Follow up after treatment for acute myeloid leukaemia (AML)

Why you have follow up appointments for AML

You usually have follow up appointments to check how you are and see whether you have any side effects, complications or worries. These check ups are usually with your doctor or specialist nurse (CNS) or both.

You also have check ups because it is possible that the leukaemia could come back.

How often are your follow up appointments?

How often you see your specialist can vary from hospital to hospital. It also depends on:

• how you are feeling

• the type of treatment you have had

• if you have any side effects that need checking on

You may have several different clinic appointments depending on how many health professionals are involved in your care.

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.

You’ll have follow up appointments for several years. At first you have at least weekly blood counts until your bone marrow is working properly. So you usually have very frequent contact with your clinical nurse specialist or bone marrow transplant nurse.

You will also see your doctor very frequently to start with such as every few weeks.

As time goes on, the time between appointments gradually gets wider so you have appointments less and less often. This may not be the case if you have side effects that need monitoring after treatment.

A general guide of follow up appointments include:

• 3 monthly for 2 years

• 4 monthly for another 2 years

• then 6 monthly for 1 year 

If you have had a stem cell transplant follow up is more frequent.

After 5 years you have tests to check for side effects of having treatment. You may also continue follow up in long term follow up clinics or late effects clinics. Follow up beyond 5 years will depend on your individual situation, as a guide they generally happen yearly.

What happens during follow up appointments?

You usually have face to face follow up appointments. But you may also have telephone or video calls for some of your follow up appointments. 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

But some might not.

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

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. 

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.  

You might also see other healthcare professionals such as physiotherapists and dietitians during the check ups. Your doctor or nurse can arrange for you to see them at the outpatient clinic.

Let your team know straight away if you are worried or if you notice any new symptoms.

Between appointments

Contact your doctor or specialist nurse if you have any concerns between appointments. You should also contact them if you notice any new symptoms. You don’t have to wait until your next appointment.

Many people find their check ups quite worrying. A hospital appointment can bring back any anxiety you had 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.

Read about counselling and how to find a counsellor

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

Find out more at Cancer Chat