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Bowel Screening

Why people decide to take part in screening

When people are invited for bowel cancer screening in the UK they are given an information leaflet and encouraged to weigh up the benefits and disadvantages of screening. People's actions are influenced by their perception of the benefits and drawbacks to screening and how much they feel threatened by cancer (also see Why some were reluctant or did not take part).

Most people had decided to take part in screening. One of the strongest motivations was having a close family member who had had bowel cancer. However, it is important to note that anyone can get bowel cancer, though the risk is greater for people with a family history of it. Age is the most important risk factor and people aged 60 and over are at greater risk.

 

He did the test because his grandfather had died of cancer and his sister had also had bowel cancer.

He did the test because his grandfather had died of cancer and his sister had also had bowel cancer.

Age at interview: 61
Sex: Male
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I did this test because before I was born my grandfather had died of cancer and my eldest sister had had one operation for bowel cancer and so I thought it was important for me to do this test. And I was very pleased with the result. Now doing the test wasn't any problem as I'd been involved in farming in my earlier life and dealing with animals and so being involved with faeces was, was no problem to me. And when it's something like discovering whether you've got cancer or not which is, which is life or death so it is very important that you do the test. 

 

Her father had died of bowel cancer. She thought it would be silly if she didn't let herself be...

Her father had died of bowel cancer. She thought it would be silly if she didn't let herself be...

Age at interview: 68
Sex: Female
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Did you know much about bowel cancer before all this started?

No it's only, when I took the test actually because I reflected on my father because you know it's forty years ago and I started thinking about it and what he told me and I thought well I haven't got any of those symptoms. But.

Can you remember what the symptoms are?

Yes, yes you know that he had blood when he went to the toilet and you know he had pain in his bowels and you know he generally, you know he was really rather ill before he died. And I thought well I'm, I don't feel like that, I feel fine you know I'm sort of bubbling and you know fine. So I didn't relate it to me really but it was the, like just the thing I thought no I'll, I'll do this the first time because I thought well I'll just, you know you never know.

Yes.

And I'm so grateful I did [laughs].

And what convinced you to do the second one when you were a bit doubtful about doing it again?

Well I thought it was a very good scheme and I thought it was churlish of me not to take part in it because it was so good you know looking after your health really you know without, and being invited to look after your health, I just felt well I, it's a bit churlish of me you know and silly you know.

Well that's interesting that you use the word 'churlish'. Does that mean you thought you were; can you explain why you use that word 'churlish'?

Well I think, well you know to have the opportunity to have this test without even having to think about it really and all for free and I mean that would have been rather silly of me not to take the opportunity.
 

 

His family history of bowel cancer and his GP persuaded him to take part. He also wanted to live...

His family history of bowel cancer and his GP persuaded him to take part. He also wanted to live...

Age at interview: 70
Sex: Male
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Okay. Were there any other factors that affected your decision whether or not to accept the screening, you said your brother who'd died of bowel cancer sadly, was that 18 months ago did you say?

About, about 18 months ago yes.

So that influenced you?

Yes and the fact with, such as up there all the grandchildren you know I thought if I can pinch another 12 months, 2 years, 3 years with those you know I thought it's all worth it, you know if there is anything wrong.

Of course.

But I kept telling myself there's nothing wrong with me you know at all times I kept saying, 'There's nothing wrong with you but I'll take the test anyway just to make sure.' But surprisingly you know.

Yes.

And as the doctor said it could've turned nasty, he said in another 12 month's time he said it could have been very nasty.

Did you discuss your decision with anybody else apart from your wife?

Yes my brother.

Another brother.

Yeah who, who had an operation for bowel cancer in 1985, no sorry 1995 and he actually had one in exactly the same place as this one was discovered in my bowel, in exactly the same place so.

So you had two brothers with bowel problems.

Yes and I had a talk with my brother like you know. I went, I told the doctor, I went to see my doctor you know because I get headaches occasionally and I keep going getting a check on the headaches. And I told my doctor what, as I had, had this invitation for these tests and he says, 'Go ahead with them and take them,' he says. He says, 'My advice is you take them'.

So did that influence you as well his advice?

Yes, yes because he was quite positive about it the doctor is you know he said, 'It's there for you,' he says 'take it,' you know. He says because it was a big killer in the country he said, 'So take it and check yourself, get yourself checked out'.

People whose families have been affected by other cancers often also feel more vulnerable to any type of cancer, even though there may be no known connection. 

 

Both her parents had died of different cancers and she thought she might be at high risk of cancer.

Both her parents had died of different cancers and she thought she might be at high risk of cancer.

Age at interview: 62
Sex: Female
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Can you tell me please your story in relation to screening for bowel cancer, in as much detail as possible?

Yes, well it was in 2002, I can't remember exactly when, but I, I got this letter through the door asking me if I'd go for bowel cancer screening. I think the appointment to go, came with it, I'm not sure, I can't, I can't really remember that. But I decided I would go because I'm very conscious about cancer because both my parents have fairly recently died with cancer, my mother breast and ovary cancer and my dad with liver cancer.

Oh I'm so sorry.

