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Bowel Screening

Initial reaction to the invitation for screening

People invited to take part in screening for bowel cancer receive a letter explaining the reason for the invitation and an accompanying leaflet. The leaflet describes the benefits and disadvantages of screening, and notes that screening may not be appropriate for everybody. People can call the programme Freephone helpline on 0800 707 60 60 if they have any questions or if they do not wish to be screened. They can also call this number if aged 74 or over and wish to be screened. 

The people we talked to described how they had felt when they had received the letter and leaflet. Many did not relish the prospect of collecting the sample, but negative reactions were often transient if they reasoned that other people were doing the same thing ('Yes, it's unpleasant and distasteful but it's part of life'), and that the test might save lives. Some were pleased to be included in the programme, especially if they were aware of bowel cancer or other bowel problems in the family. A woman who discussed her invitation with her husband, who had had bowel cancer, said that he told her, 'There's not even any question. You just, you must do it'.

 
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She was pleased to have been invited to be screened.

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Age at interview: 74
Sex: Female
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Yes it was 2002, they were doing a pilot scheme in the area and I was one of the people to be screened. I was sent a little packet (') and all the instructions to tell me how to proceed and I carried it out. I was quite pleased to think that I'd been included because it's something you think about and don't get to around to doing and I wasn't really nervous about it, and I did the test ('). My brother he had bowel cancer, so I was quite happy to do the test.

One woman had had bowel cancer herself in 1990. This had been successfully treated, but she was glad to be screened because she wanted reassurance that she was still free of the disease.

 

Screening reassured her because she had had bowel cancer long ago.

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Age at interview: 72
Sex: Female
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When I heard of the testing, money was made for the testing, I was pleased, having had a history of bowel cancer many years ago. So it gave me reassurance that I at least, I would partly know that I was still free from the disease. It was a very straight forward system, the kit came in the post, as far as I can remember and I followed the instructions without any problem.

One man thought it obvious that he should take part.

 

Says that screening might prevent disease and save life.

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Age at interview: 59
Sex: Male
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What were your feelings about that letter?

I thought, well you know why not really, I mean you need to know and if that service is available then obviously you take advantage of it. It's no good ignoring things, knowledge is much better and if this thing is found out early well obviously it's to be advantageous. I mean left a long time it could mean a nasty operation, I mean but if caught in time could save a lot of pain, a lot of trouble and obviously it could save your life, which is a good thing.

Some people were not surprised to be invited to be screened for bowel cancer because they had read about the programme in the local paper or heard about it at their doctor's surgery. 

 

When he received the invitation he wasn't surprised because he had read about the programme.

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Age at interview: 67
Sex: Male
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Yes was invited in 2001, I knew the invitation would be going out, I had seen information either in the press or something at the doctor's but I was aware that an invitation would come so I wasn't surprised when I got it. I was quite happy about it really, I didn't feel there was any problem. The test seemed fairly straight forward. Probably a little bit, well it could be a bit awkward you know it was a bit of a, 'What's lollipop stick for?' you know sort of thing. But once I'd done it I didn't find any problems at all and sent it off. The results came back fairly quick, it wasn't a long drawn out process, it was, I think it was back within sort of 10-14 days. I suppose when it came back you sort of look at the envelope and think, 'Oh I know what that is'. But you've got to open it, you've got to read it and of course fortunately it was clear.

Others reacted rather differently to the invitation. Women are used to screening for various conditions but the UK has no other screening programmes for men. Women tended to see the bowel screening programme as “just another check-up”, but the invitation surprised some men. 

 

She thought the invitation to be screened was 'just another check-up'.

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Age at interview: 70
Sex: Female
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What was your initial reaction when the letter came through the door to say you were invited for screening?

Just, oh another check-up, hadn't heard anything like that before although my brother-in-law and sister-in-law and friends had also received letters, invitations to do the same thing which seemed to be quite a general invitation almost.

Had you read about it in the local press at all?

No, no.

So you just got this letter saying would you take part?

Yes, yes.

 

The letter of invitation shocked him because he was not used to preventive health care.

