Cervical abnormalities: CIN3 and CGIN
Feelings about abnormal results
An abnormal result is not unusual. "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. Some abnormal changes may disappear without the need for any treatment.
Getting an abnormal test result can cause shock and anxiety. Everyone is different and women’s reactions ranged from those who didn’t feel worried at all to those who felt very shocked and frightened.
Most of the women we interviewed had been for routine cervical screening and had experienced no symptoms. They were not expecting to have anything wrong and many had thought little about the results after having the test. Some were told by letter that they had abnormal changes that needed further investigation. Several said they were not worried at this stage because they’d had abnormal results before and nothing had been wrong. Others said they’d been given enough information to feel reassured that the abnormal changes were not cancerous and treatable. A few women had been screened soon after having a baby and assumed the result might be related to hormonal changes.
Anna had a few repeat smears before being referred to a colposcopy clinic. She was given a lot of...
I’d just had my son. He was born in the April and I had my first smear after that in the October. Went along, as you do. Not worried about it. And my results came back mild abnormal, borderline changes. Didn’t really think much of that. I just thought mainly it was because my body was still trying to get back to normal. And it obviously said that I needed to go back for a repeat smear. Went for this, still not that concerned really because it’s quite common for women to have borderline changes. And again that result came back with the same result.
Yet again I had to go for another smear three months after that. And this time I was referred to the hospital to go and have a colposcopy. With the results letter that I had, the information I received just really explained the type of examination that I would have and what they would be looking for, and obviously it does highlight in there that mild abnormal changes aren’t, in most cases, cervical cancer. So I was still quite relaxed about that because I did feel I was being given quite enough information.
Some of the women we spoke to were told by letter or phone that they had CIN3, severe dyskaryosis or dysplasia and needed a colposcopy examination (a detailed examination of the cervix). This often came as a shock or ‘bolt from the blue’, particularly when they had had no symptoms.
Joanne was shocked to have abnormal results. She was on her own when she got the letter and had...
I had no inclination whatsoever that it would come back with anything wrong, not for one second.
And to me it was just, well it was sort of like a bolt out of the blue for me when I got the letter. Because I was on my own at the time. My daughter was, it was the school summer holidays still and my daughter was away at my Mum’s. Because I was working and stuff and it was, just kind of felt like a bomb had dropped out of my world when I got the letter.
So what did you do when you got the letter? Did it also have a date that you had to go to a colposcopy clinic?
No it didn’t. They said I would get a letter from the hospital. Which I did. The letter was for, when I eventually got the letter I think it was for about a fortnight, two weeks later. I’m sure it was about two or three weeks later. It wasn’t, I didn’t have to wait very long.
And in that time, pardon me, well while I was off work at the same time, suffering unfortunately from depression. And that made me, the way I feel even worse.
Some of the women we interviewed were confused because they’d never come across the terms used in the results letter, such as severe dyskaryosis, dysplasia or CIN3. Many were very worried that they had cancer but found little reassurance when they looked on the internet for information – they were unsure what to look for or which sites were reliable, and found some very frightening information on CIN. Often women thought the worst and the word ‘pre-cancer’ was frightening. It is extremely rare for an abnormality found at screening to be cancer. Many thought that more information at this point or advice on where to find more information would have been helpful. Several women would have liked a telephone conversation with a nurse after getting their results so they could ask questions and get information (see ‘Information’). Joanne unfortunately received her results by letter on a Friday and she had the weekend to worry before she could speak to a nurse.
Lizzie cried when she got her results letter. Shed never heard of CIN3 or severe dyskaryosis and...
The results came back. And I opened the letter just expecting to see normal result, and it said severe cell changes. And of course it was a bit of a bolt from the blue. I was completely shocked and I think the first thing I did was cry because obviously what everyone thinks of is, “Oh my God, I’m going to get cervical cancer.”
Now I’m the type of person who likes to sort of investigate as much as possible. I know the internet can be a bit of a mine field, but I would rather know the worst case scenario and know what’s going on. So I looked into it, and I looked at all the different types of cell changes because there’s various different descriptions' dyskaryosis, or CIN3 and I couldn’t work out the difference.
But, looking at the letter I kept going back, well is it this, is it that, is it this? And I phoned the nurse and she explained to me, and basically it turned out that I had the most severe form of cell changes before it gets cancerous.
One woman said she felt shocked and scared but needed to continue with normal life because she had four young children to care for. Her partner was also ill at the time. Another, a nurse, said she felt guilty because she never thought a health problem would affect her. She was used to looking after other people but never thought she would get ill herself. Two women felt anger and blame because they believed that ex-boyfriends who had cheated on them had caused the problem.
