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Cervical Screening

Sources of support

Support from family, friends and health professionals can be crucial in enabling people to manage and cope with their feelings when diagnosed with an illness or health related problem.

Friends and family
Many women we interviewed said the support they had received from their family and friends had enabled them to cope better with their fears. Some didn't tell some family members or friends until just before, or after, they had further tests or treatment, because they did not want to burden them with their concerns or cause them worry. Others didn't talk about their experience until several years later, when a friend was also diagnosed with abnormal cervical cells.

Some mentioned that the support of other relatives or friends who had experience of abnormal test results, tests or treatments was vital to how they coped with their feelings.

 

Explains how she felt reassured by talking to her mum who'd also had abnormal cervical screening results.

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Age at interview: 27
Sex: Female
Age at diagnosis: 20
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Fortunately she didn't have to go through and have any treatment done but she did have a couple of abnormal smear tests in a row which happened before I had my first one, so when I did have mine she said "Oh," she was like "well you know it's quite common, there's no need to worry." I think that was what I needed to hear, it was quite a common thing, you can panic and think you're the only one, but she was "oh no, it's quite common, I've had it done myself, there's no need to worry," so yeah that initially put my mind at rest. But I mean she didn't, fortunately she didn't have to go for any further treatment so she could only give me sort of limited experience that she had of it. But at least it was nice to know that other people had got abnormal tests as well, especially your mum, it's quite nice to know. So yeah it's nice to know that it's not, that it is common, not that that's great for everybody but you just don't want to feel that you're the only person that's got them.

One woman said that her friends found it hard to understand why, after treatment, she still felt anxious about having had abnormal cells. A few, who had a history of abnormal results and treatments, found they were supporting their partners or other family members who were more anxious about their abnormal result than they were.

GPs, hospital doctors and nurses
Doctors and nurses, while primarily caring for the medical needs of their patients, can also have a fundamental effect on how people cope with their illness. Support from their GPs when women received an abnormal test result made a difference to how some women we talked to managed their anxiety. A few lost confidence in, or felt let down by, their GP because they didn't receive adequate information or explanations about their abnormal result, tests or treatments, which caused them unnecessary anxiety.

 

She was not given support by her GP when she was referred for further tests.

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Age at interview: 19
Sex: Female
Age at diagnosis: 19
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Because you know when you get told something like that and I've got a history of cancer in my family as well because my paternal grandmother had a growth in her womb which turned out to be cancer and she died of that and when you know you've got a history of cancer in your family and you're telling this to a doctor and the doctors like "oh there's nothing wrong, don't worry about it, we've just found some abnormalities but it's okay don't worry, it's just the fact that you're abnormal but there's nothing to worry about really." 

That was like, and she never really explained to me what abnormal cells they'd found. I asked a question and she said "oh don't worry we'll just have to refer you to try and sort out the problem and take a biopsy" and I was sitting there thinking okay biopsy what exactly is involved in a biopsy and she was like "oh they'll just take some tissue samples". Oh how will they do that? "Oh don't worry about it, it's really simple, it's painless". 

But how do they do it, she wouldn't give me an answer as to how they did it and so that sort of hyped it up for me and I was like okay they're going to cut me open and I'm going to be there bleeding to death, so in that sense it was awful.

One woman was impressed by the kindness shown by one nurse who spent an hour speaking with her on the telephone about her concerns following her abnormal result and referral for a colposcopy examination.

 

Describes the support she was given by a nurse when she had an abnormal result and was referred...

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Age at interview: 54
Sex: Female
Age at diagnosis: 54
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But the lady that phoned me with that result was the actual Clinical Nurse Practitioner I think she is at the hospital, again at the hospital for, particularly for women. She actually phoned me at home after, from her home at night because she'd been trying to get hold of me while I was at work and she couldn't track me down and she was on the phone for over an hour explaining to me why the results of this smear had happened and "It's really unfortunate, we don't think there's anything wrong but because it is another iffy smear we just want to follow it through just to, to reassure you and reassure ourselves that there isn't anything wrong." She was very, very nice.

 

She felt there needed to be more follow-up support after her diathermy loop excision.

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Sex: Female
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Yes which is what I feel a bit strange is having such a big part of yourself taken out and after this LOOP treatment they provide you with some antibiotics and they tell you you can't exercise, you can't use any tampons or have anything inside your vagina for about a month and a half and yet the next follow up appointment is 6 months down the line. I think that's too far away for me and I mean I had my first period was very heavy and very painful and I still have my second period which is quite heavy, cramps. 