So it does make you very conscious and I suspect I think that I'm, that's likely what will happen to me, so I want to just be careful. So when this came through the door I was quite pleased really to have the opportunity to take part in it because it does keep a check on you doesn't it?

I mean I also go for the mammographies and the, all the tests that you can really, that you're offered. Anyway I went for the test and well of course I did it, you do it at home, and about ten days later I got the result, all clear, so that was fine. And then I've had two subsequent tests, as far as I can remember, which have both been all clear.

Good that's a relief.
 

Those without a personal family history of bowel cancer often described multiple reasons for being screened. A woman whose husband had had bowel cancer took part in screening; she was also influenced by friends who had been diagnosed as the result of screening. Others were aware of screening for breast and cervical cancer and were convinced that “prevention is better than cure”.

 

Her husband had had bowel cancer, and friends' experiences also influenced her decision to be...

Her husband had had bowel cancer, and friends' experiences also influenced her decision to be...

Age at interview: 63
Sex: Female
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So was there any other factor apart from your husband's experience that influenced you to go ahead with the screening? Was it just mainly his experience?

No I, it was, yes he, he was a factor but I just thought that it was a good thing to do. Not only that from talking, from friends of mine that had actually done it and been picked up through it, so.

So you knew some other people who had had it?

Oh yeah, yeah and, and if she hadn't have been picked up at the time she told me herself because I saw her at the hospital when we were going with my husband for treatment. And she said, 'Oh you're here'. And I said, 'Yeah, you know it was my husband'. So she's, 'God if I hadn't have had that screening', she said, 'I wouldn't be here'. And that was the exact words she said to me. 

And I know somebody else that was picked up with it as well but they were fine. They had to have the operation but they didn't have any follow-up but she did. And, and she's ok now.

 

She decided to screened because she believes in other forms of screening and thinks that ...

She decided to screened because she believes in other forms of screening and thinks that ...

Age at interview: 70
Sex: Female
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Looking back what were the factors that most affected your decision to take part?

Well I'm a great believer in testing, in breast screening, any sort of screening that they do I am a great believer because I think prevention is better than cure and that if they keep an eye on things that if it's going to save you getting the illness, and the smear test, I do think that people should just take advantage of all the things that are available because if you've experienced any sort of major illness you would realise that it's far better to do, have the inconvenience of a few minutes than suffer the illness if they can prevent it.

People who had had their own brush with cancer often think that screening is a good idea. One woman wanted to take part in screening because she had previously had bowel cancer herself (also see Initial reaction to the invitation for screening), and a man who accepted screening believed that all screening is useful because he thought that his prostate cancer should have been diagnosed sooner. He and others thought that “prevention was better than cure” and applauded the NHS for its screening programme.

 

His past experience of prostate cancer convinced him that it is best to diagnose cancer in the...

His past experience of prostate cancer convinced him that it is best to diagnose cancer in the...

Age at interview: 65
Sex: Male
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What do you actually understand by the test, what are they looking for do you understand?

Well I think it's looking for the early stages of cancer and I mean just by finding a growth doesn't automatically mean it is cancer, it could be a polyp or other things. And I think it is really a wonderful thing that if there is any signs of cancer and you can catch it in the early stages, I've always been a big believer it's better to catch it early than leave it too late.

What has made you think that, what experience in life has made you feel that?

Well because I think I'm almost certain I had prostate cancer for a lot longer than when it was diagnosed. And that was only by pure luck that I'd been rushed into hospital over some other matter that they did a blood test on me and found out my PSA was very high. And so you know I think really it would have been better if I had been tested sooner.

So did that affect your decision to take part do you think?

Yes I think it did make a big decision because I've always been a person who believes in preventive measures before you know letting things get too bad.

People sometimes said that they felt an obligation to be screened if it were offered. A woman who had worked as a secretary with a cancer support group 'knew the importance of early detection'. Another woman, mentioned above [Interview 19], thought that it was “good citizenship” to accept screening when it was offered. She was sure that screening would prevent serious disease and so save money for the NHS. This woman also felt that to some extent her decisions were guided by God. However, another woman didn't feel she had a “duty” to take part in screening. 

 

Suggests that it is good 'citizenship' to be screened because it may prevent disease and save the...

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Suggests that it is good 'citizenship' to be screened because it may prevent disease and save the...

Age at interview: 62
Sex: Female
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Were there any other factors that influenced your decision whether or not to take part?

No, I think it's good citizenship to do so if you're offered these things that you should really. It will probably help others as well. You know, if nobody took part, nothing would happen would it, from it, so there would be no results for people to act on so.

Oh that's very interesting you see it as good citizenship.

Yes.

Can you expand on that a bit more, that's really interesting.

Well we're, we're offered these things and I suppose I'm a religious person and I think that God guides my life to a certain extent so when these things come to me I think I should act upon them really.

In a way it's a sort of protection for me.

Mm that's a really interesting point of view, I hadn't, nobody has said that to me from a sort of religious point of view.

Yes.

So you can see that maybe there's God acting?