Pam was worried shed caught a sexually transmitted infection. She didnt know what was wrong...
When this boyfriend, ex-boyfriend had cheated on you, it was only then that you thought, “Right I’d better get myself checked out,”?
“Because he might have given me something,”?
Well yeah. Having been married for 16 years and been monogamous and you know all the rest of it, I never ever entertained the thought that I’d you know. And I was just so angry that he’d put me in a position where he hadn’t, I didn’t find out till afterwards. Slept back together, that he’d been unfaithful and I was terrified that I’d caught something.
So you went to the GP and he said you need to be tested, and they, did they do quite a few tests?
I think they did blood tests and maybe a urine test and a smear.
And those were all fine apart from the smear…?
The smear yeah.
And then did you get a letter or a phone call saying…?
I got a letter.
And of course as soon as I read it, I rang the doctors and I thought, “What the hell?” You know, why, what’s going on?
Because this would have said that there was an abnormal result or….?
Yeah it didn’t, I don’t think it said CIN1 at the time. I think my GP told me that afterwards.
A few women had been particularly concerned because they were planning to start a family. One of them was planning to have IVF treatment, which had to be delayed until after treatment. Many were concerned about the impact of treatment on their fertility and future pregnancies (see ‘Fertility and pregnancy’).
Anna felt anxious because she and her husband had waited three years to have IVF treatment. Her...
I was really quite worried because it was just so close to the IVF treatment. And we’d been focusing such a lot on that happening. And then it just felt like how can something go wrong. We’ve been waiting for three years to get, to have this treatment and then it was out of their control so... That was worrying me more really you know.
So you went to talk to the GP. And he or she…?
She told you that it was CIN3?
Had you ever heard of CIN3 before?
No. So, did she explain it to you in a way that you understood and that you, you know, did you have any questions or did you feel alright?
Well I kind of understood that there were three levels that were pre-cancerous, and then after that you’re really onto cancerous cells and then the stages of cancer. So I kind of understood that, and she was very clear that it wasn’t cancer but that it needed to be treated.
Some of the women we spoke to felt upset and tearful. Several had found it helpful to talk to other women who’d had abnormal results in the past. Some of these women said they felt very isolated but gained reassurance after reading information on Jo’s Cervical Cancer Trust, a website dedicated to women, their families and friends affected by cervical cancer and cervical abnormalities. Many also gained support by reading about the experiences of other women, and found this helpful.
Melanie was shocked and frightened because of the word cancer. She talked to other people and...
End of October or some point in November I received a letter from the GP to say that the smear results had come back and there was some abnormalities there and they’d advised that I needed to go for a colposcopy. And sent me all the information about a colposcopy and how to make that appointment, which I did do.
That was the time when I first saw a word associated which was cancer, and pre-cancerous cells. And obviously the information leaflet I got was all about the CIN1, 2, 3 which is something I’d never come across before. Totally terrified when I just saw the word cancer, it was just like a mass panic.
But then the more people I spoke to about it, the more common I suppose it was. Everybody I spoke to had had some abnormalities and abnormal smear at some time. My sister, I didn’t even realised she’d had several abnormal smears. She’d had treatments for CIN1 and CIN2, so that happened.
Talking to the nurse helped because shed had CIN3 herself. She could tell Colleen about the...
I spoke to the nurse at the GP’s surgery, who was amazing. I mean she really went above and beyond, because I was clearly quite distressed. And she told me about, she had quite a personal experience with CIN3 as well herself, and she didn’t have to tell me that. And it was so reassuring to speak to somebody who’d been through it and was kind of saying, “Look it sounds awful, but believe me, you know. This is the whole point of this process, so that we get it now. And so you don’t wait until you’ve got horrific symptoms, and we know it’s something terrible.”
So was it really reassuring to speak to not only a nurse, but somebody who’d actually had it?
I think yeah. The best thing that I had was speaking to somebody, a medical professional who had had CIN3. Because they could answer both your questions, they could answer the kind of practical and personal and kind of emotional questions that you have with it.
Sometimes, though, talking to other people who hadn’t experienced abnormal cells didn’t help because, although other people were trying to be reassuring, no one really knew what would happen.
Michelle found it hard to eat and sleep. She felt that, unless someone has been through this, it...
I was barely eating at the time as well, and I did, my weight dropped quite a lot, which at any normal time I think, you know, would be fine. But obviously as a result of something like that, you know. And I think, so physically I found it quite hard to cope because I didn’t feel like eating at all, and kind of everything really was just focussed on whether I was going to be okay.
