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Cervical abnormalities: CIN3 and CGIN

Getting abnormal test results

Cervical screening is not a test for cancer. It is a method of preventing cancer by detecting and treating early abnormalities which, if left untreated, could lead to cancer in a woman’s cervix (the neck of the womb). "Out of 100 women who have cervical screening, about 6 will have abnormal cells in their sample” (NHS Cervical Screening leaflet, ‘Helping you decide’, May 2017). 

Nearly all abnormal results show no more than small changes in cells. Abnormal changes (also called dyskaryosis or dysplasia) may be mild, moderate or severe. Most mild changes go back to normal on their own, but treatment may be needed if the changes are moderate or severe. After a colposcopy, abnormal changes may also be called CIN1 (mild cell changes), CIN2 (moderate cell changes) or CIN3 (severe cell changes). This is just another way of saying mild, moderate and severe (see ‘What is CIN?’).

 

A doctor explains what a cervical screening test can show.

A doctor explains what a cervical screening test can show.

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Over 90% of smears are normal. So the most likely thing to happen is that your smear is reported as normal. Sometimes it can pick up inflammatory change. And sometimes it can pick up infection, like thrush. It’s not designed to pick up sexually transmitted diseases. So a normal smear doesn’t mean you don’t have a sexually transmitted disease. And if you’re worried, then you should go to your local sexually transmitted diseases clinic and have a check for that specifically.

Many of the women we interviewed turned out to have abnormal changes after routine cervical screening. Most were told by letter, and that they would need a colposcopy examination at hospital. This is a detailed examination of the cervix (see ‘The colposcopy examination’). Some said they were also told that they had CIN3, while others knew only that they had abnormal changes that needed further investigation. Instead of a letter, a few women received a phone call from their GP, which worried them because they felt their doctor would not have phoned if it hadn’t been serious.

 

Susan got a letter telling her she had severe dyskaryosis or CIN3. She’d had repeat cervical...

Susan got a letter telling her she had severe dyskaryosis or CIN3. She’d had repeat cervical...

Age at interview: 31
Sex: Female
Age at diagnosis: 25
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I’ve been going for smears as and when advised really from probably the age of 25 I’d say. Maybe a bit before because I was 25 when I was first diagnosed. I think, looking back, I had had a few occasions where smears had come back with inadequate cells and I’d gone for repeat smears, but had never been concerned about that because they’d always come back as normal the second time.

 

So when I’d gone for my smear, I think I’d got a letter saying there was inadequate cells again. So I thought, “Okay, it’s a bit inconvenient but it’s just the same as before, obviously they haven’t got enough.” So I went for a repeat smear. I was on nights, working as a nurse at the time when I got the letter. So I didn’t actually open it until I’d got up, which was in the evening when I would be going to work.

 

And I looked at it, and scanned through it and it was saying that it was abnormal, bits were in bold text. And I skimmed to those bits that were saying severe dyskaryosis and CIN stage 3, and I didn’t really understand anything at the time. I didn’t know what it meant, but I knew I had to get to work, so just folded it up and put it in my bag, and thought, ‘Well I’ll deal with that later.’ I’ve got to get to work.

 

I settled all the children on the night shift and read them their stories. When the ward was quiet, that’s when I got the letter out again and had a look through it, and read it slowly and was wondering what did it mean and what was going to happen, and what would happen next? And….

 

Because this letter was just after a routine…?

Just a routine smear, yes. And normally you get a letter back that says everything’s okay, and I’d file it and you get on with your life.

And sometimes you’d had letters saying that there was an abnormal result, or not enough cells to…?

Yes that’s right.

And this one was different?

This one was different. It was saying that an abnormality had been picked up and that obviously I needed to do something about it.
 

Jane worried when her GP phoned to tell her she needed further investigations, but felt that she...

Jane worried when her GP phoned to tell her she needed further investigations, but felt that she...

Age at interview: 45
Sex: Female
Age at diagnosis: 35
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And at that time it was your GP that phoned you at home?

Yes and that’s the thing that I remember thinking, “GP’s don’t ring very often.” And I think then that yeah, I didn’t want to sort of think, it’s hard to explain. Like you sort of say, “Oh I know that I have to go and do this and deal with this but why are they calling me? Is it more serious, is it…?”

So you’re not really knowing how serious it is, and just as in all the dramas on anything, you think “Oh the phones ringing, you know, this is going to be just the worst news ever.” But in fact I think, if I’d have understood that was procedural, and of course the quicker you go and deal with things obviously the better, you know. But I think all this sort of stuff and dramas and TV documentaries, “Aah, the phones ringing, yeah.” It sort of immediately puts you into panic mode really, but obviously, you know.

And the phone call would make the process quicker, would a letter, would you have preferred a letter?

