Patricia - Interview 21

Age at interview: 55

Age at diagnosis: 38

Brief Outline:

Patricia was diagnosed with CIN3 in 1993, aged 38. She was treated by LLETZ and, later, chose to have a hysterectomy because of the anxiety she felt about recurrence and further problems.

Background:

Patricia is an NHS manager Ethnic background / nationality' White British

More about me...

In 1993, Patricia attended for routine cervical screening and was ‘horrified’ when she was told that her results showed abnormalities. She had never had any problems before, apart from when she was in her 20s, when she’d had some cervical erosion and possibly some CIN1, but never any treatment.

Patricia said there was some confusion at her local surgery and, initially, her results were mixed up with someone else who had the same name. She was told everything was fine but, when she queried this, she discovered that her results actually showed she had CIN2. At the colposcopy clinic, Patricia was told that she also had CIN3 and that she may have cervical cancer too. She was in her late 30s, had two young children and feared the worst.

Patricia was treated by LLETZ and results showed she did not have cancer. She had a follow-up appointment six months later and attended regular follow-up appointments for about nine months. Throughout this time, however, she worried about recurrence and attending appointments at the hospital caused her a lot of anxiety. In 1994, Patricia discussed having a hysterectomy with her consultant and, shortly afterwards, decided to go ahead with the surgery. Her results showed that more CIN3 had been found, which Patricia said was frightening. After surgery, she was given two vault smears and both of these were normal.

Over the years, Patricia said her anxiety about recurrence subsided but, at the time, she felt extremely worried, isolated and had been given very little information. She had confidence in her consultant, though, and was pleased she’d chosen to have a hysterectomy. She recovered well and was back to work six weeks after surgery.

Patricia was shocked and scared that she might have cancer. She felt faint after surgery and...

It was about CIN3 and he [doctor] was concerned that it was invasive at the time, as well. That was all the initial appointment. So huge shock, a big scare about was it actually invasive cancer? And I really was absolutely scared to death. I thought I was going to die.

I had two young children at the time, so I felt an element of feeling very responsible. And what made it even worse was, you know, it was commitments, and sometimes it’s worse. Yeah, went into complete panic basically. I was at that age, I was late thirties and the consultant recommended a loop biopsy? Does that make sense? A loop excision? So I went for that. And it was cleared. I think the results were that it was cleared, and that I would have to go back to have regular smears after that.

… I mean I think it’s quite a large excision because when the consultant actually phoned my home to give me the results, which was very good of him. And he seemed pleased at the time because he’d removed everything with clear margins. So he was happy about that and I understood from his happiness that that was a good thing to have, clear margins. And he said he took a lot out, and at the time, yeah, I sort of nearly fainted. Well I had to lie down for a long time certainly because there was a lot of bleeding. And I thought it was quite a major procedure to have in a clinic to be quite honest.

Patricia's hysterectomy affected her relationship with her partner. They rarely talked about it...

It was a big chunk out of my life. And really damaged my relationship with my partner as well I think. Because I couldn’t talk to him usually. And I think that that put a bit of a distance between us, and I don’t think it ever went away actually….And maybe certainly I maybe blamed him for that possibly.

Over fifteen years ago, Patricia was concerned about the reliability of cervical screening. She...

Thinking back, what fuelled my anxiety attack, at the time there was a lot of adverse publicity in the newspapers about poor test results from smears. It was often in the head lines that women had died because the test had been proven to be, it was like a false negative do you call it when its? Yeah a false negative. That’s what it, yeah, a false negative.

So that frightened me because I thought how can I be sure, even when I have a repeat smear or whatever, that its, I can rely on it? So I didn’t have much confidence in the system, in addition to that earlier problem with the GP mixing up the results.

I think that now the Health Trusts have to have a higher level of competences in their screeners from what I can gather. So I think maybe now things are better.

If a woman was invited for screening, and she wasn’t sure about going. What would you say to her?

Just go and don’t, oh yeah, vital, absolutely vital. I think it’s improving so much, so the screening is effective. And I think that, you know, mortality rates have dropped I think since the service has been improved. And I think just from what I’ve heard, I would have more confidence now, as I say, in the screening process and results, reporting and stuff now. So yes, I mean I would encourage anyone definitely to go in for screening.

Patricia felt isolated when she was diagnosed and frightened by the information she read. She would have preferred to talk to other women with CIN3.

During the whole process I felt very isolated, certainly when I was first diagnosed I went to buy a book which, as we previously discussed, was the only information available at that time because there was no internet. And I tried to give myself as much information as possible, but I didn’t really know anybody else who’d been through it.

….. I mean there’s an issue about information, maybe I overdosed on information really, and scared myself sillier by reading this book from cover to cover. So it’s difficult to know what to do with information. Especially when you haven’t got anyone to share it with. So I think…

Did you say you were given information from the consultant?

Not really, no. There wasn’t much in the way of written information at all. So it was just the book that I bought from the bookshop, which was relatively detailed actually I would say. I think frightened me rather than, it wasn’t a huge amount of help actually. I think sharing experiences is probably more useful than reading a book.

Patricia worried about having a recurrence or cervical cancer before every follow-up appointment....

I went back I think after another six months. Each time before I went for a follow-up appointment, I would be in a state of panic again. So after six to nine months maybe of regular testing and regular observation, and because of my level of anxiety, really out of proportion, I don’t know whether I should have been worrying that much, but I certainly was.

I suggested to him that I had a hysterectomy, because I had two children and I was in my late thirties. And I said to him, “Surely it would make sense, in order to stop the very regular testing, to go and have a hysterectomy.” And he actually agreed fully, you know, and I wondered why that was and why he hadn’t suggested it himself. And I thought well maybe he can’t, maybe policy dictates that I have to say that to him.

So I was booked to go in for a hysterectomy, which I had, and I had my uterus only removed, I was advised.

Patricia was pleased she had a hysterectomy, especially because more CIN was found after surgery....

Were you happy with the decision that you made?

To have the hysterectomy?

Yes.

Definitely, yes. Definitely. In fact I didn’t have any problems with it actually. I mean the fact that my ovaries weren’t removed maybe was a good thing because I didn’t have the menopause. I wasn’t menopausal at that time. And I didn’t have to go on to HRT or anything like that.

So I was booked to go in for a hysterectomy, which I had. And I had my uterus only removed, I was advised. And when they got to there, they did discover more CIN on the biopsy, which again scared me because I thought if they hadn’t taken it out, where would I have been? So they said, you need to come back again and continue to have vault smears.

In that year after the hysterectomy, I still was in a huge state of anxiety. Finally there were two clear smears, and that was it. And gradually over the years following that, my level of anxiety subsided. But at no time was anything invasive found. I don’t know what statistically the chances are now. I wouldn’t have thought it was very much really after that amount of time. So yeah, I think I started to relax after a couple of years.