Why some were reluctant or did not take part in bowel screening

Many factors affect a person’s decision whether or not to take part in screening for bowel cancer (also see Why people decided to take part in screening). In most countries, such as the USA, screening is not free, so cost probably deters many people. In the UK screening for bowel cancer is free.

People may be reluctant to take part in screening because they believe they are at low risk of developing the disease. One man we interviewed, for example, said he only took part in screening for bowel cancer because his wife insisted.

He did not believe that there could be anything wrong because he felt fit, members of his family…

Age at interview 67

Gender Male

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I undertook the screening simply because my wife said, Well do this and were in the right age group for this particular screening, which is the pilot scheme here. But I didn’t feel it was necessary because we were a fit family and our eating habits are what they regard as healthy eating now. You know, but were used to having plenty of vegetables and fresh meat every day you know, so I didn’t feel that there was anything wrong with me and I didn’t think I’d caused any, any ill effects on myself. It was only just recent. It was just at, about that time that the children said I didn’t look so good and that I didn’t, I wasn’t as strong as I used to be but I just put that down as an ageing process.

So it was good that you went ahead.

Yes it was very good.

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Lack of time may also deter some people from taking part. In some countries people have to collect the test kit from their general practitioner (GP) or from a local hospital. In the UK people receive their test kits by post, so lack of time is less likely to affect the initial decision to take part. However, the man mentioned above was reluctant to repeat the test, partly because he led a busy life.

He was reluctant to repeat the test because he had little time.

Age at interview 67

Gender Male

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And what was your reaction when you heard that you had to do it again and it was a positive result for that?

As I said, I just thought, they’ve found someone they can, prolong the job with. You know I’ve sent it off and now they say it’s positive. Of course probably what I was doing was disbelieving what they were saying to me or misreading probably. But I just felt that, Oh this is not for me. I can’t be dealing with this going on like this. Actually I thought it was going to go on for too long, you know. Because I’d got a busy life, I’d got things to do. I didn’t want to keep having to spend a few minutes in the morning spreading faeces on little discs, you know. So it was quite an inconvenience more than anything really if I, if I sum it up.

But your wife persuaded you to send it off again?

Oh yes. She was quite insistent.

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People had other reasons for being reluctant to take part in screening. Many said they found the idea of faecal occult blood test procedure very unpleasant and this had at times put some people off doing the test, at least temporarily. Some finally rationalised that it was no worse than dealing with babies’ nappies (Note that many people found the test easy – see Doing the faecal occult blood test at home).

One woman had first decided not to take part because she found the idea of doing the test “pretty disgusting” (see Initial reaction to the invitation for screening). A woman with arthritis was concerned about how she would manage to do the test.

She didn’t do the Faecal Occult Blood test immediately because she thought it would be a little…

Age at interview 68

Gender Female

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And I think there was a time, you hadn’t got to do it right away, you could leave it a few weeks, but it had got to be done within a certain time. And I thought well if every time I open the drawer, it’s going to be at least once a day, I’m going to see it, and I thought, Oh, I might as well do it. At least theres nothing wrong with my healt, never thinking, probably there might be something wrong. Because I hadn’t had any symptoms at all. Nothing at all.

What put you off doing it?

Just because I thought it was a little bit messy.

That’s what it was really. A little bit messy. But it was, because it was just the thought of the messing, just messing. Although you have babies, and you move whatever, sort of thing, you just think, Oh I can’t be bothered with this But I decided to do it, and in a way I’m glad I did, because they did say, [the nurse] said, in six months after we knew the results, in six months if I hadn’t have done it, it could have been a lot worse. And I would have had to have had follow up treatment, so I think I’ve been very lucky actually.

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Even once they had decided to be screened some delayed doing the faecal occult blood test for various reasons. One woman worried that the doctors might find a problem and did not like the idea of a colonoscopy. She also worried about putting her stool samples in the post, saying she would feel “devastated” if the postman opened the sample card. A man questioned how hygienic it was to send samples in the post.

