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Debbie - Interview 12

Age at interview: 36
Age at diagnosis: 24
Brief Outline: Debbie was diagnosed with CIN3 three times, firstly when she was 24 and most recently in 2009, aged 36. She has been treated by LLETZ twice but was unsure what treatment she was given the third time, and would have liked more information about it.
Background: Debbie is a married airline crew member Ethnic background / nationality' White British

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In Scotland, Debbie had a few smear tests and, when she moved to England, she continued attending regularly. Around 1996, when she was 24, her results showed abnormalities and Debbie was referred to a colposcopy clinic, where she was diagnosed with CIN3 and treated by LLETZ.

At her follow-up appointment six months later, more CIN3 was found and Debbie was, again, treated by LLETZ. She said she needed to take a lot of time off work because she kept getting infections.

Debbie attended annual follow-up appointments at first and then went onto three yearly cervical screening on the NHS Cancer Screening Programme. In 2009, however, when she was 36, her results, again, showed abnormalities. At the colposcopy clinic, Debbie was told that, as well as CIN3, she could have ‘glandular extension’ but was given no information about what this was. Whilst waiting for her results, she feared the worst and worried that she might have cancer.

Debbie said that when she went for treatment, the consultant did not tell her what treatment she would be having, only that she did not have glandular extension. It was only when she received her results letter that she learnt she’d had a ‘loop cone biopsy’, but was unsure what this was or whether it was actually the treatment she’d been given.

Debbie was disappointed at the lack of information given to her by health professionals in 2009. When she had been diagnosed and treated twice before, she had received more helpful information and had felt happier with the care she had received. This time, Debbie said she got most of her information from the Jo’s Cervical Cancer Trust website (www.jotrust.co.uk) and particularly wanted information about the experiences of other women with CIN3.

Having had CIN3 three times, Debbie said she now worries about her next follow-up appointment and having a recurrence. She will have annual follow-up for the next ten years.

 

Debbie said her questions weren’t answered and she was given very little information. She is...

Debbie said her questions weren’t answered and she was given very little information. She is...

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I was listening to what they were talking about. When I was trying to ask questions about what they were talking about when he said, the doctor said , “Oh no, I don’t see anything.” They started having a conversation about that; I said “Oh sorry, what does that mean? You don’t see anything? What? Why?” And he said, “Oh I’m just going to go ahead and do the treatment.” I said, “Wait a minute, why are you going to go ahead and do the treatment if you can’t see anything?” But I wasn’t really spoken to about it.

And did he say what treatment he was going to do?

No. No, he didn’t. He just said that he’d have to remove it and the only time he stopped was when he said, “Right, we’re going to go ahead and do the treatment.” And he said, “Now you won’t be able to fly for four weeks,” as he was about to do the treatment. And I said, “Wait a minute, wait a minute, I fly for a living.” I said, you know, “Are you telling me now…?” Because I was under the impression that perhaps I’d have to have a few days off work, and then I’d be okay, and this is what I’d told work. I’d said there’s a chance I’m going to be off for a few days, not a month. I hadn’t warned them that it might be a month.

And he said, “Oh do you want me to stop then? Do you not want me to do the treatment?” But at that point with your legs in stirrups, and nurses everywhere, it’s a bit difficult to say, “Oh well I need time to think about this.” So I said, “Well no, if it needs to be done then just go ahead.” But that was it, there was, afterwards he basically just told me the results would be available in a couple of weeks, and that they would write to me. I said, “Well, is that what I do then, do I just wait for you to contact me?” And he said, “Yes, yes we’ll be in touch.”

Did you know at this point what treatment he was…?

No. No I never, I still don’t know now. I still don’t know because when I phoned the, I spoke to the receptionist initially, who said, “Oh no, your results won’t be in yet.” And she phoned me back about five minutes later and said, “Oh, no they are in.” She said, “They are here.” She said, “I’ll read them out to you.” But all she said was the treatment had been successful, that it was CIN3, and that they have clear margins. And that I’d have to see my GP for a smear in six months.

