Symptoms and diagnosis of bowel (colorectal) cancer
“Bowel (colorectal) cancer is the 4th most common cancer in the UK after breast, lung and prostate cancer. In the UK around 41,900 people are diagnosed with bowel cancer each year.” Cancer Research UK January 2016
- Some of the symptoms of bowel (colorectal) cancer are:
- blood in the stools,
- a persistent change in bowel habit,
- unexplained weight loss,
- unexplained tiredness,
- pain in the stomach (abdomen) or back passage,
- pain, discomfort or bloating after eating and a
- a feeling that the bowels have not been entirely emptied.
These symptoms do not always mean a person has bowel (colorectal) cancer as they can also be symptoms of other, less serious illnesses. It is possible to have some rather than all the symptoms, or to have the disease for some time without noticing any symptoms at all. This makes it hard to decide when to see a doctor. It also makes it hard for a doctor to know when to refer someone for further investigations. NICE – National Institute for Health and Care Excellence has produced guidelines which help GP’s make decisions about when to refer people to specialists when they present with symptoms that could be caused by cancer.
People who do not have classic symptoms or who are considerably younger than average when they develop the disease often experience misdiagnoses and delayed treatment.
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.
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”.
She delayed taking up her GP's referral for further tests because she was frightened.
And I couldn't go out until about lunch time because I'd go about four or five times during the morning and so I went to the doctor's I suppose about three, well three or four weeks and he said then, because he wanted me to go to a, to hospital and have tests, and he took a couple of blood tests they did, but I'm, I am really scared and I kept saying to him "Well give me another couple of weeks and it might sort of clear up".
Anyway I finally, well my daughter really kept, she said "Mum, I've had enough of this," she said "I'm coming next time and you're gonna go to the hospital and have tests if its," you know. So the blood tests come back and it was a little bit abnormal so, he said about, so she said "Yes, my mum is going" so he made the appointment for me to go.
Another woman, who had seen a consultant once, felt embarrassed to go again about worsening symptoms. Many people assumed at first that their symptoms were due to stress, travel, or a change of diet. One man (see below) lists the many reasons he came up with to explain what was happening to him.
Having seen a consultant once she was reluctant to go again.
I felt very well, I still had the bleeding but I felt very well, we had a wonderful holiday, came back. A few trips up to London, just generally got on with my life.
But then the bleeding really did get quite bad, it was every day, quite a lot of splashes in the pan and I was worried about it and my daughter said "You really ought to go back mum" and I was very nervous about going back and embarrassed because the consultant had said that there wasn't, he couldn't find anything wrong.
But, because she nagged me so much really I, I did go back, I made another appointment but I didn't go back straight away. I was offered an appointment straight away and I said "Oh, no, it's alright," you know. "It can wait a couple of months."
When I did see him finally, I'd had the symptoms for about a year and this time when he examined me he realised there was something wrong.
Lists the reasons he invented to explain his symptoms.
And one particular occasion, the first time in my life ever we were out shopping and in the afternoon I went to the toilet in a department store. I thought well this is crazy, something's wrong and I began to think I had piles (laughs) of all things.
I bought some salt, put it in the bath and thought I was doing ever so wonderful stopped taking the vitamin tablets, stopped taking the backache tablets, all these things I tried to eliminate thinking they were help causing the problems.
One particular time there was a little bit of blood in the toilet water and I thought oh it's because I've been straining, that's what people say.
And then I thought well I must watch a little bit more carefully and I began to watch and after I'd been to the toilet I'd looked in the basin and a dark red colour was coming out of the toilet and I thought oh strange, oh it's all that beetroot I've been eating, I've a passion for beetroot. I kept having reasons why I kept having these symptoms.
The symptom that most often prompted people to see their doctor was rectal bleeding which could be slight or occasional or heavy and persistent. One man describes what he experienced and his GP's prompt response. Other people who received quick and appropriate attention from their GP's were invariably grateful. Other people were frequently misdiagnosed with piles (haemorrhoids) or irritable bowel syndrome. Some people were treated for constipation or diarrhoea for as long as 15 months before further investigations were pursued. A young woman whose symptoms developed while she was pregnant was offered a series of explanations and eventually realised what was wrong herself when she saw something about bowel cancer on the television.
He describes his classic symptoms and his GP's response.
So I thought 'oh I must have piles'. But on inspection it wasn't piles and it seemed a bit strange, but anyway that was that.
Then, later on I had stomach pains and a lot of wind and I was going to the toilet but nothing was happening and then I had another lot of, from the back passage and it was all mixed with up with wind and pains and all that.
Anyway I then, this went on more and more, I soiled my pyjamas twice, I was up in the morning very early, went to the toilet, more of this redness which looked like blood.
I went to the doctors, he gave me an immediate examination of my back passage, confirmed a haemorrhage caused by a possible tumour and filled in a form for me, and it all went from there.
She realised what was wrong when she saw a piece about bowel cancer on television.
She did agree then to refer me to a specialist but the appointment was quite a long way away so I decided to go privately. So I went privately to see two consultants both of whom thought, one thought there was a bit of a problem but would probably settle down after I'd had the baby and the other one really thought I had an irritable bowel or something along those lines.
When I had my baby that was in September, obviously I was very tired still but then you assume that, when you're a new mother you assume that you're going to be tired anyway and the symptoms continued.