She delayed doing the test, partly because she was scared of what the doctors might find.

Age at interview 62

Gender Female

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You said you were frightened [of taking part in screening]. What was your main fear?

Finding out I’d got something wrong because I mean everybody checks themselves, don’t they, like for blood or anything like that but I mean this could detect even if you didn’t see it with the naked eye. So I mean like, I thought, ‘I think I’m alright, well I know, you know I know I’m alright’, but then I thought, ‘Well may be you’re not, may be you’re not.

Mm and what was your huge worry if they found something wrong?

I think it was if I’d got to go to hospital, I didn’t mind doing a test again, I mean that’s simple, you do it yourself. I’m not very keen on having things pushed up my body you know what I mean like? But there again I’d rather have things up that than down that way.

In the information booklet they said a little bit about colonoscopy.

Yes, yes well I know about that because my sister has had one you see, I know what it was like and what to expect.

So did that affect your decision, the reason for putting it [the test card] in the drawer for a bit?

Yes, yeah it did, it was the next step. The only thing that made me put it in a drawer was if I had got something wrong with me, you know. I mean you always look on the black side, don’t you. People do, I think they always think theres going to be something wrong, I know theres going to be something wrong. (‘)

And the other thing, you said you didn’t like the idea of it going in the post.

No I kept thinking about that.

Can you say more about that?

Well like you know, (‘) I kept thinking, ‘What if it gets lost, or they you know, mess with it or something. I didn’t want parts of me going through the post, you know silly things, it was just, it was just another excuse wasn’t it?

You were worried about the people at the sorting office?

Daft things, yeah daft things like that. Like you know like them coming back and saying, ‘We had to open your mail for so and so and we found,’ oh you know. It’s just daft things that, you think, ‘Oh I’ll not do it because that will happen with the post’ you know.

How would you feel if that had happened then?

Devastated [laughs] yeah devastated I wouldn’t like that at all no I wouldn’t. No I’m a very private person, I wouldn’t like that at all you know. I’d die, I’d curl up.

What would your feeling be, you said devastated, what other feelings?

Awful just, you know I don’t know I’d feel I don’t know just stupid really that you know that that had got opened in the post sort of thing. It was just daft things and these were the sort of things that I was thinking I’m not sending that through the post you know.

So why were you so terrified it might get broken in the post and that the postman would come back with it?

Just the thought, it’s just daft things, it was just things to not do it, it was another excuse not to do it so if it went in the drawer that was it, out of my, out of sight the first time and I thought that’s it I’m not looking at that, I don’t want to know about it see.

And it was the same with the post I thought they’ll find it in the post and

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Others delayed because they felt well when they received the invitation for screening and at first felt they did not want to know if anything was wrong. One woman said that even when she was invited for breast or cervical screening she argued the pros and cons with herself before attending.

Her initial attitude was, ‘If you don’t know, you don’t worry.

Age at interview 66

Gender Female

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Right back at the beginning with the pilot study, did you wonder what the pilot study was, or was it all quite clear to you?

Well I thought, I thought actually, I did think it was a good idea, having, as I say, worked with clients that are like that, I did think maybe this is a good idea. But then when you’re set with the task of actually, ‘should I do it? In black and white; ‘should I do it or shouldnt I do it? You think, Mm, I Don’t know if I want to do it.

What put you off the most, what different factors made you [delay]?

I think, I think the thing that put me off most was, if there was anything wrong.

I mean, I suppose its like really, which is silly, if you Don’t know, you Don’t worry.

What you Don’t know you Don’t think about do you?

So it wasnt the actual doing the test?

Oh no, no. No, it wasnt that, it wasnt that at all, it was the thought that, well I’m alright.

Which luckily was right the first two times, I was.

But I think, I think that was it, more than, more than anything.

