Katie - Interview 15

Age at interview: 28

Age at diagnosis: 28

Brief Outline: Katie delayed going for cervical screening but, because she'd had some symptoms, she felt that something was probably wrong. She was diagnosed with CIN3 in 2009, aged 28, and treated by cone biopsy.

Background: Katie is a single sales executive and has a daughter Ethnic background / nationality' White British

More about me...

Katie said she had her last smear test when she had the coil fitted and, when invited for routine cervical screening, delayed going and was sent several reminders. Her boyfriend read the accompanying leaflet with one of these reminders and pointed out that she had been having some of the symptoms mentioned in it, including pain during sex and bleeding between periods.

Katie said she kept putting off going for cervical screening but, when she read an article about cervical cancer while on holiday, she got very upset and was determined to attend after the holiday. The reality TV star, Jade Goody, was often in the news at this time and Katie said there were many stories in the media about her experience.

Two weeks after her smear test, Katie received a call from her doctor whilst at work. He told her that her results showed she had pre-cancerous cells. She said, ‘I was absolutely distraught. I just felt numb and just, you know, I was just crying and crying.’ Katie went straight to the local surgery with her mother, and the doctor explained that she had CIN3.

Katie had private medical insurance and made an appointment the following day with a consultant who had treated a friend of her mothers for cervical cancer. At her first appointment, Katie had a colposcopy and the consultant confirmed that she had CIN3. In her second appointment, she was given a cone biopsy under general anaesthetic. She said she found the results confusing because she was told that, although the CIN3 had been removed, there may be more abnormal cells which could show up at her follow-up examination in four months.

After treatment, Katie took a week off work. Back at work, she had some abnormal bleeding and went back to see her consultant, who removed her coil. Katie said that at or after her first follow-up appointment, she could need further treatment. Despite this and throughout the whole experience, she has tried to be as positive as possible. Her mum and partner had been supportive, as well as Jo’s Cervical Cancer Trust, a website for women affected by cervical conditions (www.jotrust.co.uk).

Katie was a bit tearful before surgery, but the next thing she knew the operation was over. She...

The nurse came round and just sort of explained what was going to happen. They was going to, like the consultant would be round in a bit, and the anaesthetist would be round to talk me through what each of them would be doing.

Then she gave me these big, measured me up to put these stockings. And she came back and put these stockings on. Then I had to get changed. I was a bit nervous, because I was actually just starting my period this day. And I’d e-mailed him a couple of days before saying I might be starting my period soon, is that a problem? And he said as long as it’s not a problem for me, and it wasn’t because I’d thought, I would rather, although it’s not ideal, I’d rather get it over and done with than have to wait another week.
 
So yeah, then he came round to see me, just explained I had to sign some paperwork and stuff. And then the anaesthetist came round to introduce himself. And then a little while later, then they gave me the gown and stuff that I had to get changed into. My mum stayed with me and a little while later they came back and said, “Right, we’re taking you down.” So my mum went and said my boyfriend was going to come back, asked roughly what time they’d, I’d be finished. They said it doesn’t take very long, so she said she was going to ring my boyfriend and tell him to bring me back, to come up.
 
Then they took me down. As I was in the room though, there was the anaesthetist and another lady talking to me. They were lovely. But I was getting a bit teary, and they’d asked me these questions and stuff. It wasn’t how I remember being knocked out actually. It was like feeling a bit drunk first of all and then lasted a few minutes and then the next thing I know, I remember someone trying to wake me up, and then I was going back to sleep again.

And then the next thing I remember there was them then passing me from the bed that they were carrying me on to my bed, and me thinking “Is my boyfriend here yet?” And he wasn’t, because it wasn’t that long after, but it seemed like quite a long time. And then he got there and he was talking to me, and I was like, “Don’t talk to me, I’m tired.” And that was it really. And then eventually I sort of woke up and then my mum come back, and she come with my daughter as well, to pick me up. And then they took me home and we just came here and I just zonked out on the sofa.

When Katie saw the doctor about her results, she was unsure whether all the abnormal cells had...

The consultant said that he would call me by Thursday or Friday, once the pathology come back, and he would know then if there was any cancer. He e-mailed me Friday morning and said there was no evidence of there being cancer. So I thought, “Oh that’s great.” So I had to go back for my follow up the following Friday just to make sure that everything was okay. And then I was a little bit shocked then because I thought it was just going to be a formality. He’d say, “Right, okay great. Come back in four months,” you know, “And then we’ll check you,” you know, “make sure that everything’s still as it is.”

But then he started talking about that one side of it, the pathology was fine. But the other side was quite close. The language I don’t really understand it too thoroughly. But then he also said that I might, there may be some more cells further up the canal, like leading up to the womb.

And so when I come back in four months he’s going to have to look there. Now I’m still not really sure if that is something they do for everyone or if it’s based on the results of the pathology. I’m not too sure, and then he was then showing me that I could have some more cells in the lining of the womb, and worst case scenario means that I might have to have a hysterectomy.

So, I mean, and that really is as far as it’s got so far, everything. It’s fine. Every now and again I’ll have a bad day and I’ll start feeling sorry for myself, and thinking, “Oh my God.” You think the worst case scenario. But no, I mean I don’t, I’m alright I think overall about it really.

