Cervical abnormalities: CIN3 and CGIN

Women will normally be referred to colposcopy if their smear is abnormal. There are a number of grades of smear abnormality. And that varies from mild abnormality, which equates to CIN1, to the severe abnormality, which equates to CIN3.

A smear is a screening test so it doesn’t say that there is a problem with your cervix. An abnormal smear means that there is likelihood that you have a problem with your cervix. So the point in colposcopy is so that the doctor can have a look at the cervix and determine if indeed there is an abnormality. So women are sent to colposcopy so that the doctor can have a look at their cervix to determine if indeed there is an abnormality and if it is an abnormality that needs to be treated.

So what would normally happen is that the woman would meet the doctor and the doctor would explain what the smear test was all about. Colposcopy is having a look with a camera and a low degree of magnification at the cervix. It’s a bit like having a smear test done really, but it takes a little bit longer. The doctor will have a careful look at the cervix and put some solutions on the cervix, which show up any abnormal cells. And they might take some biopsies, which are small tissue samples.

And once that assessment is made the doctor will be able to tell the woman whether or not she requires treatment or whether this is an abnormality that can be watched, or whether indeed there is no abnormality at all on the cervix.

I didn’t know what a colposcopy clinic was. I didn’t know what mild pre-cancerous changes were, and I didn’t know what CIN stood for. And even now I probably don’t remember. It’s not terminology I was familiar with.

Then, my Mum must have been more worried than I was because she said she would fly over and attend the clinic with me. So I remember being reassured by that. And I think I had about a months notice between the initial results from the smear and the colposcopy clinic.

Can you remember what the letter actually said?

I’ve got it here [background noise]. Yeah. “An appointment has been made for you to attend the clinic on the 27th November at nine o’clock. The clinic is situated here. During your consultation we may be able to carry out any treatment required on the day of your appointment. And just to confirm,” and then there was a letter just detailing what women should do if they’ve had moderate or severe pre-cancerous changes on their smear.

So already on the letter it mentioned that there was pre-cancerous changes?

Yes. And it said you will, and you need to undergo colposcopy. And then colposcopy is a procedure which is like having a smear taken, except the doctor or nurse sort of examines the cervix of the womb.

And what did you think when you got the letter?

I just didn’t really, again I thought a smear was unpleasant enough and I thought this was going to be even more unpleasant. But I didn’t really have a choice. So I just knew that I had to go and get it done. So I was dreading it a bit, but wanted to get it out of the way and over with, so I could move on.

I’d been given a leaflet that explained about a colposcopy. It explained what a colposcopy was; there was some pictures in there as well. And that really put my mind at ease, and I thought that actually this isn’t anything too untoward, and anything to worry about too much necessarily.

I think I am quite a calm and relaxed person, so at that stage I think I thought, “Okay, I’ll just do each stage as I need to and get over each stage.”

I think I had all the information that I needed. I think even if I didn’t, I knew that I could access it from other sources. When I left after the colposcopy, there were phone numbers so if I had any concerns over the next few days I could phone somebody at the clinic; which was nice because you knew that if you were worried in any way, that there was somebody that would’ve known who you were, rather than just an anonymous help-line. I also knew that I could visit my GP, which was reassuring.

Well I’ve always been very good, on top of my smears, so I’ve always gone. I had one, it must’ve been a couple of years ago, that was abnormal. But it was a mild abnormality, so they just waited to see what would happen.

The next one I had was okay. Then I had a smear March 2008, which I didn’t receive the results of, and I went travelling in June 2008. So, because it had been a couple of months, I thought I haven’t heard so I assume everything’s okay. Which I realise now was an error.

I was actually travelling. I’d gone travelling for a year, and it would have been February 2009. I saw all this business of Jade Goody. I thought, “Oh my God you know, I didn’t get my results. I should probably find out, give them a ring.”

So I called up, and they said that there had been changes again, which were mild abnormalities, and as a result they’d sent me for a colposcopy. But because I was away I hadn’t received the letter. So I arranged, in Colombia, to have one. Which was a nightmare because I didn’t speak much Spanish. I could basically speak how to order food, get around on transport and stuff, so obviously this was a little above what I could handle.

Anyway so I went and they obviously acknowledged there was a problem. They sent my biopsy off. I asked for when the results come back to have an English speaking doctor, which thankfully they did get for me. But again, although his English was good, it wasn’t perfect. He was very good, you know, and he explained everything would be okay, but I left the meeting not quite sure whether I had cancer or pre-cancerous cells.

