Was there any mention on the letter of CIN 3?

Yes. I think they used the two, because there’s two types of terminology and that’s what was confusing me. It was severe dyskaryosis /CIN3. And I couldn’t work out what the difference was. And I must admit that was confusing, because I couldn’t work out whether the CIN3 was in addition to what they were saying or instead of. And I didn’t realise it was two different ways of classifying the same thing. And it took me quite a while of investigating before I realised. And I think, well there needs to be probably just one common description so that it isn’t confusing. Because it muddies the waters a bit I think.

And so it’s difficult to know what to look up?

That’s right, that’s what I think, from my understanding, the CIN is the more modern description and the severe dyskaryosis or whatever, however it’s pronounced, is the sort of older fashioned term. But understanding the classifications of it was a bit confusing to start with. But eventually we got to the bottom of it. And the one thing I did find was, you know, lots of information about it once I’d delved into it a bit more.

The statistics from the screening programme for 2008 shows that about 96% of women referred for colposcopy are seen within 8 weeks. And 8 weeks is absolutely fine. Obviously it’s anxiety provoking to have to wait, but the changes aren’t going to progress from pre-cancer to cancer in that length of time.

So it’s okay to wait?

It’s absolutely fine to wait.

*The statistics from the screening programme for 2012-13 shows that about 98.3% of women referred for colposcopy are seen within 8 weeks.

The doctor’s secretary was very knowledgeable and she told me not to worry, that everything was fine. And I was concerned that waiting three weeks was too long, and she said it wasn’t a problem.

And then she explained what was going to happen, so they sent me out some information about CIN3, about the cervix, what I could expect from the treatment. That I was having a colposcopy, that that was like a smear test but they just put some, a bit like vinegar, acetic acid, that it wouldn’t be painful and that they’d use a camera and that that was the procedure. That it was little more than a smear test. And then they’d check the results and we’d see how we would go from there.

I got a sort of information pack sent out with diagrams, showing exactly what was, what I should expect. And about the, that it would be, I’d have a light anaesthetic, that I’d be in for the day, that I’d come out that evening. And that they thought the cell, whatever they removed would be sent off for further tests. Just to, I suppose to see the extent of the pre-cancerous cells, or see if anything had developed further.

So yeah, I felt very well informed. Sort of read the pack, went Okay put that away. I have my appointment, and I had my appointment at that stage, and it wasn’t for another month. And I just thought, right, well there’s nothing really I could do, so I just you know got on with life. And obviously it was always in the back of my mind. But I just felt I was on the right road to being looked after.

And you felt that you had all the information you needed. Did you look elsewhere at all? Or generally you felt, I’ve got good information I don’t need too much more.

No, I genuinely felt I had good information. I obviously did look on the internet, but I felt more comfortable actually speaking to people, because if I had questions then they were able to be answered.

From all accounts looking at other pieces of information, more and more women are being diagnosed with this [CIN3] and it doesn’t lead to future problems and potential health risks. It is potentially a one off and, you know, it takes a lot of delving around to try and find this information.

This information wasn’t something that was sent along with the letter. When Hospital 1 originally wrote to us, it was a case of right this is your appointment, you’re booked in for this, you know. That’s it.

So that first letter had booked you in for an appointment at the colposcopy clinic?

Yeah.

And then you had a standard leaflet?

Yeah.

Saying that this is what happens at the colposcopy clinic, and a little bit about CIN1, 2 and 3?

Yes.

Did you look for more information at that point or not really?

Yes, I did. I sort of searched the internet. Just to try and find out sort of more information. At the time, though, I didn’t know what I was actually looking for, so I could only sort of do my search then on colposcopy and abnormal smears. Because at that point you don’t know how bad it is or anything else.

And the lack of information that I found, it was information, a lot of the websites that do was sort of cancer websites. Which then starts alarms bells ringing as well when, you know, when you just type it into Google or Yahoo. They did a lot of the information on that. But other than that, until you’d actually had it done and you knew a bit more, could you then actually go away and do some more sort of searching about it.

Husband’ I think based on as well though is, is in these leaflets there isn’t a significant difference in wording and paraphrasing between the CIN1 and CIN3. It is literally, as far as you’re concerned, CIN1, CIN3 are abnormal cells. it’s not paraphrasing in the sense of right this is a significant difference between one, the other and the other. it’s just generic.

During the appointment were you told what they were doing? Or

No, and I wasn’t, I didn’t give any consent to, what I later found out they’d taken a significant amount of my cervix away, and there was no explaining at the beginning. It was just Yes, we’ve dyed the cells; we can see that they’re faulty. Let’s just get on with this procedure It wasn’t, Stop, you don’t have to do this today. Do you want time to go away and think about it? Do you even know what we’re doing I didn’t have a clue what the cone biopsy was, or what a biopsy is, and it’s a massive amount of tissue being taken away. And once you remove parts of somebody’s cervix you can’t put them back. And I didn’t understand the implications of that at the time.

So what was the treatment that you had on that day?

The treatment that I had on the day was a cone biopsy, where they sort of shave the cells off. I think that’s right. And they also took a biopsy.

He [consultant] had a good diagram, he showed me what a cervix looked like, which was very helpful. And he explained what its function was. Why women have a cervix in the first place. What you need it for. And what happens, why they would need to remove bits of it, and how much they should remove.