But when the letter actually came through it was entitled Loop Cone Biopsy. And I still really don’t understand that. But I’m not terribly concerned that I don’t understand it because they’ve obviously got it all. But I still am a bit confused at the difference between what the cone biopsy is, and what the LLETZ treatment is. Because this seems to be an amalgamation of both of them. So I don’t know, and I’ll just leave it now.

 

Debbie feels her husband was supportive in his own way but didn’t really understand what she was...

Debbie feels her husband was supportive in his own way but didn’t really understand what she was...

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My husband didn’t really understand it actually. He’s very much of the ignore it and it’ll go away school of thinking. So the less you know about something, the better. And it’s not going to happen. So I think he found it quite difficult to deal with me with my worries about, “My goodness why has this come back for a third time?” Which was another question I asked the consultant. I said, “Why has it come back?” And I think it’s quite unusual to come back the first time, but to come back twice. And he said, “Oh we don’t know, it just happens.” So I couldn’t really explain.

My mother-in-law is a nurse, so she’s has no sympathy for anyone [laughs]! She was lovely, she gathered all these leaflets. The whole family, the whole side of their family is very stiff upper lip, lets not talk about it. So there wasn’t a lot of talking about it. But she did gather some leaflets from her surgery to give to me. Which was very thoughtful. Although I did explain I have been through it before, I do understand. But I find that actually I was explaining it to her, a lot of what was happening, that she didn’t really understand.

So, yeah, but that was, I think that was more, I spoke to her in order that she could speak to her son, because I’d said I don’t think my husband’s very happy talking to me about it and he feels a bit that he shouldn’t really talk about it. So I asked that she would maybe talk to him about it, so he would have a better understanding. Because every time I tried to explain it to him, I could see it just wasn’t going in. It wasn’t registering with him.

I mean he was very concerned; he was very good, and very supportive in his own way. And that’s it really. I don’t think there’s, I don’t think I was particularly supporting anyone else, and I do think my husband did try to support me but perhaps without knowing what he was doing or why he was doing it.

 

Debbie advises talking to your GP and getting information from a reliable source. The internet...

Debbie advises talking to your GP and getting information from a reliable source. The internet...

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I think the best advice I would give anyone is to talk to your GP, if they’re approachable. Jo’s Cervical Cancer Trust website fabulous, but don’t go any further. Don’t go onto Google; don’t start looking at all these websites because you’ll end up scaring yourself to death. It’s just, the articles aren’t always accurate, and you read so much. A little bit of knowledge is such a dangerous thing and you’d end up a nervous basket case if you believed everything that you read. So I wouldn’t go any further than that. I went onto Google. I looked at all these websites, and I had myself in a coffin within six months, which is ridiculous. So get accurate information and speak to people who actually know what they’re talking about.

 

Debbie had a reaction to the local anaesthetic on two occasions but, this time, was left on her...

Debbie had a reaction to the local anaesthetic on two occasions but, this time, was left on her...

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It must have been my second, maybe second or third routine three yearly smear. No reason to suspect there was anything at all. And it came back there was abnormalities. So
referred for colposcopy. I’m thinking ‘97, where they did loop diathermy treatment there and then, at the time.

I don’t remember a lot about it except they said it was quite a large area. So that was that. Then six month check up, which I seem to, I think was another colposcopy. I don’t know why I’m thinking, but it might not have been, it might have been a smear. And they’d recurred. And they said that possibly they hadn’t removed them all, although it had come back with clear margins when the results came through. The chap I saw at the time said that he thought perhaps he’d maybe missed a bit. So they did another treatment.

But I do remember having an awful lot of time off work, because I kept getting infections. Constantly. So basically for about 8 months I was on and off antibiotics and in and out to the GP. But after the second treatment, that came back with clear margins again. I had another six monthly check up, which came back fine, okay. So I went onto yearly smears after that for five years, until I went into the three yearly programme again.

And then it all happened again. So that was this year, December. I had one clear smear, after the, when I went back onto three yearly smears. Then I went for another one in December, which I got a letter from my GP saying that they’d found changes which mirrored the results that I’d had previously on the initial that came back abnormal. Which is all it really said, and said that she’d refer me to the colposcopy.

When I had the treatment the first time when I was in [Scotland], about twelve years
ago. I did feel at the time that every step of the way I knew what was happening. And I felt that the communication was much better and I felt the after care was much better.

