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 is an accountant. He is married with 2 children aged 17 and 15. Ethnic background: White English.
And then obviously throughout your treatment on the, I was going to say on a daily basis, it wasn’t a daily basis, but every second or third day when you were in hospital you had a blood test.
But because of the Hickman line it was very simple, you know, injection or syringe into the Hickman line, extract whatever blood they needed and send them off and a couple of hours later the results came through. And at that point that was one of the things that when you’re going through it you know all about your blood counts, you know all about, all the figures you need to know about you’re on top of. You actually become quite nerdy about it and it’s only once it’s all finished you go, ‘Well I suppose it was important at the time but can I remember it all now? No not really.’
I knew that my red blood cells needed to be up at this level and my whites needed to be below that level, and the neutrophils need to be at this level, and until I got to a neutrophil count of one I wasn’t going to get out of the hospital so I needed to work it out to get those up.
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 is a retired tea lady. She is widowed with two adult children. Ethnic background: White English.
Yes, and she came with me when I had the needle into my, bone marrow taken, that’s right, I forget sometimes, and she was holding my hand, so that was okay.
So they just gave you a local anaesthetic on the skin for that? No other sedation to make you relax and sleepy?
But it was painless?
Yes, I was amazed. She had the instruments covered up and I wasn’t going to look, and you lay on your side and she said, “You’ll just feel a pushing and a pulling.” And that’s all you did. I was amazed, because first of all she took one bit out and then they took a little bit of bone out afterwards. And all there was on the skin was a pin prick and there was no bruise at all. Because I thought, “God, I hope it’s all right because I’ve got to have another one at the end of the treatment.” But yeah, it was fine.
So the pushing and the pulling wasn’t too bad at all?
No, and all you got next day was a just a slight ache. That was all. It was nothing bad. Nothing you couldn’t cope with. I was amazed. I thought I’d be scraped off the ceiling.
Age at interview:
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Michael is a semi-retired university lecturer. He is married with 3 children aged 15, 17 and 25. Ethnic background: White British.
You mentioned having bone marrow samples taken and it’s not very pleasant. Can you tell me a bit more about that?
Yes, you’re sort of turned over on to your tum and then they dig into you to get a sample from your bone marrow. And they give you a local anaesthetic but they can’t anaesthetise the bone. So when it goes in through the flesh it’s not too bad, but then when it actually hits the bone it’s just very uncomfortable. But we’re talking about a minute of discomfort, it’s not something… I think I’ve had three and I have to say the doctors vary. You know, one I remember was not, well, I was a difficult patient for her anyway, let’s put it like that. The other two were, I was, and that was the first one I had as well, and I was dreading the next, second and third and they weren’t quite as bad, or maybe I just got used to it. But it’s not something you look forward to. So that was a bit unpleasant.
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 is a Project Manager. She is in a civil partnership and has no children. Ethnic background' White Scottish.
And when I got the bone marrow test, which was literally the next day, they’d rehydrated me, I was on saline drips and all sorts of other things overnight. Antibiotics as well. And they came in the next day and before they did the bone marrow they were absolutely excellent. They came in, they explained what a bone marrow was, how it usually feels, what they would do before it, what I would maybe feel during it, all that sort of stuff. They were very, very, very informative. Very good.
And I was just like, ‘I just want to know what this is. I just want to know and that’s it.’ So took the bone marrow and it certainly wasn’t as distressing as I thought it was going to be. Again I think the heavy doses of painkillers I was on probably helped because as my treatment went on I got more distressed about them. But certainly that first time it wasn’t what I expected it to be. I was quite relieved it was all over and done with very quickly.
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 is retired. He is married with no children. Ethnic background: White British.
So have you had lots of bone marrow biopsies done?
Yeah, there were lots, and some doctors know how to do it without causing a great deal of pain and some are insensitive to pain. And the only way you can try and make it a better experience is to talk to them before they do it and make sure that they allow the anaesthetic enough time to set off, because some doctors want to get on with it as soon as they can. They’re busy, they need to get the biopsy taken. And I always found it was far better to delay the process a little bit, slow them down a little bit and found that I always got a better result. I didn’t get the pain.