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Some people had been invited to be screened but had declined. They explained that they were not put off by the idea of handling the samples – indeed one woman had worked as a carer and another as a nurse. One said that she liked the information leaflet that arrived with the initial invitation for screening and at first had intended to take part, but she had found the instructions that came with the faecal occult blood test kit unclear. She did not realise that she had 14 days to produce the 3 samples and said that if she had been asked for a one-off sample she would have done it “straight away.”

Explains why she did not do the test – mainly because she thought she had to take stool samples…

Age at interview 68

Gender Female

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Can you remember what was most important in the information that swayed your decision?

Well nothing in the [initial] information. That was all very straight forward. It was just the actual doing of it; actually doing the test itself that completely put me off.

Which aspect of actually doing it was the, put you off the most?

I think it was the actual having to take the, the faeces at different times. I just couldnt get my head round to doing that.

I think if it could be made simpler.

And easier and if you could do it in one go then I think I would consider it. But having to do the three and all that, it just really, I just didnt um

Was it the thought of actually having to handle faeces?

No, no because I’ve done that in my career as a carer, no it was just the time element and how you had to go about it and, and if it had just been one, a one off then may be I would have considered it, but it was just the time, it was just having to do the three, that really, that really, it was off-putting for me. I just, I would have just like to have gone to the bathroom, done what Id got to do, posted it off and be done with it instead of having to keep going back.

Did the information book make it clear why they asked you to do it three times?

Well yes because of course the different; you know passing the different faeces obviously can give different, different readings. That is the only thing I can say I found it a bit complicated.

Did the information make it sound complicated?

Yes, yes actually it did.

I wonder how we could make it a bit simpler. Would you have found it easier if youd had to go to the GP and had the nurse help you do it?

Yes.

And might you have done it if theyd sent you to the GPs?

Yes, yes most definitely. It was just I found it very, as I say I found it complicated, and these different slots that youd got to put it, nothing at all to do with doing the, with the faeces, nothing at all, it was just how Id got to do it.

Please could you explain what was most difficult for you and what was most confusing?

The time element, I didnt know whether once I did it, with taking my first sample I, I didnt know whether Id got to take my next sample the next day and the last sample the following day or, it didnt seem to explain properly. I didnt realise until I was being interviewed and it was pointed out that Id got fourteen days from opening the sample that Id got fourteen days to do it when it was convenient to myself. I thought it had got to be 1, 2, 3 right off. Now I know, and it’s been explained and I can understand, I’m willing to do it because I know that I havent got to force it within, I’ve got fourteen days. So it can be done at my convenience and when it’s suitable for me, as long as it’s within those fourteen days. Before I thought Id got to do, and it isnt everyone that [laughs] that can do it three consecutive days. And I find now youve explained this to me that I feel more at ease with it.

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A retired nurse had also decided against screening. She thought she should take part and even had a friend who had survived bowel cancer after finally attending screening after 3 invitations. In the past she had delayed having cervical smears, and had developed cervical cancer, so understood the advantages of an early diagnosis. Her main reason was that she had once had an endoscopy for gastric problems, which she described as “the worst experience”, so she was afraid of other investigations, such as colonoscopy. She knew that it was possible to have an anaesthetic or a sedative during a colonoscopy but said she reacted badly to both sedation and anaesthetic.

She decided against taking part because had reacted badly to sedatives and anaesthetics and…

Age at interview 67

Gender Female

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Please can you tell me your story in relation to screening for bowel cancer with as much detail as possible?

