Getting an ‘unclear’ or ‘abnormal’ faecal occult blood test (FOBt) result by post

Around 98 in 100 people tested will receive a ‘normal’ result from a faecal occult blood test (FOBt).

Out of those 98 people 4 will initially have an ‘unclear’ result. An unclear result means that blood has been found in 1–4 of the samples, which could be due to other conditions such as haemorrhoids (piles) or a stomach ulcer. An unclear test result has to be repeated with another FOB test.

An ‘abnormal’ result happens in around 2 in every 100 tested and means that blood has been found in 5 or 6 of the samples – this is not a diagnosis of cancer but it means people are asked to repeat the test and then if necessary offered further investigation, such as a colonoscopy. (NHS Bowel Cancer Screening Programme January 2016)

Of the people we interviewed several had received an unclear or abnormal result by post.

Andrea Giles, specialist screening practitioner, explains what it means to have an unclear or…

Age at interview 49

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An unclear result suggests that there may be some hidden blood in your bowel motion. Because the test result is inconclusive we will send you a further FOB kit through the post for you to complete and return.

An abnormal result may mean that we have found some hidden blood in your bowel motion. An unclear or abnormal result doesn’t mean a diagnosis of bowel cancer, but we will offer you a further appointment to see a specialist screening practitioner, or a nurse at a clinic to discuss this.

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Some people were not particularly worried when they received the news of an unclear or abnormal result. One man who was later diagnosed with cancer said that he found the screening process “inconvenient” because he had to take time off work. Another man, who was later diagnosed with polyps, felt “a bit fed up” when he found he had to repeat the test.

He was more concerned about taking time off work than about what the abnormal test result meant…

Age at interview 67

Gender Male

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And then what happened? You had another, another was sent to you a month later?

I had a letter saying that the second sample had not proved conclusive, something like that. And that they would be in contact with me in a month’s time. I think it was a month or a month’s time which they duly did. That one rather confirmed the issue. I did it again then and sent it off and that must have showed a positive again because it wasn’t very long before the local hospital sent me a letter saying that I was invited to go for a colonoscopy.

What were your feelings at that stage?

Well I didn’t really know much about the terminology. I didn’t really know anything about the process and I just thought that it was a damned inconvenience really, having to take time out. I was working in a job where if you have time off you need to find someone who can cover your work. It’s not the sort of job that you could actually shut down and stop. Someone else would have to be there with so many people involved. So that was troubling me rather than the ultimate outcome. If you know what I mean, the fact that I’d got to keep making arrangements for things rather than the implication of my health.

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He felt ‘fed up’ when he had to repeat the test but thought that since he had started the…

Age at interview 65

Gender Male

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Yes so then you got a letter through the post saying that the first test was a little bit abnormal, is that correct?

That’s correct, inconclusive, they couldn’t really say one way or another.

And what were your feelings when you got that result?

I thought it was a bit of a nuisance but realised it, you know could happen and I was immediately sent a second testing kit which I carried out straight away again.

And what was the result of that one?

That was, they did say it was positive, but then they needed a third test with the first one being inconclusive and so I carried on and did the third test.

And what were your feelings at that stage?

Well a bit fed up of you know.

Yes.

But I thought you’ve started something you’ve got to finish it and it’s no good going halfway and then calling it off.

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A man who had received two abnormal results said that he took the situation “in his stride”. He did not think he had cancer and suggested many other reasons for the blood in his motions. Further investigation found that there was nothing wrong with his bowels.

He thought his abnormal FOB test result might be due to piles (haemorrhoids) bleeding from his…

Age at interview 65

Gender Male

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But I wasn’t really too fussed about it [the result], I mean I was thinking not so much for the reasons for the abnormality, I was looking at a ‘cop out. I mean I have this very quick bowel system, so I felt I was pretty well that it wasn’t going to be anything very, very serious. It could have been a polyp.

Yes.

I didn’t understand polyps until the nurse explained when I went for the physical examination.

So when you had the result coming back abnormal.

Yes.

What was your feeling about that?

I wasn’t particularly concerned, because I felt that you know that it could have been one reason that I’ve already said, it could have been I’d brushed my teeth too violently, it could have been my piles and my wife, I said to her, and she said, ‘Well it could be anything really,’ you know, when it came back the first time, ‘It could be anything. Then I sent in another test and I was pretty prompt with that one, came back abnormal, didn’t bother me at all really, I just took it in my stride.

