Cancer (young people)
Cancer relapses in young people
A few of the young people that we interviewed said that they had had a recurrence of their cancer after months or even years of remission (where their cancer had appeared to be cured, at least for a period of time). Here they talk about how they found out that their cancer had returned, their reactions, their new treatments, the side effects of having further treatment and what it felt like to be young and be diagnosed with cancer for a second time.
Young people who have had cancer are normally followed up by the hospital where they had had their first treatment, for a number of years. Sometimes a reoccurrence (relapse) of the original cancer is identified on scans or blood tests at one of the follow up appointments, or you might notice symptoms yourself and go back to the doctor to find out what is wrong.
Needless to say discovering that the cancer has returned can be a dreadful shock - especially if you had been feeling physically well and had returned to normal life. Many young people reacted in disbelief.
Felt devastated by the news of having a brain tumour for a second time.
Felt devastated by the news of having a brain tumour for a second time.
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Yes so it was, it was actually a year on in 1996 that the second tumour was actually diagnosed, it was diagnosed through this thing of having a blood test and looking at the, the, the marker levels if you like of the hormones that the, the cancerous cells have produced. And that experience was of course very different the first time because at the second point I was, I was well, I was with it mentally and physically and I can just remember breaking down and crying. You know because I'd already had it once and to get another brain tumour was, is devastating.
Yes I literally just broke down and cried when I was told that there was more cancerous activity and then I, and then for a little while I sort of really was quite well I mean I was absolutely devastated, not just quite but really down and unhappy about it. And I think that I have been able to develop this thing because its, its not just in that instance when I was ill but sort of now if you like. I'm a bit like this is how Mum describes me, I can have the downs and the ups and everything like that and she says I'm a bit like those toys that you used to be able to get, with the very big round bottoms, you just push over and they would jump back up.
You know I seem to be a bit like that. So yeah I mean when I was sort of diagnosed the second time around I got on with saying, 'If I die I want this to happen'. I made a Will. I made some funeral plans but it was like that was actually getting those things done in case. It wasn't you know the, the fact I was gonna die, it was getting those sort of sorted and then I could put those issues at the back of my mind and not worry about those things and actually worry about getting better. You know because I had dealt with those particular issues. And yeah they did worry me more but to a large extent those were at the back of my mind.
Okay.
And, and the thing of getting better was at the forefront.
She was at university and enjoying life when she was told her brain tumour has reoccurred. This...
She was at university and enjoying life when she was told her brain tumour has reoccurred. This...
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Anyway so this was, we went to a regular check-up and I remember my consultant and my surgeon were sitting in the room and usually when I go in they have a really, like they joke and they laugh and you know and they looked very grim. And I knew something was wrong and they, they told me and I basically had hysterics. I just told them that I didn't believe what they saying, I needed to see the scan myself to actually believe that it was back again. And I saw that there were tumours in my brain and down my spine as well. And it was then, only when I saw the scan which was on the wall in the, in the consulting room that I believed what they were saying.
And, you think 'Oh gosh its not here again,' and [chuckles] kind of thing. And this was in my first year at university in 1999.
So you were 20, 20 years old?
Yes I was.
Yes I do. I do think 'Why me?'
Okay.
And I did used to think about that quite a lot.
When the first time?
Yeah the first time and the second time but you've just got to realise that things happen to certain people and you just haven't got any control over it. So you just, you just have got to be positive. Because I was 17 years old and I wasn't prepared to die then, I was going to fight everything. And you just, you have to have a positive attitude towards it all.
And the second time did you also have this positive attitude?
Yes I did.
It was a like a journey going through life it's an experience that I had to get through. And I felt that I would, I would get through this. Fighting nail and, you know fighting for it and I think I've got there hopefully [laughs]. I've had it twice. I don't want it again [laughs].
Developed a lump on his neck 2 weeks after a check up and also had severe leg pains, but neither...
Developed a lump on his neck 2 weeks after a check up and also had severe leg pains, but neither...
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The first one was my Mum simply found a lump at the very top of my back which was sort of a, quite sort of a jelly like and it was quite, quite sort of soft, it was quite strange feeling, just a really round lump at the top of my back. And she found it and she said 'Oh I don't, I don't like the looks of that.' And me sort of wanting to believe that there was nothing wrong said 'No its nothing, its fine, we'll leave it.'