Can you describe the pain or, take me through the procedure the first time you had it so you didn’t know what to expect. The bone marrow biopsy I’m talking about.
Yeah. The procedure is that you’re asked to lay on your side and you’re asked to curl up into a sort of fetal position, and this is so that I think your pelvic bones are prominent. The doctor then feels for a point somewhere in your pelvic bone where they want to take a sample. They then give you the local anaesthetic. Then having really good memories about where this point is, they then go back to it with a biopsy needle, which is a lot bigger, which luckily you don’t see because it’s round the back. And that takes a bit of time to insert and then once they’ve inserted that then there’s another needle goes inside it, or another thing that goes inside it, which they use to pull out the bone marrow, which normally takes a bit of time and it’s normally like drawing a cork out of a bottle. And the feeling I had was a feeling like being in an elevator going down very quickly and a kind of feeling of being drawn at the same time. And usually they would say, “Haven’t got enough sample here”, or, “I’ve got this bit of bone stuck in here as well”, or… And they’d have another go.
Like at a lot of things in hospital, the people who do a procedure most often become expert at it. And doctors who were good at doing biopsies were those who had done them frequently. So kind of woe betide you if you get somebody who’s just joined and hasn’t had much practice because it can be very, very painful. But you just have to bear it because it’s the only way they’re going to tell you if there’s an improvement or not.
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Jimmy is a retired electronics technician. He is married with one adult child. Ethnic background: White British.
But then I had a bone marrow…
Yeah, what was that like?
God, that was terrifying, honestly. I mean I’m frightened of needles at the best of times but unfortunately I’d seen this needle on the trolley. God, I nearly jumped up and ran. I tell you it must have been that length. I was absolutely “Oh”. But I mean it’s very, very uncomfortable but it’s not painful. The only thing I did find out, it may just have been psychological, I don’t know, but when they were drawing the bone marrow out I felt as if my leg was going like that. Now it might not have been, I don’t know, but it just felt like that. But apart from that, as I say, I’ve had no bad experiences at all.
So presumably they gave you a local anaesthetic on the skin for that?
Have you had to have any more of those ones?
Yes, I’ve had another one done. When he mentioned it I said, “Oh God, here we go.” He was awfully nice. A young doctor and he said to me, so I said, “I’m very sorry. I’m not here. I’m sitting on the side of the banks of the river Loire with a glass of red wine in my hand. I don’t know who you are and I don’t care.” And he just started laughing and just got on with it. But fortunately in that respect I do have that ability just to be not where I am, to be somewhere else, especially when the nasty things are happening like that. My good woman, she’ll tell you what I’m like with needles. I am terrible. One comes near I’m like that.
That sounds like a really good strategy if you can do that.
Aye, well it is. It works wonders for me.
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 is a retired HR director. She is married with no children. Ethnic background: White British.
No, I think initially, when I was again on this clinical trial and I was having bone marrow aspirates, which are again things that people love doing under local anaesthetic and I’d just like a few doctors and nurses to have them once under local anaesthetic, and then maybe they’d take a different view. And you can have a good experience with them and you can have a really bad experience with them, and I was giving samples of bone marrow aspirate for probably a year after I’d left hospital for the clinical trial.
But they became very difficult because when they cause you a problem, when you have a lot of discomfort with them it takes a lot of to go and have the next one. And I had some bad experiences with them so I talked to my consultant and I said, ‘Well look, I think I’ve had enough.’ And even though towards the end I was being sedated with them, I think it’s just one of those things. I haven’t actually met anybody who says, ‘Oh whoopee, how pleased I am today I’m going to go and have a bone marrow aspirate.’ Everybody I’ve spoken to hates them and they are unpleasant.
Did the sedation make a significant difference?