Jo's Cervical Cancer Trust website was helpful and supportive but reading too many negative experiences was worrying. Katie preferred to go on only occasionally and read positive stories.

I read some of the things that they’d put on there [Jo’s Cervical Cancer Trust website www.jotrust.co.uk], and all, everyone was really lovely and supportive and everything else. So I put a post on there and everyone just, people would reply back to you straight away. And it was all really lovely. Because I’ve stopped going on there now because it’s just, although as lovely as it was, and it was good because you did get some questions answered that you might not have, I might not have thought to ask the consultant. Or he would be asking me in medical, you know, in a professional way. It was good because you, I was as, actually emotional from people that had actually been there at the time and they know what you’re going through. Whereas doctors don’t actually know what you’re going through. They only, a bit like me dealing with a piece of paperwork, that’s kind of what they’re like with me, you know.

So it was really good but I stopped going on there now because I did find after, as lovely as it was, I did find that keep going through and reading what other people were going through, it was making me think worst case scenario a lot more of the time. Where you’d read someone had been in your situation and then something else happens, and then you think, “Oh my God, that could happen to me.” Purely from a purely selfish point of view really, so no I don’t really look on there too much at the moment. Every now and again I will just to make sure that, you know, it’s nice to hear good stories and stuff like that, that’s nice.

Katie was worried about having sex after healing and said it felt like starting all over again....

I suppose from that point of view, it probably has changed me a little bit from that perspective. I was worried for ages afterwards, for about two or three weeks anyway, and the first time we did [have sex] I was drunk. We probably, it was like having to start all over again really. I had to get a little bit tipsy first of all, and then that was okay.

I didn’t actually go back to see him [doctor] actually because it was after my first time of having sex that it, and then the bleeding started again. That was a bit nerve wracking. And I did, I think, and I still, I’m a little bit like it now but, because I think it’s just, you’re so much more conscious of what’s going on down there now, you know. I’ve seen diagrams of what little bits are and where they are, and stuff like that. So it does feel a bit different now. But I think it’s getting better as time goes on.

Katie has made lots of plans but, if abnormal cells are found at follow-up, these plans will be...

What would you say to anybody who’s thinking, “Oh should I go or should I leave it?”

Well do you know what? I can actually see now, and I mean I’ll never be, after this, my boyfriend won’t let me, but I can see now why, say for example, Jade Goody got to where she did because now I kind of think I’m kind of, but I’m really dreading my four month thing [first follow-up appointment], because now I feel okay.

I feel perfectly okay and I almost feel like what happened to me happened to somebody else. It doesn’t actually feel like it’s happened to me. And I just think, in a way, I don’t really want to go into the hospital in June because I’m going on holiday in July and I’ve got some other stuff to do in August. And I think, “God if he tells me that it’s not alright, then that’s going to mess all my plans up again and I’m going, it’s going to basically put me back to square one.” But probably be a little bit worse because like the next stage, it can then try and it can affect fertility.

So it’s actually going to be even worse than the first time around if he says that. So, “Oh I might go in July.” And I know, I’m not going to because I can’t, but I can see how people put if off. And the thing is, the only thing that I can say is, whether you’re going to know about it at some point. Okay, if you’ve got something, the earlier you know about it, the sooner something can be done about it and the less tragic it’s going to be.

Katie advises women to talk about CIN3 because it raises awareness and can be comforting - you...

Talk to as many people as you can. Because one, it creates awareness of it. You know, I’ve not been, that’s why, as I say, everyone at work knows because I have not tried to hide it. Because I think the more people that know about it, even the guys, if it means that their girlfriend hasn’t been for a smear, just by telling them might push them on to do it. All of my friends now have gone and had smears off the back of this.

Talk to as many people as you can because, one, you’re going to be doing good for the cause, and secondly you’ll pick more and more stories of people who know people who know people that have had it done. And actual, you know, real stories I think that will probably make you feel better as well, and it’s a bit more comforting that way as well.

The doctor gave Katie lots of information and told her about the solutions he would need to put...

He [consultant] explained that he was going to have to do a colposcopy. I mean he was really good, he took me round the, it was all in the same room but behind a curtain. And he showed me, you know, this is this solution, and this is this solution, and I’m going to use this and paint this on. And really thorough he was, really good. And then when it was time to do the colposcopy, he called a nurse in and she came up my end and was just holding my hand, I think, because I was crying again.

But no, he was really good. Although I didn’t quite get everything that he was talking about. But I think it was just because it was something that was so new, like anything really when you do take in so much information, you don’t get it all at one time anyway.

To be honest with you, I don’t think it’s any, it didn’t really feel any different to having a smear done. Apart from the fact that it might be slightly longer, not, you know by a minute or something I think really. I mean to me, you’re having to lay there with, you know, with no dignity while somebody is down there, feeling about inside. It’s no different at all I don’t think.

So it didn’t last very long? It, you know, how long was the whole appointment that day?

I don’t really know. The whole thing probably about 25 minutes I suppose. Not that long really, maybe half an hour.