Paula - Interview 35

Age at interview: 32

Age at diagnosis: 31

Brief Outline: Paula had CIN3 and high grade CGIN in 2007. Lletz treatment and a cone biopsy successfully removed the abnormal cells. Her colposcopy results in April 2008 were normal.

Background: Paula is an Office Manager. She is divorced with 2 children aged 8 and 6. Ethnic background/nationality' White British.

More about me...

Paula had normal cervical screening test results up until August 2007, when her test result showed severe dyskariosis. She was referred for colposcopy and given Lletz treatment to remove the abnormal cells. A biopsy was taken which showed she had CIN3 and high grade CGIN. During the Lletz treatment, the doctors were unable to remove all of the abnormal cells, so she was booked for a cone biopsy a few weeks later. In October 2007, Paula had a cone biopsy, under general anaesthetic, which successfully removed the remainder of her abnormal cells. Her 6 month check up at the colposcopy clinic in April was normal. In October she will be having another 6 month check up.

 

Although the treatments were unpleasant, she did not find any of them painful. The hardest thing for her was the waiting times at each stage, waiting for results and waiting for treatments, and also the worry that her abnormal cells might develop in to cancer.

 

She is very relieved that the cervical screening programme is in place because it prevented her from developing cervical cancer. She urges all women to go for regular cervical screening.

The nurse told Paula that liquid-based cytology would provide a clearer test result.

When I had my, just my first general smear it was just the conventional smear with the glass and the spatula. When I went back to the colposcopy clinic it was the liquid based one and I didn’t notice any difference. It didn’t feel any different at all. The only time I realised there was anything different was when she actually popped the thing in the liquid rather than putting it on the slide. So as far as feeling it is concerned it didn’t feel any different. But I did ask the nurse why it was different and she just said, “Actually it makes it much, much clearer to read the tests.” And she said, “Especially in my case with me have the CGIN cells. It would be really good for them to get a good clear indication, a good clear smear test result from it.”

Waiting times in between appointments and for results was one of the hardest things to deal with.

I think one of the worst things is the waiting times in between everything. So you get your letter saying you have got something wrong with you. You have got to go in. So you have got to wait for them few weeks to go in. Then you go in and they take a biopsy. Then you have to wait for the results of that. So, you go through another week where you are waiting for the results. And then I was told that, you know, I had to have to more treatment, so I then had to wait for that and then you have the treatment and then you have to wait again for the results of that to confirm that it was only at the stage that they said it was.

 

And then you get through all that and you are like, ‘oh my goodness thank goodness it is all over.’ I haven’t got to worry about it all now for another six months. And then you get to kind of like February, I got to February, March of this year and I started to think I have got to go back for my appointment again in a few weeks time. So you start worrying again about that.

 

And then you have a smear test and again you have to wait again for the results of that and I think lots of people have said that the worst part is the waiting. And you know, the periods in between when you are waiting is when you kind of just think, well is everything okay and why has it happened. And you know, it can get really difficult. But the worry and the waiting is definitely, for me, was the worst part. The mental part was a lot worse then actually going through the physical procedures of having the colposcopy done, having the LLETZ, having the cone biopsy done. Even I know there is so many people that don’t like going to have smear tests and that all pales into significance when you are just waiting for results. That is the hardest, hardest thing.

Talking to the colposcopy nurse on the telephone reassured Paula while she was waiting for her colposcopy appointment.

I just went for my routine smear test in July last year. And then about four weeks after I had my smear test, I had a letter come through which said I had severe dyskaryosis. I didn’t know what that meant at the time. But I was obviously worried at what that meant, because there was a leaflet in there with it and just sort of said that there was some cell changes and they needed to have a closer look at what the changes were. So they invited me to Colposcopy, which I think, the appointment was about two or three weeks after I had the letter.

 

So I went to the Colposcopy clinic. Prior to going to the Colposcopy clinic I was really, really worried about what was going to happen and I was worried about the whole procedure because there was a leaflet in there saying they might do treatment there and then, if they find any abnormal cells.

