Check-ups

Most people who have cancer continue to see a hospital doctor or oncologist for a few years after their diagnosis for regular check-ups. These check-ups usually involve tests or examinations to make sure the cancer hasn’t recurred. This means that the kinds of tests that happen at the check-ups depend on the kind of cancer each person had. For instance, we spoke to Claire, who had colorectal cancer, so received regular colonoscopies, but Wendy had regular mammograms to make sure her breast cancer hadn’t recurred. Other tests included blood tests or chest x-rays. For prostate cancer, there is a blood test called the prostate specific antigen (PSA) test that can provide information about tumour growth or recurrence. It is common for men with prostate cancer to have regular PSA tests to monitor their health several years after their initial diagnosis.
As people moved further on from their diagnosis, check-up appointments at the hospital usually became fewer and further in between. The time between appointments varied depending on the type of cancer but usually they moved from three monthly to six monthly and then yearly for a period of time. Wendy had check-ups for 5 years after her treatment for breast cancer; a man treated for lymphoma had check-ups for ten years afterwards.

As he moved further down the line from having had testicular cancer his appointments became…

Age at interview 36

Gender Male

Age at diagnosis 29

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So what happened after that, did you have to go back for regular check-ups?

Yeah they, I went, I think I had to go back and see the consultant after the treatment, it’s a very long time ago now.

My memory is starting to fail, but they then put you on the clinic, on the oncology out-patient clinic, and I was going every month. Some people only go every quarter; it depends. They all seem to be different, and they treat, I think they do it slightly different now to what they did. And it, I think it varies from town to town as well, from every oncology unit seems to handle it differently. But I was going every month. They take a blood sample every month and an x-ray and then the following month you have a blood sample but you don’t have a chest x-ray, so it was a chest x-ray. So it’s every other month you have a chest x-ray, every month they take blood. They give you a physical examination every month, have a feel around the remaining testicle and abdomen and round the neck and just check that there’s nothing going wrong.

Are you still having check-ups?

I am yes. They keep you under observation for 10 years. As I say, they start you off on, I was on every month, and I think that was for about the first year, then it went to every other month and then quarterly, and it basically steps up until at the moment I now go once a year and, as I say, I’m in the 6th year at the moment, so I’ve got another 4 to do.

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Some people liked having regular check-ups as it gave them reassurance that their cancer hadn’t come back. Several said they found it difficult when the time between check-ups was reduced as they felt reassured by regular contact with the hospital. Others found it stressful to keep returning to the hospital where they had their diagnosis because it brought back bad memories. A man living beyond testicular cancer said check-ups ‘had ceased to be reassuring, they were instead putting me back in cancer mode.’
It was common for people to feel very anxious or stressed before their check-up appointment and while waiting for the test results. As one woman with ovarian cancer worried about the check-ups because they could result in ‘bad news’ about her cancer returning. A man living beyond testicular cancer talked about his anxiety while waiting for test results from his check-ups, and wished he could sit down and talk to someone about his worries. A 40 year old man, following treatment for testicular cancer, found the constant fear of recurrence impacted on his relationship with his wife.

He still has annual blood tests to follow-up on his testicular cancer, and thinks it would be…

Age at interview 32

Gender Male

Age at diagnosis 27

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But even four years down the line, almost four years since I finished chemotherapy, you still worry. I’m having annual blood tests now, and from about a week before you have your blood test I find myself having difficulty sleeping and feeling quite anxious and uptight, and that doesn’t go away until maybe a couple of weeks afterwards. But it’s just basically because your subconscious, no matter how intelligent a person you are, you can’t switch off your subconscious from worrying about something. It’s a very, very difficult aspect to deal with. And I think in a certain way doctors and nurses could improve on that in terms of caring for cancer patients, it is the worry side of things. I think in the NHS our doctors and nurses are second to none in terms of the training that they’ve been given in treating people, but the psychological aspect of the illness I think could be dealt with a little bit better.

Especially under, in a system that’s under such a great amount of pressure, you know, you’re going into the cancer ward and you’re, there’s a, on the days that you’re going in for, like, just a check-up even, there are 15-20 other people all sitting there in chairs giving blood for their marker levels to be tested, and you’re waiting for an hour, you’re going in and giving blood and you’re way home again and you’re worrying about what the blood tests are going to show. There’s nobody actually to sit down and speak to and ask you, well how are things, and that would really help, but that is almost an impossibility with the constraints that are on the NHS at the minute, you know, to have that facility.

