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.
Chanelle is a project manager. She lives with her partner and has no children. Ethnic background: White British.
Okay I was diagnosed with chronic myelogenous leukaemia when I was 20 years old. At the time I was attending university and I had come home for the summer holidays. And whilst I was at home I had kind of a lot of the classic symptoms which, you know, at the time I think everyone pegged down to student lifestyle so it had kind of escaped everyone’s attention.
But I’d lost a lot of weight and just didn’t have a very large appetite and was quite pale and with bruising quite easily and, you know, things like this. But it wasn’t really ringing any alarm bells. And then I had decided to try contact lenses and was really struggling with them and realised that there was a blind spot in my vision. And my mother said to me, ‘You must have scratched your eye when you were putting in a contact lens.’ So I went to the optician. He said to me, ‘You haven’t scratched your lens, a blood vessel has burst in the back of your eye and this is really unusual. So I want you to, not even go home, go straight to accident and emergency and find out what has happened because I think that this could potentially be something quite serious.’
So I went to the hospital and had lots of eye checks and things and they said, ‘We’ll take a blood test. Come back tomorrow.’ So my parents took me back to hospital the next day and I remember in the car thinking to myself, ‘Oh I hope I don’t have anything like diabetes.’ And then saying to myself, ‘Don’t be silly. It won’t be anything that serious.’
And we got to hospital and that was when I was told that the reason the blood vessel had burst in the back of my eye was because my blood was very thick and sticky. And the reason for that was because there were so many white cells in my blood, which meant that I was suffering from leukaemia, which it was very difficult to hear. And I’m usually quite a composed person and what have you, but being so young as well and, it was both difficult for me to accept.
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.
Jean is a retired tea lady. She is widowed with two adult children. Ethnic background: White English.
Yes, it was August 2006 and I’d had some swellings all round my neck and I’d had them for a couple of months, they didn’t hurt. And I thought nothing of it and I was going on holiday in the November and I thought, “Well, I’d better get them checked.” So I did. I went to the doctor and he made noises, “hmm hmm”, and I thought, “Well, that’s not good.” So he drew a blood test on the Friday, which he did, and the nurse said, “Oh, it’ll probably be about Thursday before you hear.” Well, Monday morning about 20 past 8 the doctor rang and said for me to go in and see him and he’s going to make an appointment to see a haematologist at my local hospital. And that appointment came for that in about two weeks.
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.
Dianne is a retired HR director. She is married with no children. Ethnic background: White British.
The next day got a phone call from the doctor’s surgery to say can we go up to see him. And still we walked up the road perfectly happy, not a thought of any problems. And I sat down in the doctor’s surgery and he held my hand, so I thought, ‘Oh, this isn’t going to be good news.’ And he said, ‘I’m really sorry Dianne’, he said, ‘But you have leukaemia.’ And the shock of that, I’ve never been ill in my life before. The only time I’d been in to the hospital was when I’d fallen off and broken my ankle horse riding, which was a long time ago. Never had any sort of problems at all.
And then everything seemed to happen very quickly because he said, ‘You’ve got acute myeloid leukaemia. You need to be in hospital straight away. I’ve booked you a bed. Go up to the hospital and just go home and pack a few things in a case.’ And it was that quick. And so after a short time my husband and I walked back to the house completely sort of shocked, we didn’t really talk to each other, we just sort of, well we were just in a state of shock really.
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Elizabeth is a retired NHS administrator. She is married with two adult children. Ethnic background: half French Mauritian, half White British.