 

So I actually phoned the Colposcopy nurse at the hospital before I went and she was really good. She had a chat with me on the phone. Told me exactly what was going to happen if they found the cells and how they would deal with it. So I felt a little bit more reassured after speaking to her, but I was very frightened at the time.

Paula would have liked the information leaflets to be less matter of fact and include more detail about the procedure.

What about the Department of Health information that you were given with your abnormal smear result, and then going to Colposcopy. What has that been like?

 

I found it very vague. Not informative, very just, there wasn’t enough of it. And what I was actually given. I had my smear test letter that came and said you have got severe dyskaryosis. There was a photocopied leaflet in with it, which must have been photocopied for about ten years because it was sort of skew whiff on the page. It was all quite difficult to read and the whole thing was just very matter of fact, ‘you have abnormal cells’, ‘you have been invited to colposcopy and this might happen or that might happen’.

 

It did say on there you haven’t got cancer. I think a lot of people, the first thing they can think of is, ‘oh my goodness, have I got cancer?’ It did say, you know, you have got pre cancerous changes that if left could progress to cancer in years to come. It did say that and it was sort of quite reassuring as in that information.

 

But as to the actual procedure and what was going to happen, it was very, very vague. And I think it could have done with a bit more of a questions and answers, frequently asked questions type thing on there. Just a bit more real. It was all very medical and so yes, I wasn’t that impressed with the information I was given.

 

What sort of things would you have wanted to know?

 

I wanted to know things like, well if they are going to do this treatment, and they are going to put this wire loop through my cervix, is it going to hurt? Are they going to anaesthetise me? Things like that. That wasn’t in there. So there was nothing of the procedure on the leaflet at all. So it was just a basic sort of overview of what they had found and what they were going to do. But they actually didn’t tell us, didn’t say what they were going to do, in any particular detail. And I think I would have liked to have seen more of that. And just sort of more even some support websites or something like that. If they had just put a few links on there, that if you wanted to go and search it further or if you wanted more information you could go here. There was nothing like that on there either. It was just, as I say a page that was very vague and lacked any kind of useful content really.  

Paula used the internet to find information and she spoke to other women in the forums on Jo's Cervical Cancer Trust.

I searched the Internet just everywhere. I Googled things. I found a lot of American sites that were kind of a little bit inaccurate and a bit scary, some of the stories that you read. And there is a lot of information there about cervical cancer. I think there is limited stuff on pre cancer, pre cancer changes. But yes, I did search, and I did find some useful stuff. And particularly Jo’s Trust and all the things that were there. But yes, I did. I did look on the Internet quite a lot.

 

Okay. What is Jo’s Trust?

 

Jo’s Trust is a cervical cancer charity. It’s a big support network for women who have been through, you know, the most, mildest cell changes through to yes, advanced cervical cancer. And it is just a great place where you can go on there and you can meet other women and talk to other women about their experiences. And if you have got any little questions that might seem just really little to anybody else. It might be something that is really niggling you, and you can just go on and post a question up and ask for advice from people. And it is just nice to have that network, that support network there that they can give you a bit of assurance, and just make you feel not so alone in what you are going through.

 

And did you feel alone at any point?

 

I didn’t, I did feel like, I think I felt a little bit like everybody else in my world, all my friends and family. Everyone was getting on with things quite normally and they didn’t really, obviously they were worried about me, but it wasn’t an impact on them as big as it was having on me. So I think sometimes when your mind goes into overdrive and you just think, “oh I just need to talk to somebody about this”, it was difficult with family and friends. 1) you really don’t really want to keep going on about it, 2) You don’t want to worry anybody about it. And it is nice to have the support network from the Internet. So you can just feel a little bit more, like you are not alone, and you know there is a lot of support out there and there is a lot of people who actually understand what you are going through.

 

 

Paula didn't feel any discomfort when she was given the local anaesthetic in her cervix during LLETZ treatment.

And I went into the clinic, the Colposcopy Clinic and what they do is they highlight the cells with a solution and any abnormal cells turn white or they turn a different colour, so they can see. And you can see it all on the screen while they are doing it as well. So she showed me on the screen. I had this big mass of white cells.

