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Cervical abnormalities: CIN3 and CGIN

Follow-up care

Many of the women we interviewed talked about having follow-up care a few months after treatment. A colposcopy and cervical screening test (smear) are usually performed 4 - 6 months after treatment. Further follow-up may be advised once the results of colposcopy or / and cervical screening tests are received. Usually this involves regular cervical screening tests for a set time.

 

A doctor explains that follow-up care is individualised and depends on a number of factors,...

A doctor explains that follow-up care is individualised and depends on a number of factors,...

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Follow up is individualised. It depends on what the severity of the abnormality was, what the treatment was, how successful the treatment was. As a general rule, if you’ve had a loop excision for CIN3 and the CIN3 has been removed completely, you’re usually seen back in Colposcopy for one more time. And if the smear is normal at this stage, you’re told to go back to the GP for annual smears for the next 10 years.



*If you have had treatment for cervical abnormalities, you will be screened again six months afterwards. If that screening result shows you have HPV, or you have moderate or worse dyskaryosis, you will be invited back for colposcopy again to see if more treatment is needed. If no HPV is found, you can go back to regular screening every 3-5 years depending on your age (NHS Screening Committee 2014).
 

Most of the women we talked to were pleased to have follow-up care because they felt that, if abnormal cells were found again, they would be treated early. Many were unsure when their first follow-up appointment after treatment would be, how regular these appointments would be and what they would involve. Some were also unsure whether and for how many years they would be seen at a hospital or at their local surgery. Several women said they would have liked more information about follow-up care.

 

Joanne had a follow-up appointment six months after treatment. If the results were clear, she...

Joanne had a follow-up appointment six months after treatment. If the results were clear, she...

Age at interview: 36
Sex: Female
Age at diagnosis: 35
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So you got that letter and it said that there wasn’t any cancer?

Said yeah, there was no signs, no signs yeah.

And did it say anything about what would happen next?

Yeah, it said I would get a letter for six months time to go back for a repeat smear test. And then

At the hospital?

Yes, at the hospital. Yeah. At the hospital, and then after that, if that was clear, what they would do was that you’d put you up on a yearly smear test at your GP’s. Yes.

So did you feel that it was clearly explained and…?


Not really. I felt a bit confused to be honest. Because I’d read other places that if you have a clear smear after six months of treatment, they’ll keep you on six monthly smears for another year. So maybe it varies from region to region.

But for me, it sort of, it does worry us because I would rather even know, as far as I can gather, it takes a long, long time for abnormal cells to reoccur or anything. I know in my own mind I would rather have had the opportunity, I would rather have another smear in six months time.

So six months then came?

Yes.

And you went back to the hospital?

Yeah, went back to the hospital, yeah.

And what happened in the follow up?

It was basically, it was very similar to the first appointment. But obviously went over my history that I’ve been treated for. I had a biopsy and the results came back normal. And she just explained that she was going to do a smear test and then that would get sent away. Then if it came back normal, then I would go onto yearly smears.

 

Genevieve has annual cervical screening tests (smears) at her GPs surgery and regular...

Genevieve has annual cervical screening tests (smears) at her GPs surgery and regular...

Age at interview: 41
Sex: Female
Age at diagnosis: 33
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Everything was fine, and just once a year you just continued having regular screening?

Yes I do. I mean I actually go through, just through my regular GP, NHS GP practice, and I do their screening. So they’re obviously appraised, have all my notes and appraised of what I’ve been through, my history.

But I have been advised to go back to my original gynaecologist because the tests that they do would be more thorough and would cover the Papilloma Virus. Just to check if there’s any reoccurrence. So I was a bit surprised at that because I was sort of happily going along to just my NHS practice.

And who advised you to go back to the original consultant?

His secretary. Because she called me and said, “You haven’t been for eighteen months.” And I said, “Oh it’s okay, because I had my tests and everything’s fine.” And she said, “I recommend that you, that we also do it, absolutely fine to do that as well, but that we do it because it’s a more thorough examination.” Which I was a bit surprised at. And so I continue to go to both.

So you have two smears a year?

Yeah, really, yeah. Well certainly two every 18 months.

Many of the women we spoke to had their first follow-up appointment six months after treatment and the second six months later. They then had annual appointments for ten years, which involved having a cervical screening test (smear). A few women had colposcopies at the hospital as well as cervical screening tests at their GP surgery.

 

Susan feels reassured by having annual follow-up. She went back to the hospital for her...

Susan feels reassured by having annual follow-up. She went back to the hospital for her...

Age at interview: 31
Sex: Female
Age at diagnosis: 25
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They said that I’d be followed up every year for at least ten years, having annual smears. And to be honest that didn’t faze me. I felt quite reassured by that in fact. You almost, I think when you’ve had this experience I felt incredibly relieved that they’d found what they had, when they had. If they hadn’t, and it had gone on a few more years, what would’ve happened? And aware that things might’ve been very different.

