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Cervical abnormalities: CIN3 and CGIN

Recurrence of abnormal cells

Treatment for CIN is very effective and, in most cases, successful first time. Many of the women we interviewed, though, were anxious about recurrence after treatment and would have liked more information about it.

 

A doctor explains that the chances of recurrence after treatment for CIN3 / CGIN are small.

A doctor explains that the chances of recurrence after treatment for CIN3 / CGIN are small.

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If CIN3 has been completely treated, in other words the abnormality has been removed in it’s entirety with a zone of normal tissue around it, then the chances of it recurring are very, very small. 95% of women do not need any additional treatment.

Somebody who has had CIN3 is at slightly higher risk of developing cancer than somebody who has not had CIN3, and that’s why we advise that these women should have smears every year for ten years. And if the smears are normal, then they can return to the normal screening interval.

And some women were also worried about their daughters. And whether there was any more increased risk now for their daughters?

Well they can be reassured it’s not familial. It doesn’t run in families at all. So their daughters are not at any higher risk.



*A doctor explains that the chances of recurrence after treatment for CIN / CGIN are small.

 

Jane feels she would have worried less if she’d known the chances of recurrence were low. She...

Jane feels she would have worried less if she’d known the chances of recurrence were low. She...

Age at interview: 45
Sex: Female
Age at diagnosis: 35
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I wish I’d been assured that the chances of reoccurrence were very low. I think if I’d had that, I wouldn’t have sort of spent two or three smears beating myself up about missing them, and panicking about thinking that I can’t let this happen. I can’t go for a smear because if it’s there, I can’t sort of deal with this again. You know, I think if I’d have had, and I think also its, talking about it afterwards, I think that’s the thing. Because it’s so sort of, I think anybody who’s ever had the word cancer, no matter how you say it, said to them, it just stays with you, you know. It does stay with you.

So I think if I’d had CIN3 said to me at the beginning, maybe my head would not have just heard the word cancer. And then maybe I would’ve not ignored two or three smears. And I’m being honest that I did that because I thought it would come back. And then of course every cycle you look at, you think, you’re watching. I was watching every cycle thinking if there’s a change then this has come back. And of course our cycles change all the time but, you know. So yes, I think that would have been really important to have helped understand that I could’ve got on with my life. Well I did get on with my life, but I wouldn’t have worried quite so much on quite such a regular basis.

I think that’s the thing, and I think because it’s such a, it was such a quick, everything happened so quickly, that was the other side of it, you know, regular smears and I imagined these things took ages to evolve, you know. I thought cell changes, I thought well I’d be okay because I’ve had three or four smears in so many years. I’ve always had regular smears. And it was the speed of it all that I think was quite shocking. So yes, sort of at the time more information definitely. Definitely.

A few women we spoke interviewed did have a recurrence of abnormal cells after treatment for CIN3, and this was often found at a follow-up appointment. Most were treated again by LLETZ.

 

Susan was shocked to have CIN3 again. She wondered why it had recurred and how long it took for...

Susan was shocked to have CIN3 again. She wondered why it had recurred and how long it took for...

Age at interview: 31
Sex: Female
Age at diagnosis: 25
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I went back for the 2006 smear, and unfortunately that came back with CIN stage 3. And I was quite surprised because things had gone so well for the first few repeat smears that your kind of lulled into a sense of security. You go for your annual smear and you think, “Well that’s it, it’s another year ticked off,” file the letter in my little folder.

And when it came back I was like, well it’s come back and it’s three again already. Shouldn’t it be one or two? And, “Well when did it come back?” It was clear last time, how can it grow so quickly? And you think, “Well did they do it right a year ago or…” So yes again you start to worry and you think, “Well it’s come back, so does that mean they’ll do the same again, or do they need to do something, a bit more permanent this time? And does this mean that I’m going to have to have a hysterectomy? And again you jump further than you need to. So I think I was a little bit anxious going to the appointment in terms of what they would suggest.

And what happened?

I went to the appointment. When I went in I remembered the nurses and they remembered me, so we were chatting. I was saying, “Oh no, it’s come back, I’m really worried. And joking saying, “I don’t know what’s going to happen next.” I think I did mention something about hysterectomy, and in a nice friendly way, they just said, “Oh don’t, no. We’ve never seen anybody requiring that. Well, speak to the doctor and she’ll reassure you.”

