Finding sufficient information about further tests and treatments can be bewildering for people if they do not know what questions to ask, where to find information or they don't understand the medical terminology used. We asked women about their experiences of looking for information about abnormal cervical cells, colposcopy and treatment. Some women we interviewed wanted to find as much information as possible, others wanted to have information in stages and some preferred not to know very much about their condition. When women weren’t able to find enough information, they felt more anxious about their abnormal results and treatment.
Some received information leaflets from the hospital during their further tests or before their colposcopy examination with their appointment letter. Many found these leaflets informative and reassuring.
She found the hospital leaflets informative and reassuring.
She found the hospital leaflets informative and reassuring.
Age at interview: 51
Sex: Female
Age at diagnosis: 46
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Hospital leaflets yes, yes they were all hospital leaflets. There was a whole bunch of them primarily for female complaints if you like. There were lots and lots of them and simple to read, not sort of heavy, heavy duty sort of wading through loads of stuff they were sort of sparky and caught the attention and just picked out specifics of what you might be interested in, they didn't labour on things that can go wrong and what can't, they just literally were all up beat and I found that quite, well very comforting actually.
The information sent with her colposcopy appointment letter was detailed and informative.
The information sent with her colposcopy appointment letter was detailed and informative.
Age at interview: 27
Sex: Female
Age at diagnosis: 20
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Yes they've sent me a letter, actually the letter is now more detailed and informative than it was, they've actually told me to take the day off work whereas when I had it done before I went straight back into work afterwards and didn't really think about it, but yeah the information is a lot more, it's a lot better, it's a lot better than it was. It, it mentions really simple things that might be obvious but when you're going for something like that for the first time you probably wouldn't think about because you're just panicking too much but it has a list of things to do and what not to do. So it will say bring some sanitary towels with you, don't use tampons for a month after, which may be fairly obvious but that definitely wasn't mentioned before.
Paula would have liked the information leaflets to be less matter of fact and include more detail about the procedure.
Paula would have liked the information leaflets to be less matter of fact and include more detail about the procedure.
Age at interview: 32
Sex: Female
Age at diagnosis: 31
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What about the Department of Health information that you were given with your abnormal smear result, and then going to Colposcopy. What has that been like?
I found it very vague. Not informative, very just, there wasn’t enough of it. And what I was actually given. I had my smear test letter that came and said you have got severe dyskaryosis. There was a photocopied leaflet in with it, which must have been photocopied for about ten years because it was sort of skew whiff on the page. It was all quite difficult to read and the whole thing was just very matter of fact, ‘you have abnormal cells’, ‘you have been invited to colposcopy and this might happen or that might happen’.
It did say on there you haven’t got cancer. I think a lot of people, the first thing they can think of is, ‘oh my goodness, have I got cancer?’ It did say, you know, you have got pre cancerous changes that if left could progress to cancer in years to come. It did say that and it was sort of quite reassuring as in that information.
But as to the actual procedure and what was going to happen, it was very, very vague. And I think it could have done with a bit more of a questions and answers, frequently asked questions type thing on there. Just a bit more real. It was all very medical and so yes, I wasn’t that impressed with the information I was given.
What sort of things would you have wanted to know?
I wanted to know things like, well if they are going to do this treatment, and they are going to put this wire loop through my cervix, is it going to hurt? Are they going to anaesthetise me? Things like that. That wasn’t in there. So there was nothing of the procedure on the leaflet at all. So it was just a basic sort of overview of what they had found and what they were going to do. But they actually didn’t tell us, didn’t say what they were going to do, in any particular detail. And I think I would have liked to have seen more of that. And just sort of more even some support websites or something like that. If they had just put a few links on there, that if you wanted to go and search it further or if you wanted more information you could go here. There was nothing like that on there either. It was just, as I say a page that was very vague and lacked any kind of useful content really.
Attending a patient information group for women who were having treatment for abnormal cervical cells made her more anxious.
Attending a patient information group for women who were having treatment for abnormal cervical cells made her more anxious.