 

So what they did there and then was they used, they did a treatment called LLETZ and it’s basically they pass a hot wire loop through your cervix to remove the abnormal cells. It did sound quite scary, but it is not. It’s, you actually don’t feel it because you get anaesthetised before. They just pop an injection into your cervix, which you don’t feel either. I was really worried about that, I thought I might feel that. But I didn’t feel that at all.

 

And she sort of said, “Well I’ve done the, I’ve done the needle. Did you feel it?” I was like, “No, I didn’t feel a thing.”

 

So they did the treatment there and then and it was pain free. I will say it was pain free. I didn’t feel a thing. I think the worst thing is just having your legs up on the stirrups and having to be in that uncomfortable position. I found that the worst part about the whole treatment.

 

So she did the LLETZ treatment, but then she found some cells were going higher up the cervix and she couldn’t get them, at the clinic that day, under local anaesthetic. So what she did was took some biopsies, sent them away and she made an appointment for me to go back and see the consultant.

 

I went back to the consultant a week later and the biopsies had come back that I had CIN3, CIN 3, which is the severest form of cell change before they go to cancer. So happily for me it was caught early.

Paula had an infection after her LLETZ treatment which cleared up quickly with antibiotics.

I had minimal bleeding after the LLETZ and periods were a little bit up and down and I did actually have, this was another thing as well, I noticed after about a week a funny smell. And I was very concerned about that. Totally embarrassed to ask anybody about it, because you just think, well what’s going on? And I spoke to some of the girls from Jo’s, before my doctor, to go and get some reassurance and they all said, “Oh it sounds like you have got an infection. It is really, really common after you have a LLETZ treatment.

 

So I went to the doctor, on the advice of the girls from Jo’s, I went to the doctor’s and the doctors took a swab and they said, “Yes, you have got an infection. And it was just a course of antibiotics and it cleared it, it literally cleared it up within about two days.” That was probably about the only complication I had after. My bleeding was minimal, the pain after was minimal, nothing worse than a period pain, a very mild period pain.

 

So I think for me, the worse thing for me was the infection following the LLETZ, but I think that is quite common. It can happen.

Strapline' Paula had an infection after her LLETZ treatment which cleared up quickly with antiobiotics.

Key words' LLETZ, infection, bleeding, diathermy loop excision

Paula had a cone biopsy as a day patient which was very straightforward. She felt weak for a few days afterwards.

It was just a day procedure. I went in, in the morning. I was actually pushed back. I was meant to be having the procedure done in the morning but I was actually pushed back to the end and I didn’t go in, I went down to surgery at about quarter to five and then I was home by quarter to nine that night. So you are not out for very long. I think they put you out for about twenty minutes if that, and then basically what they do. It is the same as the LLETZ, but they take a much larger part of your cervix away, obviously higher up in the cervix so that they can check all the cells, higher up as well.

 

So yes, it was very straightforward, into hospital have it done. Go home. And they said to me, when I actually came from theatre, by the time you have been in recovery, and been brought back up to the ward, it must have been about 7 o’clock and they said, “You can’t go home. You need to stay in the night.” And I said, “Well I really, really don’t want to stay in. I was only meant to be here for a day procedure.” And they just said, “Well look, as long as you have something to eat, have a drink, go for a wee, you can go home.”

 

So I jumped out of bed, had a wee, had a sandwich and a cup of tea and went home [laughs].

 

Did they put packing in with the cone biopsy?

 

I didn’t have any packing. No, I know some women have that done, but I didn’t have anything. It was just totally straightforward.

 

So when you woke up. How did you feel when you came out of the anaesthetic?

 

Oh I was fine. Obviously I was a little bit groggy. I had some period pains and I was very weak, which I think was more from the general anaesthetic then anything. They gave me some painkillers and I kind of walked out the hospital quite, I couldn’t really go on a run or anything, but I walked out the hospital and I was fine. So there was no packing, there was nothing at all.

