Leukaemia tests and investigations

Various tests are used to diagnose leukaemia, to assess the effectiveness of treatment and check for recurrence. A leukaemia diagnosis is usually first suggested from a simple blood test, in which the numbers of each type of blood cell are measured.
A bone marrow sample may be needed to make the definitive diagnosis of leukaemia. It also confirms the particular type of leukaemia, can examine the chromosomal makeup of leukaemic cells, and may give useful information as to prognosis. People with types of leukaemia involving the Philadelphia chromosome (such as CML) may have a PCR (polymerase chain reaction) blood test to monitor their disease. A physical examination can detect an enlarged spleen or swollen lymph nodes. Sometimes a lymph node biopsy is taken. Scans or x-rays allow doctors to look at the lymph nodes and spleen and examine the lungs.
Everyone we talked to described having blood tests before their leukaemia diagnosis (see ‘Getting a diagnosis of leukaemia’), but few said much about blood tests at other times. Jeff mentioned difficulties having blood taken during treatment because his veins collapsed from overuse. People whose treatment was given through a central line in the chest or arm could also have blood taken that way to avoid repeated needle punctures.

Neil had frequent blood samples taken via his Hickman line during his treatment for AML* and…

Age at interview 50

Gender Male

Age at diagnosis 44

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Most people had a bone marrow sample taken at diagnosis and some also had them during or after treatment. This involves inserting a needle into the back of the hip bone (pelvis) or occasionally the breast bone (sternum). Some liquid marrow is drawn into a syringe (bone marrow aspirate), and sometimes a core of solid marrow is taken from the bone (trephine biopsy). The procedure is done after numbing the area with a local anaesthetic, sometimes in combination with a sedative, which makes the patient sleepy, but not unconscious. Occasionally it may be done during a general anaesthetic, for example when inserting a central line (a tube inserted into a vein in the chest, arm or groin use to deliver intravenous drugs, instead of injections or via a cannula, which can stay in for the duration of treatment).

People’s experiences of having bone marrow samples taken varied from painless (under general anaesthetic), through short-lived discomfort, to extreme pain. Some described it as ‘terrible’, ‘horrible’ or ‘absolutely awful’. Others explained that although it could be uncomfortable, any pain was short-lived and manageable.

Jean was pleasantly surprised that having a bone marrow sample taken was painless; it caused no…

Age at interview 71

Gender Female

Age at diagnosis 70

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When having bone marrow samples taken Michael found that the anaesthetic only numbed the flesh…

Age at interview 60

Gender Male

Age at diagnosis 54

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Deirdre regretted having been alone for the biopsy but wondered whether it would have been fair to put a family member through it. Elaine took her husband and says he had never before seen her in such pain.

Doctors know the procedure is unpleasant and some people said they had been well prepared beforehand by their doctors. As a result a few said it had been better than they expected. Some said that the procedure became easier each time as they got used to it; others said it got worse because they knew what to expect. Many took the attitude that you had to bear the discomfort because the procedure was essential. Others requested a sedative or a general anaesthetic so they would experience less pain.

Frances first bone marrow test wasnt as bad as she had expected following a good explanation…

Age at interview 45

Gender Female

Age at diagnosis 42

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Regardless of the level of pain experienced when having a bone marrow sample taken, everyone described an unpleasant pushing and pulling/sucking sensation. Some also mentioned scraping or crunching sounds. One man likened it to childhood experiences of having his teeth drilled without anaesthetic. Some people said that although they couldn’t see what was happening what they imagined was probably worse than the reality. Several coped by distracting their mind. A woman said she tried to focus on a point on the wall; Ann put her fingers in her ears and sang.

John describes having a bone marrow sample taken. The skill of the doctors doing the test varied…

Age at interview 58

Gender Male

Age at diagnosis 52

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Jimmy is scared of needles and found his first bone marrow biopsy very uncomfortable rather than…

Age at interview 63

Gender Male

Age at diagnosis 57

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Some people were offered, or asked for, sedation to calm them while having bone marrow samples taken. This made them drowsy, which took the edge off any pain or discomfort they experienced and they forgot about it afterwards. The sedative Aley was given made him feel drunk. Others said that although sedation relaxed them it didn’t affect the pain. Some declined sedation because they didn’t want to feel groggy afterwards and have it affect the rest of their day. One woman said she preferred sedation and accepted that she wouldn’t be able to work afterwards. Julie said she had only ever had it done under sedation because it looked painful and she wouldn’t let them do it any other way. Dianne advised others not to be afraid to ask for a sedative if it wasn’t offered.

Dianne had many bone marrow biopsies done and says you have to be brave to keep having them…

Age at interview 53

Gender Female

Age at diagnosis 50

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Having bone marrow samples taken under local anaesthetic was painful and unpleasant so she asked…

Age at interview 40

Gender Female

Age at diagnosis 28

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Most people experienced some bruising and tenderness for a few days after having a bone marrow sample taken but could continue their daily routines. Very occasionally the effects lasted longer. Jane felt pain for a long time afterwards, and Dianne and Glynn suffered nerve damage causing temporary paralysis in the leg.

Some people had a CT scan of the chest or abdomen to look for swollen lymph nodes. A CT scanner uses specialised x-rays to build a 3-dimensional image. It is painless and involves lying on a couch that moves through a short tunnel. People may be given a drink or injection of dye beforehand that helps to show up certain areas more clearly.

Glyn didn’t like having to hold his breath for long periods during a CT scan but didn’t mind…

Age at interview 66

Gender Male

Age at diagnosis 63

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Jane wondered whether it was necessary to expose herself to the high dose of radiation of a CT scan early in her illness, rather than doctors simply feeling her lymph nodes. Len had an ultrasound scan of his spleen because the doctor couldn’t feel it clearly and wanted to know if it was enlarged. He explained that this was the same procedure as pregnant women have. It involves moving a probe over the body through a film of jelly to produce a picture using sound waves. A few people had chest x-rays. Kerry’s first x-ray revealed a mass in her chest, the second, fluid in one of her lungs.

Jimmy had an enlarged lymph node in his neck biopsied. Elsa’s first symptom of MDS (myelodysplastic syndrome) had been frequent menstrual bleeding, which was initially investigated by a laparotomy operation because it was assumed she had a gynaecological problem. Chanelle had eye tests because the first sign of her CML (chronic myeloid leukaemia) was a burst blood vessel in her eye. Jane had a variety of tests of her heart and thyroid gland to investigate the cause of her tiredness before her CLL (chronic lymphocytic leukaemia) diagnosis.

* AML – Acute myeloid leukaemia

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