So that’s when it all took off. Eventually I went to see my GP, which was a Thursday, and she said, “Okay. I’ll try and we’ll do a blood test just to find out if everything’s okay but I’ll give you some of those pills to sort of stop the heavy bleeding and see if we can build you back up”, kind of thing. I was really, you know, “Okay, back to work”, kind of thing. And on the Saturday my son, it was his fifteenth birthday, and I had a load of fifteen-year-olds running around the house, and the phone went. My husband was at work, and it was my GP, who I knew pretty well because I had to deal with her through work as well, and she said to me, she said, “Elizabeth, there’s something very wrong going on here. I’ve made an appointment for you at haematology on Monday. I’d like you to go.” And she knew I was going to say, “Well, I can’t go. I’ve got a meeting”, you know. And I sort of tried to get more info out of her and she was very reticent. She didn’t want to tell me anything on the phone. She knew I was already quite aware medically of things.
So I said, “Okay, well what’s my blood count?” And there was a big silence on the other end, and yet eventually she told me my white count was 98, and I thought, “Okay.” And then she sort of said, “Yes, but your platelets are over 2000.” And then I started, alarm bells started going in every direction really, and she said, “And the worst part your haemoglobin is 7, and really I don’t know how come you’re having a fifteen-year-old kid’s party with a haemoglobin of 7.” So anyway I said to her, “Worst case scenario?” She said, “Please don’t make me do all this on the phone. Go to the hospital and you can ask all the questions but really we need to sort this out and you need to go.”
And in my head straight away I thought, “Right okay, severe anaemia, severe anaemia”, then, “Hmmm”. I got the medical encyclopaedia out, because in those days the internet wasn’t quite what it is today, and then the word leukaemia started appearing. And I thought, “Leukaemia, but it’s only sort of children who have leukaemia, it’s not me”, and, “And leukaemia people are very thin, very white and very bald, you know, it’s not me really. And how could I possibly have leukaemia and do all the things that I do? It’s, you know, it’s…” So I discounted it. I sort of thought, “It’s impossible. It can’t be me.” Anyway, then I rang my husband, I said, “ Well, you’d better come home because there’s, you know, something not right.” So we spent a weekend really trying to think, “What is it?” and trying to sort of hide it from the children of course and, you know, my daughter was, was she doing GCSEs or A-level? She must have been doing her GCSEs, and so… No, she was doing A-levels. It was hellish weekend really.
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Jane is a retired chemistry teacher and biological scientist. She is married with one adult child. Ethnic background: White British.
Matters came to a head when I went to the gym and apparently, my heartbeat was very elevated, so after, that had been like that for a few months and I’d given up caffeine and all the normal things one does, I went to the doctor and just said, I wasn’t really concerned, I thought I’d been overworking, could they just confirm that I had been overworking? And the locum doctor very kindly said she’d give me a complete work-up. She agreed with me that I was probably working too hard, perhaps a bit stressed. My father was extremely ill at the same time, which wasn’t helping things. And she gave me a full work-up and when I went back for the blood results she was obviously very agitated.
She referred me to a haematology clinic and unfortunately it took well over four months for me to get an appointment, by which time I was concerned because my fatigue had got worse, I’d had an episode of bruising and bleeding and I had a fairly good idea what the blood results that I’d seen on her screen actually meant, so I was concerned. At that time I didn’t know there was any difference between chronic leukaemias and acute leukaemias. When I finally got to see the consultant I had more bloods done. There was another five week wait before I went back and he explained that I had a condition called chronic lymphocytic leukaemia.
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.
Claire is married with 3 children aged 17, 11 and 9. Ethnic background: White British.
And I also didn’t really want to know what he was suspecting that I had. I really didn’t want to know because I didn’t want to know because I didn’t want to be worried about something I didn’t need to be worried about. So I said, ‘I don’t want to know what you think I might have until you know for sure’. So he agreed to that and of course my husband wanted to know every last detail what it might be and everything else, but I really didn’t want to know. So he said, ‘Come back in a few hours and I might know more’.