When I phoned up my GP all they tell me is there's not much we can do so I insisted and they did some kind of bacterial test they said "Oh you've just had thrush that's all, so just wait for your appointment, there's nothing we can do," and I just wish that there should be more follow-up and more, not just say not sympathy but more consideration and more attention to the after treatment, I think that is really important, that is really lacking. Because I mean they always say "Don't do this, don't do this," it seems to be quite, not severe but quite important if you can't even run or you can't even swim, you have to be so careful. But they don't, they're not following you, they're not there for you when you think okay what can I do?

Others who had good support from their GP stressed this helped them to cope better before their tests and in reducing their fears afterwards.

Many women we interviewed found the treatments and investigations for abnormal cervical cells embarrassing and intrusive. Several mentioned that the support of nurses during these tests and treatments helped them to feel less embarrassed and more at ease. Simple acts like holding their hands and talking to them during examinations made an enormous difference to how many women felt.

 

Health professionals need to be aware of the anxiety women experience when they attend for a...

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Age at interview: 54
Sex: Female
Age at diagnosis: 54
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But then the nurse called me into another waiting area and I just sat in a bleak corridor, listening to other nurses chatting, them not giving a thought to how I was feeling that my appointment was well over an hour late, over an hour and a half late and I would rather have sat out in the big waiting area than this pokey little corridor where they put me. 

Eventually the doctor called me in, she said "I apologise for the wait," and the nurse apologised for the wait and there is no more to be said after that. But I think what the professionals have got to remember is that what they consider an every day job that they do, every week of their lives for however long they're in that job, is the first time it's happening to a woman. It's, this woman is sitting out there, she is quaking in her boots, she is terrified of what's going to happen to her, she's terrified of the results that are going to be come up with what's happening to her, she's sitting there, she can't wait to get this awful thing over and done with but they've missed it, they've actually missed it. 

Their apology to me was fine, I'm not knocking it, they couldn't do any more but apologise but I don't think they understood really what they was apologising for.

 

It’s important that health professionals keep women informed during procedures and they are...

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Age at interview: 32
Sex: Female
Age at diagnosis: 31
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I’ve spoken to people who have had really, really difficult times with consultants, doctors, nurses with their beside manner. Everybody understands and appreciates what a fabulous job they do, but I think some people feel like, because the doctors and nurses are doing this day in, day out, they sometimes forget how you’re feeling. That it is not a day in, day out occurrence for you. And you could be really upset. And lots of women actually can feel quite intimidated by doctors, and they don’t ask enough questions and it is only when they come out, they think ‘oh I wish I had done this and I wish I had done that’. So I think really with the health professionals I think it is just all about keeping the patient informed, telling them what is going on, and being positive with them and reassuring them. Because I think when I went in for my colposcopy, I had the colposcopy nurse, and I had another nurse there as well. And they were just fabulous. They didn’t stop chatting to me about things from the moment I got in, until the moment I left and it so took your mind off what was going on, and they were just so nice, and said, the nurse gave me her direct line and said, “If you need to phone me about anything, if you’ve got any questions.” And that was really nice for me because I walked away from there thinking, if there is anything I have forgotten to ask I know that it will be okay for me, to give them a ring and to find out some information.
 
So I think it is just basic, basic things like that, when we go in there we are so scared and of course we trust what they are doing. But sometimes it’s nice when they give you the time of day and they are reassuring.
 

Her consultant's attitude put her off asking questions about her abnormal cervical screening results.

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Age at interview: 41
Sex: Female
Age at diagnosis: 27
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And anyway she took, then she took me into the room and then I met the doctor. And he sort of said "We're going to be taking some of the cells out to test and then we'll give you the results in a few weeks." And then he started to get up to go and I said "Look does that mean I've got cancer of the cervix?" And he was a bit annoyed actually because he said "No," he said "we're testing you, that's what we're testing you for. It doesn't mean just because you have abnormal smears, it does not mean that you've got cancer." He was very abrupt. And I, and I was quite taken aback that he was quite abrupt. I mean he's probably had that question so many times, that women as soon as they have an abnormal smear test they think it's cancer straight away, which I didn't until I got actually into the clinic. And I felt thereafter that I couldn't really ask him any questions. I felt like oh God I better not say anything more because he seemed a bit annoyed. 

 

The way she was treated in hospital reduced her fears about her abnormal cervical cells.

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Age at interview: 51
Sex: Female
Age at diagnosis: 46
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I don't know, I think probably because of the, the way I was treated when I went into hospital. There was a kind of, there was an aura of "Whatever this is we're going to sort it for you." Not "We can make you well," but "We're going to be able to do all that we can for you," and I had no fear. I mean I had obviously an anxiety but I thought I was in capable hands.

Many recalled that when hospital doctors and nurses had acted in a courteous considerate way this had made a great difference to their experience of the investigation and treatment of their abnormal cervical cells.

Online support
One of the most supportive online 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...

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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...

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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...

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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.


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Last reviewed October 2015.

Last updated October 2015.

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