Well I’d been invited twice and I’ve received the package at home, you know from the local hospital, NHS trust and on both occasions I’ve just disposed of it and not sent it back. I suppose you’d just call me ‘chicken. I don’t really want to know, you know at that time. Maybe in the future if I was invited I might do it again but at, on both occasions I, I just don’t want to know. I couldn’t cope with knowing that you know if they sent for me again and said it was inconclusive or I’d definitely got cancer of the bowel you know I’d just be paranoid and thinking about surgery and treatment and investigations. One of the things that does put me off is the thought of having a sigmoidoscopy. It actually, you know it just feels me with horror. I’ve had an endoscopy and it took the doctor two years to persuade me to have that done for gastric problems and even being an ex nurse they tell you you’re going to swallow this tiny flexible tube, you know it’s not a tiny flexible tube at all, and it’s the worst experience I’ve really had so I just couldn’t even tolerate the thought of having a sigmoidoscopy.

Or a colonoscopy?

Or a colonoscopy, no, no, no not at all, it’s, it just fills me horror. And that is, that is the two reasons you know I’m just a coward I think. So may be, may be in the future if I was invited again I might think about it. But I would be just praying that it would be totally clear, that I wouldn’t have to have further investigations, I think that’s what bothers me.

Can some people have the choice of having a sedative if they want to?

Yes mm.

So even if you, even knowing that you could possibly have a sedative.

Mm.

You still didn’t want to go ahead because of the investigation?

No, mm, mm. And when I had my endoscopy I didn’t have a sedative.

Could you have done?

Oh I could have done but I didn’t fancy.

Are you not keen on investigations?

No [laughs].

Even with a sedative?

Yes.

Why don’t you like having sedatives?

Because I don’t react very well.

Oh.

Mm, mm. I had a minor operation recently but I chose to have a spinal, I don’t react very well to sedatives and anaesthetics. You know I feel really, really yuck and horrible for days, not just hours. So I put up with the endoscopy without a sedative but.

So your greatest worry was that if it came back that there was a problem.

Mm.

You would have to have further investigations such as a colonoscopy?

Yeah mm, mm.

And you wouldn’t want to have a sedative and therefore you were worried about the discomfort?

Mm.

Yes I can understand that. In spite of the fact, well because you were a nurse you remembered what people had been through.

Yes that’s right and then on the other hand

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A man who had decided not to participate said that he understood the importance of screening and even wondered if it might help to make it compulsory, with a fine for non-attendees.

He wondered about making screening compulsory.

Age at interview 68

Gender Male

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Do you want to say any more about screening?

Only that sometimes you might reflect that a lot of people, perhaps like me with bowel cancer [screening], tend to turn away or shy away from the implications or ramifications of it. You wonder sometimes whether it might be worthwhile making screening almost compulsory, in fact perhaps offer screening and impose a fine if you don’t go for the test, a bit like the Australians do with the general elections if you don’t vote you pay a penalty. Now I’m sure that that could get argued about fairly sort of strenuously but theres a thought, theres a thought, it must have a degree of mileage and I’m sure somebody has thought it through.

If you were told you had to go and be screened how you would you feel?

Like pretty well everybody else. I was told I had to do National Service so I did it and if somebody said get screened or you’re fined ‘100 guess what, as a pensioner I’d get screened wouldn’t I?

I don’t know, how would that help? I haven’t even thought it through, it’s a thought that only occurred to me while I was talking to you.

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He decided not to do the test partly because of his past experience of colonoscopy, which he had found embarrassing, undignified, and depressing, and partly because he had seen a friend die of bowel cancer after a series of operations. That experience, and his brother’s recent death from cancer, had made him pessimistic about treatment, and he did not want to dwell on cancer (note that most people we talked to found the colonoscopy less uncomfortable than they expected – see Having a colonoscopy and treatment during it).

He found colonoscopy embarrassing, undignified and depressing. This was one reason why he did not…

Age at interview 68

Gender Male

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Yes I’m not totally sure of the year but I reckon about five years ago I first noticed blood in my stools. First of all I thought, well perhaps it’s beetroot I’ve been eating, but then it persisted for a short while. So I went and saw my own doctor and he examined me with a rubber glove and his finger and he said ‘I don’t think theres too much of a problem but nevertheless I’ll refer you. And I was referred to the hospital within a very short space of time, where I went through the joyous indignity of the colonoscopy. It was not the most accommodating of experiences, I said to my wife afterwards, ‘I went in there a very fit and healthy 60, 62 year old and I came out a broken man. I really found it quite difficult. I have to say the people there, the doctors, the nurses everybody else in the department were absolutely flawless in the way that they helped (‘).