Do you know what, I'm thinking probably I might have put a letter in the drawer. I think I might, even though, like I say and going back on the time, I knew instinctively that something wasn’t right, I just knew something wasn’t right because I don’t, like I can’t explain why, and as I say the only sign I had was the one tail end of blood at the end of a monthly cycle. And so I think in a way it was, the phone call was good. The phone call did make me think, “No, you really have to go and go to where we say, you know, and don’t ignore the next procedure.”

Some women had more than one abnormal cervical screening test (smear) result before they were referred to a colposcopy clinic. In many cases, abnormal cell changes return to normal by themselves. The women we interviewed were asked to return for a repeat test within six months. Some women found this a worrying time, though one woman said that, because she’d had it explained, she wasn’t worried until she was actually referred to a colposcopy clinic.

Since April 2011, the NHS Cervical Screening Programme has been introducing a testing system called the 'HPV triage' so if a woman had a screening result that shows abnormal cell changes the sample is automatically tested for the HPV virus.

“If you have an HPV infection, you will be offered another test (called a colposcopy) to check your cervix more closely.” (NHS Cervical Screening leaflet, ‘Helping you decide’, May 2017)

For more information on colposcopies see our topic on ‘The colposcopy examination’.

If the test comes back and it does not show any HPV virus (negative result) you will return to normal regular screening every 3-5 years depending on your age.
 
‘HPV triage’ programme is currently operating in England, Wales and Northern Ireland but not in Scotland.
 
In England, Northern Ireland and Wales all women between the ages of 25 and 49 are eligible for a free cervical screening test every three years. Women aged 50-64 are eligible for a free cervical screening test every five years. Women living in Scotland between the ages of 20 and 60 are invited for a test every three years.

“In the next couple of years, primary HPV testing will be rolled out across England and Wales. This means that they will test the sample of cells for HPV first. If HPV is found, they will then test for cell changes.” Cancer Research UK June 2017
 

Sam had abnormal results several times and found this very worrying. Waiting for results was...

Sam had abnormal results several times and found this very worrying. Waiting for results was...

Age at interview: 22
Sex: Female
Age at diagnosis: 22
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I had the three month biopsy done. And that again, it come back as moderate, and that’s when I did start sort of ringing and asking well why am I still going through it, why isn’t it going? Aren’t you going to do anything about it? And I sort of just got, “Well we’ll write to you in due course to see what’s happening again.” So they wanted to leave it six months this time. It’s the wait more than anything, you know, so such a long thing to go through because you have to wait three months, then six months, and you have to wait six weeks for the results. And the waiting is really hard.

So I went for the six month one. And there she did another biopsy, and I can remember a couple of, because I haven’t had to wait long for my results at all, they were really quick and again it was like two weeks and it came back moderate again.

And because you get like, you know, from the screening programme you get that letter first before you get the letter from your consultant, so in a way that worries you a little bit. You know, why haven’t I heard from the consultant? So you’re ringing up, and they’re, “Just wait for your letter.” Or ignore that letter they say, to tell you.

And I went back again, and she did another biopsy and everything, and then for some reason I don’t know why but I got transferred to another consultant. And as far as I know he was a bit higher in the hospital, a higher consultant. So I thought right, a bit of a fresh start. I’m going to go in and I’m going to ask the questions that I want to ask and try and see if I could find out, because it was a year and a half that I’d been going through it and still got all these abnormal cells and everything. And it really was affecting me, I was worried, really worried.

 

Lauren went for repeat tests for about eighteen months. She wasn’t worried until her doctor told...

Lauren went for repeat tests for about eighteen months. She wasn’t worried until her doctor told...

Age at interview: 25
Sex: Female
Age at diagnosis: 25
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It was near enough a year and a half ago that I went to the first clinic just for a routine smear, and just because I’d got a letter. So I went there and had that done. And then shortly after that I got a letter. There was, I think they just said there was some abnormality, so that I should go back in six months and have another one done.

So I went back in six months and had another smear test done. And after that happened they sent me another letter saying that my smear test was abnormal and that I should go back and have another one done in six months. So I went back. It might have been three months actually when it got to the third one. I think it was three months after, I went back, had the third one done. Got another letter saying, ‘your smear test is abnormal, please have it checked again in six months.’

At first it really didn’t concern me because the letters weren’t concerning, you know they didn’t use concerning language. You know “abnormal” doesn’t really sound that threatening.

But I think once I went back after the third one to the place I’d originally gone, then the doctor’s language there and reaction was a lot more serious. And she did, you know, I quote she said, “There’s no time to waste.” So then it was kind of a complete change in tone from something being abnormal that, you know, I should go along in six months to check again to something somehow now, was, you know, there’s no time to waste, so….

Yeah that was a surprise. But the rest of it, I wasn’t particularly concerned and, as I say, I wasn’t even sure I should be calling back to check on it. It was just a kind of niggling feeling that I had, maybe I was just, I just thought, “Oh I’ll just give them a call just to see if they think that’s about right, six months.”

