Getting a diagnosis of leukaemia

Leukaemia or myelodysplastic syndrome (MDS) may be diagnosed through a variety of routes. Most people we spoke to had a blood test either after presenting symptoms to a GP, when having a routine check-up for another health problem, or a general health check, or when donating blood (see ‘Symptoms’).

A woman who had several GP appointments, but felt her symptoms were not adequately explained, visited a different surgery and had a blood test that led to her chronic myeloid leukaemia (CML) diagnosis. When Deb’s symptoms did not respond to antibiotics he walked into his local Accident and Emergency (A&E) department where blood and bone marrow tests revealed his acute myeloid leukaemia (AML). Unusually, Kerry's acute lymphoblastic leukaemia (ALL) diagnosis was made from examining fluid removed from one of her lungs, which had been causing her breathing difficulties, while doctors were investigating a mass in her chest.

After a blood test most people were telephoned and asked to visit their GP to receive the results or they spoke to the doctor on the phone. People were often surprised at how soon after the test they were contacted, sometimes within hours. Depending on the seriousness of the condition, people were either admitted to hospital the same or the next day or referred to see a haematologist at a later date. A few had a repeat blood test before being referred to a specialist.

Some people's GP's had not told them the diagnosis at this stage. Others were told that they had, or might have, leukaemia, and that further tests would confirm this and find out which kind of leukaemia it was. In a few cases the GP could say which type it was. Some people pressed the GP to tell them what was wrong. When told she had a blood disorder Marie panicked, assuming she had contracted AIDS while working in Africa. People whose blood test results suggested chronic lymphocytic leukaemia (CLL) - which progresses slowly and does not usually need immediate treatment - often had to wait a long time to see a specialist, which could be worrying, especially for those with symptoms.

Two men learned their blood test results from a specialist. Jeff was phoned by a haematologist who he was seeing for another blood condition (polycythaemia). After having blood taken by his GP on a Friday Mark was visited at home by a haematologist who told him the diagnosis and gave him some medication to take over the weekend before attending hospital on the Monday.

Diagnosis wasn't always straightforward. Thelma’s first blood test revealed an abnormality but after a repeat test she was relieved to be told that the results were normal. However, more tests followed that eventually led to an AML diagnosis. After blood and bone marrow tests, ‘Ace’ was told by a specialist that he had an incurable type of cancer whose name he cannot remember. A week later the specialist phoned to apologise that she had made a mistake. She referred him to a specialist hospital where he was told he had AML and a good prognosis. Brian was initially diagnosed with MDS but within months was told it had developed into AML. He was surprised because he had no symptoms and had been told there was only a low risk of his type of MDS developing over many years into leukaemia.

While leukaemia can be diagnosed from a simple blood test in which the numbers of each type of blood cell are counted, further tests are needed to establish the type of leukaemia (see ‘Leukaemia tests and investigations’). This can take several days during which details of the diagnosis may drip out until the definitive diagnosis is known.

A few people were diagnosed after being admitted to hospital in an emergency, not as a result of a blood test. After experiencing a series of infections, tiredness, joint pain, jaundice, loss of appetite and weight, and heavy menstrual bleeding, Frances vomited so violently that she tore muscles in her chest and abdomen and lost control of her bladder. The out-of-hours doctor admitted her to hospital where tests revealed that she had ALL. Similarly, Ian had a variety of symptoms including tiredness, pain and swollen lymph nodes on his head. One day, when feeling worse he phoned a colleague, who called the GP out. He was admitted to hospital and found to have ALL. Gilly was taken to hospital when experiencing heart palpitations, disorientation, light hurting her eyes, and going in and out of consciousness; she was diagnosed with AML.

Once diagnosed, the prognosis varies enormously depending on the type of leukaemia and how far it has progressed (see ‘What is leukaemia?’). Some people were told they would have only a few months to live if their acute leukaemia was not treated urgently but that treatment would give them a good chance of a full recovery. A stem cell or bone marrow transplant was sometimes recommended as the only treatment that could achieve a cure. In two people acute leukaemia was already so far advanced at diagnosis that they were admitted to intensive care and nearly died. However, in both cases treatment worked and they achieved remission (where no leukaemic cells can be found in the blood or bone marrow and the bone marrow is working normally again). 

By contrast, people with chronic leukaemias were told they had an incurable form of leukaemia but that it was a slow developing condition that they could live with for many years. Although this is true for most cases of CLL, some people have a genetic mutation in their leukaemic cells that make the disease more aggressive. For instance Jane was told that she had two types of leukaemic cells which meant that they were growing faster than usual.

*AML – Acute myeloid leukaemia
 ALL – Acute lymphoblastic leukaemia
 CML – Chronic myeloid leukaemia
 CLL – Chronic lymphocytic leukaemia
 MDS - Myelodysplastic syndrome

Last reviewed: December 2018.
​Last updated: July 2012.

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