Cancer (young people)
Follow-up appointments for young people with cancer
During and after treatment for cancer, patients will need to have a continuing series of tests. These may include blood tests, body scans, x-rays etc. Some of the blood tests apply to many cancers, like testing how many white cells are circulating in the blood stream. This is because many treatments for cancer can affect these. Other blood tests may be given, depending on the type of cancer. For instance, one of the common tests to monitor ovarian cancer is looking at the level of CA125, a protein in the blood that is usually higher in women with ovarian cancer than those without it.
The reason for these tests is to make sure that the cancer has been cured. If the tests show that cancer is still present, further treatment or close monitoring may be recommended. Young people found some tests worse if they were worrying, more painful or more important than other tests.
Prefers her six-monthly blood tests to her annual scan.
Prefers her six-monthly blood tests to her annual scan.
It's not so bad, it's not so bad when it's just a blood test, 'cos I only actually have a scan once a year, I have a blood test every six months. The blood test doesn't seem so bad 'cos I think.
So if you carry on talking about the blood tests?
Yeah, the blood test really weird but it seems to me that you can hide stuff in a blood test, which is ridiculous because I know that they, you can't hide things and they're going to do all the tests, but when it's a scan it's kind of, they can see all of your body and there's kind of no place for it to hide so I find the scans really scary, and when I'm having the scan it's really horrible 'cos I'm sat there and the doctors are, when they're performing the scan, I just really want to be In there with them looking at my body so I can see if there's anything which shouldn't be there. I mean, the only thing that isn't normal on my scans at the moment is that I've got scar tissue on my lungs where some of the radiotherapy did get through to my lung.
Even when all the signs of cancer have disappeared after treatment, most patients continue to have regular check-ups. Some young people we interviewed didn't remember their consultants ever saying that they were 'in remission’ which means that their cancer was inactive or actually cured. Others were kept well informed about the stage their cancer was at and how well their treatment was working.
Being told that there's no longer any sign of cancer can feel like 'the best news ever'. Some of the young people we talked to were expecting to go back to ’normality’ when they left hospital. Others found that even though they were cured, they were limited for a long time by side effects of the actual treatment, such as feeling tired.
Remembers his elation when he received his last block of chemotherapy and is now just having body...
Remembers his elation when he received his last block of chemotherapy and is now just having body...
Yes I did.
Can you tell us a bit about that?
One of the best days of my life really. It was when I'd finished my chemotherapy 'cos with CLIC with have CLIC nurses there so towards last the last like say three fifths of my treatment I was able to have it here at home so you know the CLIC nurses would come out and that. And on the last day that my, I had it here, and they came and did that. And when, I've got a field outside though it's not a field any more, but it used, it was a field when I finished my treatment and I went out, stood in the middle of the field and I just yelled that I've done it, I'd beat it, I finished. And cars were going past like 'What's he doing? Why is he standing in the middle of a field shouting?' And then the next day we kind of went into hospital and they were like yeah, yeah we're going, you're going to have an MRI scan monthly as you have, because obviously I've been having monthly MRI scans throughout and they were going to continue with that for six months, see how they go, then move it to three monthly for a half year and then move it to six monthly for a couple of years and then we'll see where we go from there. And at the moment I'm on six monthly ones, I just had one two weeks ago and I got the results yesterday and they're clear, perfect, perfect apart from the hole in the back of my head which I've had throughout all of them now [laughs]. Yeah. So you know.
Does it bother you to have that at the back of your head?
Oh no I'm quite proud of it myself you know because with the size of the scar there because you know how some people can be like 'Oh yeah look at that scar I've got there, look at that one there,' you know I go 'Ssh look at this one, all the way round.' They're like 'Alright you win, go away.' I'm like 'Yes I know I win yeah.' So you know like I said at the beginning I try to find the funny side to things but.
He spent five months in hospital receiving chemotherapy and felt very tired when he first...
He spent five months in hospital receiving chemotherapy and felt very tired when he first...
