Talking to specialist practitioners about results
A person who gets an abnormal Faecal Occult Blood (FOB) test result is offered an appointment with a specialist screening practitioner, usually a nurse. On the screening programme the nurses and doctors work together as a team. The nurse will explain the results of the FOB test, ask questions about the person's medical history, and offer further investigations, such as a colonoscopy. There is a useful booklet for people called 'The colonoscopy investigation'.
The specialist screening practitioner will usually explain the results of your FOB kit to you. We will normally at this time offer you a further investigation, called a colonoscopy, which is an examination of the large bowel. The specialist screening practitioner will ask you questions about your past medical history, any current health problems you may have, and would also like to see any medications that you currently take.
Some of the people we talked to explained what happened when they saw a nurse at the local hospital to discuss their results. The nurse explained that an abnormal FOB test result might be due to a benign (non-cancerous) polyp or other things. One man had been very glad that the nurse explained that an abnormal test result did not necessarily mean he had cancer.
- Age at interview:
- A white English man, a secretary/driver, married, with 3 children.
At this stage, all kind of things go through your mind. As far as I'm concerned, I've got no major signs or symptoms. I mean I know that when it gets to a certain degree there can be passing of blood from the back passage, there could be pain or discomfort. I'd got none of that at all. No outward sign of symptoms. So that was somewhat reassuring, and I'd only got to wait about three I think, or four working days before going along to talk to somebody about the colonoscopy. They were brilliant at explaining everything from A to Z. They went all the way through, and what was particularly reassuring was the fact that they gave me the odds. You know, how many out of 100 were likely to have problems. How many would have no problem at all, the fact that because it was abnormal, didn't mean to say that you'd got cancer, that you'd got anything wrong with you at all. And that any microscopic trace of blood which could come from various sources, would be sufficient for them to send you for the test, for the colonoscopy.
Another man said that the nurse made him feel 'at ease', 'like one of the family'. She described the function of the bowel and explained that polyps could be removed.
- Age at interview:
- A white British man, a singer, married, with 4 children.
Yes, can you explain exactly what happened on that occasion when you went to find out more about it?
When I went to meet the nurse at the hospital she took me into the interview room and was explaining to me the different parts of my body, my bowel, my large bowel, my small bowel and what happens, the function of all this area and that there are things everybody has got, well most people have got polyps in their intestinal system you know and that sometimes these do go cancerous but more often than not, nine times out of ten they're not, they're benign. And she really made me feel at ease, I mean she was terrific, she really was you know like one of the family.
Did she tell you about the colonoscopy at that stage?
Yes she did, she told me what the procedure would be, that I would go in there and they would sedate me if I wanted to and they would put me on my left hand side and they would go in with a camera and investigate, have a look at my large bowel and my small one and all my intestines and if there was any problem there with polyps, they would take them off while they were inside. And they assured me there would be no pain, because you don't feel pain when they're doing things inside you, if they have to cut anything you, it's only outside of the body that you feel any pain. And I can just honestly say I didn't, I never even felt a camera go into my backside. I never had any sensation of anything being inside me at all.
Many people said that the nurse spent between 30 minutes and an hour explaining what might happen during a colonoscopy. This man felt a bit alarmed when he was offered a colonoscopy the following week but then decided he wanted it done as soon as possible.
- Age at interview:
- A white English man, a retired railway parcels supervisor, widower, with 2 children.
Can you say exactly what happened when you talked to the nurses there?
Yeah, I saw one of the nurses and she explained to me what had happened with the samples I'd sent off and that there was some, they'd found were positive. I did ask how much blood there was and she said it was very, very minimal but I had; far safer to be tested than, or to have a colonoscopy which I hadn't heard of. I had known about it because my father's had one but I didn't know the name of it. And she went through everything, we were there about 3/4s of an hour, I think we overran. She was very, very helpful, she explained that well she, she told me that I could have the test the following week and that once again worried me a little bit because it's all so quick. But with hindsight it's better to be quick and get it over with than hang around for weeks and things get worse.
Did she explain that there was always a tiny risk with any procedure like that?
Yes, yes she explained to me that it's possible that by having the colonoscopy it could aggravate certain things. I didn't really understand it but I knew what she meant.
And it was worth the risk.
You felt you had a choice though whether you took part or not?
Oh yes, yes, yes, yes.
A woman had felt much calmer after meeting the nurse at the hospital. The nurse spent over an hour answering her questions about a colonoscopy, and explained that she would be able to have a sedative so that she would not remember much about the procedure.
- Age at interview:
- A white English woman, a retail manageress, married, with 1 child.
