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Gillian - Interview 03

Age at interview: 30
Age at diagnosis: 27
Brief Outline: Gillian was diagnosed with CIN 3 in 2006, aged 27. She had a cone biopsy and would have liked more information before and during treatment.
Background: Ethnic background / nationality' White British

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Gillian had a couple of smear tests in Ireland and then moved to England in 2002. She didn’t attend regularly for cervical screening but, in 2006, when she went to see her GP for holiday vaccinations, she was also given a smear test. She’d had no symptoms but results showed abnormalities.

At this point, Gillian had never heard of CIN or colposcopy. She felt that her appointment at the colposcopy clinic was rushed. She was treated by cone biopsy under local anaesthetic but reacted to the anaesthetic – her body went into shock and started shaking. Gillian found the procedure painful and said she bled heavily afterwards for about a month. Because she was concerned, she went to Accident and Emergency, where she was treated but continued to bleed.

During her Christmas holidays, Gillian went back to Ireland to visit her family. There she made an appointment to see a doctor privately because she and her family were so concerned. She and her doctor wanted more information about her diagnosis and treatment so contacted her hospital in England. The information they received confirmed that she’d had CIN 2 and CIN 3 and that she’d had a cone biopsy.

Gillian felt that she had not been given enough information about the treatment she had been given. She would have liked more information before and during treatment, about treatment options and having children after treatment for CIN 3.

It took about one and a half years before Gillian stopped bleeding between periods after the initial treatment. She had follow-up appointments every six months to begin with. After having two clear smear tests, she went onto annual screening and will now have yearly follow-up for ten years. She continues to be seen by her doctor in Ireland for these appointments.

Gillian encourages other women to go for cervical screening and would like cervical screening in England to start before the age of 25.

 

Gillian had never heard of ‘CIN’ or ‘colposcopy’ before. She disliked having cervical screening...

Gillian had never heard of ‘CIN’ or ‘colposcopy’ before. She disliked having cervical screening...

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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.

 

Gillian didn’t know she’d had a cone biopsy until later. The appointment felt rushed and, because...

Gillian didn’t know she’d had a cone biopsy until later. The appointment felt rushed and, because...

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You mentioned that you wish you’d known what treatment you were having. You didn’t know it was a cone biopsy…

Yes. I think, for me, the biggest thing would be the choice had been taken away. I’d had the treatment and I had an operation before I even knew that, or consent had been given to have that. And for me what would be, but even then I wouldn’t have known what to do because I think if they’d stopped and said, “We can take a little bit of, your cells are looking like this, we can take a little bit away, or you can come back next week once we’ve got the results of this.” I think I maybe even then, at the time, if I’m honest, would have said, “Oh no, just go ahead with it now.” But I think I’d like, I would have liked the choice, and had maybe the two or three days away on my own to think about it. Whereas I think the fact, and then you can make that decision to say and go through with it then. But I think it was that I wasn’t given, explained what was happening properly and you sort of find these things out afterwards.

And it was all just done quickly on that one day, you were in and out within…?

I was in about half an hour, by the time I arrived in the queue, and then it’s all over and you don’t really know what’s gone on. It’s just very much like a meat market.

 

Gillian found the procedure very painful even after being given more local anaesthetic. Her body...

Gillian found the procedure very painful even after being given more local anaesthetic. Her body...

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I think then she [doctor] said she could see the presence of the cells, and she was going to do treatment there and then. So she then gave me four local anaesthetics, which you were told that your body might react uncomfortably to these anaesthetics. And my body went into shock. So what that meant was my body, the nurses were there at the same time with my hand, but my body just went into shaking, shaking, shaking. So I found that very distressing because I had no, it didn’t last long, it lasted about a minute or two minutes but it was very distressing.

Did you feel like you had no control?


I had no control over my body, and it just went into shock. And I hadn’t, and wasn’t able to stop that. Then she gave me the local anaesthetics, which were very painful. And then she said that that would stop me feeling any pain during the colposcopy. And that wasn’t the case at all. So I did feel a lot of pain. So she gave me another local anaesthetic, and they didn’t work either. So then she did the procedure, and she had a television beside me. But I remember thinking that was, but she must’ve been looking in the television at what she could see when she was doing the operation. And she removed the tissue and I remember at the time she said there was quite a large affected area. But it was very painful and then that was it, over really after that.

 

Gillian used to throw her cervical screening invitations away. The nurse persuaded her to have a...

Gillian used to throw her cervical screening invitations away. The nurse persuaded her to have a...