I used to read a lot of magazines, I used to read quite a lot of medical texts anyway so I kind of, I think the exact term of 'remission' is, is that the cancer's just not visible. You never actually go in to, you're never cured, the idea is that you just go in to remission. So it means that it's undetectable and that's, that's it really. And like so I've asked my consultant 'Is it undetectable?' and he said, 'Yes, undetectable.' So I said 'Am I in remission?' and he said, 'Yes, I suppose by that definition you are.' And that's it and it's always just stayed like that.
How often do you go to see your consultant?
About once every four months. Yeah it used to be once every month, or couple of, well initially I suppose it was once every week I suppose for a while and then it went on to once every two weeks, and then I remember it being once a month, and I have a CT scan every now and again. And then, and now it's gone to one, I don't have any CT scans any more and it's been once, once every, once every five or six months now.
I first came home I thought that I'd just return back to normal life but I was exhausted [laughs]. I remember coming home and my parents had bought me a new chair in my room and it was great because I had this new chair but I sat in the chair and that was it I had to go to bed then, I was tired. And I was exhausted like I was so tired all the time I thought well you know this is strange you know when I, when you think you've come out of chemotherapy you think that's it you should be able to just do what you want to be able to do, you should be able to just, you know a day or two walking around the house and then you'd be off to town and going off, going to do some shopping, coming back and you know staying up all night watching television, playing computer games, do whatever 16 year olds do.
Follow-up appointments after having cancer can involve a whole series of various investigations. Some young people had to wait for several days for the results of their tests to become available but others got their result on the same day - depending on the type of investigation involved. Young people can, not surprisingly, feel quite anxious about their check-ups because they fear the tests might show that their cancer has returned. Parents can sometimes feel more worried about test results than the young person does. On the other hand, many of the young people we interviewed, and their parents, were reassured by that regular monitoring was taken place in follow up appointments. They felt confident that the tests would pick up anything that was wrong at an early stage and they would be able to act quickly to treat it. One young woman who had had no symptoms of her cancer in the first place, pointed out that she might only find out at the check-up if the disease had come back. Some found that it could also be very reassuring to be able to compare recent scans with earlier ones when their cancer was present. A young woman with a history of cancer in her family was particularly worried about the possibility of a relapse or cancer affecting other members of her family.
Feels stressed every time she goes for check-up appointments and she does not want to take her...
Feels stressed every time she goes for check-up appointments and she does not want to take her...
I get stressed every single time. I've got a check up coming up in a week, and I can already feel my stomach tensing up, thinking about going back. And it's not, it's not the place any more, because the place used to make me nervous, but the place actually is quite comforting now, because I feel like I'm going back, and if something is wrong, they can deal with it. And I love going back and seeing all the people all the nurses that treated me, and they always want to know how I am, and I want to know how they are, and how their children are that they used to tell me about all the time. But I do still get really nervous about it, and I think, to an extent, that nervousness is almost built up by me, because I feel if I don't get nervous about it, then I might go back, and something might be wrong. It's almost like'
It's like a defence?
Yeah, it's like a defence. It is. It is a defence mechanism. If I don't worry about it, then I'm taking everything for granted and then, and that's something that really scares me. I've learnt so much from being ill, and if I start forgetting it, then maybe the whole point of me being ill will come back, and maybe I'll be ill again. So I mustn't ever forget all the lessons I've learned from being ill. That's really important.
He is not apprehensive when he goes to his check-up appointments but says that the thought of the...
He is not apprehensive when he goes to his check-up appointments but says that the thought of the...
Not really like, I, I do know some people who as soon as they walk into the hospital, they hate the smell of it and it makes them feel ill after being in like having treatment. The only thing that I don't normally like about going back to the hospital for the, for the check-ups and stuff is because I was on a kids unit and you see all the kids who are crying and screaming and stuff upset, now knowing what's going on and that, that does make me a bit upset and stuff, but it's what you have to you, you have to go and have the check-ups so you just try and deal with it.
When you knew that the transplant had worked, how did you feel, do you remember?
I don't remember feeling that it was a relief because when they said the transplant had worked it's like there's still so much that, else that's going on like you still need to take this and it was, it was not until I had [coughs] a check-up and they said 'You don't have to come back for a year,' that I thought that I, I felt fine, like it was kind of a relief.
