Cervical abnormalities: CIN3 and CGIN
Everyone reacts differently to having CIN3 / CGIN. Some of the women we spoke with worried very little from the time they received abnormal test results through to recovery, while others were extremely anxious until they knew the abnormal cells had all been removed (see ‘Getting abnormal test results’ and ‘Feelings about abnormal results’).
Many women we interviewed were relieved to have the abnormalities detected early through cervical screening (see ‘Views on cervical screening’). They were pleased to be treated successfully and to hear that they were now clear.
Jo had a busy, demanding job, which made her get back to normal life very quickly after treatment...
I’ve been very fortunate, stroke unfortunate in that I’ve got very, very, I’ve had very, very demanding jobs. I’ve had to do, you know, very, very busy jobs, working seven days a week. So it was very easy for me to throw myself into work and get on with it. That said, you do sort of, at the back of your mind, know when you’re supposed to get the results of those tests back, in six weeks or so. And particularly in the latter years, I’ve been quite hot on chasing up, for my results. But yeah, I think throwing myself into work has definitely helped.
Some of the women we interviewed said they felt emotionally drained after treatment or a bit tearful, especially when they thought about what they’d been through. Several recommended keeping busy at this time and not spending too much time alone. A few said they cried with relief when they found out they had normal results. A couple, though, said that while everyone around them was happy and relieved, they felt upset because they were still coming to terms with what they’d been through.
Debbies family were extremely happy when she was given clear results but she felt miserable. She...
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.
Some of the women we talked to said that, although they had clear results, they were now worried about recurrence. A few, who had been treated over ten years ago, said that these anxieties lessened with time. Others were more worried about cancer generally. A few said they were concerned for their daughters and keen for them to have the HPV vaccine (see ‘HPV’).
Jane had four children and had to get back to normal life straight after treatment. The word ...
The emotional took a lot longer to sort of heal from really, because the physical symptoms were just, well I’ve had four children you know, it wasn’t anything that, there was no extreme pain in any of the procedures, none of them. Slightly embarrassing with your legs wide open, but nothing any more than that.
And yes. And then coming back to sort of family life. And I think then it kicks in, you know. It’s not something I sort of thought too much at the time, and just got on with it, but I must say the word ‘cancer’ just kept playing around in my head. You know, ‘carcinoma in situ’ kept going round in the head. And I didn’t really realise at the time that it was pre-cancerous. So even though it can spread or you know, it can also if I hadn’t had the smears, that’s what I really think, if I hadn’t had the smear test, he said that he has women that two or three years later, it’s too late. You know, so from that point of view it’s like, I then made it my mission to just say, “Everybody have a smear, you know.”
Pam worries more about cancer now. She wonders whether she is more likely to get it and whether...
I’m very impressed with the way the treatment was done quickly; you know obviously it was taken seriously, which now obviously I realise why it was taken seriously. What was I going to say? There was something that crossed my mind as well at the time. I started thinking well, when my mum told me about this injection for children or the set of three injections whatever it is.
I started to think about well, if I’ve had it, and she might catch it, does that mean that I might be able to catch, well not catch, but hereditary, get the breast cancer from my Nan.
So now I’m thinking to myself, do I go to my GP and insist on a mammogram? Because I’m not one of these people that regularly checks myself, and I wouldn’t know exactly what to check for. So I’m thinking that I don’t know how cancer works, even now I still don’t know exactly how it works and I don’t, if my daughter can get it because I’ve had it. Then I feel that maybe I should go and get my boobs seen to really.
So you’re thinking more now because of this, you’re thinking much more about cancer?
In general yeah. I think its, because I don’t know, yeah even to this day I don’t know whether the fact that I’ve had cervical cancer, or nearly cervical cancer, means that I am more prone to get it again. Whether I’m more prone to get a cancer somewhere else. I really don’t know. I don’t know what to look for. I haven’t got a clue.
A doctor explains that women who have had CIN3 before are only slightly more likely to get it...
If CIN3 has been completely treated, in other words the abnormality has been removed in it’s entirety with a zone of long tissue around it, then the chances of it recurring are very, very small. 95% of women do not need any additional treatment. Somebody who has had CIN3 is at slightly higher risk of developing [cervical] cancer than somebody who has not had CIN3, and that’s why we advise that these women should have smears every year for 10 years. And if the smears are normal, then they can return to the normal screening interval.
And some women were also worried about their daughters. And whether there was any more increased risk now for their daughters?
Well they can be reassured it’s not familial. It doesn’t run in families at all. So their daughters are not at any higher risk.
Many of those we spoke to said that, since diagnosis and treatment, they looked after themselves more because having CIN3/ CGIN had made them realise how important their health was. Several made changes to their diet or lifestyle, including drinking less alcohol, stopping smoking and doing more exercise. One woman had started meditation to help her relax. A few, who felt they had a healthy lifestyle anyway, wanted to move on after treatment and get on with normal life.
Ruth stopped smoking, including social smoking, because having CIN3 made her particularly aware...
You mentioned that one thing to have come out of all of this is that you’ve been looking yourself a lot more than perhaps if this hadn’t happened?
Have you been making changes to your lifestyle or diet or that kind of thing? Or generally just looking after yourself much more?
I think for many years I’ve actually, I’ve always been fairly interested in being quite healthy and having a healthy diet. But I think that interest has increased considerably since this.
