Cancer (young people)
Going to your GP
Cancer is rare in young people. Therefore when a GP sees a young person with certain signs or symptoms they tend to think of the more common possible causes of these signs and symptoms first e.g. when a girl with a swollen stomach presents to her GP, the GP is more likely to start thinking 'pregnancy?' than 'ovarian cancer?'. Other young people said that that their doctor was baffled by their symptoms, and dismissed them as 'growing pains', or put them down to things like 'exam stress'.
Says that her GP could not make out what her symptoms were due to and suggested that she should...
Says that her GP could not make out what her symptoms were due to and suggested that she should...
His GP initially thought he had a virus (such as glandular fever) but he was referred to hospital...
His GP initially thought he had a virus (such as glandular fever) but he was referred to hospital...
So and then when I got back I just didn't feel well at all, I was constantly tired and I kept getting shooting pains sort of in my arms and my legs and so Mum took me to the doctors and they said it was glandular fever which they, which they stuck to for about two, three weeks. Then they said it wasn't, that it was a viral infection but they said that it definitely wasn't leukaemia.
Then I went on holiday and then when I came back there was a letter from a different doctor, because there were sort of two that work together and she said that she wanted me to go in straight away, just to see me. And, because this other bloke was on holiday and she took one look at me and said 'I'm not happy about this,' and sent me straight into hospital.
Her GP consulted with another colleague because he wasn't sure what was causing the lump in her...
Her GP consulted with another colleague because he wasn't sure what was causing the lump in her...
Young people were often not tested until after they had visited their doctor several times or when they or their parents started to think there must be something more seriously wrong. Parents sometimes went with the young person to the doctors to make sure their symptoms were taken seriously.
Stephen, age 15, repeatedly went back to the GP and A & E over a six month period with classic symptoms of bowel cancer, but even with a family history of bowel cancer it was ruled out because of his age.
Stephen, age 15, repeatedly went back to the GP and A & E over a six month period with classic symptoms of bowel cancer, but even with a family history of bowel cancer it was ruled out because of his age.
And they were testing for things like coeliac disease, or just anything wrong with my blood levels, nothing came back. I think I went back to the GP’s again, again nothing really came back. I think they did another blood test to double check for Coeliac disease then it was about that time we started going to A&E.
When we went to A&E I had an X-ray, the X-ray diagnosed me with constipation. So and basically I kept on getting diagnosed with that from there on fourth, I kept on going in to A&E and going into hospital through A&E, getting diagnosed with constipation, they gave me laxatives, sorted the problem but then I became constipated again about two weeks later. So we were asking questions like “Well what’s causing the constipation? Isn’t constipation a symptom not an actual diagnosis?”
I went to GP’s, I think I had about four times, went to A&E about four times. Just kept on getting turned away.
The GP did eventually refer us to a gastroenterologist yeah, but before we got there we were going to A&E because I was, I was that ill, I was just,
The pain mainly, fatigue?
Yeah the main symptoms that the most significant ones were pain and tiredness, I was really, really weak. I struggled to walk, I used to be a cross country runner I used to be athletic, I was really, really sporty. But I was struggling to walk ten minutes and when I was walking for ten minutes I was just walking incredibly slow, hunched over holding my stomach. Something wasn’t right. And then on top of that the other symptoms I had were blood in stools and essentially I was constipated as well. And the other symptom was weight loss, I lost about at least, easily a stone by that point and I was being sick lots, I just had no appetite, I was literally eating nothing.
And it didn’t occur to anybody that it might be bowel cancer?
Well we did ask the question to a certain doctor because this probably might be another question but we’ve a strong family history of bowel cancer. An extremely strong family history of it, something called HNPCC, hereditary nonpolyposis colorectal cancer otherwise known as Lynch syndrome but that’s down my Dad’s side.
Which syndrome?
Lynch syndrome. And basically it’s down my Dad’s side and basically there’s as I said a strong family history of bowel cancer, primarily and it’s also linked to other types of cancer. So we asked the question does, does he need a further test to rule out bowel cancer? I was told categorically no, too young for it to be cancer.
Did the GP’s know about this when you were going with all these symptoms?
Yes we told all of them.
So you made it quite clear?
They were quite clear.
So, you would have expected to have a scan perhaps?
Yes definitely. There was actually a booklet to do with HNPCC and we got the booklet out and on the back it said, symptoms of bowel cancer include, and I had every one of them and we showed to the specialist gastroenterologist and said do we need a further scan. Told, “No”.
Visited her GP eight times in 6 months with headaches and neck aches and started to think she...
Visited her GP eight times in 6 months with headaches and neck aches and started to think she...