So, when we came back from holiday, I did the test straight away, sent it off, with a covering letter to say that I did sometimes bleed because I'd got haemorrhoids, had them for years, not a major problem you know. And the letter came back two days later. My husband rang me at work and said, 'Do you want me to open it?' And I said 'Ooh yes' [laughs]. And he said, they would like me to go to hospital and talk about the results. We went to the hospital, my husband came with me and we were interviewed, a lovely nurse, really really caring nurse. She spoke to us for at least an hour, I timed. Before we went I thought there's questions I need to ask, so I wrote down loads and loads of questions that, actually by the time the nurse had finished, it only left me with about two questions on my list that hadn't be answered. And it all sounded very very positive, really.
Most people were glad that the nurse went through all the advantages and disadvantages of having a colonoscopy. Some thought that the advantages were emphasised rather than the disadvantages, but they recalled that the risks were mentioned too. Indeed, one man said that he felt he was told too much about risks.
- Age at interview:
- A white English man, a retired soldier, married, with 2 grown up sons.
And then you say that you were invited to go down to speak to the nurses.
Yes the nurses.
Can you just go over what happened when you went to talk to the nurses?
Yes, when I went to talk to the nurses they explained again why the screening had to be done, it was all explained to me again why it was being done and then they explained to me that if I wanted to I could now have the colon, I can't pronounce the word, colonoscopy, I could have a colonoscopy, the scoping or I could even, I could leave it at that, I needn't go any further forward. They explained you know that they could; if I did have cancer it would be good to stop it. They gave me the advantages of having it done, they didn't give me very many disadvantages to me frankly. I was intrigued by the system, how it was done and I suppose being enquiring I felt that you know let's have it done.
So you did feel that you were given the option of not having a colonoscopy?
Oh yes I could have easily copped out then and said no I don't want it.
- Age at interview:
- A white British man, a retired archaeologist, married.
Then you got the results of the first test kit, it came back as abnormal and they didn't ask you to repeat it?
An appointment straight away to go down to the hospital?
I had an appointment straight away to go to the local hospital.
Did you go on your own for that appointment?
I did because my wife was at work and there was no reason for anybody else to accompany me, so I went along and I was given instructions about what would happen, what the procedure was about, what the likely outcomes would be and how the procedure would be undertaken.
Did the nurse explain that there's always a very small risk with a colonoscopy, did she give you the pros and the cons?
She did indeed, yes, and the leaflet gave some useful information about the risk factors percentages, where the wall of the colon could be penetrated and broken and the fact that was about 1 in 1,500 I think, which is an extraordinarily low percentage, so the risk factor was very, very low and didn't really play a part in my decision to have it done.
- Age at interview:
- A white English man, a lecturer, married, with 2 children.
Yes, I went, went into the hospital, went into a waiting room, there were not many people there, I think there was one person only in front of me. So that waiting process was a very quick process, part of the efficiency of this pilot scheme. I sat with the nurse, and I was shown diagrams of the bowel, I was shown pictures of polyps and things in the bowel, and the whole process of investigation of the bowel was described. It was defined to me which was the large intestine, I knew, I knew there was a large intestine, and a small intestine, but this was, you know everything was defined and shown. The level of concern was, was very real, it was a very, very sympathetic introduction to this sort of information. There was, as I've said before, I felt that it was the sort of advice that would be given to a close relative with a sensitivity that would be shown to a close relative. There was no conveyor belt feeling about the process at all. It was very personalised. I was told what the colonoscopy would involve, I was then told what would be inserted into my back passage, and what could happen surgically there. And that it was a surgical procedure. I was told that I would be not; it would be done without anaesthetic, but with a tranquiliser, and that I wouldn't remember anything about it afterwards. And I was also told about risks involved, such as a risk of penetration of the bowel by the instruments that were placed there. There was a risk, and I was given it as a percentage, you know as a one in so many parts risk, and it was, for me, it seemed a very small risk.
You decided then to go ahead.
I would, I would've, no, I would've preferred not to know the risks, but.
But, yeah I think I would yes. I personally would, because I just, you know its not my, what happens inside, in the course of that investigation, what happens, I don't see it as my business. It's the, you know, it's the business of the, of the surgeon that is performing the operation. And I personally am able to disassociate myself from it like that.
But presumably you could have decided at that point you didn't want to have a colonoscopy?
I was told very clearly that the whole procedure was my choice. Yeah, I could choose to have it, or I could choose not to have it.
So wasn't it important to know the risks? At that stage?
It was, it was, it was realistic. But you know, I'm just explaining my own state of mind. Which, I'm a pretty sort of casual person I'm afraid. You know, for better or for worse, I've always been a bit casual about things like that.