Age at interview: 52
Sex: Female
Age at diagnosis: 46
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So, well we also had verbal information because the [hospital] had a special clinic for people before you went for your procedure, to explain what the procedure was going to be about which actually I didn't enjoy at all, I'm pretty squeamish, I'm probably less squeamish now than I was. And it was a couple of nurses and a lot of women sitting round in a big circle. And they explained what a pre-cancerous condition of the cervix was to us. And then they started to explain what the procedures were for treating it at which point I fainted and had to be taken out and put on a bed with my feet in the air to recover. I didn't find that very helpful. I mean quite interesting to know what it is, but I don't actually want to know exactly what they're going to do thank you very much. And I think that actually got me in more of a state that first lot of treatment than not having a pre treatment session.
Many found the information given by the doctors and nurses at the clinic very helpful. However, many said they had to ask questions because the information wasn't always freely given. Sometimes women said they would have liked more information from their doctor. Women who had taken a written list of questions to their appointments had found it helpful.
Laura felt rushed during her appointment with the doctor and so she didn't ask any questions.
Laura felt rushed during her appointment with the doctor and so she didn't ask any questions.
Age at interview: 39
Sex: Female
Age at diagnosis: 37
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Not feeling rushed when you go in for your appointment, and for them to give you as much time, I mean I had so many questions and answers, so many questions I wanted to ask him, that sometimes when you walk in the room and they don’t even look at you, you know, they have sort of got their head down writing, and, “Oh hello.” And you think that they know you, and he said, “Oh yes, you are in for a hysterectomy.” I think that if they took a bit of time to read about you before you go in, so that he could go, “Oh hello Laura. Yes you are down for the hysterectomy.” You know, and I had so many things that I wanted to ask him and I just felt that he wanted me to, he wanted me to just to sign the form and get out of the room. I didn’t ask him anything. And, I think that is why I did get myself into such a state.
Laura would have liked more information and reassurance when she was told she needed a cone biopsy.
Laura would have liked more information and reassurance when she was told she needed a cone biopsy.
Age at interview: 39
Sex: Female
Age at diagnosis: 37
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And like when we were going on holiday. When I had my appointment through, which was so quickly to go and have the biopsy done. We were going on holiday, and it is on the Friday, Monday to Friday we were away. And my appointment was for the Friday. And I rang the hospital and I said, “Can I cancel it and make it for the next week.” And she said, “Hang on, a minute, I will see what you are in for.” And she said, “No, you must come on the Friday.” And I then realised obviously it was something quite serious. But I didn’t know actually what it was. It was just an abnormal smear. And of course that really panicked me, but may be if somebody just said to me, “It’s CIN3.” All you had is this letter to say it was an abnormal smear and you need to come back in for a biopsy. I panicked then and I thought what have I got? Obviously yes, it was severe, because it wasn’t CIN1 or CIN2, it was CIN3. But I didn’t know and of course I worried all of my holiday then. And I wished may be they’d have said to me, “This is what you’ve got, and we just need to take it away and see what happens after.” But, you know, definitely that people don’t give you that much information and reassure you really, I think.
Abnormal cervical cells and follow up seemed to be a topic which some women did not talk freely about with their friends, family or work colleagues. But many explained that when they did talk to other women they found it very reassuring. They realised that abnormal cells and further investigations were more common than they first thought.
She found it reassuring talking to a friend who had a similar experience.
She found it reassuring talking to a friend who had a similar experience.
Age at interview: 37
Sex: Female
Age at diagnosis: 28
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No, sort of back in those days, I mean if it was happening to me now and I hadn't experienced anything I'd be straight on the Internet and find out. But back, back then in those days there wasn't such a thing. And from my experience the only person that actually gave me sort of support was one of my friends and I was at, I just happened to be telling her because like I say things, you don't tend to talk about things like that and she said that because I was telling her about my experience, she'd had some treatment done. And I never knew about it although she was a friend. And sort of she explained to me how she felt going through the same situation and I thought crikey if she felt like that then I'm not being paranoid or whatever. So that was quite a comfort to me really, by talking to a friend that had gone through the same thing.
Some women used the internet to find out information. Several found the internet a good source of information but others had difficulty finding relevant information. Some said the information they found was too medical and there was little reference to personal experiences. One of the most useful resources for many women was the Jo’s Cervical Cancer Trust website. They had found it very helpful to chat on the forum to other women going through similar experiences, or to read how others were coping.