I used to smoke. I gave up many years ago, but would sometimes have a few cigarettes socially, sometimes more than a few, especially if I was with a group of friends and we were drinking and they were smoking. Whereas since then, and I guess years ago I used to think “Oh, you know, a few cigarettes on a Saturday night, big deal. That can’t really make that big a difference.” And some people agree with that, and it’s better than smoking twenty a day.
But more recently, because I’ve become aware from the consultant that this condition is more common in smokers, I really avoid it now as much as I can. I try and avoid going out with the people that smoke because I know after a couple of glasses of wine, I may be tempted.
So I’ve really, and you know some people will have a few cigarettes and think oh it doesn’t matter, whereas I don’t now. If I do, if I’m foolish enough to have one or two, I really feel bad about it. And that really bugs me and it really worries me. So I’ve cut that out.
I try not to drink so much. I don’t, I’m not obsessive about it. I’ll have a few glasses of wine at the weekend. But otherwise a healthy, a very healthy diet and plenty of exercise. And also I’ve studied nutrition a bit, and I’m aware of certain foods that are sort of, anti, cancer fighting properties in particular for certain types of cancers. So I’ve just made sure I include plenty of those in my diet.
Some of the women we interviewed said the whole experience had made them look at life differently. The anxiety of having abnormal results, waiting for colposcopy or treatment, and being treated had a huge impact on them, and they stressed that the emotional effects of having CIN3 / CGIN lasted longer than the physical. Several women appreciated life more now and valued their time with family and friends more. They also had more compassion for others. A few said their experience had led to them to want to encourage other women to have regular cervical screening tests (smears) (see ‘Views on cervical screening’).
Waiting for colposcopy and treatment and the emotional side of CIN3 had a huge impact on Emma....
It does change your outlook on everything, you know. I look at my kids differently now, and I look at my family differently now and then. I don’t think health professionals and some people realise the emotional effect it has on a woman. And to be honest I think the emotional effect it has on a woman is more than the physical effects it has on a woman….
But it does make you see things differently and I remember, I think it was about a couple of days after I got my results, I just burst into tears in bed one night for about an hour and a half, just everything all of a sudden just hit me. And now this has, you know, I want to move on with my life and there’s so many things that I want to do now that I wouldn’t have even thought of before. And I know I haven’t got cancer, but the thought of even thinking that you might do makes you see things differently.
I want to do more stuff with my kids. I want to move. I want to because I have, I was actually in the middle of doing an honours, a BA honours when I found out, and I just simply couldn’t concentrate on it. So I’ve had to stop doing that, I want to take that back up again. You know just, oh there’s a list of things that I want to do and I am going to do them.
But you know, it’s just, it is very emotional and that is the main part of it. The waiting and the emotional side of it is the worst part, not the CIN, not the treatments. Not anything, you know, it’s all about the emotional side of it.
Anna is now doing her best to raise awareness of the importance of cervical screening. This has...
I’ve started now making awareness bracelets that I sell with 25% of the funds going towards Jo’s Trust, because they gave me so much support. And also my sister came up with the idea that we should have something, some information put on sanitary products about women to go for their screening test, you know. We don’t like admitting that we have to go, it’s not very pleasant, but if there was something to just discreetly remind us, it might spur somebody who wasn’t going to go, to go for one.
The response I’ve had from manufacturer’s has been overwhelming. They’ve taken it to review boards to try and push it, and Sainsbury’s actually rang me saying they’re really trying to push it through, which is good. So yeah, the more we raise awareness the better, but this is helping me deal with it as well, because I’m doing something, I feel I’m being active. By being active I’m being positive, and that has a good effect on me, and that will hopefully help others in the future.
Michelle feels shes a different person now. When doctors told her she could have cervical cancer...
I think people deal with this as a clinical problem, i.e. you’ve got an abnormality and we’ll remove it. And then you go away and that’s sorted out. But many people that I’ve spoken to have had quite severe, I think quite severe problems mentally after this, in terms of the impact it takes upon your life, upon your family’s life, because while you’re waiting for those results you’re really, most people feel like they can’t really move on, or get on, on a day to day basis. And I certainly found that very hard.
I think obviously my experience was particularly difficult because I was told that I probably had cancer, which at an early age you don’t think it’s something that’s ever going to affect you. And obviously you don’t really know anyone else in the same situation. I’d not been for a smear ever before, so I was very lucky that I was picked up at an abnormality stage.
I had my operation last September. I’ve just had my first clear follow up with no abnormalities, my first clear smear. So I’m very happy about that. But I’m still, I think since then I have been a lot better, that was in March. But previously to that I’ve had very, very difficult times coming through it emotionally. And only since my clear follow up have I been able to stop relying on tablets really to stop panic attacks. And although there were very rare occasions, I have found sometimes that the kind of fear got the better of me.
I don’t think I’m the same person today, but that’s not necessarily a bad thing. I think now that the fear’s subsided somewhat, I appreciate things a lot, you know, my family a lot more and other things in my life a lot more. But I won’t ever be the same person. But that’s a positive thing now rather than a negative thing. Which was straight after it happened because I did find that I was probably suffering from depression.
For some, the emotional side of having CIN3 / CGIN was bound up with their experiences of health care (see ‘Perceptions and experiences of health care’).