I remember being called by one of the nurses, going into this little office, and they obviously told me, you know, you needed to get changed and put the lovely NHS gown on, as you do. And the consultant will be in to see me. He literally walked in, said hello, asked me when my last period was, and then that was it. I was then sort of sat in the chair having it done.

At that point I didn’t really know what to expect, you know he didn’t ask me any questions. He didn’t tell me what he was doing, so I just was very nervous, and just didn’t have a clue really as to what he was doing.

Was there a nurse as well?

I had two nurses. But even they didn’t really say a great deal. They were just really repeating what he was, you know, telling me to do. So at no point really did he say anything.

I think the problem is, when you’ve a leaflet, they do say that they tend, if they can, they will do the treatment as well there and then. So it’s over and done with. And he did the colposcopy, and then told me to go and get changed and he’d come and see me. He’d come in, and I literally sat down, and got changed and I just got a leaflet thrown in my hand telling me about the LLETZ treatment, and he went to walk off.

Did he say anything while he was doing the colposcopy, that what he can see?

No. He said nothing. He said absolutely nothing to me.

So you didn’t know at this appointment that you had CIN 3?

No, I knew nothing. It wasn’t until he went to walk off that I actually thought, “Well you know, hang on a minute. I’ve got a couple of questions. One, what is it?” He just went, “Oh it’s CIN3.” Then still went to walk off.

So you had no time to ask any…?

No, I had no time to ask any questions whatsoever.

Did you have any time to ask these questions to the nurses?

No, she just showed me the way back to the waiting room, and went off again.

So you went to the colposcopy clinic, and you, were you talking to a doctor and nurse at this point?

Just a doctor at that point. And I was in tears and I was very worried about the whole thing. And then there was a very quick run through of questions. Here’s what needs to be done, and then straight into the treatment room. There was definitely a rush; everybody was in a rush because they had lots of people to get through on the same day.

Did he tell you there and then what you had?

It was a lady. No, what she did was, she just said, popped you upon the bed, told you to put your legs in the stirrups, which was, felt very degrading. Then you had to, she said she was going to take a look at your cervix, the neck of your womb, and they put down I think it’s a dye, so this shows up whatever the cells, and they are able to look at the cells. I think that’s the purpose of colposcopy is to be able to properly look at what the cells look like. And they have to stain them with this dye first of all, which felt a bit weird I think, once the dye is added it feels a bit strange but not painful.

How long did the whole appointment take?

The whole, sitting with the doctor and the questions would have taken no more than five minutes. And it was very much just going through getting information from me and then, from being up on the couch, I think it probably took her ten minutes or thereabouts. I don’t really remember. And then I was moved into the room right beside where that treatment room was and given a glass of juice and some painkillers by the nurse, and just left on my own. And that was horrible as well if I’m honest. And then I met my mum outside the room and I was upset. And then I got the tube back home again afterwards.

I went back three months later. She [consultant] did a biopsy. And that come back still moderate changes, but they didn’t seem bothered at all. But I was bothered if you know what I mean? It was really hard because they sort of, they do it every single day, so it’s like, to them it’s nothing. But to you it’s like a massive, massive deal. So I just kept quiet because you’ve got all these questions in your head that you want to ask, but when you’re there you don’t ask them.

So 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 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.

I’d describe the colposcopy as a quite a simple procedure. What happens, you go into a room, you sit down. The consultant asked me about past health issues. He asked me about my periods, what pill I was on.

He then explained to me what was going to happen. He said, “You’re going to be sat in a chair with your feet in little stirrups.” He drew me a picture of my cervix and said that basically they’d found abnormal cells, my smear indicated abnormal cells and he was going to remove them with something called a LLETZ. I had a LLETZ with an extra top hat, as well, I don’t know whether it’s the same thing or not, I’m not sure.

And he said what will happen, it’s like an electrical current through a wire and they would like excise basically the bad areas. So I was asked to get undressed and go and sit in the chair. And there was a nurse who kept me occupied. She asked me lots and lots of questions about what I did, and blah de blah.

And he then had a look at my cervix with a telescope, a magnifying telescope and it was on a little screen, and he then put some solution, I don’t know what it was, I can’t remember, into my cervix, which then showed up the cells that needed the treatment. And then he explained to me that any bad cells would go white, and that happened quite quickly, the cells all turned white from what they could see.

And he then told me that what he was going to do was give me some anaesthetic and he was going to completely remove all of the bad cells. And then also take some of the biopsy to check that the margins, or basically to check that he’d removed them all. He explained to me about basically what clear margins meant. He said that if there were enough good cells around, then that would indicate a clear margin. So he then gave me the anaesthetic which, that was the worst bit. The anaesthetic’s the worst bit, and it doesn’t really hurt, it’s just kind of unpleasant shall we say. It’s not painful, it’s just peculiar.