This carried on for another month, I went to see him again. Again I was told there was nothing wrong with me. This went on for six months and I went to see my doctor eight times, this was my local GP, and he actually said there was nothing wrong with me. And I actually thought I was imagining this pain because obviously you trust your doctor, well I did because he obviously, he is trained to understand what the problems are and if he said 'There's nothing wrong,' there's nothing wrong. That's what, what I was thinking anyway.
So I began to think that I was just imagining this pain and it was getting worse and worse and I had to study for my A Levels, this was very, very hard because the fact that my neck was so very sore that I found it hard to look over my work to do lots of work and revision. And again I had the headaches as well so it was, it was quite horrendous.
His GP sent him for an X-ray when his blood test showed that it was not glandular fever.
His GP sent him for an X-ray when his blood test showed that it was not glandular fever.
So the next day my GP came to the house by 9 o'clock and said that it wasn't glandular fever but it was most likely to be a bacterial infection. But and gave me antibiotics. But he said then that for, for his own piece of mind to go for a chest X-ray just to make sure that my chest was clear.
People who do not have pain or discomfort may not be worried about their symptoms and may delay visiting their doctor for some time.
Says that he was not really worried about the lump that developed in his neck and therefore...
Says that he was not really worried about the lump that developed in his neck and therefore...
But again it still, you know, still didn't play and, still didn't go away at all and kind of continued to play on my mind. And I thought, you know, after a, some considerable time must have been a, a good two months or so of having this lump, I thought I'd better just go to the doctor's, my local GP, just to get it checked out. So I made an appointment and still wasn't at all concerned really, just kind of going along and it was all fine. And on that first appointment she kind of, it, well, my doctor said it was kind of a, a much larger than usual kind of lump and shouldn't really have been there, and still wasn't really raising any major, major issues and really causing me to worry at all. She just kind of said, 'Oh, we really need to get it checked out and perhaps go to a consultant to have it properly looked at and properly checked out. So she recommended me basically to a second doctor to go and have this thing checked out with. And again, still I wasn't really concerned, everything just kind of progressed slowly and I never really felt, never really felt any other kind of symptoms at all.
If a GP suspects cancer they will arrange for tests or send the young person to see a hospital specialist (consultant). Looking back, some teenagers thought their GP was more concerned than they let on. Some GPs were very quick off the mark, while others took longer to refer or made non-urgent hospital referrals. Teenagers and their parents sometimes still felt angry towards their GPs for not taking their symptoms seriously.
Feels that GPs should consider serious diagnosis earlier, even if it is unlikely because the...
Feels that GPs should consider serious diagnosis earlier, even if it is unlikely because the...
Stephen would like doctors to not automatically dismiss cancer as an option when investigating young people who are ill.
Stephen would like doctors to not automatically dismiss cancer as an option when investigating young people who are ill.
Yes obviously I was misdiagnosed with cancer and across young people misdiagnosis is a huge, huge issue, and obviously it’s statistically unlikely that young people are going to get cancer, so, but we’ve got to be realistic, I’ve got, given my doctor some slack about it, it was unlikely I’d be diagnosed cancer but when I’m in the waiting room feeling absolutely rubbish with x amount of symptom statistically it’s more likely that I’ve got something like cancer or it’s more likely something is wrong, you know if there is genuinely something wrong with me that warranted further investigation whatever it was, but just for whatever reason, probably mainly economical reasons, I wasn’t, I wasn’t referred for a further scan. Which is a shame if I was referred for a scan earlier the prognosis might be better, I might not be having all the treatment I’m having now.
The main message is to be aware that a young person might have cancer, and think about the diagnosis.
Yeah especially when they’ve come to this surgery x amount of times, repeatedly, and not had an explanation of what’s wrong or what even could be wrong really.
Says that his GP was 'pretty useless' but did refer him to a neurologist. He also explains that...
Says that his GP was 'pretty useless' but did refer him to a neurologist. He also explains that...
So you since the symptom started, until you saw the neurologist around?
May
Around May. So it's about eight month that you went to see your GP and they just gave you painkillers?
Yes, yes and sometimes not even that. They refused to really take my symptoms seriously, even though it was obvious that I was in a lot of discomfort. And all they did was examine me and, and they couldn't find anything. But I suppose that could be explained by the fact that my, that my illness is, my illness is a very rare, rare form of cancer and it's often not that easily detectable in the, in the earlier stages.
Believed he had a virus. Since his cancer is very rare he does not blame the GP for not sending...
Believed he had a virus. Since his cancer is very rare he does not blame the GP for not sending...
