Most people diagnosed with chronic lymphocytic leukaemia (CLL), and some people with myelodysplastic syndrome (MDS), do not need immediate treatment. Those who feel well, have no or only mild symptoms, and whose blood cell counts are only slightly abnormal, will be regularly monitored by their specialist or by their GP for months or years until the illness changes and treatment is considered necessary. This is called ‘active surveillance’, ‘watchful waiting’ or ‘watch and wait’. Research has shown that people who are monitored in this way do just as well as those given chemotherapy at once, and they are spared the unwanted effects of treatment. Some even avoid treatment altogether.
People we spoke to reacted in very different ways to being put on watch and wait. Although many had been reassured to learn that their condition was not immediately life-threatening, some couldn't understand or accept that their 'incurable illness' didn't need immediate treatment. This went against all their previous experiences of cancer in other people. It was also hard to explain to friends and family who often didn’t understand why they weren’t having treatment.
Len found it hard to understand how he could have cancer, yet it wasn't making him ill and he didn't need treatment. Watching his blood counts and waiting for his CLL* to progress was horrible.
Len found it hard to understand how he could have cancer, yet it wasn't making him ill and he didn't need treatment. Watching his blood counts and waiting for his CLL* to progress was horrible.
Age at interview: 79
Sex: Male
Age at diagnosis: 78
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Of course, in the meantime I mean I’d been having talks with him and he was telling me that there’s no treatment for it. That’s why it’s called chronic and it’s just, there’s nothing we can do until we get into very late stages when they do try chemotherapy but only if it’s absolutely essential otherwise as far as he’s concerned there’s no treatment. Well, I can’t say I was very happy about that because bad enough to know that you suddenly find you’ve got cancer but they’re not going to treat you. It takes a bit of digesting and I don’t think I’ve fully digested it even now, because I went back to him again four or five months later for another blood test to see the progression and really it hadn’t moved. And then I went another, the last time I saw him was about May or June and again the results were stable, to use his word. He said, “It’s stable.” So but the typical diagnosis of the CLL is there, the platelets or the whatever you call them, I’ve got all the results there if you want me to record them but I’ve got it all. And it certainly is over the top in some cases and under the bottom in other cases. Where it should be a certain level, some are over and some are under, and it is definitely CLL. And again he said that it’s sort of the early stages of stage two. No treatment, nothing, no pills, no hospital, no nothing, absolutely nothing, nothing can be done.
Well, I’m not, I’m still not very happy about it but what can I do? I mean the man is a haematologist, I can’t do anything about it.
It’s not something I understand because if you’re ill you’re ill. And I’m not ill, but I am ill. So it’s not something I completely understand and that’s part of the frustration. Because all the friends that I know that have got cancer, they’re ill, and they really are ill and we keep losing them, you know, my wife’s just lost her best friend a couple of weeks ago. And it’s one of those things in life that people do have cancer, they get ill and they die. Some of them recover but eventually it comes back again and it’s a horrible thing. And I’ve got one of those, I’ve got it, but it doesn’t show, it doesn’t affect me, so what can I say?
So really the crux of your not understanding is how can you have cancer but it doesn’t make you ill?
And you can’t do anything about it and you’ve just got to accept it. Well how can you accept it? You can’t just accept it. Well, you can, I mean you have to, but it’s very frustrating.
But the main thing was he told me that there’s nothing they could do about it. We just wait and see, this thing that they call wait and see is a horrible thing. To go to a doctor and he says, “I can’t do anything for you. You’ve just got to wait and see.” Wait and see what? Wait until it get progressively worse, that’s what you’re waiting to see. So it’s not a pleasant experience to wait and see because you know it’s there and you know it has been progressing over the past few years because I’ve got the statistics to show it. Okay, so for six months I’ve been stable it doesn’t mean to say it’s stopped. It’s obviously going to carry on and it’s going to get worse and eventually it will start showing symptoms I presume.
Watching and waiting could therefore be unsettling and worrying. One man described it as ‘slightly reassuring but odd’ - like waiting at an airport for a delayed flight. Janet considered it a form of torture and Jane dubbed it ‘whine and worry’. Len found that although his consultant repeatedly said to him, ‘Don’t worry, just carry on’, this was not easy to do. Even when people understood the rationale for watching and waiting they still found the lack of treatment frustrating. Deirdre had initially wanted some treatment but after she had digested what she had been told she realised that the longer she went without treatment the better. Others were glad that they didn’t need treatment.