Yes providing they’re done properly, yeah. And I would certainly say to people, do ask if you can have sedation, you know, don’t be afraid to ask to have sedation because it does make a big difference. Apparently you’re conscious all the time but it takes your short term memory away so you don’t actually remember having it done at all. And I had the last six of mine I had all under sedation and it made it a lot easier. I felt that after three or four experiences of it and that horrible sensation, not only of the pressure when they drill into your bone, but that sucking sensation. It’s indescribably horrible.
And I think you have to be very brave to keep going and having those willingly, and so the more support you can have to make it easier, I think the better. And it’s interesting because some of the doctors, you know, because you get a different doctor doing it every time you go there as an out-patient and they say, ‘Oh it’s okay, I’m really good at doing these.’ And I’m thinking, ‘Yeah, you’re just like the guy who put my Hickman line in. You’ve probably never had one yourself.’ They can be done well, obviously, but they are an unpleasant procedure. So I’d vote for sedation every time.
Age at interview:
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She is a Human Resources Consultant. She is married with no children. Ethnic background: Asian.
But I remember, you know, before PCR’s* where it’s just a matter of a blood test and they can tell your counts, I used to have my bone marrow taken out, which was very painful. Every time I went for my sort of meeting, my appointment at the hospital just to get the counts, they would have to extract some of the bone marrow, and that was really painful and very, very uncomfortable. So I used to always ask to be sedated rather than be locally anaesthetised before they could actually extract it. So that was very, very uncomfortable but since then it’s been fantastic because now it’s only a blood test.
Tell me all the graphic detail.
Well, they would take it out of the lower back and, I can’t remember what it’s called, if there’s a specific term for that, but anyway they would locally anaesthetise the region and they would put me on my side and they would insert a huge thick big needle. And although I wouldn’t exactly feel pain as such but I could feel the needle inside of me and poking around and them extracting the, you know, the whole feeling of something being sucked out of my system. And that was awful, absolutely awful. It was, you know, I couldn’t bear it so I just said to them, “Listen, it’s probably best if you just sedate me so I’m not aware of this whole thing.” And they were quite reluctant to do that but eventually they agreed. And so the last few times I’ve had it it’s been that but, you know, PCR’s* have been a real blessing so that’s been great. Yes.
So what difference does the sedation make to you?
Well, I mean usually I would take time off work and go in for my appointments and that would really, you know, being sedated would really take the, it would, I wouldn’t have been any good even if I went back to work. It would take me a while to sort of get out of it and be awake and alert, but it would still make me, you know, leave me feeling quite groggy, a little bit unsteady on my feet. So even if I did go back to work, which I did, but then it, I wasn’t any good at actually doing anything, so I would just sit there until five thirty and then leave. So but with this it’s really, it’s very, with the PCRs* it’s just going in, a couple of hours, you know, it’s normal blood sample collection and then you’re fine, there’s no impact on the body at all. So and then of course there would be a feeling of soreness where the needle has gone in and your back has been punctured. So that feeling of soreness will probably last for a few days, so it wasn’t hugely pleasant.
So even though you felt groggy after having your sedation and it would interfere with your day’s work, you would still prefer to have the sedation to have your bone marrow taken out than have it without?
Yes, I mean just the discomfort of having the needle poke around and that was absolutely awful. I couldn’t bear it, so I just preferred sedation. So, yes it was good.
*PCR' Polymerase Chain Reaction. A test which looks for genetic changes in cells. It can find one leukaemia cell among a million normal cells.
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 is a retired management accountant. He is married with two adult children. Ethnic background: White English.
So you’ve had some CT scans along the way. What’s it like having a CT scan?
No problem. The worst thing is holding your breath really for something like thirty seconds. You know, you’re on the conveyor, or on the thing that goes into the cylinder, and you’re watching the thing up above and that says how long you’ve got before it stops. And you think, “Thirty seconds”, and you’re like, “One, two..” And they say don’t breathe in that time, you know, it’s absolutely horrendous. But, you know, others like two and three seconds they’re not, so there’s no problem with it. I quite like aniseed so I’ve no problem.
Because you have to drink this aniseedy stuff.
Yeah, you have to drink the aniseed, yeah. No I like aniseed so that’s no problem to me.
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.