So I was very pleased that that was going to happen. Initially I think they were doing smears every six months. And they said once I’d had three clear smears it would go onto annual, and that was fine.

So after the appointment at the colposcopy clinic, you next went back after six months?

I did, yes. I went back to the same clinic. And it was nice because it was the same doctor and the same nurses. And I had a smear, and they were asking me how things had gone since the last appointment, how had I been and how was I feeling. And it was nice that they actually took time to ask questions. Didn’t just jump in and do the procedure. And so I had another smear and it was all fine.

Women often felt reassured that they were being monitored annually and said they would feel uneasy about being screened every three years on the NHS Cervical Screening Programme. Others, who’d had clear results for some time, were now back to 3-yearly screening.

 

Sarah now has three yearly cervical screening and always attends. She felt reassured by having...

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Sarah now has three yearly cervical screening and always attends. She felt reassured by having...

Age at interview: 35
Sex: Female
Age at diagnosis: 25
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I had to come back six months later and have another smear. And then when that was clear, I’d come back a year later. And that would happen for three years in a row. If everything was fine, which it was, then it went to, it went from one year to three years. And everything’s been fine since then, knock on wood.

I’m just waiting for my latest. I just had a smear so yeah, and that would have been the second of the three-year ones. So, hopefully, well a few minutes of uncomfort, it was
worth it.

I’ve been sort of given, yeah clear, never had a call back on any of my smears. And attended all my smears and actively, you know, was aware that I needed to go.

….The worst bit is, when you’re going through it, is you don’t, because you have to go back every six months and then you have to go back every year, and then it’s three years. You always feel like you’ve kind of got these goal posts, and they’re getting moved as you get closer to them.

But that’s, to me that was just positive. That’s like sort of making sure, you know, not just doing something and then that’s it, you’re fine, you’ve had your treatment, off you go and good luck. That’s, to me, that was really good follow up care and that meant that all of a sudden my cells wouldn’t change and I wouldn’t know because I hadn’t been to the doctors for my three yearly smear. They looked after you and checked regularly and that was actually good.

 

Ann Marie now has smear tests every three years. She sees her GP if she has any unusual symptoms,...

Ann Marie now has smear tests every three years. She sees her GP if she has any unusual symptoms,...

Age at interview: 44
Sex: Female
Age at diagnosis: 29
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And you’ve been fine since?

Fine. There’s been a couple of things, I mean obviously as far as the screening programme goes, I was screened I thought it was every year for 10 years, but I think it was every year for seven years. I found one last letter, and it’s dated 17th January 2002, and then it says, “Thank you for attending the surgery recently for your smear test. I am happy to tell you that your cervical smear was normal. I would be grateful if you would attend for the next test in three years time. So it was, from 2002, so every year till 2002.

And then back on to the normal three years?

Back onto the normal three years. And there’s been...

Was this at the GP’s surgery?


Yeah. There’s been a couple of times when I’ve had a scare. And by that I mean I look very closely for all the signs and symptoms. So any bit of pain during intercourse, any kind of blood smearing like that at a time when you’re not expecting your period, and also any discharge with that in it. So I’ve had a couple of those things happen to me.

The last one was the year before last. But because of my history now, and I’m sure this would be the case anyway even if you didn’t have the history; the GP’s referred me straightaway. This time I’m going to [hospital name], just because the whole system’s changed. I go to [hospital name]. There’s a gynaecologist there, a fantastic guy, called [doctor’s name]. He had me in there straight away, had a look, found there was an erosion, treated it, off you go.

Many of the women we talked to felt anxious before their follow-up appointments, especially the first one, in case further abnormalities were found. One woman was unsure whether she’d need more treatment at her first follow-up appointment. Sandra was told that her results were clear after treatment but, at her first follow up appointment, she was disappointed to be told that she’d need more treatment.

 

Sandra was relieved when her results after treatment were clear. Later, when she was told there...

Sandra was relieved when her results after treatment were clear. Later, when she was told there...

Age at interview: 50
Sex: Female
Age at diagnosis: 48
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They said I would hear the results of the biopsy which they, what they took away. And I would get a letter to tell me the results of that. And in fact what they did, they sent me another appointment to go in to speak to a nurse to get the results. And she told me that it was clear and to come back in six months for another smear.

I went back in six months for another smear, and that was still under the hospital. And when the results come through for that, it was abnormal again. When I went, when I was at that appointment they told me then that the first biopsy result wasn’t clear, that I was told. It was actually borderline, but they don’t tell you that, they tell you it’s clear.