So the actual support side of it was really, really good, but again, unless you’re going through it, you don’t really feel like anyone else understands. And I found that quite frustrating that you feel like you’re on your own, and no-one does really understand. So that’s why websites like Jo’s Cervical Cancer Trust can be a lifesaver for kind of people going through it, because it gives you some solace in that you’re not alone. And people do understand and go through the same experiences.
Did you have to cope with other people’s worries and emotions as well? Like your Mum’s or husbands or …?
Personally, I didn’t have to really cope with other people’s worries because I think the natural reaction for the majority of people is to say positive things because no-one wants to believe obviously that it’s going to be something negative.
So everyone at work, and all my family and friends were very positive and reassured me all the way through that I would be fine. But again, in a more frustrating, it was kind of almost worse for people to say that, because I just wanted to shout sometimes, “Well actually it might not be fine. You know, actually this could be really serious.” And I think again, unless you’ve been through that, that’s a difficult experience to explain to anyone.
Some of the women we interviewed were told that the abnormal changes found through cervical screening could be cervical cancer but they would only know after the colposcopy or treatment.
Rachel was shocked and upset when told she had CIN3 and possibly cervical cancer. Her partner...
I was called in and the doctor said to me, “Basically we’ve called you in, your smear test’s come back from the lab, and it’s severely abnormal.” And then he said, “To put it in perspective, basically, you can either have CIN1, CIN2, CIN3.” He says, “You’ve got, CIN3 is what your smear’s showing.” But he said, “Normally with CIN3 you’d get a letter just asking you to go for a routine colposcopy,” he said, “But they’ve deemed yours very severe, and they want to put you through a fast track clinic. They think it’s,” basically he said to me, “We think you may have cancer.” There and then.
And this was like two days before Christmas, three days before Christmas and the thought of just, “Oh my gosh.” You know, “Oh dear I’ve never even thought that this could possibly happen to me. I’m too young.”
Had you been really healthy before this?
Yes. I’ve always ate healthy, I’ve exercised, and I used to go the gym you know quite a lot, and never ever had any problems before. And they kind of put me in a little room, and this lady came to talk to me, and they were really good actually the doctors, because I was really upset. And they said you know what would happen. They basically told me that I would be going for a colposcopy and I would probably have some biopsies taken. And that was that basically. And they booked me an appointment there and then, but with it being Christmas, my appointment was booked for 2nd January.
So I then rang my partner who came and collected me from the doctors. And we were just terrible, it was just, you know, awful. And I was just crying and didn’t know what to think. I was told not to Google, which I didn’t. I went home and just lay in the bath and then [my partner] came back and he had a look on the internet, and he said, “Rach, it’s not that bad. A severe result is very treatable.”
Several women said they felt particularly worried because, at the time, there was a lot of media publicity on reality TV star Jade Goody’s experience of cervical cancer. During this time, some found that getting a screening appointment or results took much longer than normal.
Colleen had a gut feeling something was wrong and was effected by Jade Goodys story, which was...
I turned 25 in November 2008 and then I didn’t go for my smear test on my birthday, even though I got my letter. But it was my new year’s resolution, so I booked my smear test in the January. And then because obviously of the Jade Goody incident, it was quite hard to get an appointment. So I got an appointment for the first week of February and went for my smear test.
I was very scared initially because I was convinced I had something terrible. Even though I have had absolutely no symptoms whatsoever, and no really justified reason to think that. I just had a very bad feeling because of all the Jade Goody stuff. So then I went for my smear test and that was all absolutely fine. And then I went to India. And I kind of see this as a little bit of a dual thing, with the whole Jade Goody situation, that the day I got back from India, I had my letter from my doctors saying that I had severe dysplasia, and I needed to go back in.
So I’d been so panicked about it before I went on holiday. And I’d had this three week holiday and I’d just got back and I was just feeling better. And I found out that actually my gut feeling had been right. And so I had to go back into the doctors and as soon as I found out, it was literally 9 o’clock in the morning, my first day back at work. And I’d just got back into work and I had the call, and then I had to leave again to go straight back to the doctors. And I was really upset. Because I just didn’t know quite how bad it was going to be. And so my Mum came down, like a little girl. And she came with me.
And so the nurse then said that they wanted to get me in as soon as possible for a colposcopy. And she was kind of emphasising, you know, that it was not cancer, it’s severe dysplasia.
Waiting for the colposcopy appointment was a very difficult time and, for some, it was the hardest time of all (see ‘The colposcopy examination’).
More experiences of abnormal test results can be found on our - Cervical Screening site.
Last reviewed July 2017.
Last updated July 2017.