Some of the women we spoke to had not been for routine cervical screening but had had symptoms, such as bleeding between periods or after sex, and had had a cervical screening test (smear) after visiting their GP. A few had pain during sex, so they felt that something could be wrong. Other women had bladder problems, very heavy periods or irregular periods. Some of them were surprised when they were referred to hospital because, during their screening test, they were told that the changes looked like an infection or cervical erosion.

 

A doctor explains what cervical erosion is.

A doctor explains what cervical erosion is.

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I don’t like the term erosion because it implies that there is an abnormality. I prefer the term ectropium. Ectopic tissue is tissue that appears somewhere outside the site of its normal origin. And what an ectropium is, it’s the presence of these glandular cells that I mentioned earlier, on the outside of the cervix. It’s part of normal growth.

When you reach puberty the cervix grows and it grows slightly unevenly so that the inside grows more than the outside. And the effect is that it opens up like a flower so that these cells are visible on the outside. The other condition where it’s more apparent is during pregnancy or women on the combined oral conceptive pill because of the effect of hormones.

It’s completely harmless. It’s a part of normal growth and it’s absolutely nothing to worry about.

 

Michelle saw her GP because she had bleeding between periods. He thought it was cervical erosion...

Michelle saw her GP because she had bleeding between periods. He thought it was cervical erosion...

Age at interview: 31
Sex: Female
Age at diagnosis: 30
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I started having symptoms last August. I had some abnormal bleeding between periods. I wasn’t too concerned about it, it was very light. But I decided to go and see my GP as I’d never had a smear before. So after going to see my GP he did an internal examination and he said that he wasn’t too concerned. He thought it was cervical erosion, but he’d do a smear anyway. Which was sent away for testing.

We subsequently went on holiday in early September. And I got a letter back from the GP just before I went saying that I did have an infection. So I went off on holiday thinking kind of that was the end of it, and that had been the cause of it.

But while I was on holiday I got a call from the GP saying that they’d actually picked up cancer on my smear or something that was indicative of cancer.

So I flew home and then went back to the GP to discuss my results. The GP did think at that point, as it was quite an unusual result, it wasn’t just CIN3, that they would find an area of cancer. When they did further testing, they were obviously just concerned at that point where the cells had come from.

A few of the women we interviewed had gone to see their GP for other reasons and had a cervical screening test (smear) while they were there. Maria had been planning to start a family so went to the GP for a general check-up. Pam said she went to visit her GP because she was worried she might have caught a sexually transmitted infection. Marjory, who’d had CIN3 over twenty years ago, said that she only went for cervical screening after health advice from a psychic medium.

 

When Pam’s ex-boyfriend cheated on her, she was worried she might have caught a sexually...

When Pam’s ex-boyfriend cheated on her, she was worried she might have caught a sexually...

Age at interview: 40
Sex: Female
Age at diagnosis: 38
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Basically my husband left me in August ’05 after 16 years. Obviously again it wasn’t priority for me to go to the hospital and get that done [cervical screening]. Then I met someone, and within ten months of being with him I found out he’d cheated on me. So I decided to go to the doctors to get just checked out, and to make sure I hadn’t caught anything because he didn’t give me the opportunity to tell me that he’d, before we you know slept together again.

So I went and had my smear, and it came back and said I was CIN1. So, asked me, I think I had it repeated six months later. And it was CIN2. So then they said to me, okay, well they need to, you know re-do this. I had a biopsy.

 

Marjory’s mother died of cancer. A psychic medium advised her, and she went for cervical...

Marjory’s mother died of cancer. A psychic medium advised her, and she went for cervical...

Age at interview: 64
Sex: Female
Age at diagnosis: 39
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Well it was quite an incredible story actually because it was somebody I knew who’d taught English at the school I was at, and he was a psychic, he was a spiritualist. And I didn’t know him very well, but I did respect him as an academic. And at the time I didn’t know anything about spiritualism. In fact I did actually equate it with people who aren’t very intelligent. I thought it was a load of rubbish. I was surprised when I found out he was one. But he kept insisting, he insisted that I saw a friend of his.

And I went to see this guy who was psychic, and he asked me if anyone had cancer of the throat in my family. And of course I didn’t connect the two. And he said he had a woman who was telling me that I should, you know, watch my throat. And it wasn’t until weeks later I thought, oh, neck of the womb, neck of the cervix, oh, my mother. And it was quite remarkable, and I went racing along.

And when the nurse looked at my cervix, she said it looked very healthy. And I thought, oh yes it’s a load of rubbish. And then I felt quite, you know, complacent again. And then the letter popped on the mat and it said, you know, there had been severe changes, or changes in your cervical cells. And I went for a colposcopy at the colposcopy clinic.

Receiving an abnormal test result can cause shock and anxiety, and waiting for the colposcopy appointment can be difficult (see ‘Feelings about abnormal results’).

More experiences of abnormal results can be found on our Cervical Screening section.


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Last reviewed July 2017.

Last updated July 2017.

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