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Susan - Interview 04

Age at interview: 31
Age at diagnosis: 25
Brief Outline: Susan was diagnosed with CIN 3 in 2004, aged 25, and again in 2006 after a follow-up examination. She had a LLETZ on both occasions and has been happy with the care and information she was given.
Background: Susan is a nurse specialist and lives with her partner Ethnic background / nationality' White British

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Susan always attended for cervical screening and, occasionally, had a repeat smear but there had never been a problem. In 2004, after a routine smear test, she was diagnosed with CIN 3, aged 25. She was referred to a colposcopy clinic and treated there and then by LLETZ. She said she was very happy with the care she received from doctors and nurses and with the information they gave her.

After treatment, Susan said she bled quite heavily for a week and felt tired. She had three follow-up examinations, one every six months, and then went onto annual appointments. In 2006, after a follow-up examination, more CIN 3 was found. Susan said she was surprised that it was CIN 3 again, rather than CIN 1 or CIN 2, and at how it could develop so quickly – her last test would have been only a year ago. Before going for treatment, she worried that, this time, she may need more drastic surgery, perhaps even a hysterectomy. The nurse and doctor reassured her, though, that that would not be necessary and, again, she was given a LLETZ. This time, she did not have heavy bleeding afterwards.

Susan had a few follow-up appointments at the hospital and now has annual smear tests at her GP’s surgery.

 

Susan got a letter telling her she had severe dyskaryosis or CIN3. She’d had repeat cervical...

Susan got a letter telling her she had severe dyskaryosis or CIN3. She’d had repeat cervical...

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I’ve been going for smears as and when advised really from probably the age of 25 I’d say. Maybe a bit before because I was 25 when I was first diagnosed. I think, looking back, I had had a few occasions where smears had come back with inadequate cells and I’d gone for repeat smears, but had never been concerned about that because they’d always come back as normal the second time.

 

So when I’d gone for my smear, I think I’d got a letter saying there was inadequate cells again. So I thought, “Okay, it’s a bit inconvenient but it’s just the same as before, obviously they haven’t got enough.” So I went for a repeat smear. I was on nights, working as a nurse at the time when I got the letter. So I didn’t actually open it until I’d got up, which was in the evening when I would be going to work.

 

And I looked at it, and scanned through it and it was saying that it was abnormal, bits were in bold text. And I skimmed to those bits that were saying severe dyskaryosis and CIN stage 3, and I didn’t really understand anything at the time. I didn’t know what it meant, but I knew I had to get to work, so just folded it up and put it in my bag, and thought, ‘Well I’ll deal with that later.’ I’ve got to get to work.

 

I settled all the children on the night shift and read them their stories. When the ward was quiet, that’s when I got the letter out again and had a look through it, and read it slowly and was wondering what did it mean and what was going to happen, and what would happen next? And….

 

Because this letter was just after a routine…?

Just a routine smear, yes. And normally you get a letter back that says everything’s okay, and I’d file it and you get on with your life.

And sometimes you’d had letters saying that there was an abnormal result, or not enough cells to…?

Yes that’s right.

And this one was different?

This one was different. It was saying that an abnormality had been picked up and that obviously I needed to do something about it.
 

The information Susan was sent put her mind at ease. She didn’t need any more but was given...

The information Susan was sent put her mind at ease. She didn’t need any more but was given...

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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.

 

It is important to go for cervical screening and treatment. The more relaxed you can be before...

It is important to go for cervical screening and treatment. The more relaxed you can be before...

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I think obviously it’s really important to go for your smears. Obviously if you’re going to have problems, then it’s better if they are picked up early. But I think in terms of the treatment, personally I would say it’s nowhere near as bad as you think it’s going to be. It’s not that dissimilar from having smear tests.

I think try and be relaxed in yourself. If you’re tense and you’re worried and you’re anxious, all your muscles are going to become tight and it’s probably going to be a more unpleasant experience for you. If you can relax and just try and think about something different, and be calm in your attitude, then things will be a lot better.

Ask questions. Don’t be afraid, don’t think they’re silly because everyone’s got questions and the nurses and doctors will have heard them before. They’re not going to laugh at you. They’re not going to talk about you behind your back. I think you really must be confident that you’ve asked all the questions that you’ve got. And don’t be afraid to use resources on the internet or things that are available to you. There’s lots of groups and support groups out there that can help you.

 

The doctor explained everything while Susan watched the procedure on the screen. The clinic...

The doctor explained everything while Susan watched the procedure on the screen. The clinic...