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Men living past prostate cancer sometimes also worried about their PSA test levels. Eric found it worrying when his PSA test levels started rising seven years after he was first diagnosed with prostate cancer.

Eric described how it was frightening when his PSA level started to rise. It was unclear what his…

Age at interview 81

Gender Male

Age at diagnosis 71

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Until then I was all right, you see. But the trouble arose with the following test, which took place in 2007, when the PSA reading had doubled. So I waited for another six months, took another test, and it had doubled again, and that’s when I started to get a little bit anxious about it. So I asked the GP, and he said, Well, there’s still no problem about it. don’t worry, because the levels are very, very low, you se. He never told me exactly what the level was when I should start worrying medically, you see.

Yes, you see this level stayed down for all these years, six years, until June 2006 it was point three eight. In December two thousand and six it went to point five nine. In March it was five point eight, the following March. The following July it was five point six eight. So there’s not much difference. Then point eight two, then point eight five, so all of those four or five readings it had more or less, it had grown a little bit, but it had stayed down, and then in October 2008 it suddenly went from point eight five to one point four. So that was a big jump, you see, and then six months later it went from one point four to two point six. So you can see the climb, the steepness. December, six months later again, from two point six to three point seven. So I expected this last test, right, to increase by the same amount again, so I expected about five point two, five point four, something like that, you see, or even six, but it wasn’t. It was four point two. So I can’t make any sense of that other than to say I was relieved. Anywaynbsp;

It can be quite worrying to see that sort of trend and then to know that it’s not got that bad and it’s

Yeah, yeah. I was looking at the percentage difference in the climb rate, and it went, at one point, it was eighty-five per cent higher in six months, and that frightened me, see, and now, of course, it’s much better. So some people might argue that you’ve got this information and you frighten yourself to death, but I don’t look at it that way. I look at it from the point of view of it’s like looking at the fuel level on your car. You’re driving along, fuel level is going down and you think to yourself, I must get to a station before I run out of petrol altogethe. it’s that sort of attitude really that I’m adopting, and so I’m happy with four point two.

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Several people said that as the years went past they felt less anxious about check-up appointments because the chances of their cancer returning was reduced.
It was common for people to stop seeing a hospital doctor altogether about cancer-related issues after three or five years. At this point, it was usually their GP who became the first point of contact for any questions relating to their cancer. People had mixed feelings about not seeing their oncologist anymore. Michael (Interview 35), who had prostate cancer eight years ago and still sees his consultant on a regular basis, described how he thought it was important to keep seeing a cancer specialist instead of his GP.

Michael still sees his cancer consultant eight years on from having prostate cancer. He thinks it…

Age at interview 72

Gender Male

Age at diagnosis 64

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And you mentioned that you’re still seeing your consultant on
Yes.

regular basis then. So what does that involve, going and just having a check-up or

Yes, it involves having a PSA taken. You go along, it tells you where you are and what the possible diagnosis is, and there is quite a lot of research going on in that area as well.

So at any point has he said to you that he’s going to discharge you from his care…

No.

nd you can have your follow-up from your GP or anything?

I think one of the important things is if you’ve got cancer you need to see a cancer specialist. I mean if I’d gone to my GP, let’s assume I’d just taken the result of my examination at work, where the medically qualified person, who was a GP, did a digital examination, which means sticking a finger up your bottom, as you well know, she found nothing.

So if I hadn’t had the PSA done then I would, because I showed no symptoms whatsoever, and I think that’s the important part. I showed no symptoms, which is why people normally go to their GP and say, I’ve got these problem. And then the GP will say, Aha, that’s probably, I’ll send you off to a specialis. So no, I think you need to see a specialist.

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Alan had some of his prostate cancer treatment privately; 10 years on he still has a PSA check…

Age at interview 80

Gender Male

Age at diagnosis 69

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And that seemed to do the trick, and since then I’ve been having a series of six monthly checks, readings have been very low. They have more recently been, again, showing a slight tendency to rise but at an extremely low level, so I’m going along like that at present. And that really is the present situation of it.

So where do you go for your six monthly checks for the PSA levels?