The illness often had no outward sign: people looked and felt the same but knew they had an incurable cancer. Some said this made sympathy hard to come by - they sometimes wanted something to show for their illness.
Marilyn felt that her CLL* was invisible and that people who she had not told about it would not understand why she felt miserable.
Marilyn felt that her CLL* was invisible and that people who she had not told about it would not understand why she felt miserable.
Age at interview: 62
Sex: Female
Age at diagnosis: 54
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I think it hit me much more in a psychological way because having leukaemia, having a blood cancer is totally different from having something like breast cancer where it’s so much more physical. Having a tumour is physical, so it felt like a very invisible disease, which is quite difficult when you want to tell people that you’ve got this and from the outside you don’t look any different from the day you didn’t know you had it to the day that you know you have it. That’s quite hard to take yourself let alone to have to tell people. So you’ve got this quite difficult thing about wanting to tell people and not wanting to tell them because you haven’t really got anything to say because you’re watching and waiting, which is quite a difficult thing, I think, for cancer patients. Nobody wants to rush into chemo or radiotherapy but at the same time you feel as if you need to be treated. You know, if you had a broken leg they’d put it in a plaster and you’d hobble about for eight weeks and then you’d be all right. With leukaemia and chronic leukaemia you can’t do that.
But I think it is a strange situation watching and waiting, and I’d never really thought about it before. You feel in limbo, you feel as if you almost want something to show that you’ve got leukaemia, which is a very strange state of mind, whereas if you’ve got a broken leg or a broken arm, you can sort of, people know immediately. That’s quite a strange thing to want people to know. I did get over that after a while. I didn’t have this awful sort of, I suppose it’s a guilt feeling because you’ve got leukaemia, you’ve got cancer but nobody can tell and they’d just think I was miserable. I think that’s a lot to do with it. You know, if you meet people that you hadn’t seen for a while, do you explain your situation or just say, “Yes, I’m fine”? That’s quite hard.
Most people felt they didn’t know enough about CLL and how it might affect them. Several had no one to talk to about their concerns in between consultations and felt isolated. Talking with other people with CLL helped Jane to feel better about her illness. Others said they would like to meet other people in the same situation as themselves.
Janet was told very little about CLL* and had no access to advice between her watch and wait consultations; neither her GP or the leukaemia charities could answer her questions.
Janet was told very little about CLL* and had no access to advice between her watch and wait consultations; neither her GP or the leukaemia charities could answer her questions.
Age at interview: 70
Sex: Female
Age at diagnosis: 63
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Tell me about what it’s like to be put on watch and wait at the beginning.
Well when you’re first diagnosed you have so little information and so little knowledge and nobody wants to tell you anything in case it frightens you, which frightens you even more if you want to know something. So you get the various books from the various organisations and charities and they tell you the bald facts, which probably frighten you more because they’re written by professionals not by people who are actually experiencing it. And if the watch and wait to begin with, as I have found with several people that I support, they just find it very, very difficult. Because you have nobody to contact if something occurs and you think, ‘Well I’m not going to be seen for another six, nine months, who do I contact?’
So you go to the GP and with the best, and I do have two superb GPs, and you ask them and they say, ‘I’m sorry I don’t know. You’ll have to ask the specialist when you finally see them but I don’t think it’s worthwhile kind of making another appointment yet.’ So there’s nobody you can ask, and even when you contact the various charities they all, as is correct, say, ‘Well we’re not really able to give out medical advice.’ So who do you ask? Watch and wait is a form of water torture I think actually. If there were nurses available that you could phone up and say, ‘Look. I’ve got this problem. Should I expedite my next appointment, or is it safe to wait, or could I just come in and talk to you?’ But there’s no back up as far as I’m aware. No back up whatsoever.
So they don’t say, you know, ‘If you’re ever worried you can ring up the clinic’?
No.
No. Mm.
In fact at the local general hospital there was nobody actually called a leukaemia nurse there. I think they’ve finally got somebody who is part time who works three days a week, 9.30 until about 2.30 and working mainly in the chemotherapy unit, which is appropriate but, you know, even watch and wait on low grade you still have your worries.