So we left it and then I started to get really strange back pain in my lower back which we went to the GP for who said it was probably a trapped nerve like or, or like a slipped disc or something like that, its sort of a typical injury. And the pain just grew worse and worse up to the point where at school I couldn't, anywhere I, I couldn't stand up and school became so ridiculously unbearable I couldn't actually concentrate or think in lessons, I couldn't do anything.
Why didn't you called the hospital?
Because the lumps started growing everywhere and I think by the end of, by the time I got diagnosed I had sort of eighteen tumours. I, I was Stage III the second time, I was only Stage I the first time. Yeah I think the, the amount of lumps that I had sort of showed me that it probably wasn't normal and it, it was probably sort of quite sinister and -
So you were a Stage III?
Yeah Stage III. The only reason I wasn't Stage IV was because there was nothing in my cerebral tissue, my spine or my brain, my spinal cord is the only reason I wasn't Stage IV.
What I am interested to find out is why you postponed contacting your consultant or the team that had seen you the first time?
I think -
Were you frightened by the idea that the cancer might?
It was fear and, a mixture of fear and disbelief because just before I sort of found the first signs of it, of relapsing the, the lump in the, the top of my back just literally a week or two before that I had a check-up in hospital, blood tests, scans, everything which showed that there was absolutely nothing wrong with me.
So that sort of made me feel that it couldn't possibly be cancer again. And also probably subconsciously there was an element of fear as well that it you know I didn't want to face up to what it probably was, again.
Okay. So you said that you were diagnosed for the second time, can you tell me about that you went to hospital?
Yeah I went to hospital, that was December 2001.
You were 14 then?
Yeah, yeah 14.
And who told you the cancer had come back?
My consultant yeah.
Do you remember how you felt at that time?
The second time I felt, I felt nothing, because I was in so much pain that it was actually a relief to get a diagnosis for what it was none of my family cried we’d, we, we were out, I was actually sort of, I wouldn’t say “pleased” but I was pleased to know that it had at least been diagnosed and we know what it is, that what, what had been causing me pain for the last like two or three months.
The only person who cried was actually the consultant which was quite strange but no for me it sort of, it came as almost a relief that something was, was going to be done about it because the pain had just become so ridiculously intense that whatever it was I just wanted it, I wanted it cured and treated.
It can be a doctor’s manner even more than what they say that can give away the fact that they think something further is wrong. One young man said that his doctors were not direct and referred to ’raised markers’ rather than saying ’You’ve got another tumour’.
The types of treatments that are given when a cancer reoccurs can be different than those used when the cancer was first treated - for example more intensive treatment may be used, or used before and after surgery. The more intensive doses meant that some had more discomfort and pain the second time around.
Stephen’s bowel cancer had spread to his leg and his options were sometimes limited as his case was unique.
Stephen’s bowel cancer had spread to his leg and his options were sometimes limited as his case was unique.
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How was communication with the doctors at this, during all this time? Were you involved with decision making with your parents, or were you given options?
Yeah we were given options but with something like a new tumour in the back of my leg there was only one big option, yeah there’s surgery and then radiotherapy was just medically the best option by far. So we just, with this point yeah we just we went with whatever they said. And it, we were all involved but as I say there was only really one option.
Yeah so I had three months of that next lot of chemotherapy and then the scan results showed that the tumours had continued to grow.
In your leg?
Yes. So at this point they were discussing an amputation so at this point the only tumour they could see was the one in my knee, so they were discussing an above knee amputation. So with obviously after the first consultation we were sent home to kind of discuss this because the doctors thought there was still a possibility that because it had spread from my bowel to my knee that it would have spread anywhere else. So this is where we were involved hugely in the decision making. And
Where did you get information, did you look for other information during all this time? I mean apart from what the doctors were telling you.
Yeah but we were also told there isn’t a lot of information just because my, my case was so unique a) having bowel cancer at such a young age,
Yeah.
And b) the fact that it had spread from my bowel to my leg, in the back of my knee. It was just such a unique progression that there really wasn’t much data or information out there so intuitively we just had to try and make a decision. We decided just to go with the amputation, before we did that we just needed another scan. This scan showed though there was something in my pelvis, and the lymph nodes in my pelvis were cancerous so obviously that kind of rendered the amputation pointless.
Almost all of them said that their treatment was excellent and highly praised the NHS and the speed and kindness with which they were treated.
After an earlier experience in an adult's ward, she jumped at the chance of being in a children's...