I went bowling, which was really a strange thing to do seeing as I was so tired. And the consultant said it was a really strange thing to do as well. We went to the marina to go bowling, and I remember, just to take my mind off it really, and I was in a daze and I just couldn’t believe that within a, from a few hours before I might be really seriously ill. I’d suspected I might be really seriously ill, and yet I was still standing and my life, you know, it was really odd
So we went back a few hours later, and the consultant said he had an idea of what he thought it might be. And I said, ‘Please, please don’t tell me, I don’t want to know, thanks, because I don’t want to worry, unless you are a 100% sure’. He said ‘No I’m not. I’m going to get you seen at a specialist hospital, and I’m going to send your bone marrow to a specialist hospital. So within a week, I think he did tell me actually that I might have leukaemia, yeah, but it took a few days, and I was getting cross by then because he was a bit, he didn’t really want to tell me, I felt, even though I’d said I didn’t want to know I then got frustrated. And my dad came over to look after the children and I went with my husband and I said, ‘I can’t wait any longer, I do need to know now’. So I needed that time just to get my head together a bit. And he said ‘I think you’ve got Myelodysplastic Syndrome, which is a pre-leukemia but it’s, you will probably need some chemo and a bone marrow transplant. Oh don’t worry because I know somebody who is 2 years out from a bone marrow transplant’. And I remember the only thing I asked was, ‘All I want to know is will I see my grandchildren?’ And he said, ‘yeah, I think you will’. But he seemed a bit nervous. I don’t know, I can’t really explain.
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.
Elsa is a retired business owner. She is divorced with no children. Ethnic background: White British.
But however, in 2004 in the July I was at home and I noticed that my gums were bleeding. And my gums, they weren’t just bleeding, they were pouring with blood. And I did phone the NHS Direct because it wasn’t long after I had been out of hospital from having the stroke. And I did phone them and they did say to me if I could stand I didn’t warrant an ambulance, so I didn’t bother with an ambulance, I didn’t think anything about it. I just thought, “Well, I’ll just get on with it.”
The little girl from next door came in, and she was ten, I opened the door to her and she just burst into tears because I was just flowing with blood. And she went running home to her mummy and said, you know, told her mother whatever, and then her mum came to the door and she said, “Elsa, I think you should go up to the hospital. I’ll take you up to the hospital.” So I did go up and I said to her, “Don’t worry about me”, I said, “I’ll be fine”. I said, “I’ll probably just go into A and E and they’ll do whatever and then I’ll be home. I’ll get a taxi home so don’t wait with me. Don’t be troubled.” So anyway I went in and not realising that I was so ill. And they took blood from me and when they tried to take blood from me they couldn’t get a vein and the whole of my body just went purple like dots all over me, a purple dotted body as I called it. And I mean I was still laughing about it and still not realising that I was just so ill. And anyway I was put into a cubicle. I had to stay there. I was isolated.
And then the next morning, right away they got me onto platelets. They got me a platelet transfusion and I was taken into another ward and isolated again. And then the next morning they came, they did a biopsy and very quickly I got the results. The consultants came to me and oh, they were just so lovely. And they said to me that I had MDS. Well, they did a bone marrow biopsy then and then they came back and they said, “We’ve got good news for you. It’s not acute leukaemia. It’s MDS that you have.” And I said, “Oh, that’s fine then. I can go home. After you’ve treated me I can go home.” And they said, “No, I’m sorry but you’re very ill. It means that your bone marrow has collapsed and you’ve got no cells in your bone marrow. And we will have to send you up to a London hospital.”
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).
Frances is a Project Manager. She is in a civil partnership and has no children. Ethnic background' White Scottish.
But this is going to sound really soppy, and I’m not a soppy person, but I remember when they told us that I had leukaemia and that it was quite serious and, you know, with my age and all that sort of stuff, and they’d said to me, ‘Do you want to know what your chances are?’ And I said, ‘No. I don’t want to know.’ He says, ‘It’s just a lot of patients ask that and we can.’ Basically what he was trying to say was if you ask me, ‘Am I going to live?’ he can’t say yes and he can’t say no. They don’t know, right. And I think that was his way of couching it. And I said, ‘No I don’t want to know because if you tell me there’s a seventy per cent chance that I’m going to relapse then I’m going to be worrying seventy per cent of the time and I really don’t want to do that. You know, I, whatever, if I’ve only got thirty per cent I want to make the most of that’, I says, ‘But I really don’t want to know. I don’t think it solves anything. I don’t think it helps anybody.’