Talking to other people with CLL* has helped Jane' she knows that others feel the same way about it and that she is not alone.
Talking to other people with CLL* has helped Jane' she knows that others feel the same way about it and that she is not alone.
Age at interview: 55
Sex: Female
Age at diagnosis: 51
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So what’s it like being on watch and wait all this time? What’s it do to you mentally?
I don’t know really. I think it’s an awful lot easier now when you’re in touch with other people. And there are sites in the world you can go to and you can really blow off steam, and you find that other people feel the same way too, and that helps an awful lot. Because I think your partner probably knows what you’re going through and what you’re feeling but very few other people do. And if you try and explain to friends what you’re going through and the fact that you’re still waiting for treatment, and when you have treatment you know you’re going to have treatment again and wait in the meantime, they get puzzled and they don’t understand that it’s slightly stressful. Talking to people is the best thing because then you can sort of get it off your chest and feel better about it. It’s sad and it’s really rather horrible saying you know you’re not the only ones, that you feel better, but unfortunately that’s the way it works, for me anyway.
Some people were more successful than others at putting their illness to one side and getting on with their lives while watching and waiting. Marie said that after the initial shock of the diagnosis she managed to forget about her CLL most of the time and get on with her life. She hated it when people asked how she was.
Being on watch and wait requires a hospital visit for a check-up every few weeks or months or yearly depending how stable the illness is. Check-ups include blood tests, sometimes a physical examination for a swollen spleen or lymph nodes, and a chat with a doctor. Many patients have checks done in their local surgery which avoids the need for hospital visits. Some people had blood tests at the GP surgery a few days beforehand. Some people kept their own records of the blood test results. Some went to the hospital with a relative to help take in everything that was said.
Alex has six-monthly check-ups with a consultant; he is unaware of having any symptoms and doesn't know what to look out for; he doesn't think about his CLL* as he has other, worse health problems.
Alex has six-monthly check-ups with a consultant; he is unaware of having any symptoms and doesn't know what to look out for; he doesn't think about his CLL* as he has other, worse health problems.
Age at interview: 87
Sex: Male
Age at diagnosis: 85
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So how often do you have to go up to the hospital to see somebody about your leukaemia?
Alex' Every six months.
And what do they do when you go there?
Alex' They weigh you, blood, and then we go and have a chat.
Doreen' To check him.
Alex' Oh, they’d feel around you.
Oh, they check you for glands.
Alex' Yes.
For swollen glands.
Alex' For glands, yeah. Some do and some don’t. The thing is I don’t see the consultant himself very often. She’s usually the one who’d help us out. Whatever.
So did they ever find any swollen glands or anything when they check you?
Alex' No, they’ve never found anything like that, or my own doctors.
Yeah. And do you follow the results of your blood tests yourself or do you just leave it to the doctors?
Alex' Leave it to the doctors.
So as far as you know it’s all just still the same?
Alex' Just the same, yeah.
So would you know what to look out for…
Alex' No.
…in terms of symptoms? So what do you expect to happen, if anything, with your leukaemia?
Alex' No idea.
And you don’t care.
Alex' I don’t want to know. Well, you can have it if you’re okay today and in six months something’s happened. A lot can happen in that time they told me.
Yeah. So you’ve had quite a lot of health problems in the last decade or so.
Oh aye.
Doreen' In the last six years, yes.
Alex' Yes.
So in the grand scheme of things, how important is the leukaemia to you?
Alex' Very unimportant at the moment.
Len has six-monthly check-ups at which blood is taken and he is examined for swollen lymph nodes and spleen. His consultant is pleasant and methodical but not empathetic.
Len has six-monthly check-ups at which blood is taken and he is examined for swollen lymph nodes and spleen. His consultant is pleasant and methodical but not empathetic.
Age at interview: 79
Sex: Male
Age at diagnosis: 78
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So how often do you have to go and see the consultant?
Well, the last time I saw him he’d booked an appointment for six months. So he’s just watching the onset of it but six months from the previous appointment there was actually no change.
So what happens when you go to see him?
