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'.
She was pleased to have been invited to be screened.
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.
One man thought it obvious that he should take part.
Says that screening might prevent disease and save life.
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.
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'.
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?
So you just got this letter saying would you take part?
The letter of invitation shocked him because he was not used to preventive health care.
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.
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.
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.
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.
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.
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 ...
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.
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].
Last reviewed May 2016.
Last update May 2016.