And it was very reassuring. I didn’t feel at all silly that I’d brought it up. I didn’t feel that they were inappropriate to say that, and it just put me at ease. So I relaxed in my chair and listened, and the doctor again was very, very good. She explained everything to me. Explained that sometimes this does happen, talked about the future, about my age and future plans that I would like to have a family perhaps at some stage.

And she said that it would be possible to do another colposcopy, which really relieved me and reassured me because I’d been through it before, I knew what to expect. And I’d actually got some days off, so I asked if that was possible to do that at the appointment. And she said it was.

There and then?

Yeah, there and then.

Because you’d been through it before so you knew what to expect?

Yeah. I thought well it’s the perfect time to do it.

 

Sarah’s doctor was very good and referred her for treatment quickly when abnormalities were found...

Sarah’s doctor was very good and referred her for treatment quickly when abnormalities were found...

Age at interview: 37
Sex: Female
Age at diagnosis: 24
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Subsequently went to hospital, colposcopy clinic. And that kind of misnomer thing where they either freeze it or burn it, or whichever way it is around, I don’t know. But a bit unpleasant, and it obviously got some… there was lots of treatment and things. I don’t know exactly what it was called, medications and what not and after a while I seemed to be fine.

But then obviously they like to review the smears after that because of the abnormalities that had occurred, and subsequently the same thing happened, a little bit later, a couple of years later.

But this time, yet again it did go very, very fast. And my doctor was so concerned that I’d actually booked a trip to Australia. I was going away for sort of six weeks and she was aware of that. And when the results came back, I remember it was the Thursday of the week. I was flying on something like the Sunday or early the Monday morning.

So she must’ve got the results, and actually when I got home on the Thursday evening, there was a hand delivered note through my door, saying that she’d booked me into the colposcopy clinic at [hospital name] to go on Saturday. That’s obviously the concern that she had. Throughout all of this I can’t say that I felt ill physically.

So for the last seven years pretty much you’ve been fine?

I have been fine. They did keep reviewing it which obviously, and I was sort of, “Can I have six monthly smears?” Not that I love that, legs up in stirrups business but, that sort of scrape, but I didn’t want the same situation to myself happening. And I wanted to know how my body was reacting, also to that treatment and whether it was fighting everything, and what cells were going to develop again. So, yes, touch lots and lots of wood, no nothing has happened since.

Some of the women who had a recurrence said they were given sufficient information and felt reassured that the abnormal cells would be treated quickly and successfully. Others, though, were very disappointed and upset when they were told they would need more treatment.

 

Anna was shocked when, at a follow-up appointment, more abnormal cells were found. She was...

Anna was shocked when, at a follow-up appointment, more abnormal cells were found. She was...

Age at interview: 29
Sex: Female
Age at diagnosis: 28
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Life seemed to pick back up and get back to normal again. I actually managed to forget about it. Christmas came, and then I had my letter through to say I had to go for my six month smear, which was last month. I went for that on my own, thinking it was just a normal smear. My last one was normal, nothing to worry about.

But after the smear, they’d also done a colposcopy at the same time, and he [consultant] had detected that there was some abnormal changes on the cervix. So he said, “Whilst I’m here, we’ll do the procedure again.” Asked if I felt comfortable with that. I think I was more upset with the fact that I’d gone on my own. I didn’t have the support waiting for me afterwards, and I actually cried when I was having the procedure done. And the nurse gave me a cuddle afterwards because I was quite shaken up.

My results came back three weeks afterwards saying that they’d found a small amount of CIN1, but they had actually removed it all within that procedure. And I now need to just go back again in six months, but they will keep me under further review because they did find that I have abnormal cells growing anywhere in my cervix, so they wanted to keep an extra close eye on me.

 

Jo knew what to expect when she had to have another LLETZ but that didn’t make it any easier. The...

Jo knew what to expect when she had to have another LLETZ but that didn’t make it any easier. The...

Age at interview: 33
Sex: Female
Age at diagnosis: 25
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I had the treatment. And then I was on annual check up, so I had annual check ups after then.

