Michelle - Interview 11

Age at interview: 31

Age at diagnosis: 30

Brief Outline: Michelle was diagnosed with CIN3 in 2008, at the age of 30, and treated by cone biopsy. Until her diagnosis, she was unsure whether she had CIN3 or early stage cancer, making this an extremely worrying time for her and her family.

Background: Michelle is a married self-employed recruitment director with a young daughter Ethnic background / nationality' White British

More about me...

Michelle said she had never attended for cervical screening but, when she had abnormal bleeding between periods, she visited her GP and was given a cervical screening test and internal examination. While on holiday, she received a call from her GP, who told her that her results showed abnormalities that were ‘indicative of cancer’. Michelle and her family flew back to England, shocked and concerned, and she went back to see her GP.

Michelle was referred to a colposcopy clinic, where her consultant felt that she would either have high-grade CIN or early stage cervical cancer. Michelle had a colposcopy and punch biopsy and, a week later, received the results. She had CIN3 and, in a following appointment, was treated by cone biopsy.

Michelle chose to be treated privately as she wanted the diagnosis and treatment as soon as possible. She found waiting for treatment and results extremely worrying and was prescribed Valium by her GP because she felt anxious and was having panic attacks. She had a lot of support from her family and found websites on women’s experiences of cervical conditions extremely helpful.

Michelle felt that the emotional impact of CIN3 was very difficult to deal with and it was only after her first clear cervical screening test that she stopped taking Valium. After treatment, Michelle said she felt anxious about all the repercussions on her life had she been diagnosed with cancer. She was prescribed anti-depressants by her GP. She also found it a very lonely time.

Michelle found it hard to eat and sleep. She felt that, unless someone has been through this, it...

I was barely eating at the time as well, and I did, my weight dropped quite a lot, which at any normal time I think, you know, would be fine. But obviously as a result of something like that, you know. And I think, so physically I found it quite hard to cope because I didn’t feel like eating at all, and kind of everything really was just focussed on whether I was going to be okay.

So the actual support side of it was really, really good, but again, unless you’re going through it, you don’t really feel like anyone else understands. And I found that quite frustrating that you feel like you’re on your own, and no-one does really understand. So that’s why websites like Jo’s Cervical Cancer Trust can be a lifesaver for kind of people going through it, because it gives you some solace in that you’re not alone. And people do understand and go through the same experiences.

Did you have to cope with other people’s worries and emotions as well? Like your Mum’s or husbands or …?

Personally, I didn’t have to really cope with other people’s worries because I think the natural reaction for the majority of people is to say positive things because no-one wants to believe obviously that it’s going to be something negative.

So everyone at work, and all my family and friends were very positive and reassured me all the way through that I would be fine. But again, in a more frustrating, it was kind of almost worse for people to say that, because I just wanted to shout sometimes, “Well actually it might not be fine. You know, actually this could be really serious.” And I think again, unless you’ve been through that, that’s a difficult experience to explain to anyone.

Michelle was extremely anxious because she didn't know whether she had cervical cancer as well as...

When I first went to see him [GP], I was having such bad panic attacks, I mean you know I’m not talking about kind of, because again CIN3 and cancer are completely different things. And I’m not saying that what I went through was probably even in any way comparable to the ladies that are obviously going through that, but being told that you’ve got quite a serious health problem is very distressing.

So my doctor suggested for a short term problem that the valium would be the best solution. It would calm me down. I mean just to give you an idea of how bad it was, you know I was out driving one day and I thought I had to phone NHS direct because I thought I was having a heart attack, because the panic attacks were that bad.

I was having very bad palpitations. I felt my throat was constricting. I was shaking. And I was nearly passing out when I went out. I think it’s all just a complete process of going through it all, but the adrenaline’s constantly there. Your mind’s constantly on it. I couldn’t work and I didn’t go into work for around two weeks.

I found it very difficult actually to be around my husband and my daughter, which probably sounds quite strange but the reason was is because it kind of brought everything home emotionally as to, you know, what you could be facing and facing up to really.

The information on Jo's Cervical Cancer Trust was good but what Michelle really valued was the forum, where she could talk to other women. Even after healing, she'd go on it to see if she could help anyone else.

Jo’s Cervical Cancer Trust www.jotrust.co.uk gave a lot of information that was really factual. But it also had a forum on there where women have been through all the stages of CIN but also the stages of cancer. So they’re very, I think most people that go on Jo’s Cervical Cancer Trust are extremely well prepared in terms of giving people information on what they’re going to go through i.e. the colposcopy, the biopsies and that side of it, because they’ve been through it before.

They can tell you whether it’s going to be painful, or whether it’s going to be quick, or whether it’s going to, and how long the results might take. So from a perspective of having somebody else that, you know, feels like they’ve been through it with you, that is very, very useful. And I found that, I mean at that point in time I was logging on, you know, a few times a day. And I still now, after nine months, go on daily to check if I can help other people on there as well.

And on, when you went on there, what was really helpful? You know, when you went on Jo’s Cervical Cancer Trust, did you have any questions yourself, or were you looking out for anything that you thought, “Oh I’ve had a problem with this, let’s see what other women say?”

Well, I found the information on describing where we were in terms of the staging for what we had. I found that very useful. But what I found most useful was the forum because you’re actually talking to people who have been through it, and they can offer you information. I mean information’s great, like when you went for my colposcopy; the most you get is a sheet of information that tells you about what you’re going to go through and what will happen with the results.