It's always in the back of my mind like, it, and it'll probably still always be the same, you're always worried it might come back, there's always a chance, like because you know that it can happen. Like I don't feel like I did anything wrong to deserve it and I don't, there's nothing that I did personally that made it happen, so it kind of, it's out of your control.
So there's, it's always in the back of your mind that it could come back, but you learn to deal with it like that's what, why I try and like look at things like just enjoy them while they're happening and stuff. And I suppose if it does, if it did come back then I'd have to deal with it at the time, but you try not to think about it because you're just enjoying like what's going on now and stuff. After going through something like that you just, you appreciate what you're going through at the time and you just, you know that things, because unless you, it came back things could never get that, like you could never have a situation that's that bad. So it kind of makes you feel like you could get through anything. Which is good in some ways, because you learn to be a better person for it and stuff like that, so.
Now has check-ups once a year. He is reassured when he compares earlier and more recent brain scans.
Now has check-ups once a year. He is reassured when he compares earlier and more recent brain scans.
Son: Probably about 2000/2001 where they said there was...
Not so much to see?
Son: No, there was no sign, no evidence of it on the, like the scans at that point, like compared to the old ones. When they looked at the one then the other the difference where they could see the big marks where the tumours were but now at that point there were, was no sign of them or things like that. So I think probably about, about two or three years after where they had said they'd gone really. And since then it, they, I've seen all the scans since, there's been no sign and we've been shown, I mean the last, I think it was the last time we went we were shown the, a couple of the original scans compared to the new scans and the difference is incredible.
Yeah. That's good. And you have seen those?
Son: Yeah I can, I can look at them now and can understand, now I can understand them. I mean when they were showing me like through like the year after, the first few years afterwards I didn't really understand them that well but now like when I see them I can now see what they mean and I can see what they, what part of it was the tumour and notice a difference and see well there's nothing there any more, not even like a little tiny fleck or whatever, nothing like noticeable. So I know everything's pretty good up there.
And how did you feel at that time?
Son: Elated. Still am now sort of thing every time, every time we see a scan or whatever and there's nothing there it always cheers you up and just reassures you that you are, you've got through the worst of it now.
So every time you go to see your oncologist you have a scan?
Son: I think well I'm not sure its, he normally asks for them to be done possibly just in between going to see him.
Uh huh.
Son: So when like I go and see him next he's got the results. Because I normally see him about January time isn't it every year now.
Mother: Yes.
Son: The way it's worked out but the last time I went for the scan was about October some time wasn't it?
Okay.
Mother: I think it was requested as a preparation to find out your possibly having a growth hormone.
Son: Yeah they were yeah.
Mother: So he wanted to be sure what the situation was before they did any further tests.
Son: Yeah.
Says that regular checkups and scans help to detect any new cancer cells that might build up in...
Says that regular checkups and scans help to detect any new cancer cells that might build up in...
Or I've after radiotherapy I saw the doctors and they said, “You'll have a scan in,” an MRI “to check it's all gone.” And I had one of those and I have it every six weeks, six months now. I had one I don't know how many months ago to see if the tumour's gone because there can still be cells even though its, most of its gone that can build up again so I've had a scan just to check its not come back.
So you are having a scan every six months?
Yeah.
Okay. Can you tell me how you feel, sort of the day before you go and have a scan, are you apprehensive in any way?
Hmm, no because I've had two now and they have been all clear so, but I was feeling on my first scan a bit worried to see if it was there and I've got to go for another five weeks because I don't really want to.
Okay. Okay. Why you don't want to?
Just because its like putting, 'cos my mum works at home and she couldn't work and its just like the stress of going through it all again, you've done it once and you don't just want to do it again.
Cancer has affected several members of her family and she worries about a relapse or cancer...
Cancer has affected several members of her family and she worries about a relapse or cancer...
