Anyone can be affected by acute myeloid leukaemia (AML). There are many factors which can lead to AML, many of which we can’t control.
There are several symptoms of AML, and it’s important to remember that not everyone will get every symptom of leukaemia – each patient is different.
If your doctor thinks you have AML, you’ll have several tests to confirm your diagnosis. It’s important that you understand your diagnosis – it might be a good idea to ask your consultant to write it down so you can use it if you’re looking for more information or support, or if you need to tell other people about it.
Signs and symptoms
The most common set of symptoms seen in people who have AML are listed below. These symptoms can happen because the cancer cells are stopping your normal blood cell production.
This is caused by a lack of red blood cells, which results in a lack of haemoglobin (the protein which carries oxygen). This is called anaemia.
tiredness or lack of energy, which you feel much more than usual
breathlessness, which you might notice when you try to do something like walking, shopping or housework
chest pain, although this is a rarer symptom.
Bruising and bleeding
This is caused by a low platelet count in your blood. This can result in:
being more prone to bruising, which may occur without experiencing any bumps or knocks
bleeding from your gums – we can all bleed sometimes when we brush our teeth, but this is more bleeding than you’d usually get.
Sometimes, you might not notice bleeding in other body parts because it’s somewhere you can’t see, like inside your gut. In this case, you may not notice blood in your stool – your stools could just be very black and tarry.
Infections are caused by a low white blood cell count. This can result in:
infections such as pneumonia, urinary tract infections or gastroenteritis
chest pain, although this is a rarer symptom.
We don’t fully understand the link between AML and weight loss, although we do know it’s caused by a high metabolism (when your body is quick at changing the food you eat into energy). Sometimes, you can lose weight without changing your diet.
There are some other, less common, symptoms of AML. These other symptoms include lumps and bumps on your body, known as swollen lymph nodes. Your lymph nodes are bean-shaped organs in several places in the body, including your neck, armpit and groin, that act as filters to catch viruses, bacteria and other foreign materials.
Sometimes patients can also develop chloromas. These happen when a lump of leukaemia cells, known as a nodule, collect within the skin to form a tumour. This is a rare symptom – only 2–3% of patients are affected by chloromas. If you have a chloroma, your doctor will seek a specialist opinion.
Watch Professor Paresh Vyas, Consultant Haematologist at John Radcliffe Hospital, Oxford, talk about the symptoms of AML.
Tests and diagnosis
You’ll have a set of tests to confirm whether you have AML or not. It’s important that you know and understand your diagnosis. It might be a good idea to get your consultant to write it down so you can use it if you’re looking for more information or support, or you need to tell other people about it.
If you’re diagnosed with AML, you’ll have some further tests to determine the right treatment for you. At any time, you can ask your healthcare team to tell you why you’re having a certain test and what the results mean.
Tests for AML
AML can usually be diagnosed with a series of simple and accurate laboratory tests. You’ll have several tests to confirm whether you have AML.
Sometimes it can take a few weeks before you get your diagnosis. You may feel anxious whilst waiting for your test results, but it’s very important that your doctor takes this time to understand your illness, so that you have the right treatment.
Full blood count and blood film
A full blood count (FBC) measures the number of each type of cell in the blood: red cells, white cells and platelets. You might be sent for this test by your GP as part of a routine check-up. Other patients might have one when they’re in hospital for something else.
If your FBC shows that you might have AML, you’ll need to go to hospital for more tests. If you’re diagnosed with AML, you’ll have regular FBCs to monitor your condition.
A blood film is also taken from a sample of your blood, which your doctor or hospital team use to look at your blood cells under a microscope. This allows them to see if you have any leukaemia cells in your blood.
Bone marrow aspirate and trephine
In most cases, your doctor will also take a bone marrow sample to see how your blood is working inside your bone marrow.
There are two parts to your bone marrow test. You’ll have a bone marrow aspirate, which is where a sample of bone marrow is sucked out from your hip bone using a fine needle. Sometimes this is followed by taking a core of the marrow, using a different type of needle; this sample is also taken from the hip. This test is known as a bone marrow trephine. These tests can be done under local anaesthetic or with mild sedation.