I would have said that its, it's a difficult thing to answer because I certainly wouldn't want to criticise anyone, I wouldn't want to criticise my GP. I mean my cancer is a very rare one I mean I think that it's about one in, one to two million people get Burkit's lymphoma. Or that type of, that type of non-Hodgkin's lymphoma but you, it was about, I started in January and I was referred to the hospital February, so it must, mid-February so it must have been about six to eight weeks.
But you know Burkit's being a very aggressive cancer so yeah I think perhaps I should have been in hospital a few, a bit, long before but I, I was kind of, I wanted to soldier on I, I thought it was just a virus I was con, I was convinced that it was just some sort of flu virus or a, or Epstein Barr virus you know kind of, I think its something to do with just, I don't know perhaps I'm just stubborn [chuckles]. So yeah I think I just wanted, well I didn't want to be hassle because I didn't think I was ill enough to go to hospital. And I think that, that sort of put my GP off because I didn't want to go in to hospital, I didn't think was ill enough I thought that you literally have to be at death's door to go in to hospital.
Her physiotherapist noticed a lump when treating her for shoulder pain and recommended an X-ray.
Her physiotherapist noticed a lump when treating her for shoulder pain and recommended an X-ray.
Is grateful to a junior doctor who picked up a sign of her brain tumour during an examination.
Is grateful to a junior doctor who picked up a sign of her brain tumour during an examination.
Anyway finally it was my time after I'd waited for about four or five hours and I went through. And before you see a physiotherapist you have to, you have to see a doctor who actually, she was an SHO doctor, a junior doctor and she looked, she tested all of, all of my body finding out if there were any problems anywhere and she couldn't find anything wrong with me, whatsoever. And the final thing she did was to look in to my eyes and I wondered 'Oh there'll be nothing wrong if,' obviously. And then she said 'Oh I just have to go and get something,' so she went outside the cubicle and about six doctors came in and I realised there must be something wrong but I didn't know what it was. And I thought 'Well I only came in for physiotherapy so what's wrong?'
And presumably you must be very grateful to that junior doctor?
I was very, very, very grateful. I would never have believed really that an SHO doctor, a senior a junior doctor would be able to diagnose something like this. When she looked into my eyes she saw the raised pressure that it, its called papilloedema and this is significant for, to say that there could be a brain tumour. So I think she knew what was wrong when she looked in to my eyes. Yeah.
Her GP initially thought she had an inflammation but when her symptoms worsened did a blood test.
Her GP initially thought she had an inflammation but when her symptoms worsened did a blood test.
I was fourteen when I took Acute Lymphoblastic Leukaemia, and I'm seventeen and it's, I've just finished my treatment in May.
Ok, tell me about your symptoms when you were fourteen?
I was feeling sick, I had a lot, a lot of nose bleeds, lasted for ages. Then I was dizzy and I was too tired and that was it.
For how long did that go before you seek medical assistance?
Oh, I was ill in November, then so I went to the doctors, he says I've got just inflammation. But they never says even where so I went right. So they gave me anti inflamatories it never worked, then. I went back again they just gave me more, still didn't work. I was ill over Christmas and New Year so I went back in January the 8th. And he says, 'Right, we'll take a blood test.' 'Cos I was dizzy, I had to sit down at the top of the hill and then I went in, and I was shaking and a man that knew me says, 'are you alright?' and that, he sat me down. Then the doctor took me, took me for a blood test. Then mum came in, and she helped me down the road. My, my auntie seen us and she had to carry me home, I couldn't walk. And the doctor says, 'We'll get the results within the week.' And mum says, 'No, you're getting them, like, today.' So she phoned, she phoned and says, 'Oh you're getting them today.' Then the doctor came in at half past five that night and says I've to go right over to the hospital. He never said what was wrong.
She did not have the problem of going to a GP and trying to explain her symptoms because her...
She did not have the problem of going to a GP and trying to explain her symptoms because her...
And also I've not had the problem of going to a GP and trying to explain my symptoms, I mean I've been, you know, apparently if I had symptoms it would be headaches and you know, migraines and problems, things like that, and to get to the diagnosis from that, I, I can imagine it's an absolutely nightmare. Some of them, you know, have had, had to go through some real problems, my friends that have been diagnosed, trying to get the doctors to listen to them, to take, you know, because obviously it's the last thing people expect a young person to have, which is very well but I think it's perhaps an idea that they err on the, on the side of caution and start with the worst possible scenario and work down instead of working up to it because a lot of the friends you know, that have had it have either got to such a state where they're very, very poorly or some of them, it's been left too late and there's not a lot people can do for them. Which is really sad.
So I've been lucky in that respect, the fact that I haven't had any problems and had, you know, I've sort of skipped a whole range of, you know, problems that I might have encountered.
Last reviewed December 2017.
Last updated November 2014.
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