Follow up for acute lymphoblastic leukaemia (ALL)

You 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 ask any questions you have.

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.

Telephone or video appointments

You might feel relieved not having to attend the 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. 

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

But some might not.

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

During the appointment

Your doctor generally asks about how you're getting on. They'll check your latest blood test results. If you're at the hospital they might examine you. They'll also ask about any side effects you might have.

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

Between appointments

How often do I have check ups for?

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

• what type of treatment you have had
• what supportive care you need

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

A typical follow up schedule after this would be:

• 3 monthly appointments for 2 years
• then 4 monthly appointments for the next 2 years
• then 6 monthly appointments for the last year

After 5 years you may be followed up in long term follow up clinics or late effects clinics. These generally happen yearly. 

​​​​​​​Where do I go my follow up appointment?

If you're having a face-to-face appointment you usually go to the cancer clinic for follow up. However due to the coronavirus pandemic many hospital appointments may have changed. You might have a video or telephone appointment instead of a face-to-face appointment.

Your healthcare team will let you know about your follow up appointment and what to expect.

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 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.