Does it sting, because some..?

Yes a little sting, yeah, almost like a sting. It just kind of gives you a bit of a crampy tummy, like mild period pains. I wouldn’t say severe or anything like, nothing, it’s not hideous, it’s okay.

And then while he was doing the treatment, I could just feel like a little tugging inside, nothing, not painful at all. Just obviously, just didn’t feel quite normal, but it was, it was like a little tugging procedure. I didn’t feel any pain whatsoever, so I would say to people who’ve got to have it, not to worry. It’s not that bad at all.

So after four weeks I went for my colposcopy, and obviously because I didn’t have the information about what the colposcopy was really, and what they were going to do. So I think it was more the worry of what’s there and what was going to happen. Went for the colposcopy, met the consultant and, as soon as I walked in, the first thing he said to me was, “You do realise it’s severe don’t you?” So that filled me with ‘great’, yeah.

So, went through – wear a skirt – went through to the room where they do the colposcopy. And basically, to be honest, it looks very scary but it’s basically a smear. But they just use a camera to take a closer look. And you have, I had the choice of whether to look on the screen, at what was or wasn’t there, and I did look because I wanted to know what was in there basically.

In a way it was good because I knew what was there, but in a way I wish I hadn’t because of the severity of the abnormalities that I had, but it did comfort me a little bit to know, “Right, that’s what I’m dealing with.” And what do we do from here? Usually most of the time they do, “See and Treat.” And because my cervix, the whole of my cervix was covered in abnormalities, my consultant decided that he couldn’t treat it there because it would be too painful for me and just too stressful. And plus he wouldn’t have been able to get to where he needed to get to.

He turned round to the nurse and said, “You need to book her in under a general. I can’t do anything now.” And then he toddled off and then I was left with the nurse and she dealt with the booking of the appointment

I did find the colposcopy quite difficult. The nurse was very good. She held my hand. But the consultant I think knew I was very nervous and very upset, so he didn’t really talk to me a lot during the colposcopy. He talked to his colleague, which, he had to talk him through it; he had a colleague that was training with him. And I said that the trainee could be in the room, which was absolutely fine.

But I think, kind of not really offering any reassurance at that stage, or telling me it didn’t look that bad. The actual trainee did say, “This is not that bad.” Which felt quite reassuring from my point of view and felt quite nice. But the consultant was a bit more matter of fact about it. But then again, you know, obviously there’s not a lot of reassurance they can offer before the results come back. So I kind of understand that. But it would be nice sometimes to have a bit more of a bedside manner with patients I think.

So he didn’t say very much. Did he say anything like, “We’ve seen CIN3 here, or, it looks very early stage?”

He said that there was definitely CIN3, and I said to him at that point, “Does it look like there’s any cancer there?” And he said, well my actual terminology was, “Can you tell, I bet you, well I bet you can’t tell whether there’s, whether it’s cancer or not at this stage, can you? Until you get the results back.” And he said, “No I can’t.”

And I think, you know, to be fair to the consultant he didn’t want to offer me a reassurance that it was CIN3, if then later it did turn out to be sort of invasive cancer. So he told me actually the facts that were there, that it, I suppose it’s quite difficult to deal with when you just want the reassurance that everything’s going to be okay. So he did say that there was CIN, definitely 3, but he wasn’t sure whether it had progressed to cancer at that stage. He couldn’t tell.

It was four weeks after that that I received the letter to say that I needed to go back and make an appointment. The appointment date was through for me to go back and see him again to discuss any further treatment that was required.

So really I knew there and then that, you know, I had it [cervical cancer]. Well I knew really that they’d found some cancer. But you talk to people and people are very reassuring, telling me about, you know, ‘everything’s going to be fine. I’m sure it’s just procedure’, blah, blah, blah. But I went and I knew in my own head that I was going to be diagnosed and I went and it was, and fortunately it was very early stages of cancer.

Again, he was absolutely fantastic. I was given a clinical nurse at that point, who was very, very supportive. She then took me, a lot of information she gave me. Totally bombarded you with information really. The amount of stuff they give you.

And then that’s when she recommended Jo’s Cervical Cancer Trust www.jotrust.co.uk to me and gave me the website address and things like that. I didn’t really go, I didn’t really do much research on the internet because I just found if I Google anything or look on there it just totally spins me out. The amount of information that was on there, and it was all horror stories, and so I really didn’t do much about that.