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Age at interview: 65
Sex: Male
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In the early part of June 2006 I received a letter through the post and was quite shocked really because it was for bowel cancer screening. And, but I read through the booklets and although I didn't really want to go through with it I decided I would do the self testing kit, which I'd checked and read about how I'd got to do it. And I sent the testing away, back to the, it was a stamped envelope to return it.

You said that your initial reaction when you got the letter inviting you to be screened was one of shock.

Yes it was yes because very, very rarely do you get preventative, you know, medicine like this sort of thing. I'd never, although I've had a lot of illnesses I'd never had anything to check previously to test to see if there was anything wrong. You just rely normally on falling ill and waiting to see your GP and then being referred to a hospital but this was something new to me. 

A woman in the initial pilot programme was impressed by the scheme, but felt a bit embarrassed about taking part. She also wondered why she in particular had been invited to be screened for bowel cancer. The letter and leaflet she received stated that all those in her age group were being invited for screening but she thought that perhaps her local doctor had also been involved in the selection process.

 

She was impressed by the screening programme but felt a bit embarrassed about taking part.

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Age at interview: 57
Sex: Female
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You said that you were part of the initial pilot study.

I was part of the initial pilot study.

Did you read much about it in the newspapers or did you hear about it on the radio at all at that time?

No I didn't. The first I heard about it actually was when it came, when the letter came through the door. I didn't realise they was doing it in this area. But to be, to be part of it was a, was a big thing really. For this area I was, I was quite impressed by, by being asked actually to take part in it. Because, well as I've said before unless you do you wouldn't know, you just would not know.

Did you discuss any of this with anybody else apart from your husband, did you talk to your GP or anyone like that about it?

No I didn't speak to my GP no, in fact I don't think I spoke to anybody about it, only my husband. I did feel a little bit embarrassed about having it, about doing it so I didn't actually mention it to anybody. It's only afterwards and I thought, well what I am feeling embarrassed about it's a normal thing, everybody goes to the toilet. 

 

Wondered why she had been 'selected' for screening.

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Age at interview: 57
Sex: Female
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Yes my main thought was has my GP recommended me for some reason, is there something wrong with me that my GPs recommended me.

Or because over the past years I've had to have a lot of laxatives, I did wonder that, is it because I've had to have a lot of laxatives that they're thinking the use of laxatives has done something to me and there be the possibility, I might have be, have bowel cancer in the future. I didn't know that until I sat down and thought about it seriously and I talked it over with my husband and we decided no, it's everybody in this area who had been on the screening programme.

So all those things were going through your mind when you had the invitation to be screened?

These things did go through my mind when I had the invitation yes. Because you do wonder why, why me.

People who have no family history or particular concerns about cancer sometimes feel they are not at risk of developing bowel cancer and that the screening programme is not relevant to them. A man who took part in the pilot programme also said that he felt a little bit sceptical about it all. Although through screening he found that he had bowel cancer, he had felt healthy when the letter arrived, ate well and didn't see a need to be screened. Looking back he thought that his was a typical male attitude to preventive health care.

 

At first he was sceptical about screening for bowel cancer.

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Age at interview: 67
Sex: Male
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And what was your initial reaction when it came through the door, the letter of invitation?

Forget it, forget it. Don't. As I said, I'm a male and I'm a, a dedicated sceptic. I just thought well. I had no problems. I had no problems as I thought. So it was something that I didn't need to concern myself about, but it proved to be wrong.

When you said, 'I'm a male' what did you mean by that?

Well we're notorious aren't we for ignoring bits of stuff like that or going to the doctor's or. So I just mean that females are far more ready to, to carry out screening than the males seem to be.

The man mentioned above [Interview 01], who was initially sceptical about the screening programme, also had a very negative reaction when asked to repeat the test. He thought that the people involved in screening were just trying to prolong their work and justify their jobs.

 

He was still sceptical about screening when he was asked to repeat the test.

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Age at interview: 67
Sex: Male
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So in the end what influenced you mainly to send off the, the test? Was it your wife did you say?