The colonoscopy is not particularly painful but I did find it acutely embarrassing, especially when one of the nursing assistants looked at me and said, ‘Oh I know you,’ which I thought [laughs] well this is the one time I just don’t want to know anybody. But nevertheless the process was complete within I would think about 20 minutes or so.

Were you offered a sedative at all?

No, no I wasn’t. I was asked whenever the camera was travelling whether I was feeling any pain, and he did say at the time, ‘There is nothing that we can see that is in any way a cause for concern.

Would you describe it as uncomfortable or painful?

Uncomfortable rather than painful. After that it was just a question of getting back into my civilian clothes after the surgical clothes and leaving the hospital and actually being, not humiliated that’s the wrong word, but I felt very down after the experience, I really felt that it wasn’t one that I really wanted to go through again unless it was absolutely necessary. But a few years later I had fairly sort of massive haemorrhoids so I did have to go through the experience again only not to the same sort of extent. But really that was the sum total of my experience as far as the colonoscopy was concerned.

And afterwards you said you came out feeling quite ‘down.

Mm.

Can you elaborate on that a bit?

Well I was a fit 60 year old who was doing a lot of running and still playing rugby on occasions and suddenly I was a wizened little man, (‘) I felt really depressed by the whole event.

How long did that feeling go on for?

Oh not long, not long, I soon bounced back, may be 24 hours. But my wife will probably tell you, I rang her and said, ‘I feel,’ as I said humiliated is not the right word, but .(pause) I think inevitably when you’re a 60 year old plus male and I’d been very fortunate I’d never had any time in hospital before in all my life, it’s a fairly sort of salutary experience. And it was, for me.

Were you given adequate preparation and information about what was going to happen beforehand?

Not particularly. I mean the mechanics of the process were explained to me but I don’t think you grasp, I think you have to remember that I, I grew up in an age where the body was almost sacrosanct, you know it was at the time when it was considered inappropriate ever to be seen naked in public, or even semi naked. Whether that made a difference I don’t, I really don’t know but that’s the way I felt and that probably has led onto my reaction to the offering of further

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Having seen a friend die of bowel cancer, and a brother die of a different cancer, he did not…

Age at interview 68

Gender Male

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Well [laughs] my wife told me I was a bloody fool anyway for not doing it [the screening test] but we haven’t discussed it depth. And certainly weve had friends who’ve had the tragedy of having a husband having passed away through having bowel cancer and one might have thought that given that, as an association, I would do something about it. The other thing of course to say is that because I saw my friend go through all the trauma and all of the operations associated with discovering that he had bowel cancer, and he was a very brave man, I somehow felt that there seemed to me a degree of inevitability about discovering it. Now I know that people do have operations that are successful but my friend’s case was one where I think he had three or four operations and the ultimate, having fought very hard, very brave he was, he passed away. And I think sometimes you tend to turn your face to the wall to be truthful, tend to switch off and perhaps not take proper sensible intellectual consideration on these things and that’s what I think that I’ve done.

So from what you’ve said does that suggest that you’re not very optimistic about treatment for bowel cancer?

Yeah, I suppose that’s true.

Is that what you meant?

Yeah it’s, it’s an, it’s unfair because it’s just based on one person, so it’s not, it’s not a fair statement I suppose about treatment from bowel cancer generally. I know that there are remarkable successes with the early treatment of bowel cancer but my friend did suffer tremendously through a series of operations that he had for his cancer. And I, I found it, I’m very proud of him, he was great, but as I said I think sometimes you, you tend to switch off and think well I’ll have another pint and worry about it tomorrow, or two.

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