So are you telling me you prefer to trust the doctors' decision?
At the end of the day, at the end of the day, if I am advised on medical procedures then I would take the advice. I'm not putting myself in the position where I would second guess what medical people are telling me.
Some of those offered a colonoscopy in the last round of the pilot programme decided not to have the procedure. The people we talked to said that they were given time to think about whether or not to have one. For example, a woman was told that she could go home and think about it and then ring the nurse when she had made up her mind. However, she made up her mind on the spot and decided to go ahead with it.
- Age at interview:
- A white British woman, a retired care assistant, married, with 2 children.
Then you heard the first two results were fine, and the next time was abnormal and you had to go to talk to the nurse. Can you remember in more detail what happened when you went to the hospital to talk to the nurse about it, that first time?
I think she sort of, she really sort of said in the first place, it, you don't have to worry, because it just, it might not be anything serious, and she did ask whether or not I wanted to go and have the...
'if I wanted to go and do that. And she did say that I did not need to decide there and then.
Because I could come home and think about it, and then ring her up when I'd made my mind up, and like I said to the nurse at the time, 'Well if I'm not going to do anything about it, it's a waste of time me sitting here.' Because, I thought if I'd gone this far, I'd either have to have ignored it right from the very beginning, not even done the second test, which was abnormal as well, or if I was going to do it, and there is something wrong, I've got to do it.
Did she tell you about the possible tiny risks that go with having a colonoscopy?
Yes, yes, yes, I think you could bleed or something.
Well there is a very slight risk.
Very slight, but she said whatever risks were very slight.
Presumably you knew about the colonoscopy before you went to the hospital, because there was a bit in the information leaflet wasn't there?
Yeah, but you're not going to be one of them that has that [a perforation] done are you? You know what I mean. You know what. Yes, so it did say that you know some risk.
Anyway you made up you mind to have it.
Yeah, I made my mind up there and then because I knew that, first of all I was wasting their time if I didn't, and secondly I thought, if I go home, I might not. Do you know what I mean?
I could come home and think, 'No I'm not going to do it.'
So I thought, no, I've got to do it, now.
You made up your mind.
I made my mind up there and then. Yeah I did.
Many people recalled that the nurse gave them a phone number that they could call at any time if they had further questions. Several were impressed by the information they received, although one woman said that the nurse put the 'fear of God' into her with the detail about what could happen.
- Age at interview:
- A white British woman, a retired nursery nurse, widow, with 2 children.
And then you were invited to go and visit the nurses at the hospital?
Yes I did.
Can you explain in detail what happened when you saw the nurses?
When I saw the nurse she explained the situation of the unit and the fact that the nurse and the surgeon seemed to work together as a team. A very small unit in the hospital, and she gave me the book that you showed me.
That's an information booklet?
Information booklet yes. She was very good, she was very, she explained everything in great detail and as I say she gave me the, her telephone number so that if I thought of anything when I got home I could ring her without any problem at all.
Did she go through the pros and cons and any risk of having a colonoscopy?
Oh yes she did and she put the fear of God into me. She, yes she the fact that the bowel could be perforated, it all, yes she did go into all detail of what could, what could happen.
Did you have any doubts about going ahead afterwards?
Yes I did but I thought well now I've got this far you know you're in the system and you know, go through with it.
- Age at interview:
- A white English woman, a retired auxiliary nurse, married, with 3 children.
Going back, after you had the abnormal result, I think you said you then had to go to the hospital to discuss it with one of the nurses.
Can you remember what happened during that discussion with the nurse?
Um. Well I had a friend go with me because I was quite upset and she drove me because it was over at [the local] hospital, and as a matter of fact I knew the nurse who was sorting out the screening, so she was quite nice to me, and she was actually with me when I had the colonoscopy. It was her that rang me to do this interview, so the fact that I'd worked with her, you know.
Yes, she goes through with you all the advantages and possible problems of having a colonoscopy?
Did she explain any risks there might be, for example?
I think she explained the whole procedure, yes. And said that you know, she could put me in touch with other people that had had it done and had got cancer, but it had helped them because they'd caught it early. So yes, yes, she was good that way.
I didn't know she did that. Did you ever get in touch with anybody else at all then?
No, no, I didn't, no.
But she gave you that option?
She did say that there was someone who would speak to me, if I wanted to speak to them.
Yes, and I think that at that stage they give you another booklet about the colonoscopy?
Yes, yes they did.
Was that a good booklet?