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Other people were less optimistic. When they received unclear or abnormal test results they assumed the worst. This man eventually had further investigations and a cancerous polyp was removed during a colonoscopy:

His test results were abnormal so he assumed the worst and was keen to get on with further…

Age at interview 61

Gender Male

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And how long did you have to wait for the result?

The first time was three days, four days I believe it was, before it came back to say that it was a little bit unclear, would I do another test kit. And which I done, I done the test again that I done in the first place, sent that off and then it was within a week that I got the result back to say that there was a problem and they would like to see me you know for further investigation if that was okay with me.

And what were your feelings at that stage?

Anticipation I suppose of what would be, or what could be. But as quick as I, I can’t think of the words, I was thinking the worst obviously, I think you know you do, you just think the worst straight away. But as quick as I was thinking about that I was then thinking well no, you know, let’s get something done, let’s find out about what’s happening like you know. And

So they invited you to go and meet one of the nurses at the hospital?

They did yes.

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Some people had felt anxious when they found out that their test result was not ‘normal’. One woman had an unclear result and so had to repeat the test twice. The final 2 test results were normal but while waiting for the results she worried that if she were diagnosed with cancer she might not be as “brave” and as “positive” as she thought many other people would expect her to be.

When she received an unclear result she felt anxious but at the same time was a bit reassured to…

Age at interview 67

Gender Female

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So can you say how you felt then when you got that [unclear] result?

Well again my tummy did a leap and you go through, your mind works like, ‘What if?’ And I thought, well I won’t tell my family. I think I wished my husband was here.

Yes.

And then, then you go deeper into it and think how will I be if I have got bowel cancer, because being secretary of the support group for so long, I’ve realised that people expect those who are going through cancer to be very brave and very positive and I thought I don’t think I could be like that. I really admire those people but there are times when you just want to feel, ‘Help’ [laughs] and I was really worried about how I would react if, if it all came back as positive [abnormal]. But then I thought, ‘Now I mustn’t go down that line because this is only a test’, and it did say on the letter, ‘This does not mean that you have bowel cancer. And I think I was a bit reassured by that, I thought, ‘Well, theres hundreds of things it could be, without going down that road. So, but again I decided not to tell the family until I knew you know what was what really.

I think that’s very interesting and perhaps a very normal reaction possibly that you said you might want to cry for help rather than put on this positive face, is that what you said?

Yes, yes I think so because I don’t think I’m that brave [laughs] in the normal run of things and being on your own as well, it always goes through your mind that how would I cope if I had something like that.

What makes you think that other people expect you to be very positive and brave?

Because that’s how it seems to be with cancer. I often think you know people are putting on this, this brave act and inside they’re probably shouting, ‘Help, you know I’m going through this and I don’t want to,’ and sort of screaming out for sympathy. And I, I always think that cancer is the sort of illness that isn’t classed as an illness if you know what I mean, that if you’ve got flu people will say, ‘Oh really sorry you’ve got flu and I hope it will soon be better,’ but often it’s other peoples attitudes that they don’t know quite how to cope with you if you have cancer.

Did that affect whether or not you decided to do the next test?

No, no I thought I’ve got to, I’ve got to do it, because theres a chance that it might not be and you know you just have to go through that bit.

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People who had a spouse or partner usually said that they told them about their result. One man who chose not to tell his wife was not sure why he hadn’t – he said she had always been very supportive but he just didn’t want to tell her until he could say it was good news. Those who were single, divorced or widowed often felt isolated and concerned about what the future might hold. It was sometimes a relief to confide in an adult child or friend, but some kept the news to themselves because they didn’t want to worry anyone else.

Many people felt shocked when they received their unclear or abnormal results. One woman said she felt “flabbergasted” because she felt so well [Interview 28]. She was also worried about how she would manage if she were diagnosed with cancer because she lived alone. Eventually she had a colonoscopy and two benign polyps were removed.

She said she was completely devastated when the test result came through.

Age at interview 70

Gender Female

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And then you got the result, can you say a bit more about getting the result of the second one?

The result of the second one, I’m trying, trying to read the letter in my mind but yes, I was complete devastated when the result came through because I’m, I was okay, there was nothing wrong with me, and so on, but I was, yes that is the word I really was flabbergasted when it came through. And the appointment came for me at the hospital and I was very, very concerned, very concerned.

This was when you had the abnormal result?

That’s right yes, so I thought well there must be something wrong, there must be something wrong, now what is it, what is it, what is it, how am I going to manage, what will I do, what will happen if I have to go into hospital etc etc, all the, all the things that, that concern you when you’re on your own.