I'd actually seen something on TV which really made me concerned. She'd actually had bowel cancer and she was explaining that she ended up, by the time she was had seen something, by the time that she'd actually realised there was something really wrong she was saying that when she was going to the toilet it was like sort of a tube of toothpaste and I know that sounds a bit horrendous but that's actually what it ended up being like for me.
So I did keep going back to the doctors and they thought there was nothing really seriously wrong but they did book me in for an appointment finally to have a barium enema which was in the December.
Sometimes delayed diagnosis was unavoidable. One man underwent numerous tests over a period of 18 months but needed surgery to confirm his diagnosis because his tumour was 'hidden' and extremely difficult to detect by other means.
Other people, and especially those who rarely went to the doctor, felt that delays had occurred because their GP or consultant had not acknowledged the persistence or severity of their symptoms or they were simply not being believed. A woman who felt that her consultant did not believe her started taking someone with her to appointments 'so as they could hear what he was saying'. A man, who was in 'a terrible state' with vomiting and severe constipation, saw two different GPs who did not connect his symptoms to bowel cancer. His son took him to hospital where he had surgery a few days later. Stephen had experienced six months of symptoms and many visits to his GP and A&E before being diagnosed.
Stephen’s symptoms became really bad and he ended up having emergency surgery for a blocked bowel. The surgeon removed half of his bowel and after a biopsy of the material he was diagnosed with bowel cancer.
So I was very, very uncomfortable, very uncomfortable. And this time we went into the hospital and someone had a feel about my stomach and then the surgeon was called down, well we didn’t know he was the surgeon at the time but a higher doctor was called down to have a feel of my stomach and he straight away said, then I was sent for an emergency CT scan. The CT scan identified a blockage, is what they called it,
Was that the first CT scan you had?
The first CT scan up to now, it was just X-rays even though we pushed for CT scans, we pushed for a colonoscopy, just something further, more thorough.
Mm, all you’d had is plan X-rays before that?
Yeah. Yes up to that point just had X-rays. Now we had a CT scan and they identified an actual blockage in my bowel, an obstruction is the exact word they used and they said, “We’re going to have to go in with surgery to, to remove that obstruction.” By this point they potentially had a better idea of what it was but they called it, “Just an obstruction,” what they say, we went in with surgery and it ended up being a five hour operation I think it was.
And then the surgeon after the, the operation said, “We had to remove half the bowel, what we removed looked ugly” was the term he used. “We’ve sent it off to the lab, results will be back soon.” And then by this point he pretty much knew it was cancer. We thought it, yeah potentially it, ‘cos why else would he remove half of my bowel. But we waited for the results to come back and that actually confirmed yes it was unfortunately bowel cancer.
She saw two GPs in the same practice who kept giving her the same tests.
I must have said to them at some point you know "I've, I think I've had that test done before." And I was trying to sort of say to them like, you know, "I've got terrible backache" and it was obviously constipation but because it was in the kidney area, they just automatically assumed that you had a kidney infection.
I mean I asked to see my GP notes and I flicked through them and I did notice that sometimes the odd occasion hadn't been written down in, in the notes.
Your visit hadn't been written down?
Yeah, which was wrong because everything should be written down and um, it just seemed to me that, why didn't they pick up on someone that never ever goes to the doctor's, which I didn't, and then all of a sudden for the last six months they're there, once a month, if not twice a month.
You know why can't they pick up on something like that as well? To me its so obvious, like if you don't see anybody for years or, on the odd occasion you see them, you know, and all of a sudden they're going, then surely there must be something not right, you know.
He feels his GP did not make good use of his family history and medical records.
Again, if I'm being critical it's all very well giving the GP the information but he's got to pluck it out somewhere. If I present with a symptom like blood in the faeces I think they ought to take that seriously.
I didn't take it seriously because I'm stupid and had a history of never going to GPs and being proud of it and etc.
And I went three times or four times and I was you know sort of almost, not dismissed as such, but it was never diagnosed as anything more severe than piles or muscle pain.
I really would take family histories and we've got computers nowadays so presumably if somebody presents with blood in the faeces then something should go 'Bong'. And I mean I'm not a computer person but you know I would imagine that they should be alive to something like that when I present with faeces in the blood sort of three or four times and er I feel there's a failure there.
The advice consistently offered by patients to others experiencing possible symptoms of bowel cancer was to seek immediate medical attention, to trust their instincts and to insist on further investigation if the problem persists and they still feel that something is wrong.
He urges people to seek advice early and to insist on further tests if no convincing diagnosis is...
I think the worst part about the whole deal with bowel cancer is that if you don't get bleeding, people don't think they've got bowel cancer. I never had bleeding.
I think one can walk about with it for a long, long time before you realise what you've got, that's the worst part about it really and then obviously as you know if you walk about with it for too long it can be too late. But you know one doesn't know and it's a difficult thing and I think, not blaming anybody, but I think the doctors as far as they're concerned are not positive enough.
When one's complaining with diarrhoea and they see that you're anaemic, they should all really jump to conclusions that maybe you have got something wrong, not just pass it off as anaemia.
If one's got anaemia there's a reason for it, not just left to say that you need to eat more greens and you know that's right.
So I haven't got the needle to anybody, maybe I've got the needle to myself for not seeing to myself quicker, you know when I was feeling rough. I just thought I was very, very tired.
But it just shows you, you know, that you've got to be more, more positive about yourself and maybe even if it's cry wolf, it's not such a terrible thing either.
Last reviewed August 2016.
Last updated August 2016.