After an earlier experience in an adult's ward, she jumped at the chance of being in a children's...
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My treatment over the years has just been excellent. I hear people moaning about you know the NHS but all my treatment has just been brilliant, fantastic. And you know I just can't say 'Thank you' enough to all my doctors and surgeon you know because they've just been brilliant.
And again I lost my hair during my chemotherapy [chuckles] and again I got another wig. And again I didn't want another wig [laughs] because I had quite a few hats already from my time before. I met, I met lots of people in hospital who obviously had cancer as well and they were going through the same thing of chemotherapy and different things so it's like a home from home, you know just going in to a home [laughs]. And its like a home environment because where we were you know there was a kitchen, your parents or you could go to the kitchen and have what you want to have. You know if you felt like having it or not, it was very amicable, I mean it was just, it was just so gentle and it wasn't like 'You have to do this,' or 'You have to do that,' if you didn't want to do it, unless it was a medical treatment that you had to do. And
How many blocks did you have within those six months? Do you remember?
I have a feeling it was about six or seven.
It was about one, one or two a month and I think because it was, it was about a week, it was about ten days each bit of treatment so I wasn't in hospital for six months it just was over a period of six, seven months.
I was allowed home for a week, a week or so in between the different treatments of chemo. I found going home was just a little bit of a break from being in the hospital. But then you go back and you see the same people there [laughs]. And you just, I, I'd have my friend who was 16 next to me in the same bed. We'd just have our designated beds [laughs].
Had a very rare form of cancer so after relapse a team of medical professionals was involved in...
Had a very rare form of cancer so after relapse a team of medical professionals was involved in...
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That was it for then, yeah [laughs]. Yeah, so it went well. They thought it was good. A few tests afterwards, I can't remember exactly what they were, just CT scans and MRI scans and things. And it was fine. They were just looking at the neck area for a few months, I think, thinking it was all good. And just seeing the consultant, and it was fine.
And then, it was a scan they did on my chest as well. I think they were doing a whole upper body scan, and they saw something else as well. So.
The same thing?
Yeah, it was the same thing. Same sarcoma.
Okay. What's the name, the name of the sarcoma?
I can't remember exactly what it was. I know it was like a nerve sheath tumour, so just on the edge of the nerves.
So what did they do next?
More scans, and everything. And then knew what it was up there, it looks pretty bad. I think I'd four lumps in my chest, two on either side and right in the lungs. So they just decided what to do. Some pretty heavy chemo, and then see how that went. They weren't entirely sure if it would work or not, because it was so rare and they got all the best people involved with it, who knew anything about that particular disease and cracked on [laughs].
So how did you feel, I mean to have it for a second time?
Yeah. This was when I probably realised that it was a bit more than what I thought, you know. It was going to be actually a bit harsher. Maybe there is a chance of not being too well, so yeah, a bit more worried about it then. But again I just thought, "Oh well, just get on with the treatment, get over it, and then see what happens".
So how long was the treatment?
It was three months of the initial chemo, and then, then it went well. I think they reduced in size by about half, maybe even more. So they thought, right, let's get whatever's left out. So they did an operation, a big operation on my lungs. That was quite harsh. I spent ten days in hospital for that trying to recover from it. Yeah, it was really harsh, that operation'
And are you, were you treated in your local hospital, or you had to go to a consultant in another hospital?
Well I had all my treatment, apart from the second operation at the hospital. It's pretty big hospital here, so they can do everything. They, they know what they're doing. They're really good. I could never complain about the service on the NHS. It was just perfect. You know I think they just get on with it, straight away. Going in for the first operation, you go and see about it in the morning, and then he gets you on the theatre - well on the table for the afternoon. And speaking to the consultant he, you know, forced it through. He was busy already and just made sure I was on there, so, and just the nurses were great, the consultants were great. There was one professor, who was in charge of the whole case, seeing it, seeing it through, he was particularly high up, and knows all about it. He was quite far away, in [place], but you know he came down to my hospital once every few months, so that was when I saw him.
Obviously it is totally devastating to be diagnosed as having cancer again, but some said they were less scared the second time around because they knew what to expect from treatment and from hospital life. Those few who had joined a teenage cancer support group were aware of, or knew, others who had relapsed.
After relapse he had more intensive chemotherapy and a stem cell transplant. His pain disappeared...
After relapse he had more intensive chemotherapy and a stem cell transplant. His pain disappeared...