Jo's Cervical Cancer Trust was Kim's lifeline during investigations and treatment. She advises other women not to bottle up their feelings.
Jo's Cervical Cancer Trust was Kim's lifeline during investigations and treatment. She advises other women not to bottle up their feelings.
Age at interview: 34
Sex: Female
Age at diagnosis: 33
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So NHS Direct was quite good. I think by far the most for me, from a personal point of view was Jo’s Cervical Cancer Trust. Mainly because of the forums, you could chat [laughs] to people who were going through the same thing, and you got a more personal impression of what was happening, and how other people were coping with it and what they were going through, which was very helpful. I think Jo’s Trust was pretty much my life line while I was going through all of this.
Don’t keep things bottled up. I am a really bad one for keeping my feelings bottled up and I learnt the hard way that it is not a good thing to do. So finding someone that you can talk to, really, really helps. Even if it’s an internet forum. It doesn’t have to be face to face. Sometimes, some people find it easier to unburden themselves anonymously. But I think it’s important to not be scared, not keep your feelings bottled up. Talk to people about it, because I am the first one of my friends to go through this. But I’m sure that most people have got friends who have already been through this and they won’t know until they ask. And I know it’s a difficult thing to ask, “Hey everyone, I’ve got an abnormal smear. Have you had one?” But, there are ways to kind of introduce it into a conversation, yes. I think, but for most women they will have friends who have already been through this.
Paula used the internet to find information and she spoke to other women in the forums on Jo's Cervical Cancer Trust.
Paula used the internet to find information and she spoke to other women in the forums on Jo's Cervical Cancer Trust.
Age at interview: 32
Sex: Female
Age at diagnosis: 31
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I searched the Internet just everywhere. I Googled things. I found a lot of American sites that were kind of a little bit inaccurate and a bit scary, some of the stories that you read. And there is a lot of information there about cervical cancer. I think there is limited stuff on pre cancer, pre cancer changes. But yes, I did search, and I did find some useful stuff. And particularly Jo’s Trust and all the things that were there. But yes, I did. I did look on the Internet quite a lot.
Okay. What is Jo’s Trust?
Jo’s Trust is a cervical cancer charity. It’s a big support network for women who have been through, you know, the most, mildest cell changes through to yes, advanced cervical cancer. And it is just a great place where you can go on there and you can meet other women and talk to other women about their experiences. And if you have got any little questions that might seem just really little to anybody else. It might be something that is really niggling you, and you can just go on and post a question up and ask for advice from people. And it is just nice to have that network, that support network there that they can give you a bit of assurance, and just make you feel not so alone in what you are going through.
And did you feel alone at any point?
I didn’t, I did feel like, I think I felt a little bit like everybody else in my world, all my friends and family. Everyone was getting on with things quite normally and they didn’t really, obviously they were worried about me, but it wasn’t an impact on them as big as it was having on me. So I think sometimes when your mind goes into overdrive and you just think, “oh I just need to talk to somebody about this”, it was difficult with family and friends. 1) you really don’t really want to keep going on about it, 2) You don’t want to worry anybody about it. And it is nice to have the support network from the Internet. So you can just feel a little bit more, like you are not alone, and you know there is a lot of support out there and there is a lot of people who actually understand what you are going through.
She contacted Jo's Cervical Cancer Trust to get a second opinion about her recurring inadequate cervical screening tests following her cone biopsy.
She contacted Jo's Cervical Cancer Trust to get a second opinion about her recurring inadequate cervical screening tests following her cone biopsy.
Age at interview: 42
Sex: Female
Age at diagnosis: 25
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On the internet, I just trawled through and sort of, I don't know, I don't know I got hold of them, I just literally trawled through and put in you know sort of key words and they came up with that. There was various sites but it was the one I specifically wanted that I could actually ask the question to. There was quite a few that you could just go to pages and get information but it was one that I wanted to be able to actually ask questions and it was great, you know an immediate response to say thank you we'll put it to our team of consultants and within a week I've had quite a detailed response which was personal to me which was really good, yes.
Jo’s Cervical Cancer Trust also has a helpline: 0808 802 8000 see their website for opening times.
Some women read medical books or articles from magazines which they said they found helpful.
Last reviewed October 2015.
Last updated October 2015.
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