Cervical abnormalities: CIN3 and CGIN

So you got that letter and it said that there wasn’t any cancer?

Said yeah, there was no signs, no signs yeah.

And did it say anything about what would happen next?

Yeah, it said I would get a letter for six months time to go back for a repeat smear test. And then

At the hospital?

Yes, at the hospital. Yeah. At the hospital, and then after that, if that was clear, what they would do was that you’d put you up on a yearly smear test at your GP’s. Yes.

So did you feel that it was clearly explained and…?

Not really. I felt a bit confused to be honest. Because I’d read other places that if you have a clear smear after six months of treatment, they’ll keep you on six monthly smears for another year. So maybe it varies from region to region.

But for me, it sort of, it does worry us because I would rather even know, as far as I can gather, it takes a long, long time for abnormal cells to reoccur or anything. I know in my own mind I would rather have had the opportunity, I would rather have another smear in six months time.

So six months then came?

Yes.

And you went back to the hospital?

Yeah, went back to the hospital, yeah.

And what happened in the follow up?

It was basically, it was very similar to the first appointment. But obviously went over my history that I’ve been treated for. I had a biopsy and the results came back normal. And she just explained that she was going to do a smear test and then that would get sent away. Then if it came back normal, then I would go onto yearly smears.

Everything was fine, and just once a year you just continued having regular screening?

Yes I do. I mean I actually go through, just through my regular GP, NHS GP practice, and I do their screening. So they’re obviously appraised, have all my notes and appraised of what I’ve been through, my history.

But I have been advised to go back to my original gynaecologist because the tests that they do would be more thorough and would cover the Papilloma Virus. Just to check if there’s any reoccurrence. So I was a bit surprised at that because I was sort of happily going along to just my NHS practice.

And who advised you to go back to the original consultant?

His secretary. Because she called me and said, “You haven’t been for eighteen months.” And I said, “Oh it’s okay, because I had my tests and everything’s fine.” And she said, “I recommend that you, that we also do it, absolutely fine to do that as well, but that we do it because it’s a more thorough examination.” Which I was a bit surprised at. And so I continue to go to both.

So you have two smears a year?

Yeah, really, yeah. Well certainly two every 18 months.

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.

And you’ve been fine since?

Fine. There’s been a couple of things, I mean obviously as far as the screening programme goes, I was screened I thought it was every year for 10 years, but I think it was every year for seven years. I found one last letter, and it’s dated 17th January 2002, and then it says, “Thank you for attending the surgery recently for your smear test. I am happy to tell you that your cervical smear was normal. I would be grateful if you would attend for the next test in three years time. So it was, from 2002, so every year till 2002.

And then back on to the normal three years?

Back onto the normal three years. And there’s been...

Was this at the GP’s surgery?

Yeah. There’s been a couple of times when I’ve had a scare. And by that I mean I look very closely for all the signs and symptoms. So any bit of pain during intercourse, any kind of blood smearing like that at a time when you’re not expecting your period, and also any discharge with that in it. So I’ve had a couple of those things happen to me.

The last one was the year before last. But because of my history now, and I’m sure this would be the case anyway even if you didn’t have the history; the GP’s referred me straightaway. This time I’m going to [hospital name], just because the whole system’s changed. I go to [hospital name]. There’s a gynaecologist there, a fantastic guy, called [doctor’s name]. He had me in there straight away, had a look, found there was an erosion, treated it, off you go.

I had it slightly early, my follow up smear test because it was, unfortunately I think just before or just, and I got, I think that’s part of the problem as well, I think I forgot to mention this. But Jade Goody was diagnosed in August and my diagnosis was in September. And part of the reason I went with the bleeding is because obviously it was in the media, and it was something that was brought to an awareness.

And then I did have a few problems after my cone biopsy, a few minor kind of niggles. But obviously recovering from an operation, so that’s quite normal. And I’d had a few health problems, and then when they said that Jade was terminal, and I think it was either then or just before she died, I decided to go for my follow up smear because I think it was 5 months rather 6 months after, because I found it quite difficult to wait.

I just wanted to know that it was alright and that they’d not missed anything and, you know. And kind of that I was going to be okay really. So yeah, my follow up was in February, so it was five months after my initial diagnosis.

And that was clear?

That was clear. My smear was clear. They did a biopsy as well, which showed an area of inflammation, but it’s not cancerous or anything. It’s just inflamed tissue. But the HPV virus can cause inflammation, so it’s probably just the HPV virus there. But it wasn’t anything to worry about and my oncologist said that he would see me again in six months. But I was fine.

I can probably honestly say no, I didn’t always go [to follow-up appointments] because then life took different turns. And I think what I was very aware of was that, you know, at the time with my sort of family situation, I thought, “Nothing can happen to me. It’s not allowed to happen to me because if it does, then it’s going to be awful.”

Because I had no family, and no, and my partner was going through his illness, and the children needed me. I thought I can’t be ill. So the thought of it reoccurring would’ve been too difficult for me. And so I think I must confess to have not gone to perhaps the bi-annual ones, you know, the two year ones.

And I think I missed two. But in missing two, I don’t quite know what that says about me, because having gone through the experience you think the last thing you’d ever do is miss a smear test. Because, you know, having that smear test caught me at those stages where it was dealt with. And I don’t quite understand why I did that. I guess apart from fear. I’m not sure.

There was a check up post hysterectomy at six weeks, no eight weeks. And he said that everything looked fine. He’d done a very good job. I’ve got a very neat line. And I was to go back in April 2009 for a vault smear, which actually, sorry I missed that out completely. I’ve just had.

I’ve just had a vault smear in April 2009 and those feelings all come rushing back. It’s like “Oh my gosh, what if it’s still there? What if they find cancerous cells in my vault,” and the worry.

I don’t think it ever goes away. I don’t think, you know, that the thoughts are always there that there’s something they’ve missed. And even now I’m waiting on results, and I think no news is good news. I’ve not heard anything yet.