He takes my blood test. He takes the blood. He sends it up to the pathology department. For ten or fifteen minutes we talk about nothing and then the blood test comes, the results, they phone him through the results. He writes them down. I write them down as well because I’m watching it as well, and I’ve got a little table showing me how it’s progressing. And we make another appointment for six months and we go home. And it’s frustrating.
And what’s your opinion of him?
Not much. I mean he’s okay. He’s a very nice fellow but his bedside manner is not marvellous. And that’s one of the reasons that I want to change because he’s not sympathetic or anything like that, he’s just doing his job. He’s methodical. He’s a very nice fellow, nice young man and we talk while we’re waiting for the results, we talk. He does examine me, you know, he looks for lymph nodes and the spleen and all that sort of thing. I said to him last time, “Do I need another scan for the spleen?” He said, “Well, no, not really necessary.” So but that is the one thing that I think, apart from the spleen he would have almost written me off, it was, I’m wasting his time. But once he got the results of the enlarged spleen then he realised that it was more serious than he thought. And he immediately moved me from category one into category two.
Some people were dissatisfied with their consultations - the examinations seemed superficial and the doctors didn’t take enough interest in them and how they were feeling or appreciated the impacts that the illness and watching and waiting had on their life. This problem was compounded if they saw a different doctor each time. One woman said she… “Just want[ed] to be recognised really, that you have got something wrong with you, however major or minor”.
She sees one of 3 consultants at her 3-monthly check-ups, the consultations are very short, the doctors don't ask her how she feels, take little interest in her and dismiss her symptoms.
She sees one of 3 consultants at her 3-monthly check-ups, the consultations are very short, the doctors don't ask her how she feels, take little interest in her and dismiss her symptoms.
Age at interview: 75
Sex: Female
Age at diagnosis: 72
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Then I went back to this strange other consultant who wasn’t quite so clever and I went a fortnight ago and I had a ten past two appointment and I was seen at half past three. He had two people in front of me and he just does not bother. He takes people in and you hear them laughing in the consulting room and they come out with bits of paper and then fifteen minutes later you’re, or another patient is asked to go in. And I had another appointment and I knew I wouldn’t be very long with this particular man because he doesn’t seem to know what he was talking about. And he regarded me as completely insignificant. And I was in and out in one minute and a half. That’s it.
So how did you feel all that time that you weren’t having any treatment?
Invisible.
How did you feel about it?
Completely invisible.
Can you expand on that?
Well, nobody seemed to take any notice of me. The consultants weren’t interested. I asked them the symptoms and they didn’t give me any answers. I said, “I’m so so tired. This depressive tiredness is overwhelming feeling.” They just still didn’t say that it was connected. I don’t know if it is or it isn’t.
Okay. So but how often did you go and see somebody in that period?
Every three months.
And what were they doing at those check-ups?
Nothing. They just ask, they just, previous to the consultant’s visit I have a blood test the week before. They just look at my blood test, tell me the white blood count and make an appointment for the next three months.
Okay. So in the meantime, you’re back to going up there every three months are you?
Yeah.
So you’ve had two different consultants so far.
Three.
Three? One that you weren’t particularly enamoured with.
Ah, dreadful man.
Would you like to expand on that?
Well, he is long winded in as that he fumbles around with papers, he can’t find your notes, he just looks at you blankly, he doesn’t examine you, he doesn’t ask you any questions. The other two are much the same really but they do seem to be a bit, they seem to show interest whereas the other one doesn’t. But there’s no, I’m only ever in there two minutes at the very most at any time.
Some people we spoke to had not yet had any treatment for their condition, neither had their doctors suggested that they would need it. Some didn’t know what kind of treatment might be offered in the future or whether they would want to put themselves through it. Having read up about CLL and the watch and wait policy Jane persuaded her consultant to put off treating her until later.
Jane's consultant was considering treating her soon after her CLL* diagnosis but having read about watch and wait Jane asked if she could wait. She is still waiting 4 years later.
Jane's consultant was considering treating her soon after her CLL* diagnosis but having read about watch and wait Jane asked if she could wait. She is still waiting 4 years later.