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They sent me for a biopsy of the one that my mum had originally found at the top of my back, the tumour at the top of my back. And that, yeah that, that was what confirmed it I think, that was what confirmed the diagnosis the second time. That, that only took a sort of a few days to, to happen after the operation so perhaps if I'd gone in you know as soon as I'd started feeling the symptoms I would have been treated a lot sooner.
Okay. Did the consultant explain to you what they were going to do, how they were going to do it?
Yes they, the consultant said that it would be the same sort of, it would follow the same sort of treatment pattern as the first time only I would have, in every month, or in every four weeks one week would be in hospital having chemotherapy and three weeks out recovering because the chemotherapy they were going to give me the second time was a lot stronger than the first time. And they also said that the last block, the last course of chemo I would have would be a thing called BEAM which is high dose therapy involving really strong chemotherapies which I'd have to stay in hospital for three weeks for. So yeah, no they, they explained it all to me then when I got diagnose.
Okay what were the side effects of the intense therapy, the intense chemotherapy?
They were the same as the first time but a lot stronger, the side, simply a lot worse. Like, like the first time I remember having sort of really quite strange mouth ulcers in my mouth from one drug called Methotrexate which it, it sort of takes away the skin of the lining of mouth inside so it, it's painful to eat, swallow and that sort of thing. That, the first, the first time I was treated that only lasted a couple of days at a time maybe, maybe two or three days at a time but the second time I had it, had it, the, the doses of the Methotrexate I was given, being given were so high that it lasted sort of two or three weeks at a time. And for that sort of period of time I literally couldn't open my mouth to speak. I, I had a sort of pad of paper by my bed in hospital to write things down for people because I couldn't, I couldn't talk to them.
And well hair loss was the same and, but the second time I wasn't, I, I didn't put on so much weight, actually I'm not quite sure what that was, why that was but the second time no I certainly didn't, if, if anything I got a lot thinner the second time.
Okay.
The second time round.
Did you have any pain?
Not after the treatment was started because the first lot of treatment they gave me, I remember actually sitting in hospital just after I'd been taken in and the first load of chemotherapy they gave me was actually through a syringe, through a cannula in my hand because they hadn't had time to put the Hickman line in yet. And they gave me sort of a, a syringe full of one called Vinblastine in my hand and literally twenty-five minutes later the pain that I'd been sort of suffering for the last three months just went away, like that. And I, that was the last I felt of that pain, twenty five minutes after the chemotherapy had been given to me, it was really strange [chuckles].
Okay, which other treatment did you have apart from the chemotherapy, the intensive chemotherapy the second time?
Oh I had a stem cell harvest treatment, yeah that was -
Can you explain that -
The second time he was diagnosed with Non-Hodgkin's lymphoma he felt angry, rather than worried....
The second time he was diagnosed with Non-Hodgkin's lymphoma he felt angry, rather than worried....
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Yeah pretty much yeah.
Okay, okay so that, would you say that, that was one of the main side effects?
That was the worst one for me I think. It was worse than hair loss the second time. I, I could bear the embarrassment, I couldn't really bear the pain of, in my mouth too much. So yeah the mouth ulcers were the, were the worst side-effect the second time.
Okay, how did it make you feel?
Really frustrated, I used to, in the time I was not in hospital I used to sit and torture myself by watching cookery programmes on TV and I don't know why I did that, it just, it made me feel really, really frustrated not being able to eat. Not being able to talk was a bit of a, a bit of a snag as well. Having to write everything down is, gets, gets a little bit annoying after a while so yeah it, it generally made me feel really, really annoyed and frustrated.
Okay. Any other feelings that you remember from that period? Worried?
Yeah sometimes worried only when you know I was maybe sort of in a, a more depressed mood about the whole situation but generally I didn't, didn't really get worried at all about it.
So there are, there are sort of kinds of ups and downs?
Yeah, no, the whole time definitely had, it, for everybody this sort of thing definitely had its ups and downs you know.
Can you tell me about those in more detail?
Sure yeah when, I mean the downs for me were always when I had the mouth ulcers so I was always, when, when I got the most frustrated, when I felt the most depressed, so I started to worry more. The better parts were sort of when, when friends came to visit and stuff that always made me feel much better and it sort of left me feeling, feeling really good about myself and you know like, you know like everything wasn't quite as bad as it, maybe you know I thought it was.
Have you ever felt angry?