Of course.

And no one to chew it over with you see, no one to discuss it with. Do I tell the children or do I not at this stage?

What did you do?

And my daughter has a bit of medical knowledge, she is a radiographer so I did tell her. I wasn’t going to but, ‘Right give me the telephone number,’ I said, ‘No don’t do anything like that yet, don’t do anything like that yet, let’s wait and see. Yes I did tell them in the end, yes, I thought it was only fair. Because I was thinking the worst and I thought well you know something else would probably knock on from this so they would have to know so I did tell them.

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A man who had had normal results in 2001 and 2003 was shocked when he received an unclear result in 2005. He had led a healthy lifestyle so assumed he was well. When a repeated test result came back abnormal he was “extremely upset” and agitated. He went to see his GP to discuss the situation. Subsequently he had a colonoscopy and two benign polyps were removed.

His abnormal test result made him so agitated that he went to his GP, who was reassuring.

Age at interview 59

Gender Male

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And then can you say a little bit more about your feelings when you had the one that came back that said it was unclear?

Ah well, I was quite concerned because when it came through the post and I read it and it said it was unclear, yes I was rather concerned, yes, because I naturally assumed, I know it sounds ridiculous but I just assumed that it would come back always clear, possibly because I considered I’d led a very healthy lifestyle, I’d exercised regular and I’d also eaten all, very good diet. I mean I haven’t eaten red meat since I was in my thirties so consequently you assume you’re bullet proof [laughs].

So that was a bit of a shock?

It was a shock, yes it was a shock indeed yes.

And then they asked you to repeat it again?

They sent the test kit yes and I sent it back without delay, the following day actually, I always managed to do the test kit in a day. And then that came back quite quickly and this time it said the result was abnormal. Apparently later I was told that in one, only in one of the envelopes was there trace of blood so, but even then though it was still classed as abnormal and I was advised that I should seek further investigation.

Can you tell me again about your feelings when you heard it was abnormal?

Oh gosh, I was absolutely, I was very nervous actually. It worried me that much that I made an appointment to see my GP [laughs] to tell him what had happened you know and I was quite agitated, and extremely upset I suppose really, yes I was. Possibly more so than I should have been but I suppose as an individual that’s how I am [laughs].

And what happened when you went to the GP?

He spoke to me, quite, you know reassuring really and he just gave me a general talk. He was very good and just, he tried to calm me down a bit because I was really rather on edge you know.

Of course, understandably. So he reassured you.

Yes he did, yes he did.

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A woman had tests in 2000 and 2003, which were both normal. Then in 2005 her result came back abnormal. This was followed by another abnormal result. Even though she knew that an abnormal result might be due to something other than cancer she felt “really frightened”. Eventually she had a colonoscopy and two polyps were removed; one was cancerous.

She felt frightened when another test result came back ‘abnormal.

Age at interview 66

Gender Female

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And, and as I said we were both lucky. And then three years on, we had another test come which we did, and I didnt bother about that, I just did it. And, first because Id had the good luck with the first one, and, and that was fine…and then we had another one, 2005, October, November time it was. And we did them, and then this letter plops through the post, saying that mine was abnormal, and nothing to worry about because sometimes it does happen. So there was nothing to worry about, but would I please do another test, and if that one was alright, they would send me another one in three months time to double check it. So I did it. And wow, it came back abnormal. Well I just knew, when I looked at the letter I thought, ahh, and I said to my husband, It’s abnormal again. And I was really frightened then because I thought two abnormal’s is not right. One you could, you know, you can excuse that, perhaps it wasnt right, a bit off, but two, one after the other, that was a bit scary I must admit.

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Even though these people had received unclear or abnormal results they did not seem to mind receiving them by post and none complained about it.

She didn’t mind getting the unclear or abnormal results by post.

Age at interview 60

Gender Female

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And to go back to when you got the results, the results come though the post in a letter, was that alright getting the results in a letter, or would you have rather gone to the hospital to get the results?

No, I didn’t mind it coming through the post, but when you saw the letter you, you sort of knew that you would have to do another screen, another screening. And you know, that wasn’t very nice, you sort of tend not to open it to start off with. You know, you wait a while [laughs], but you know you’ve got to open it, and you know what it’s all about so. But no, I didn’t mind that, it didn’t matter [getting a letter] about going to the hospital.

It was alright getting it in the post?

Mm.

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One man said that if the result had come by phone it might have been alarming because it would have seemed more urgent.