Age at interview: 55
Sex: Female
Age at diagnosis: 51
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Through all this time I didn’t have treatment. I was very lucky that I went on to a website literally the day before I saw the consultant for my results, and came across a piece on CLL Topics about chronic lymphocytic leukaemia, which said that it wasn’t really necessary to treat until the disease reached an acute stage and that it wasn’t usually a good idea to treat in early stages. So although I didn’t know what stage I was at, I did have that one little snippet of information which was stuck in my mind. I went to the appointment when he told me the diagnosis and he immediately said that he had plans for my treatment. And I asked if perhaps it was necessary and if we could wait, and I’m still waiting all these years later. Luckily, I’m still not in an acute enough phase to warrant treatment yet. It’s coming up fairly soon but not yet.
After months or years on watch and wait, others had one or more courses of treatment with more watching and waiting in between. The need for treatment was indicated by a combination of high white blood cell counts and worsening symptoms. A woman seen by three different consultants said they had disagreed over the need to treat her.
Marilyn explains why it was decided that she needed treatment after 5 years of watch and wait and that although she was anxious about it she felt ready for treatment.
Marilyn explains why it was decided that she needed treatment after 5 years of watch and wait and that although she was anxious about it she felt ready for treatment.
Age at interview: 62
Sex: Female
Age at diagnosis: 54
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So what made them decide that you needed treatment after those five years of watching and waiting?
The white blood cells go up, which make the red ones that, they crowd the red blood cells out, and you obviously need your red blood cells for iron and oxygen in your blood. And also it reduces your haemoglobin, which is your anaemia levels. And you also get very, very tired because your body is, you’ve got platelets, you’ve got white blood cells, red blood cells, and if you’ve got an imbalance then you’re going to get very, very tired, and the anaemia levels went down to quite a low level. And also the red blood cells were going down as well. So after about five years, and I was getting very tired, they decided that it was probably the right time.
It was a definite watch and wait for the first five years because they don’t want to give treatment unnecessarily because if it’s done too soon it’s not going to be enough and you’d need it again in another eighteen months. And they also look at a very holistic approach. They don’t just look at the blood cells and numbers. It’s not just number crunching, it’s how the actual patient feels. And I was beginning by then to get very, very tired. So they thought that in 2005 that was the optimum, with all the blood readings and how I was feeling, that that was the best time to start.
And then obviously the nearer it got to having it then you worry about having treatment. But you felt that they gave you very positive feedback on the effectiveness of the treatment, the fact that it had been going on for something like forty years, the fact that someone in my position, who was reasonably healthy, stood a good chance to respond to the treatment well. So there was quite a lot of information. But I think by the time the five years was up I was ready because I was feeling desperately tired, and obviously if you get very anaemic then you’re going to pick up all sorts of things, so that’s something they obviously don’t want. They want to try and avoid that.
One of her 3 consultants started her on treatment that neither she nor another consultant thought was necessary at that time.
One of her 3 consultants started her on treatment that neither she nor another consultant thought was necessary at that time.
Age at interview: 75
Sex: Female
Age at diagnosis: 72
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From that point I had regular three monthly check-ups with a lovely consultant, really, really nice man in the local hospital. Then I was transferred back to the local area here and was going for three months and the blood count went up and up and up and up. And it got to 51 and I saw a particular consultant who was rather tricky. And he put me on chemotherapy tablets with gout pills and anti-sickness pills and it was rather daunting, very, very daunting because I didn’t want to take them. I didn’t feel ready, that I was ready to take them or the situation was ready to take them, because they’ve always been extremely blasé, the consultants, with me' “Oh, there’s nothing wrong with you. You’re all right. I’ve got people with blood counts of 200”, which makes you feel great, you know, because you feel totally invisible, completely invisible.
And then the next time I went to see, after the chemotherapy, it was a two week course, I went to see this nice consultant again and he said, “You shouldn’t have been on that. I wouldn’t have put you on that. You’re not ready for that.” I said, “Well, why did they do it?” He said, “Well, you could have said.” I said, “Me against a consultant. I stand no chance. I have to believe that they are doing the right thing.” And since then I’ve just had three monthly visits and that’s it, no information whatsoever.
See ‘Living with the symptoms of CLL’ for information about the impact of symptoms on people’s lives while watching and waiting. Leukaemia Care also has a useful leaflet on living with watch and wait the link can be found in our 'Resources and Information section'.
*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: December 2018.
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