After the second loop diathermy treatment that I had, I had a bit of a reaction to the anaesthetic, the adrenaline, which I hadn’t had the first time so I got a bit confused about why I was suddenly shaking like a leaf and seemed to not be able to stop. And the nurse was fantastic, really, really good. Let me stay where I was for a while, and then took me through to another room and sat with me and chatted about what was happening, and why it was happening. Got me a cup of tea, and just had a general chat, which was lovely.

This time round I mentioned that this had happened previously, and they said, “Oh that’s just the anaesthetic, that’s nothing to worry about.” And it did happen again. But I was basically just left. I was left and they went off and did their thing. And then came back and said, “Alright, you’re free to go.” And I knew as I came out there was a waiting room of people waiting to come in.

No conversation afterwards with the nurse?

No, they weren’t, they left me to get dressed. And that was it. They had a conversation amongst themselves about what had happened. I didn’t really feel, yeah I didn’t really feel at all that they were looking at me as a person. It felt more that I was a piece of meat coming in, have a bit removed, and sent off again and wait for the next one to come in. And they were pleasant people. I didn’t have any problem with that, but I just felt yeah, very professional, but not particularly caring or approachable.

 

Debbie’s family were extremely happy when she was given clear results but she felt miserable. She...

Debbie’s family were extremely happy when she was given clear results but she felt miserable. She...

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The results came through about two and a half weeks later. And that’s when I burst into tears, and I just felt like all of a sudden everybody else, you know my family and my husband, were jumping for joy that it was all clear, and I wasn’t. I don’t know, it was, and I burst into tears, and I was absolutely and utterly miserable. Which I couldn’t understand for the life of me why, everybody else was happy and I should’ve been, and I wasn’t. But I think that’s quite normal, having looked into it.

And having been in quite stressful, traumatic situations in the past, I seem to always react the same way. You keep it together and you’re absolutely fine until the pressure’s off, and then you go to pieces. That’s normally 24 hours or so. But that was the hardest thing for everyone else to understand. People around me couldn’t understand why I was so emotional and so upset when it was good news. And to this day they still don’t understand why that is.

 

Debbie was given very little information at colposcopy and felt rushed. During treatment, the...

Debbie was given very little information at colposcopy and felt rushed. During treatment, the...

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That really frightened me when I went in and had the initial chat with the chap at the colposcopy clinic. And he was so matter of fact about it, and didn’t really explain. It seemed quite rushed. It seemed that it was, there was such a big waiting room with people that were in and out, and I did feel a bit like I was on a conveyor belt, and he didn’t really have time to explain anything to me.

At the time there was the nurse, but there was also a practice nurse who was observing, and it seemed, although she was very nice, and the nurse was very nice, it did seem that it was all conversation between the three of them. I was a bit like the subject that was left in the middle. They were very pleasant, however they were talking amongst themselves. It seems, the focus seemed to be on explaining to this observing nurse what was going on, without actually addressing me.

So I was listening to what they were talking about. When I was trying to ask questions about what they were talking about when he said, the doctor said , “Oh no, I don’t see anything.” They started having a conversation about that; I said “Oh sorry, what does that mean? You don’t see anything? What? Why?” And he said, “Oh I’m just going to go ahead and do the treatment.” I said, “Wait a minute, why are you going to go ahead and do the treatment if you can’t see anything?” But I wasn’t really spoken to about it.

I think he knew that I was, well he knew I was confused because I told him I was confused, and said, “I really don’t understand what you’re telling me.” Had he taken time then to explain what he meant, that might have put my mind at ease. Or had he just not said anything, and just said, “Yeah, we’ll investigate and see what there is.” Because as it turned out there wasn’t anything there anyway. So I was possibly needlessly worried about something that wasn’t there.

If there was more information available about what he was talking about, because when he told me, and the words he used were, “Glandular Extension.” So the first thing I did when I got home was to go onto Google, which is the worst thing you could possibly do because, good grief, you come up with all sorts of nonsense. And that’s what I Googled and I couldn’t find anything. And then I found the website with this confidential medical panel, so I wrote to them.

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