointment. It can also be particularly challenging if you don't like talking to people on the telephone or video. 

Things you can do to help you prepare for your telephone or video follow up appointment include:

• Asking roughly when your doctor will call.
• Make sure they have the correct number to contact you on for your telephone appointment.
• Make sure you have the invite to the video call if you will be having your appointment this way. 
• Let them know if you might have problems with phone or video and you need a face-to-face appointment instead.
• Before the call write down any questions you want to ask.
• Take the call somewhere quiet, where you won’t be disturbed. And maybe ask someone to listen into the call with you for support. They can help to ask questions and help you to remember what the doctor says. 

During the appointment

Your doctor generally asks about how you're getting on. They'll check your latest blood test results. If you are having a face to face appointment they might examine you. They'll also ask if you have any side effects or symptoms. It might help to write this down beforehand so you remember to mention them.

Your doctor or nurse will give you some guidance about which symptoms to look out for and who to contact if you have any problems.  

Between appointments

Coping with follow up appointments

Many people worry about going for their check ups. If you are well and getting on with your life, it can bring back any anxiety you have about your leukaemia. You may find it helpful to tell someone close to you how you feel. Sharing your concerns can help. It is common for people to have counselling after cancer treatment.

Don’t be surprised though if you find it quite reassuring to go back for check ups. Acute leukaemia treatment is tough. You are often in hospital for months. Being away from the hospital can make you feel quite nervous at first. So it can be reassuring to go back and make sure everything is still OK.

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