So I was quite annoyed about that because I’d kind of come away from that first appointment feeling very relieved, thinking that’s it, they’ve taken it all away. So I was very upset that second time I went back to find out that I was lied to, well not, perhaps not lied to, but not quite told all the truth.

So after having the second smear abnormal, I then had to go back in for a second loop biopsy, when they said they had to go in deeper. It was, they didn’t go in deep enough. So I had the second one. That was last year. And I’ve had one clear smear since. But obviously, because of what happened before, I don’t know if it was clear or not, so I still feel very apprehensive about my next smear, which is due next month.

Some of the women we interviewed said they were concerned about having a recurrence (see ‘Recurrence of abnormal cells’). Michelle's anxiety was exacerbated by media coverage of reality TV star Jade Goody’s experience of cervical cancer. Jane had been so anxious about having a recurrence that she missed two follow-up appointments in case abnormalities were found. Patricia worried so much about a recurrence before each follow up cervical screening test (smear) that she decided to have a hysterectomy.

 

Michelle had her first follow-up appointment after five months instead of six because she was...

Michelle had her first follow-up appointment after five months instead of six because she was...

Age at interview: 31
Sex: Female
Age at diagnosis: 30
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I had it slightly early, my follow up smear test because it was, unfortunately I think just before or just, and I got, I think that’s part of the problem as well, I think I forgot to mention this. But Jade Goody was diagnosed in August and my diagnosis was in September. And part of the reason I went with the bleeding is because obviously it was in the media, and it was something that was brought to an awareness.

And then I did have a few problems after my cone biopsy, a few minor kind of niggles. But obviously recovering from an operation, so that’s quite normal. And I’d had a few health problems, and then when they said that Jade was terminal, and I think it was either then or just before she died, I decided to go for my follow up smear because I think it was 5 months rather 6 months after, because I found it quite difficult to wait.

I just wanted to know that it was alright and that they’d not missed anything and, you know. And kind of that I was going to be okay really. So yeah, my follow up was in February, so it was five months after my initial diagnosis.

And that was clear?

That was clear. My smear was clear. They did a biopsy as well, which showed an area of inflammation, but it’s not cancerous or anything. It’s just inflamed tissue. But the HPV virus can cause inflammation, so it’s probably just the HPV virus there. But it wasn’t anything to worry about and my oncologist said that he would see me again in six months. But I was fine.

 

Jane worried about having a recurrence at a time in her life when she was very busy. She had four...

Jane worried about having a recurrence at a time in her life when she was very busy. She had four...

Age at interview: 45
Sex: Female
Age at diagnosis: 35
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I can probably honestly say no, I didn’t always go [to follow-up appointments] because then life took different turns. And I think what I was very aware of was that, you know, at the time with my sort of family situation, I thought, “Nothing can happen to me. It’s not allowed to happen to me because if it does, then it’s going to be awful.”

Because I had no family, and no, and my partner was going through his illness, and the children needed me. I thought I can’t be ill. So the thought of it reoccurring would’ve been too difficult for me. And so I think I must confess to have not gone to perhaps the bi-annual ones, you know, the two year ones.

And I think I missed two. But in missing two, I don’t quite know what that says about me, because having gone through the experience you think the last thing you’d ever do is miss a smear test. Because, you know, having that smear test caught me at those stages where it was dealt with. And I don’t quite understand why I did that. I guess apart from fear. I’m not sure.

Treatment for CIN is very effective and, in most cases, successful first time. A few women, though, did have a recurrence, which was found at follow-up. They were treated again, usually by LLETZ (see ‘Recurrence of abnormal cells’).
 
Women still need follow up if they have had a hysterectomy for abnormal cells (see ‘Hysterectomy’). The cervical screening test (smear) will be taken from the top of the vagina, near where the cervix was. This is called a ‘vault smear’. Very rarely, the abnormal cells can come back in this area, so women are offered cervical screening tests six months and one year after a hysterectomy. If everything is fine, no further cervical screening tests are needed.

 

Rachel had just had her first vault smear. She was anxious beforehand, and was waiting for her...

Rachel had just had her first vault smear. She was anxious beforehand, and was waiting for her...

Age at interview: 36
Sex: Female
Age at diagnosis: 35
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There was a check up post hysterectomy at six weeks, no eight weeks. And he said that everything looked fine. He’d done a very good job. I’ve got a very neat line. And I was to go back in April 2009 for a vault smear, which actually, sorry I missed that out completely. I’ve just had.

I’ve just had a vault smear in April 2009 and those feelings all come rushing back. It’s like “Oh my gosh, what if it’s still there? What if they find cancerous cells in my vault,” and the worry.

I don’t think it ever goes away. I don’t think, you know, that the thoughts are always there that there’s something they’ve missed. And even now I’m waiting on results, and I think no news is good news. I’ve not heard anything yet.

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, four to six months 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 July 2017.
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