Well, I have medical insurance, so I’ve been going, in fact, alternately to [private hospital] and [other private hospital], both in [local town].

So you don’t have to go through your GP to get those?

No, no I don’t. That is arranged directly with my consultants. I still have the two consultants, the oncologist and the surgeon, though I’m tending more now to see the oncologist.

And how, so I suppose that means that you haven’t been formally discharged then from your hospital care. Have they at any point said to you?

Well, I was discharged from surgery and discharged from radiotherapy, yes. But I suppose it is an ongoing thing. I think I remarked to you when we were on the phone once that, you know, you can never really claim with cancer, in my experience, to be following cancer, it’s finished with. It never really is because you go on being monitored and so on, and I was told I was going to be monitored for the rest of my life.

So how do you feel usually before you go for a PSA test? I mean do you ever feel anxious or worried about?

Not especially, no. I think there’s a moment of mild anxiety before going to see the consultant to get the result, but it’s become fairly routine this really. On the whole, I suppose I’m not a great worrier.

And when you have a PSA test conducted, do they give you the results immediately or do you have to?

No, what usually happens is that I arrange the test myself and pop into the hospital. They take the blood test and I also, at the same time, arrange a consultation a week later with my consultant to give time for him to get the results and then I go and see him. Now, possibly on national health that might not work in the same way. I think it’s probably done at your local GP’s surgery and you probably ring up and get the result. In fact, I know that when I’ve had a blood test for something else on national health, what seems to happen is I ring the surgery and they say, Oh, yes. it’s norma, and that’s all the information you get, whereas I get the full details of the actual reading, which I like to have.

If you worried about your cancer, who would be the first person that you would contact to get information or advice?

Well, if it was to do with an existing cancer, let’s say the prostate cancer, then since I’m seeing my own consultant six monthly on that, unless it would seem rather pressing, then I would probably raise it with him when I went to see him. In recent, you know, the recent two or three times since I had the, or two or three times ago, the oncology consultant said, did I wish to go on seeing him six months, because if I preferred, he could just write to me with the result each time and leave it at that. But I said, N. I thought it was quite useful to make it in to actually see him every six months, and that’s the opportunity to discuss things. So that’s the way it’s gone on.

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Others were relieved to not have regular hospital check-ups as it signified that they were better. A man living beyond testicular cancer said that when his check-ups ended it was ‘wonderfully liberating’. One woman living past cervical cancer felt it was ‘very nice’ to get the all clear and not have any more check-ups, especially as going back into hospital brought back painful memories of her illness. It was an achievement to have the final hospital check-up for one man who was living fourteen years past a diagnosis of lung cancer. He described being ‘euphoric’ when he was told he never had to come back for another check-up.

She was relieved when she no longer had to go back to the hospital for check-ups after having…

Age at interview 42

Gender Female

Age at diagnosis 36

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And how soon after that did you get the all clear?

Well only just last year, you have to have five years of going on a yearly return. But they said at the hospital that I was very sensible, I lived near and he knew that if there was a problem I would ring up, which I would. But I found the years went very quickly, and I hate having the internal examination and it seemed like I’d only just been one year and I was, it was January again to go back. And I said to him, oh, I said to my husband, "Ooh I can’t go", but I always went.

Did it affect you in terms of, I mean you described the terrible feeling that you might be going to die, that you had originally.

Mm

Did that change over the years before the time when you were told, "No you’re really alright"?

No once I’d finished the treatment I think both the doctor, you know, it was sort of joint with [consultant] and [consultant], it was joint care, and they were both very reassuring when I went. And [my GP] was always very supportive. I think once I’d finished the treatment I was alright, that they’d done the best they could. So I felt ,yes, I was alright.

What about when it was coming up to the time when you were having to go back for a check-up?

Oh I hated it. I mean now when I walk in the hospital, I go into the main entrance and I go down by the chapel and go round the corner, oh I dread it, I dread going in there, it brings so many memories back. It brings back so much pain and so much hurt. And, you know, I sit in the waiting room and I have this sort of ten minutes, quarter of an hour with the doctor and then I go. But it just reminds me of how sick and ill I used to feel, and I used to hate going every afternoon, and my waterworks all went wrong and I was forever spending a penny, and all kinds of things like that. I still don’t like going in there now. When I go down that bit, I can go and visit anybody else in the hospital apart from going down to that bit, I don’t like it.