Bone marrow tests provide information about the structure of the marrow and the number and distribution of the different blood cell types – and cancer cells, if present. You might not have these tests if active treatment isn’t appropriate for you. Your doctor will talk to you about this if it’s the case.
You’ll have tests called immunophenotyping and cytogenetics. These are important because they prove whether you have an acute leukaemia. This genetic information helps your healthcare team decide on suitable treatment options, which they’ll discuss with you. Sometimes you might have more genetic tests, but not all people have them.
Several laboratory tests are done on your blood and bone marrow samples that you’ve given. The hospital team will look at the cells under a microscope. They’ll test whether the cells are leukaemia cells by a technique called immunophenotyping, which counts the number of leukaemia cells and determines whether these cells are myeloid or lymphoid cells. This test can tell your doctors the type of acute leukaemia you have – so whether you have AML, acute lymphoblastic leukaemia (ALL), or acute promyelocytic leukaemia (APL).
Leukaemia is caused by genetic errors. Sometimes this happens on a greater scale, which is easy to see under the microscope.
Genes are arranged into structures called chromosomes. We have 46 chromosomes, which can sometimes be broken or rearranged. The hospital team will look to see if this has happened. The study of this is called cytogenetics.
Watch Professor Paresh Vyas, Consultant Haematologist at John Radcliffe Hospital, Oxford, talk about the tests used to diagnose AML.
Once you’ve had the results of your diagnostic tests back from the laboratory, you and your healthcare team will have lots of information about your condition. But before and after diagnosis, you might have some other tests. These tests will give your doctors additional information, and help to measure your medical fitness – which may influence decisions about your treatment.
Blood clotting system tests
If your doctors suspect you may have AML, you’ll have your blood clotting system tested. You need this test because the leukaemia cells may change how your clotting system works, which can affect your body’s ability to properly stop bleeding and bruising. This will be one of the first basic tests carried out when you’re first admitted to hospital. If the tests show that your clotting system isn’t acting normally, you might have acute promyelocytic leukaemia (APL).
If you’re diagnosed with APL, your treatment will be different from the treatment for AML.
General health tests and infection screening
When you’re diagnosed with AML, you’ll have a general health assessment. This will help work out if you’ll be particularly vulnerable to side effects from treatment.
You’ll have a range of tests to check your general health, including your heart, liver and kidney function, and tests for HIV and hepatitis B and hepatitis C.
Your healthcare team will talk to you about what the results of these tests mean for your treatment.
Classifying and risk grouping
The information from your tests will help to determine which type of AML you have. There’s a classification system used by doctors which was created by the World Health Organization (WHO). This divides AML into different groups based on which cells have become abnormal, but you won’t hear doctors using this classification with you on a day-to-day basis.
The most important part of classifying AML is risk grouping. This classification is based on the amount of damage to your DNA (also called genetic abnormalities) and the number of leukaemia cells that are still in your bone marrow after your first course of treatment.
In some cases, especially for people having intensive treatment, healthcare teams often try to stratify, rather than classify your condition. Classification means dividing disease into different categories or types, whereas stratifying means defining how severe the leukaemia is. Stratifying helps your healthcare team to understand how the leukaemia might affect you and how easy or difficult it will be to treat.
Stratifying also gives doctors an idea about which treatments will be best for you.
There are three risk groups in AML. Risk often refers to how likely a relapse is (the cancer coming back).
Low risk describes people with a good chance of being cured and a low risk of relapse. Low risk patients won’t usually need a stem cell transplant. Occasionally, these patients may have a transplant later, if they do relapse.
Intermediate risk describes people who are neither high nor low risk. Intermediate risk patients may or may not need a stem cell transplant.
High risk describes people who have a high risk of relapse. They’ll have the most intensive treatment. High risk patients will often have a stem cell transplant early in their treatment, if it’s suitable for them.
Your risk group can change while you’re being treated – you can ask your healthcare team for any updates about your condition.