Yes my wife's insistence. But I think after, when the second one came I would have probably have binned it to be quite honest because my feelings were that they found someone that they could probably prolong their job with. You know this is someone that we can keep it going. You know I didn't really understand what it was all about at the time. And looking back of course that was rather foolhardy but at the time I kept thinking, oh you know they've found someone they can, they can carry this on for a long time, you know. Justify their job really which is typical of me.

Others thought that the idea of screening for bowel cancer was “horrible” or “disgusting”. Some were apprehensive, fearing it would be a “messy” procedure, or difficult to do.

 

She ignored the invitation at first because she thought the whole idea “disgusting”.

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Age at interview: 58
Sex: Female
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Well I was invited to take part in the screening when it first came into our area. I received the kit, I had a look at it and I decided no, I didn't want to do it, I thought it was pretty disgusting really so I decided not to do it. My husband did his and sent his off. I had another kit a few, a couple of weeks later saying may be I hadn't received the first one and so they'd sent this one and I still didn't do it. Then I think when the next kit came a couple of years later I still held out not to do it, and my husband was telling me, 'You ought to do it.' And I said, 'No I don't want to do it, it's just not nice.' And he said, 'No neither is bowel cancer, you ought to do it.' But I still put it off and it wasn't until nearly two years ago now I was called, recalled from a routine mammogram and I just had to have a lumpectomy in the end, but that was the thing that jolted me into thinking well this was picked up so early may be I ought to do the bowel cancer screening when it comes again. And I said to my husband,' I will do that if it comes again.' And he said, 'Yes you really must.' And it came earlier this year and I did it. I didn't find it pleasant but I thought yes I've got to do it and so I did do it.

You said you sort of felt it was disgusting, can you say a little bit more about your feelings at that time?

Well [laughs] I don't know, it's, I don't think it was just embarrassing I just thought oh not, not very nice to have to do that. And when, and I said to my husband, 'Oh no I don't, I don't fancy doing it,' and he said, 'Well you're changing the grandchildren's nappie's all the time, what's the difference?' And I said, 'Yes but I don't have to go ferreting around in that.' So that's, I just didn't like the idea of it.

One woman also felt anxious for various reasons, but mainly because she had rheumatoid arthritis in her wrists and thought it would be hard to collect the stool samples needed for bowel screening. 

 

At first she was anxious because she had arthritis. She also thought that screening might be ...

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Age at interview: 70
Sex: Female
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Well it was back in 2004 when I received a letter through the post to, and was invited to take part in the screening for bowel cancer. I was a bit anxious because having rheumatoid arthritis in my wrists I find things in the bathroom very difficult and painful and but I decided I'd go along and endure it and do it. In the envelope was varying things with instructions as to what to do. It all appeared to see, to be a bit messy but I thought well I must do this, other people are perhaps doing it and I must do it. And so with pain and it took a bit of effort and time I did and put it in the post and sent it away. Now I have one or two problems with my medication, upset the bowel a bit and I was rather anxious because there could be something wrong. But I was so relieved to get the result to say that it was clear.

Excellent, thank you. So what was your initial reaction when you got the invitation to be screened through the post?

Oh what's all this about, what do they want now? Oh horrible [laughs].

Why do you say horrible?

Well it's a very personal private part of you that you have to do and it's just, it could be smelly and not nice you know. And I think of people too who will have to test it [laughs], yes, yes.

Some people had decided not to take part in bowel screening at all. They had various reasons (see 'Why some were reluctant or did not to take part'). This woman binned her letter of invitation.

 

 

When she read about possible investigations she put the letter in the waste paper bin.

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Age at interview: 67
Sex: Female
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When you got the letter to invite you for screening.

Mm.

Did you read the letter?

Yes I did. I read it, it told you what to do and then it said that you would get the results, they would let you know if there was any doubt, you know, you would be screened again, and then obviously if there was any need, and they were suspicious of anything you would have the further investigations. And that's when it went in the waste paper bin.

Did it tell you much about the investigations or was it, or did you know all about them because you were a nurse?

I knew, yes I knew, I knew. And I think that doesn't help, you know I've seen grown men cry having these investigations and you know I'm just not that brave. But no I didn't need to read, as soon as it said about the investigations it was oops [laughs].


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Last reviewed May 2016.
Last update May 2016.

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