Yeah, yeah they've obviously said that, you know, to, don't sort of pursue it, don't go on sun beds, don't go in the sun, don't do this, don't do that, [laughs] obviously it does limit me I don't, when I do go on holiday it's a case of sun cream, sun cream [laughs] and sun cream, but yes, it does, it does worry me and I think it, it worries me for other people as well 'cos obviously they're, everyone's fine now but it's sort of a year, two years down the line whether it comes back again or, you know, comes back in a different form or it-it does worry me because I-I always sit, always think that obviously with my family issue, my [eh] my Grandma had breast Cancer, my Dad had lung Cancer, my Granddad had Lung Cancer and there's me with Leukaemia, how more unlucky [laughs] obviously can you get? And I worry whether, if my Mum will get it, or my sister gets it, it does worry me 'cos as I say, I don't know whether it's genetic or whether it's just a fluke for the, you know, that it happened really.
So you don't just worry about yourself, you worry about those you love?
Yeah, yeah.
How do you view the future in general?
I pretty much take every day as it comes [laughs]. I never say that I'm gonna be doing this in two years time I always sort of do it now as such. 'Cos as I say you never know what happens down the line so I, I never wait just do what I've got to do [laughs] and sort of do it now.
Check-up appointments after leaving hospital can also be about monitoring the after effects of cancer and of treatment. For instance, some chemotherapy drugs can affect how the heart functions and others can affect hearing. With a brain tumour, radiotherapy given to the spine or head can also affect growth. Everyone we talked to had had blood tests to check their hormone levels during remission. Several were actually taking hormones to replace ones that were not being produced by their bodies because of their treatment. Some of these people knew that they would be taking these medications for the rest of their lives.
Following a recent blood tests to check her hormones levels they found out that she has an under...
Following a recent blood tests to check her hormones levels they found out that she has an under...
It was mainly blood tests I'm I've still got to have sort of a yearly one at the minute. I've just the past sort of year's been not very pleasant, I had to switch my jobs in June but I had to have, take two months off of work because I came very low, very depressed and, and then they did a blood test to find out that I had an under-active thyroid problem, so they literally shoved me on medication and they're keeping a close eye on that now but they're just, they're trying to get the dosage right because they don't know how long I've had an under-active thyroid for they-they've put me on quite a high dosage so I'm buzzing all day and not sleeping at night [laughs].
And have your sort of moods improved?
Yeah definitely I feel a lot better in myself. Apparently to my Mum says she I-I look a lot better than I sort of did sort of a few months ago so obviously it, the, it must be doing something good. But I-I sort of questioned the doctors, 'Why didn't you find this out sooner?' And apparently, it, they have to do a special blood test for it to show up and when they-they do it every yearly, and obviously they hadn't done it for two years [laughs] the previous blood test obviously I missed out on that one so, yeah so, [laughs] this is why I-I go in for a blood test every three months now just to, just to check so.
Okay, any other problems?
No I am slightly dyslexic due to the treatment that I had. When I was on treatment apparently it's the radiotherapy or chemotherapy that-that knocks-knocks you behind I had to be taught to read again after the treatment because I was, nothing was there [laughs] oh something was there but, it was very difficult, I find it spelling's atrocious [laughs] I carry my dictionary around with me [laughs] and I just think that also that what I'm doing now teaching it's very-very difficult 'cos I've got to revert to the dictionary [laughs] all the time [laughs]. So yeah it's-it's pretty much, you know, if-if you've had cancer it doesn't stop after treatment it's an ongoing thing probably for my, for the rest of my life which is hopefully not a bad thing, 'cos if anything goes wrong again if I, you know, that they will catch it very, very quickly rather than just wait around for a couple of years [laughs].
The frequency of follow-up appointments is gradually reduced. Initially they might be every few weeks, then every few months before reducing to every 6-months to a year. Some young people were unsure how long they would need to go for follow up appointments. Others continued to see their consultants for an annual check-up seven or ten years after finishing their treatments. Follow up practice varies and it is not certain what the ideal procedure is. Some young people are encouraged by their doctors to be aware of important symptoms and to check their own bodies.
Talks about the frequency of follow up appointments and the types of tests he has had during the...
Talks about the frequency of follow up appointments and the types of tests he has had during the...