Yeah I have felt quite angry before I, I felt, my emotions the first time were more worry and anxiety and stress and the second time yeah I felt a lot of stress but the second time more so than sadness and worry I felt quite a lot of anger the second time, I don't know who at but I just felt anger, anger at, at being in that situation again. Particularly as you know I mean the first time is bad enough but the second time it's just, it's wrong, why should it happen to anybody. So yeah I, I remember feeling very angry the second time, really.
But that feeling was with you?
Yeah. That feeling was hugely in me.
And how long it lasted?
Most of the time I was having treatment. When, most, again when I felt the lowest physically and it made me sort of more depressed with the mouth ulcers and everything, then I felt really angry.
And did you on both, or any of those, of those occasions did you think, 'I won't get better'?
The first time yeah for the first, the first you know the first few weeks of it. The second time, I suppose though at the second, at the beginning of the second time I did feel I probably wouldn't, I might not get one, I probably wouldn't get better, there you know there was a chance I wouldn’t get better. Because the first time my prognosis was I think its 96% chance that there’s never going to be, that you know you’re going to be fully cured for life, no remission or anything. If you get Stage I NHL there’s a 96% chance that you’ll be fine.
Whereas the second time I think my prognosis went down to 80% if you get a relapse in Stage III. So yeah perhaps due to the statistics of the whole thing maybe the second time I felt at first a little bit discouraged by the numbers, but no I don’t, I don’t think the second time certainly there was any point at which I thought I was going to die, really.
Although I think medically I came quite close to it the second time because there was a tumour right next to my heart which was creating a lot of fluid and I had a lot of trouble breathing I remember as well during, as, as well as back pains and things because of the fluid around my heart. And it was only, by the time they, they sort of started the chemotherapy the tumour was you know one or two millimetres or something away, away from my actual heart.
So no I think maybe the second time I was actually closer medically to death but I don’t think I ever felt that I was going to die the second time.
The young people we interviewed were very philosophical about their relapses. Even though they knew that their chances of total recovery were worse after the relapse (and some had been really frightened and angry), they pointed out that it was pointless being negative. One young woman said that although you can feel it’s unfair, you have to recognise that it’s out of your control and just get on with treatment.
Has had three major operations to removed glands from her neck and is awaiting another one on her...
Has had three major operations to removed glands from her neck and is awaiting another one on her...
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Yeah I do. I go regularly.
How often?
Well, we've never actually got into a routine, because we'd start saying every three months and then in between I'd start, I'd feel something in my neck so I'd have to come back quite a lot. I mean, recently I've been, for the past three Fridays, I've had to go up to [place], to see my doctor because I've had a few glands pop up again a couple of small ones on my neck. I've been quite fortunate up to this moment, they've all been like 5mm big kind of very tiny ones. But on my cheek at the moment I've got a very swollen gland on my cheek. Initially I thought was wisdom teeth [laughs]. But it wasn't and I had a blood test and unfortunately that came back positive so next week I've got to go into hospital to have the gland there removed. Which will be a two/three hour operation just because it's in a difficult place, it's where all my nerves are so they've got to be careful not to damage the nerves that control movement in my face. Because otherwise I, I you know, I might not be able to lift my eyebrow or I might have a bit of a wonky smile or something like that. But I mean it's something I have to consider, I might have some damage depending on. 'Cos the glands are kind of above and below the nerve so they kind of, they might have to damage a little bit the nerve to make sure they've got all of it out. So that's the next operation and I'm going to have a scar that will come along my hairline, round my ear, round the back and join up to one of my other scars which, I mean I'm not thrilled about because obviously it's more on my face, but I've kind of come on to the point where I'm proud of my scars. Obviously they've faded a lot but it's, it's part of who I am.
I wouldn't get rid of them because it's proof that I've been though so much and I'm still here, I'm still standing, I'm still fighting and it's part of who I am. If I didn't, you know, the fact that they're so visible on my neck that it, you know, it's, unlike somewhere that can be hidden by a jumper and therefore you kind of can hide it and not think about it. Mine have always been very much on display so straight away I had to deal with the fact that I had scarring.
So, that was good I think because I, pretty soon after my operations, I was like, well you know I don't mind, it's not too bad. They've all been quite clean. They're not big horrific ones. I've had a few kids ask me before what they are and I, I revel in telling them that it's a shark bite [laughs].
Last reviewed December 2017.
Last updated November 2014.
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