And then I think about five or six years after that, I had another abnormal smear. And obviously after then you think, “Right I’ve,” you pay more attention to it. So again, yeah I went with my mum. I went back to the hospital, had the second treatment. And then, because I’d had the previous bad result, they put me on a six month check up. So I had the six month, I think I had two six months, and now I’ve just gone onto yearly’s again.
 
You don’t comprehend having to go through that a second time. I mean having gone through it the first time, I guess you go into it knowing what’s going to happen. Doesn’t make it any better that you know what’s going to happen now. And I was comforted by the fact that, you know, he did say, “Look, well, we’ll do it again in six months because you’ve had this previously.” I knew they was having, you know, they was keeping an eye on me.

So to do that another six months I was like, you know, no absolutely. And I’m more than happy for that. Again, I’ve got to say the doctors and nurses are all really, really lovely. They make you feel very, very comfortable. But then again I didn’t have any sort of follow up from that other than my next smear test. And I think particularly having gone through it a second time, I think a phone call three or four days or even a week afterwards, to just sort of check in really.

Some of the women we talked to compared the treatment they’d had in the past with their second experience. Jane had a recurrence exactly twenty years after her first diagnosis. She preferred having a LLETZ to laser treatment and said, second time around, she was given more information and empathy. Debbie, though, was disappointed with the information and care she was given. She had a LLETZ twice because there were no clear margins after her first treatment. A few years later, she was treated by cone biopsy.

 

Jane had a LLETZ and found it better than laser treatment. The technology had improved and...

Jane had a LLETZ and found it better than laser treatment. The technology had improved and...

Age at interview: 50
Sex: Female
Age at diagnosis: 30
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This time around people would say things like “How are you feeling about it?” And I noticed a definite difference in all the medical staff. Maybe because it was in a different place, but I think because the thinking has moved on' you can’t just treat the physical symptoms; you’ve got to think about how this woman’s feeling as well. And they made much more of an effort to explain the difference between the different stages of development and to say that it was at a stage where something would have to be done because the next stage was actually full blown cancer.

And you can imagine of course I was really dreading a repeat of the laser treatment. And I said if I have a choice I’m not having that, because I know you can’t have that under anaesthetic, and it was so painful and horrible. So what they decided to do was an operation called a LLETZ, and it’s a surgical incision. And it was very, extremely high tech this time around. I wasn’t doing the recording but he was filming. Well I don’t know if he was filming but he had a video camera so that I could look at the screen and see my cervix, and see when he painted the solution on. He said, “All the cells that have got these changes, they’ll turn white.”
 
That was a much more positive experience. And although I had some bleeding afterwards, it didn’t go on for nearly as long. And they seemed to make me much more aware at each stage of what it would be like, and checked up on how I felt and stuff like that. And it wasn’t nice being in hospital overnight but they tried to make me kind of comfortable and reassured as possible, yeah. So that was much more positive.

 

Debbie had a reaction to the local anaesthetic on two occasions but, this time, was left on her...

Debbie had a reaction to the local anaesthetic on two occasions but, this time, was left on her...

Age at interview: 36
Sex: Female
Age at diagnosis: 24
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It must have been my second, maybe second or third routine three yearly smear. No reason to suspect there was anything at all. And it came back there was abnormalities. So
referred for colposcopy. I’m thinking ‘97, where they did loop diathermy treatment there and then, at the time.

I don’t remember a lot about it except they said it was quite a large area. So that was that. Then six month check up, which I seem to, I think was another colposcopy. I don’t know why I’m thinking, but it might not have been, it might have been a smear. And they’d recurred. And they said that possibly they hadn’t removed them all, although it had come back with clear margins when the results came through. The chap I saw at the time said that he thought perhaps he’d maybe missed a bit. So they did another treatment.

But I do remember having an awful lot of time off work, because I kept getting infections. Constantly. So basically for about 8 months I was on and off antibiotics and in and out to the GP. But after the second treatment, that came back with clear margins again. I had another six monthly check up, which came back fine, okay. So I went onto yearly smears after that for five years, until I went into the three yearly programme again.