But, you know, a black and white piece of paper doesn’t really have any depth to it. And it doesn’t really have any, you know you could be one of what, you know one of ten people or one of a million people going through it, and you do feel quite alone. So a forum where you’ve actually got live interaction with people who can answer your questions, and who can say, “Actually I’ve been through this, but my results have come back and I’m fine.” That’s very helpful.

Michelle's experience helped her realise who their friends were. She also realised how important her family were.

I mean it did kind of make me realise kind of who my friends were. And it, not just friends, but also you know you kind of cling onto your family. And you cling onto people close to you a lot more.

I wouldn’t say that anyone became more important, but you certainly realise how much you need those people around you, because sometimes you can take them for granted, and you might not see your family for a few weeks.

Michelle advises women to go for cervical screening when invited. It can be embarrassing but it's...

So, for the fact of going for a smear test which takes five minutes, it’s just, I mean it’s so worth it. And you know, cervical cancer, and the rates are dropping because the screening is there now.

If you prefer like to have a woman doing it, that’s absolutely fine, but you know, one of the reasons I didn’t go was because I was embarrassed. And then look at the process I had to go through; operations, internal examinations, so actually, if you do have something and they treat it early on, the repercussions are minor, whereby if you don’t kind of get, you know, if you go past that stage, then it has a lot more impact.

And if you find that embarrassing, the smear test, then obviously you’re going to have further tests which you’ll probably find worse to be honest. So, I would say to anyone that it isn’t really that bad, it’s not painful. It’s not difficult. And if you find it is at any point, you can always ask them to stop, and you can ask for somebody else to do it.

So, you know, if you find it distressing, you want to go back at another point or take somebody with you, you know. I don’t think anyone would mind if somebody else being there with them. So it’s very well worth going for the test in the first place.

Michelle saw her GP because she had bleeding between periods. He thought it was cervical erosion...

I started having symptoms last August. I had some abnormal bleeding between periods. I wasn’t too concerned about it, it was very light. But I decided to go and see my GP as I’d never had a smear before. So after going to see my GP he did an internal examination and he said that he wasn’t too concerned. He thought it was cervical erosion, but he’d do a smear anyway. Which was sent away for testing.

We subsequently went on holiday in early September. And I got a letter back from the GP just before I went saying that I did have an infection. So I went off on holiday thinking kind of that was the end of it, and that had been the cause of it.

But while I was on holiday I got a call from the GP saying that they’d actually picked up cancer on my smear or something that was indicative of cancer.

So I flew home and then went back to the GP to discuss my results. The GP did think at that point, as it was quite an unusual result, it wasn’t just CIN3, that they would find an area of cancer. When they did further testing, they were obviously just concerned at that point where the cells had come from.

Michelle found colposcopy a difficult experience because she didn't know whether she had cancer....

I did find the colposcopy quite difficult. The nurse was very good. She held my hand. But the consultant I think knew I was very nervous and very upset, so he didn’t really talk to me a lot during the colposcopy. He talked to his colleague, which, he had to talk him through it; he had a colleague that was training with him. And I said that the trainee could be in the room, which was absolutely fine.

But I think, kind of not really offering any reassurance at that stage, or telling me it didn’t look that bad. The actual trainee did say, “This is not that bad.” Which felt quite reassuring from my point of view and felt quite nice. But the consultant was a bit more matter of fact about it. But then again, you know, obviously there’s not a lot of reassurance they can offer before the results come back. So I kind of understand that. But it would be nice sometimes to have a bit more of a bedside manner with patients I think.

So he didn’t say very much. Did he say anything like, “We’ve seen CIN3 here, or, it looks very early stage?”

He said that there was definitely CIN3, and I said to him at that point, “Does it look like there’s any cancer there?” And he said, well my actual terminology was, “Can you tell, I bet you, well I bet you can’t tell whether there’s, whether it’s cancer or not at this stage, can you? Until you get the results back.” And he said, “No I can’t.”

And I think, you know, to be fair to the consultant he didn’t want to offer me a reassurance that it was CIN3, if then later it did turn out to be sort of invasive cancer. So he told me actually the facts that were there, that it, I suppose it’s quite difficult to deal with when you just want the reassurance that everything’s going to be okay. So he did say that there was CIN, definitely 3, but he wasn’t sure whether it had progressed to cancer at that stage. He couldn’t tell.

Michelle feels she's a different person now. When doctors told her she could have cervical cancer as well as CIN3, she became depressed. The emotional impact was harder than the physical.

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.

Michelle had her first follow-up appointment after five months instead of six because she was...

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.

Michelle feels she couldn't have got through it without the support of her GP, who understood the...

I have to say that from my experience of my GP, I don’t think I could have got through the whole process, and I don’t think I would be sat here today talking in the way that I am, if I didn’t have such a fantastic GP.

I did visit other GPs in the practice and, although they were fine, they didn’t really cater to the emotional side. But it was kind of a very much like, you know, you’ve had CIN3 and now it’s been treated, so that’s fine. But they didn’t really understand the emotional side effects and the impact that it had.

Michelle feels doctors should refer patients to reliable websites and tell them about the...

I think from the point of view of a patient, it’s probably, if clinicians could refer people onto the websites that are helpful, and also give them lots of information, and I think let them know that it’s very normal to be very upset and very distressed at this time. I think don’t downplay people’s fears in terms of their emotional well being because although it might not be a hugely serious problem in terms of most people have it and are cleared, follow up, and are fine, emotionally it can have quite a big effect for a long time. So I think if people could understand not to downplay the emotional side of it, then that would be a massive help to patients going through the process.