Well it just explained the procedure, what would happen, yes, yes, you got a fair idea of what to expect, yeah. It had diagrams in as well I think.
Is that about the right amount of information do you think?
I think so, because you don't want to get bogged down do you, with too much info.
Did you feel you had to look anywhere else for any other information?
No. No I didn't. I just spoke to a couple of nurses that I knew and they tried to reassure me that, 'Oh you'll be alright' you know. It is, you know, not a nice procedure.
A man told us that he found it comforting to get all the verbal and written information. He said that after the appointment with the specialist nurse he felt more in control. He was glad to hear that the same nurse would meet him at the hospital and stay with him during the colonoscopy, thus providing continuity of care.
- Age at interview:
- A white English man, a bus driver, married, with 2 children.
Yes they [the specialist nurses] give you the information, they tell you the exact problem, they tell you about the polyps, they show you pictures of, you know, how they develop, they tell you about the, the procedure itself, and the aim of the procedure and obviously if they do locate polyps in, you know, in your bowel they explain how they can remove them with an electronic snare. And obviously if they can catch them in time and if they're not too big they can remove them with this snare via the colonoscopy, which if left, in time would possibly need major surgery. But obviously if it's caught in time they can be done quite easily and quite painlessly. They explained as well that a nurse, a specialist nurse from the hospital, will come to the hospital where the procedure is carried out and they will be with you from the time you arrive at the hospital and then they'll be with you in the procedure room as well to oversee the procedure.
And did you get any written information about the colonoscopy at that stage?
Yes, they'll give you leaflets that give you the information that you need to know really, yes.
Were you aware from reading the information that there might be some side effects or possible dangers in having a colonoscopy?
It's described as a very safe actually but there is, obviously there's also, there's always the possibility of perforation, but that's the main possible danger. But apparently it's a procedure that is considered very safe.
So were you convinced it was the right thing to do to go ahead and have the colonoscopy?
Yes, I was really, because if there was problem there, or a potential problem and I think really you need to know and it needs to be investigated because if there is a problem it's not going to go away by itself and it's no good ignoring it you know.
Did you feel you had a choice though, was it presented as a choice?
Oh of course, absolutely yes. Whether you want to proceed any further, yes it's your own individual choice, you have to make up your mind. They can give you the information, they can tell you the dangers, or if there is any problem. Also the benefits and they explain exactly what will be done. So yes, you're in possession of all the relevant information, yes.
Some people had other medical problems which had to be taken into account. For example, one woman had only one kidney and had diabetes, so she needed special blood tests before the colonoscopy. She said that the nurse went through all the advantages and disadvantages of having a colonoscopy and explained that if the bowel were perforated during the procedure (a rare event) a small operation would be needed.
- Age at interview:
- A white English woman, a retired home help, now a volunteer, widow, with 4 children.
Did you look for information anywhere else about it at that stage?
Er no because I knew I was going up to the clinic.
And they was going to explain. I'd only waited, I think I waited about a week before me appointment come through for the clinic and they explained.
How were you feeling, how were you feeling when you were waiting?
Worried, I was worried. And I thought, 'Well the only thing to do is get it all sorted out and get it done'. And when I went up to the clinic the nurses explained everything and they went through everything in detail. You'd got to give all your medical and everything so that they knew exactly what you'd, what they could do for you. And of course with me only having one kidney and having diabetes I had to have blood tests and I had to have a, test me kidney and test me diabetes. So that was alright. And then that come back and as soon as that come back alright they turned round and says, 'Right you can', and within a week I was having the colonoscopy done.
Did they explain in detail the advantages and disadvantages and any possible risk of having a colonoscopy?
Yes, they turned round and said well the advantage was that if you go at least you know whether they can treat you if you've got it, if you've got cancer they can treat you. If you haven't, at least you know, you'll know what it is, whether it's a fibroid or a...
...Polyp or anything you know they can get rid of them, they'll scrape them out and it's up to, you've got the decision whether you want to take it or not.
Did they explain any disadvantages or risks?
Well they said the disadvantage was that while they were scraping at the, scraping the polyp off there could be a tear or while the camera was going up if you was, if it was if the camera caught you could have a tear and they'd have to repair it and everything.
You'd probably have to have a slight operation, have to repair it. But thinking that way you'd sooner have that done and know that you were safe than not have it done at all.
So you put your, I mean you put it in perspective, you can either turn round and say, 'Right, well with that risk I'm not going to have it done', or, 'With that risk I'm not going to have it done or I'm going to have it done and if it, if you come again, up against a risk that's just the snag of it.'
So you decided to have the colonoscopy?
Last reviewed May 2016.
Last updated May 2016.