And then it all happened again. So that was this year, December. I had one clear smear, after the, when I went back onto three yearly smears. Then I went for another one in December, which I got a letter from my GP saying that they’d found changes which mirrored the results that I’d had previously on the initial that came back abnormal. Which is all it really said, and said that she’d refer me to the colposcopy.

When I had the treatment the first time when I was in [Scotland], about twelve years
ago. I did feel at the time that every step of the way I knew what was happening. And I felt that the communication was much better and I felt the after care was much better.

After the second loop diathermy treatment that I had, I had a bit of a reaction to the anaesthetic, the adrenaline, which I hadn’t had the first time so I got a bit confused about why I was suddenly shaking like a leaf and seemed to not be able to stop. And the nurse was fantastic, really, really good. Let me stay where I was for a while, and then took me through to another room and sat with me and chatted about what was happening, and why it was happening. Got me a cup of tea, and just had a general chat, which was lovely.

This time round I mentioned that this had happened previously, and they said, “Oh that’s just the anaesthetic, that’s nothing to worry about.” And it did happen again. But I was basically just left. I was left and they went off and did their thing. And then came back and said, “Alright, you’re free to go.” And I knew as I came out there was a waiting room of people waiting to come in.

No conversation afterwards with the nurse?

No, they weren’t, they left me to get dressed. And that was it. They had a conversation amongst themselves about what had happened. I didn’t really feel, yeah I didn’t really feel at all that they were looking at me as a person. It felt more that I was a piece of meat coming in, have a bit removed, and sent off again and wait for the next one to come in. And they were pleasant people. I didn’t have any problem with that, but I just felt yeah, very professional, but not particularly caring or approachable.

Ruth had abnormal cells several times over fourteen years or so. It was a ‘constant worry’ for her and, later, she was also treated for VIN3. VIN stands for ‘Vulval Intraepithelial Neoplasia’ and means there are precancerous changes in the skin cells of the vulva.

 

Living with abnormal cells was worrying and Ruth never felt reassured when she was told she was...

Living with abnormal cells was worrying and Ruth never felt reassured when she was told she was...

Age at interview: 41
Sex: Female
Age at diagnosis: 28
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Every time I thought I might just about get the all clear, again they’d fine CIN3 or severe changes. And there was always this, I never felt reassured. Even when I had the appointment they’d say, “Yes everything’s fine.” There was always this nagging doubt at the back of my mind that actually it wasn’t fine and that they’d missed something, because there was, it had kept coming back. And things that I’d mentioned, I didn’t really feel had been investigated enough. So that was just been a constant worry for the last few years really.

I then went onto develop some other symptoms which I found very embarrassing, and I ignored for a long time. Itching and sore spots around the vulva. I mentioned at one of my appointments with the consultant and he said he couldn’t see anything wrong. But of course the instrument they use when they’re doing the examination would have obscured it, in the particular area this occurred. So I buried my head in the sand and he said, “Well, it’s just like any area of skin, you can have dry itchy patches.” And so I ignored it and but it kept getting worse.

I went to a Well Woman Clinic and they said, “Oh we don’t deal with that kind of thing.” So in the end I had to swallow my pride and go to an STD clinic. Which I just felt, I shouldn’t but, you know, I just felt absolutely mortified. And again this had affected relationships. And I had to undergo an investigation there. And to cut a long story short, as well as CIN3 I had vaginal and vulval level 3 changes, which I had to have surgery on.

Most women said their anxieties about recurrence lessened over time, the longer they had been clear. They were pleased to have regular follow-up care because they felt that, if they did have abnormal cells again, these would be found and treated early (see ‘Follow-up care’).

HPV as a ‘test of cure’
 
The NHS Cervical Screening Programme is introducing an HPV ‘Test of Cure’ for women who have undergone treatment for cervical abnormalities (CIN 1, 2 or 3). When women return for follow up screening, after treatment, if the test shows normal, borderline or mild screening results, the sample will also be tested for HPV. If HPV is detected or the screening test shows an abnormality, women will be referred again to colposcopy. If the screening result is normal and the HPV result is negative, women will return to routine recall for cervical screening every 3 years. This new policy aims to reduce the need for up to ten years of annual cervical screening.

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Last reviewed July 2017.
Last updated May 2014.
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