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He felt euphoric when he was discharged from hospital follow-up thirteen years after having lung…

Age at interview 56

Gender Male

Age at diagnosis 42

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Yeah, and the final review that I had, that happened to me and then he discharged me, the doctor and I couldn’t believe it, it was quite emotional really. Because I’d said to this guy, I reckon I’ve probably been coming here longer than you’ve been in this game’, which I had. And then when I went out I was so euphoric, if there’s such a word. The nurse asked me when I was going to come along again. I said, Never’, and give her a big kiss on the cheek.

And I immediately went down, right back to the waiting room to tell the people there, and I went there and it was all men, and I just held me hands up and I shouted, Lads’ – and they’re all sitting there with their faces down there because they’re about to go through the same thing that I had done – I’ve just been discharged after thirteen years with lung cancer’, and they just all started clapping and cheering. And I know right away they gained some inspiration, you know, which is so important.

And then when I went back out into the reception area I asked would she frank my appointment card with a discharge stamp, you know, which she did, and then as I was about to go out the door, I held the door open to let someone in, and I heard a voice shout. And it was a mate of mine who was diagnosed with lung cancer a few months previous, and he shouted at me, being brought in for some treatment, and I went in and sat with him for an hour. The beast that was lung cancer refusing to let me go! But, you know.

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A few people felt that it was important to have doctors who knew them looking after them in the long-term. Several felt well supported by their GP and said that having confidence in their GP was very important. Wendy felt very reassured that her oncologist had told her to phone and make an appointment if she ever had any future concerns. A woman who was living beyond cervical cancer stressed the importance of having one person looking after her as they would know ‘the full picture’. It was important to Claire, who had colorectal cancer and Hodgkin’s lymphoma, to stay with the doctors who knew her medical history. She felt that although this meant that she had good continuity of care, it did limit where she could live and meant she missed out on opportunities to travel or live abroad.

Claire feels that she needs to stay living in her local area as her doctors who know her medical…

Age at interview 46

Gender Female

Age at diagnosis 16

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I know some GP services you have to, you can’t always see the same one, but I think it’s always important to try and see the same one so they’ve got a continuity of your history and what you are going through etcetera, because otherwise you have to explain it all again and you get, because I think the notes will say things but they’re not necessarily, you know, someone can’t, they’re not going to read the whole load of, I think mine are about this thick, so they’re not going to go through all those every time. So it’s good to try and keep to the same GP and try not shift about, but I know that’s difficult when people are moving around the country.

I mean I’m fortunate, or not as the case may be. I mean this is one of the things that I said earlier about one of the effects has been that I have not moved away, and one of the reasons would have been because I would have been concerned about going to another hospital, another GP. Because by moving about you lose that continuity, and I think that’s really helped me and the service, and the support I’ve got. I think if I’d gone to lots of different hospitals and GPs they’d have all had different ways of dealing with me and I wouldn’t have got the consistency. So in one way it’s good that I’ve stayed, but in another way what it’s done is restrict my movement whether it’s for work or pleasure or

I’ve gone on holidays but I’ve just not moved away. So I know a friend of mine recently went on one of these sort of seven week, like, you know, worldwide tours type thing, because she never did it when she was younger. And again, that would have been something I’d have done as a youngster but by the time I could afford to go I’d already had it once and my mum just wouldn’t have let me out of the country for a week to France, let alone round the world for seven weeks. So I’ve missed out on that. I might do it later, and most probably will, but I didn’t do it then, and I think a lot of things I didn’t do because people were worried that I would fall foul of something, whether it was, you know, an odd disease in another country, or the stress of travelling, or whatever it was. So that coupled with not moving away from home is, as I say, a two edged sword. It’s meant that I’ve had consistent treatment, which has been great, but there are certain things I’ve missed out on from that point of view, but I’ll make up for it I’m sure.

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The way that cancer survivors are followed up is changing. In future there may be less reliance on regular clinic appointments and more emphasis on tailored support to enable people living beyond cancer to recognise long-term consequences of treatment and signs and symptoms of recurrent or advanced cancer.

Financial issues

Cancer can disrupt many aspects of life, including household finances and budgets. For many people, financial issues resolve soon after treatment, but having had cancer...