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It was only because the nurse badgered me to get a smear done that I would’ve got a smear test done. I wasn’t going to. And she was on at me every time. I think I was going to Thailand and I was getting some injections for a holiday and that’s why she said to me, “Well while you’re here, why don’t you just get this done. I’ve sent you a few letters and you’ve ignored them.” So I think then it was only because she was so relaxed about it and made it normal, that I did get it done.

And lots of women miss their smear tests or just put the appointment away.

Oh I just used to put them in the bin

But you’d been for a couple in Ireland?

Years ago yeah, when I was younger.

And then left it for quite a while?

And then left it. As soon as I came to England, that was the least priority, it just went in the bin. Which is silly now but that’s true, that’s what happened. And my friends have done the same thing. Lots of my friends have said, “Oh hearing what happened to you, that makes me, I must get booked in.” And I said, “But you said that a year ago.” And she still hasn’t. So it’s interesting I think, I don’t think people are still really taking it that seriously. Maybe the Jade Goody thing will make people really think. Apparently lots of women have booked appointments, which is great.

Well I’d definitely advise women to go for their smears regularly. I think it’s every two years you’re meant to go. But I’d definitely advise not to put things off just because they’re unpleasant. And I think that’s the problem is, because you avoid your smears, then something that’s probably easily treatable at the beginning could be avoided. And what’s very slightly unpleasant is nowhere near as unpleasant as if you leave it to a colposcopy stage. So I definitely would say the most important thing would be to go for smears regularly.

 

Gillian felt worried and upset before the colposcopy examination. The procedure was painless but...

Gillian felt worried and upset before the colposcopy examination. The procedure was painless but...

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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.

 

Gillian felt angry that she hadn’t been told about the risks of treatment on pregnancy before...

Gillian felt angry that she hadn’t been told about the risks of treatment on pregnancy before...

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Well there was things I found out, I was clueless to be honest. And I think it was more the things he [second consultant] was telling me, the more I spoke to him there was things that I didn’t realise that the colposcopy had done. So he said to me whenever I get pregnant I may well have to get a stitch put in because your cervix is the part of your body when you’re pregnant that is the muscle I think that holds, I think is that right? That holds your baby up.

If your cervix has been compromised, the integrity of it, in terms of the size of it or the strength of it, I think you may need to get stitches before you are pregnant to ensure that you don’t miscarry.

So I’d never heard that before. And that made me quite angry because I thought, what he’d said to me was, if you had quite a significant amount of your, you can take little bits of your cervix away first to determine whether you need to take away more. And I think because the lady who treated me initially had taken away more to err on the side of caution, at the initial colposcopy, that wasn’t necessarily needed.

 

Gillian received much more information about her treatment after she changed doctors. She would...

Gillian received much more information about her treatment after she changed doctors. She would...

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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.

 

Gillian’s new consultant gave her lots of information, which he got by writing to her first...

Gillian’s new consultant gave her lots of information, which he got by writing to her first...

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He [new consultant] helped me write a letter to the hospital with lots of questions about…. I hadn’t, he wanted the histology report and sort of explaining what the findings of the tests had been, and why so much of the cervix…. So in a further appointment, I think I had about six appointments with him in Ireland over the next six months. But once I was a bit better and had stopped bleeding, he measured and he actually found out that half of my cervix had been removed.

Did you stay in Ireland during that time, the six appointments?

No, I flew back to see him, and I had a lot of trust in him. And he put the whole thing right for me because he’d taken everything, all the concerns that I had seriously. He then measured the cervix, and a normal cervix I think is about four to four and a half centimetres, and I was two, or two and a half centimetres. And I think once the results came back from the hospital, what they confirmed was the presence of the CIN at the outside of the cervical canal, not necessarily as high up in the, you wouldn’t, not where you would have needed to remove that amount of tissue.

How was he so different to the other doctor?

He was fantastic. He was lovely. He spent a lot of time at the beginning just listening. And it was the first time in the process that anybody had spent any time listening. So I told him what had happened and what my worries were, that I was bleeding still, and that I’d been for a colposcopy. And it was then he said to me, “No, that’s not right.”

And I think all the worry that I’d had, that I was making a fuss or that maybe it was right and I was being, I felt silly and it’s so embarrassing anyway, to discuss it with so many different people. I think he was just so, he was very good and very, I could trust him immediately. And he didn’t dismiss everything and he actively sat and helped me work out all the things that we could do, and all the things that I needed to do. And he kept telling me not to worry. Not to worry at all. And within the next six months then we’d do a smear, but it would be with him, and I didn’t have to worry about going back to where it had happened. And I think all of those things just put me at ease.
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