His questions, he said, How much of my cervix was removed? What was the extent of the affected area? How close to the margins did the CIN3 come? Why did I need so much cervix taken away? Why did you not only take away the affected area, and not preserve my cervix? Is this going to compromise my future? I would like a copy of the histology report. If such an extensive piece of my cervix was to be removed why did you not carry out a biopsy first and then discuss the treatment options involved? Were the margins of the CIN visible? Did it extend to the endo-cervical canal? Just a little or extensively? I don’t, I wouldn’t have known what any of that meant, but he asked all of those questions.

The doctors and everything were all really good. I did find that I got a lot of information about the process but, like I say, general anaesthetic, I didn’t get any information on at all. And I think, especially if you’re 25, 26, 27, 28, 29, 30 or whatever, you probably haven’t been in hospital. You probably haven’t had anything wrong with you, and you probably haven’t had general anaesthetic before. And so maybe a little bit of extra information on like the risks of that, because again if you go on the internet it’s like, I think I found some terrible statistics about the, you know, whatever 4 in every million people die on the table. Which doesn’t sound that many, but to me I thought, you know, could have been.

I was convinced I was going to have a heart attack and die under the general anaesthetic so, for me, the pain I was kind of convinced was something I could take. In the end it was kind of like my parents sort of talked me round. But I literally just didn’t even think about the surgery. I was like, Yeah, whatever, you’re going to cut it out, you know It was the general anaesthetic.

General anaesthesia is completely safe now. And I mean these are fit young women who have no other health problems generally speaking. And there is really very little to worry about. The important thing, of course, is to tell the anaesthetist about their fears and they’ll be able to calm them down.

It would have been nice to have information on what I could expect after I’d had the treatment. For example, they’d warned me I could have heavy bleeding, but they never said what constituted heavy It would’ve been nice to have sort of a better idea of what was normal and what wasn’t. So I would’ve known when I needed to go and call the number and go to emergency, before it got that bad maybe.

Also what I should avoid and what I shouldn’t. For example, should I have avoided exercise? Should I have avoided heavy lifting? What did they mean exactly by take it easy’? And for how long? They didn’t really specify it and I felt fine, so, it was, you felt kind of stupid taking it easy.

And you mentioned that there’s still some questions that you’d like to ask either a doctor or a nurse. Can you remember what these questions are?

I have a few questions about HPV. Because it’s sort of what causes it, causes the abnormal cell changes. No-one ever recommended having a vaccine. I’d quite like to have that done. Apparently there’s an age cut off and I’m almost there so I’d like to have that done as soon as possible. So I need to ask somebody about that.

A loop excision for CIN doesn’t affect the ability to get pregnant. It can slightly increase the risk of miscarriage, and it can slightly increase the risk of premature labour.

A cone biopsy also does this but more, it’s more likely to than, than a loop excision. I think the important thing for women to recognise is that these abnormalities need to be treated. The vast majority of women go on to have successful pregnancies after this treatment. And I think it’s just important to let your obstetrician know when you are pregnant that you’ve been treated, so they can monitor the cervix and intervene if necessary.

He [consultant] said obviously it could mean that I was more likely to have a miscarriage, but he couldn’t say either way really. I was more pleased obviously to have it removed, that was my main concern really. That had to be out. I think because I’d had a previous miscarriage it frightened me a bit more because it’s a scary thing to go through at any time and I just thought could I go through that again’?

I think they were the main important questions and, in the end, I did have to go and see my doctors and speak to them about it, because it was, to my GP because it was worrying me.

And did you feel reassured afterwards?

I did. She said the chances are very slim, and as it was such a small amount that was removed. But obviously she understood my concerns, but then I think when I came away I had to start analysing things for myself. And I think the most important thing was that this had been removed. That was what was more important, my health first. Yes I would love more children, but paramount priority is myself, my husband and my son.

If CIN3 has been completely treated, in other words the abnormality has been removed in it’s entirety with a zone of long 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 [cervical] 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.

We know that CIN is caused by the wart virus, the Human Papilloma Virus. The high risk Human Papilloma Virus. Now, this is not the same virus that causes genital warts. it’s a slightly different virus; it’s of the same family. It doesn’t cause any visible abnormalities. The thing with high risk Human Papilloma Virus is a lot of people are exposed to it. But most people manage to clear it with their immune system.

The things that increase the risk of CIN or cervical cancer is smoking, because that affects the immune system in the cervix and leads the Human Papilloma Virus to persist and cause the abnormal cell changes which can then develop into CIN3 or cervical cancer.

So if people want to know what they can do to protect themselves, I think stopping smoking is the single most important thing.

Does diet or anything else come into it? Women often ask can I make changes to my diet, or anything else?

I think there’s no direct evidence, but certainly a healthy diet just helps to keep you well, helps to keep your immune system in good check and therefore it’s just generally good advice. You know, alcohol in moderation, no smoking and a good healthy diet. And going for your screening when you’re called.

I think having recommended websites on the information would be amazing because it’s just naive to think that people aren’t going to go and search out information their selves. Like nowadays I would think the first thing anybody would do is go home and they’ll start Googling it.

And to make sure that people are going to the right places, rather than the scary places on the internet. And that’s the other thing, like I mean I mentioned two websites I found useful, like Jos Trust and Cancer UK, and I have spent weeks on the internet looking up CIN3, and they’re the two positive ones that come to mind.

So I mean I think, you know, to have a list of sort of like, a fair wad of useful websites. And, like I say, not just necessarily on CIN3, but also on things like general anaesthetic, like all of the things that you’re going to have. And, you know, being in hospital. I’d never been in hospital before. And that was really scary. I think I was the youngest person in my hospital by about 100 years, so just all information on everything. Just as much as you give people to read, to stop them looking in the wrong places, which they will find if you go on the internet for more than ten minutes.