May be yes, I think things happen in your life for a purpose and so when something is presented to you like that you've got to make a decision on it and it's all for my good isn't it, personal good.

I consider we are very blessed to have a national health service in this country but we all know it is financially stretched. With early detection of bowel disease offered in the pilot scheme and hopefully then nationally, many people may avoid what would be major surgery later with all the considerable costs this would incur. With this in mind surely to take part in the scheme is good citizenship. 

The information leaflets also contributed to some people's decisions (also see 'People's views of the initial information leaflet'). People differ in the weight they attach to the short-term and long-term consequences of their actions, so the way in which information is presented may affect whether or not they take part in screening. In the initial pilot scheme people were told that their GP had provided contact details (GPs no longer do this but they are notified when the invitations for bowel screening are being sent out in their area). Some people felt reassured that their GP had been involved in the screening process. 

 

The information leaflets helped her decide whether or not to be screened.

The information leaflets helped her decide whether or not to be screened.

Age at interview: 57
Sex: Female
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I think when the, when the booklet [with the information] came through, that actually made up my mind really. If I hadn't of thought about it before once I'd read that booklet, after reading it I would think, yes, after reading this information I would definitely want to do it.

And so the information that you read in the booklet helped you decide to take part?

Yes it certainly did, yes the information did just make me decide to take part in the screening.

Did you have anybody with bowel cancer in the family?

No, I didn't have anybody with bowel cancer in the family. 

Or did you know any friends who'd got bowel cancer?

No, I'd heard about, well yes actually I had heard about people who had had bowel cancer.

Mm, but again it was the information that really made you decide?

It was the information that made me decide to do it.

 

He decided to be screened because he thought his GP was involved and that his GP supported the...

He decided to be screened because he thought his GP was involved and that his GP supported the...

Age at interview: 67
Sex: Male
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Now what, what was the main reason for you deciding you would take part?

Mainly I think because the original letter said that this was a pilot, it was a pilot of this area and it was something that was going to become nationwide. If I remember rightly the referral had come from the doctors in that certain surgeries had agreed that they were in favour of it and that the patient, they would therefore give patients' names. So I felt that if, if my GP was saying it's a good idea to have it done then fair enough, so I had it done, or I did the test myself, you know what I mean?

So that's important, so you felt it was, that was quite an important factor influencing you, the fact it came from your GP?

Yes, yes.

Did you feel you had any choice or was it something you really felt you didn't have much choice about?

No felt I'd got a choice but I didn't feel that I needed a choice, I felt that it was, really it was essential that I, I went ahead and had the screening done.

Were there any other factors apart from the fact that your GP was recommending it do you think that swayed you to go ahead?

No not really no, I don't think so.

Others were keen to take part because they had occasionally seen blood in their stools or experienced other bowel problems, such as diverticulitis, haemorrhoids or irritable bowel. 

More than one man said that his wife had insisted that he should take part in screening. A man said that he had encouraged his daughter to see a doctor when she found a breast lump and it would have been inconsistent if he had not accepted screening himself. Another said that although the information had influenced his decision he had the confidence to take part in screening because he felt encouraged and supported by his wife and son, both doctors.

 

He had confidence in the NHS, and he had doctors in the family, so he knew that if a problem were...

He had confidence in the NHS, and he had doctors in the family, so he knew that if a problem were...

Age at interview: 65
Sex: Male
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Yes I think on reflection about the whole process I'm a lucky guy because I've got a medical son and a medical wife and I have a cocoon round me so if something had transpired it would have been quickly dealt with. I'm confident, I'm very confident of the treatment of the NHS system which I think is brilliant, and part of it, well I'm part, and I feel therefore I had no hesitation accepting something like a screening for the bowel, because I knew it would be good and would work. If I'd been on my own perhaps as guy, a single guy it might not have been quite the same. Telephones, yes, there are lots of help lines and all the rest of it but if your family are around you it's much easier to talk to them and feel that you've got their support if anything goes wrong. 

One man took part in screening mainly because he felt fit enough to cope with cancer if it were diagnosed. He thought that it was important to screen for disease at his age because later he might not be able to “fight it off”. 

 

He decided to be screened when he was still young enough to “fight off” disease if it were...

He decided to be screened when he was still young enough to “fight off” disease if it were...

Age at interview: 65
Sex: Male
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Did you have to think for a while before deciding whether or not to do it or was it quite clear to you that it was a good idea?

No, no I thought it was a good idea.

Did you discuss it with anybody?

The wife and I did, and she thought it was a good idea as well. Yes, I do think it's a good idea because well at 65 I think you want to know like when you're 65 you're fit enough really to knock anything on the head and but if you get to about 68, 69 then you're old then, you're getting older and you've got to fight these sort of things off and it's hard when it gets bad. But I do think it's a good idea for people of my age to have it done.

So your main decision to take part was that if there was anything wrong you wanted to be in a good state to fight it now?

That's right you know instead of leaving it, I mean well if it gets worse, if you've got something inside you that's getting worse it's, there's no coming back is there after a few years, it could get worse and you could do nothing about it so.


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Last reviewed May 2016.

Last updated May 2016.

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