Yeah I had two MRI scans a year I think for about five or six years after I, after I stopped, stopped having treatment. I've probably had, the PET scan aside, I've probably have only had one scan in the last three years or the last two and a half years just because there's a, you know, the anticipation is nothing is going to happen and my doctor's very confident that it, it won't come back. But it was, I, I'd see my doctor more than twice a year but I'd have scans twice a year. And again probably had more than two of them, the year after I probably had more than two scans. But it was constant sort of keeping an eye on what was happening and having X-rays and things like that. And yeah I mean that side of it was pretty. It was it was, it was pretty straightforward really.
He decided, with his parents and the consultant, on the best follow- up procedure and now...
He decided, with his parents and the consultant, on the best follow- up procedure and now...
Whereas before when I was diagnosed the second time I think I was going every two or, two or three months actually. And the reason for me only going once a year is that remember I, I said about having had a check-up and then suddenly feeling ill I just, the consultants, myself and my family we don't really feel that check-ups are going to, may be necessarily cure or prevent anything. So perhaps you know the only real check-up is me if I start feeling different I, I sort of you know I'll be able to tell when something is wrong with myself so I mean a, once a year is, I think that's enough actually now.
Hmm. And what's...
And I have just blood tests whenever I go back. And I don't think I've had an MRI scan for a long time. It's been at least a year since I had an MRI scan.
Okay and what are you looking for this time I mean in terms of body signs or symptoms?
I'm, yeah, pains mostly and obviously lumps as well because the type I had, Non-Hodgkin's Lymphoma is very much, it, it presents in a lot of superficial tumours unlike things like leukaemia, so I, I can definitely look for lumps. Although I've tried to not be afraid when a gland come up because you know that's obviously nothing to you worry about.
Yeah I'm looking for mostly pains, difference in the way I'm feeling in myself like sort of maybe more tired than usual, a bit weaker than usual, not able to do quite as much sport and sort of generally just not feeling quite myself and yeah lumps and pains and feeling under the weather are the main things I look for.
And this time would you go to your doctor if you, if you were feeling under the weather?
Yes, straightaway, straightaway if I'm feeling like I am all painful or anything I'd go straight to the doctor this time, definitely.
Young people found themselves becoming ’a bit of a hypochondriac’ after treatment and would worry about any changes to their bodies. It could take a couple of years to stop being anxious about the possibility of cancer coming back, but young people didn't feel that it took over their everyday lives. "Most days you don’t think about it’ said interview 13. Being aware, on a day-to-day basis, of the possibility that your cancer may return can be stressful. Other problems such as a relationship ending, or too much stress at school or work, can raise fears about the cancer reoccurring many years after finishing treatment. Such fears are entirely normal and it is important to know that you can speak to your consultant or nurse if you have any worries (see also ’Relapses’).
Despite been told two years ago that she is cured, she still feels scared sometimes that the...
Despite been told two years ago that she is cured, she still feels scared sometimes that the...
From five years the check-ups become much less frequent. They are every couple of months to start with, then every four months, six months and now once a year.
A while ago I was having a bit of a down day. I always think that exercise is a great way to make myself feel better but on that day I just did too much. I went for a long run and a lump came up on my knee. Logically I knew that it couldn't be cancer because it had come up too fast but I was just so, so scared.
Anyway, I went and had an X-ray and my surgeon had a look and said that I'd probably just done too much and that the tendon capsule had inflamed but that it wasn't cancer. It was then that I mentioned for the first time that I still sometimes feel worried that it would come back and get a bit tearful and how silly I feel because it all happened such a long time ago. My
surgeon said that it was completely normal and that lots of people feel exactly the same and it meant so much to me knowing that I wasn't being stupid feeling like that.
Of course life goes on but those feelings are still there and you just have to get used to dealing with them. You can always talk to friends and family and such but I think it's really important to realise that there are other people out there feeling those same scared feelings and that that just doesn't go away overnight; it's always there at the back of your mind.
But then those experiences also mean that you have a real appreciation of how wonderful it is to have a normal life again.
Okay, so it's something that you have to learn to live with?
Yes. And learn to accept that the worry is always there and it is a bit scary but that you shouldn't try to hide from those feelings. But at the same time, you have to get on with life because it's crazy to spend all of your life worrying rather than getting on with enjoying it.
(The text has been altered in accordance with the wishes of Interview 13.)
Last reviewed December 2017.
Last updated November 2014.
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