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Thelma is a retired waitress. She is married with one adult child. Ethnic background: White British.
You always say to yourself, ‘I wonder what you’d do if someone told you you had so and so to live?’ You always talk about things like that, just say, when you hear of someone dying, you think, you say to your friend or yourself, ‘Oh I don’t know how I’d be if I was told I only had so and so to live.’ I can’t explain it. I know when I was first told and they let me have a little while to discuss what I was going to have done, I remember saying to my niece, ‘I can’t’, I said, ‘I don’t believe I’ve only got six months or a year, whatever’. I said, ‘I don’t feel like I’ve got it.’ So she says, ‘You’ve not. You’ve not.’ And I don’t know why, I just never accepted I’d got that long to live, or I don’t want to know, put it like that, I’d rather not know. I know they have to tell you but if you’d asked my opinion, ‘Do you think it’s better to tell them?’ In my opinion, no, but then you’ve got other people say, ‘Yes I’d like to know to put my things straight.’
We all know we’re going to die, as I said to someone, because someone said, ‘Well we’ve all got to die, Thelma.’ I said, ‘Yeah I know and I’ll accept that.’ I said, ‘And we’re all lucky that we’ve been on this earth as long as we have and gone through life with no illness.’ I said, ‘But we don’t want to know when we’re going to go.’ I said, ‘You could not wake up tomorrow but when you’re told you’re going to die, every time you look at the next day you think, is this my last day?’ But I said, ‘When you don’t know that you carry on going to work, doing things. You don’t even think about it. You think about your next year’s holiday.’ I said, ‘But when you’ve been told you’ll die you can’t seem to focus on next year’s holiday’. I know you should do but you can’t. And when my sisters say, ‘We’ll do so and so’, I do say, ‘Yeah we will’. And I think. They say, ‘And don’t say it, that you won’t be here.’ And I think, ‘Oh I hope I’m here for it’. And I think, ‘God willing’, but…
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.
Marilyn is a retired administrator for Oxfam. She is married with one adult child. Ethnic background: White English.
It was in the June that I went to the local hospital, saw a consultant. It was a very laid back interview. Nothing what I expected. I think I expected to have to be rushed into hospital and have treatment straight away. It wasn’t like that at all. He explained about the leukaemia I had was chronic lymphatic cancer, lymphatic I think. It wasn’t acute. It wasn’t dangerous. It was something that would progress but it wouldn’t necessarily kill me, it would be side effects of it.
So that was something to take in. I think at these stages you don’t take everything in at once. You can’t remember what people said. You come back from these consultations wondering if you’ve heard everything. Basically, it’s, as I say, a chronic condition which would never go away. Once you’ve got it you’ve got it but they can treat it and you can go into various remissions and I’m in one at the moment.
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Glyn is a retired management accountant. He is married with two adult children. Ethnic background: White English.
And then they were thinking then in October, in October they said, “We’ll have to give you stronger chemotherapy tablets.” And I went in in November to the main hospital for some more blood and the two specialists from the local hospital said, “We’re going over to the regional specialist hospital to the haematology.” So he said, “We’re going there now to this conference.” And I think they must have taken a sample of my blood actually so they could do some cytogenetic tests on it. And it came back and they said they wanted me to go to another hospital now and so we went there at the beginning of December. And this is when we saw the first older specialist, a professor, and he said, “Oh, yes, you’ve got CLL with this p53 gene.” So I said, “What does that mean?” He said, “Do you want me to give it to you?” I said, “Oh, yes tell me properly.” So he said, “You’ve got two to three years.” So we were quite upset really at that.