 

And the next day after that, what was that like?

 

I actually slept. I remember I got home about nine o’clock and I slept through until about one o’clock the next morning, I was so tired. I think I was drained as well from the worrying. Because you still worry about these things and I think that is one thing when you have these results, obviously your body has got to go through it physically. But you do go through it mentally as well. And that impact that that has is quite big really. And nobody mentions anything about, how you might be feeling and how your imagination can run wild with things.

 

And after my cone, I did sleep that weekend. I slept quite a lot and I was just kind of glad it was all over, well fingers crossed it was all over. But I was absolutely fine. I was just, just I think for a few days I was a bit weak. Just took some painkillers for a couple of days for the sort of pain, it was very minimal and I think I was back at work. [um] With the cone biopsy I was back at work within about, well it was the weekend and I went back to work on the Wednesday. So I had about four or five days off from the cone biopsy.

Paula was very scared and at times during treatment she worried that her abnormal cells might turn to cancer.

I was very scared. The time from sort of getting the smear result back, to then getting the all clear in the October. So it was probably like a two month turnaround from abnormal smear to LLETZ to cone, to it all okay. That two months was really hard, because my sister also had cervical cancer four years ago. She is absolutely fine now, she had a hysterectomy. Obviously because that happened to her and then I had the abnormal cells, I was very, just sort of oh, you know, the chances are it might be the same as what happened to my sister. But it wasn’t, it was fine. But it was very it was a really difficult time because you just find sometimes your mind goes on overdrive and you think oh what if it not just pre cancerous. What if it has gone further and it was a pretty difficult time. But as I say it was two months turnaround and happily it was all okay.

It's important that health professionals keep women informed during procedures and they are positive and reassuring.

I’ve spoken to people who have had really, really difficult times with consultants, doctors, nurses with their beside manner. Everybody understands and appreciates what a fabulous job they do, but I think some people feel like, because the doctors and nurses are doing this day in, day out, they sometimes forget how you’re feeling. That it is not a day in, day out occurrence for you. And you could be really upset. And lots of women actually can feel quite intimidated by doctors, and they don’t ask enough questions and it is only when they come out, they think ‘oh I wish I had done this and I wish I had done that’. So I think really with the health professionals I think it is just all about keeping the patient informed, telling them what is going on, and being positive with them and reassuring them. Because I think when I went in for my colposcopy, I had the colposcopy nurse, and I had another nurse there as well. And they were just fabulous. They didn’t stop chatting to me about things from the moment I got in, until the moment I left and it so took your mind off what was going on, and they were just so nice, and said, the nurse gave me her direct line and said, “If you need to phone me about anything, if you’ve got any questions.” And that was really nice for me because I walked away from there thinking, if there is anything I have forgotten to ask I know that it will be okay for me, to give them a ring and to find out some information.

 

So I think it is just basic, basic things like that, when we go in there we are so scared and of course we trust what they are doing. But sometimes it’s nice when they give you the time of day and they are reassuring.

Don't be scared of the procedures and get as much factual information as you can.

I think the main thing is just to remain as positive as possible about what’s happening and to just remain factual about what is happening to you and try and gather as much factual knowledge as you can, so you understand what is happening to you and why it is happening. And not to be scared of the procedures, because the procedures really aren’t a worry. Just to get through it. Talk to people wherever possible on different support networks if you can. And as I say just remain positive and just keep telling yourself, you know, that cervical cancer is actually quite rare and it is very unlikely that it is going to be anything more than pre cancerous changes.

Paula believes we are lucky to have cervical screening freely available and encourages others to go regularly for screening.

And I think the other thing is that in this country, we are so lucky that we have the screening in place, and to people, I know there is people, who are scared to go to smear tests and they have not been screened for years and years and years and years and years. And I think people should just be very aware that we have got this screening in place. It’s nothing to worry about when you go and have the procedures done. So I just say to people go and get your smears and then if there is anything wrong then there is lots and lots of help out there for you. And the medical profession are great. And they know what they are doing and they can sort you out. If everything is caught early and in time, then you will be okay.