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The room was a lovely room. It was bright and sunny, and there was a doctor there and two nurses. And they had pictures on the walls, but also on the ceiling. So when you’re lying on the bed you could look up and it was lovely.

Was it kind of relaxing pictures?

Yes it was pictures that looked like Greece, with beautiful blue sunshine’s and nice apartments with terracotta pots with flowers. And you really, you could almost forget where you were. You just laid back and I think most women are quite used to having smears, so I was just telling myself it’s just another smear really. Okay I knew it was treatment but in terms of the invasiveness of it, it wasn’t anything too different from that.

Trying to think about how it all went. They put the speculum in and then they used a little bit of anaesthetic cream. And they explained that that might sting a little bit when they put it in, and it did sting a little bit but it wasn’t too uncomfortable. And it very, very quickly passed. And then I didn’t have any discomfort at all. Obviously I was aware that people were doing things but I couldn’t feel anything, so I was quite comfortable with that.

And did they explain exactly what they were going to do? And…

Yes, and they,

…what it was called?

Yes, the doctor was very good. She explained all the way through everything that she was doing, all the implements that she was using. There was a screen and she asked if I wanted to see what she was doing. Part of me thought no I don’t, but I think, like everybody, you’re quite curious, so I was watching what was happening.

And when she’d removed bits of tissue, she said would I like to see it. And I did, and it was a bit strange looking at things. But it was interesting just to see what was going on, and I felt assured that they had actually removed, the tissue that was not supposed to be there.

So how long did the whole appointment take?

It probably didn’t take much more than half an hour. We had a little chat first and the doctor explained what she was going to do, and we signed the consent form, and then we went and did the procedure.

 

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...

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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.

 

Susan, a nurse, coped well and appreciated the support she got from her partner. She knew where...

Susan, a nurse, coped well and appreciated the support she got from her partner. She knew where...

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I think I felt quite supported by my partner. We talked about what had happened, and laughed and joked about it, as we do. That’s very much how we deal with life. But I did feel supported, and I knew that if I wanted to talk to my colleagues at work they would be very, very supportive. And my family would’ve been. They were only a call away, so I knew that I had all the resources there. I also knew that I could tap into any counselling I needed too, from health clinics or via work. But at the time I was, I felt I was coping quite well, so I didn’t need to do that.

 

Susan bled heavily for about 8 days and wondered if this was normal. She carried on working but...

Susan bled heavily for about 8 days and wondered if this was normal. She carried on working but...

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After the appointment my partner and I walked home, and I remember feeling a little bit woozy but feeling quite happy because I knew that I was comfortable and wasn’t in pain. And I didn’t feel upset or depressed at all actually. I felt quite relieved that it was over and I knew that I’d done what needed to be done. So we went home and I planned to have the next day off work, which was quite nice, so I could just rest and relax.

I was told to expect some bleeding, perhaps a bit like a normal period, maybe a bit heavier, and that I had to use pads rather than tampons, which most girls wouldn’t like but you appreciate that that’s what you have to do. I had a good night, slept well.

The next day I woke up. I was in the bathroom brushing my teeth and I coughed. And this massive, massive plug of blood fell out and hit the floor. And I remember just the sound of it, this thud, and you looked down and I was like, “Okay. That’s not supposed to happen.” And I looked down, and I know things look more when they’re on the floor, so I knew it wasn’t hundreds of mls that I’d lost. But I was looking there thinking, “I know they say phone if you’ve got any concerns. Shall I phone? Or shouldn’t I?”

So I left it for a bit, and I didn’t phone in the end, but I did continue to bleed quite heavily for quite a few days. And it gets to the stage where you’re like, “Is this a heavy period or is this more?” And you’re never really quite sure, having never been through it before and I was working long shifts, on my feet. Quite active, and I was changing every hour, going through sanitary aids like there’s no tomorrow. And you think, this is a bit inconvenient now. And I was starting to get a bit tired and a bit probably anaemic I think, and a bit depressed and a bit weepy. And that’s when I think reality hit home, of what had happened to me really and that it was an invasive procedure. And I think sometimes you feel you need a bit of TLC I think. And looked after myself. I treated myself when I got in to a takeaway and a film and…

Were you still working every day? Long hours?

I was working. For about three or four days in a row, but looking forward to my time off and I knew that that would come to an end quite soon. And things got better. I’d made sure I took lots of iron and ate well, and slept and looked after myself. And things got better and then got back to normal.

That’s good. So how long did this bleeding carry on for?

It probably went on for maybe seven days in total. Seven or eight days, but it got lighter towards the end. So it was probably heavy for maybe four or five days, and then became a bit lighter and more manageable. And then tailed off.

 

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...

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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.

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