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Rachel - Interview 14

Age at interview: 36
Age at diagnosis: 35
Brief Outline: Rachel was diagnosed with CIN3 and CGIN in 2008, aged 35. She had a LLETZ and, shortly afterwards, a hysterectomy.
Background: Rachel is an accountant. She lives with her partner and two children Ethnic background / nationality' White British

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In 2007 Rachel had some bleeding between periods and then no period for the next two months. When she visited her GP she was also given a routine smear test because her cervical screening appointment was due at this time too. Shortly afterwards, Rachel received a call from her GP who told her that she had severe abnormalities and possibly cervical cancer. She would be fast-tracked for a colposcopy appointment. This news came two days before Christmas and Rachel decided not to tell her family until after Christmas. However, she was extremely anxious that she could have cancer.

At the colposcopy clinic, Rachel was given a LLETZ and assigned a cancer nurse. Two weeks later, she received a call from her doctor, who told her that she did not have cervical cancer but CIN3 and CGIN. She would need to attend a follow-up appointment six months later. At this appointment, Rachel had biopsies taken so the doctor could investigate the CGIN further.

After having a LLETZ, Rachel said she had very irregular periods, bleeding mid-cycle and bleeding after sex. When she discussed these problems and the CGIN with her consultant, she decided to have a hysterectomy. Rachel said, “I’d completed my family. I had a choice. I didn’t have to have the hysterectomy. And I thought well this will save me worrying every six months, thinking, ‘Oh my gosh, it’s going to come back or it’s not been detected in the first place.’ So I had a hysterectomy three days later.”

Rachel spent five days in hospital and, back home, did her best to rest as much as possible. She spent two weeks with her parents and said she went back to work after eight weeks. Physically, Rachel said she recovered well but, emotionally, felt ‘less womanly’ at first. She found Jo’s Trust website extremely helpful and supportive and wished she’d been told about it before she had her colposcopy appointment. She encouraged other women to attend for cervical screening and would like to see the screening age in England lowered to 20.

 

Rachel was shocked and upset when told she had CIN3 and possibly cervical cancer. Her partner...

Rachel was shocked and upset when told she had CIN3 and possibly cervical cancer. Her partner...

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I was called in and the doctor said to me, “Basically we’ve called you in, your smear test’s come back from the lab, and it’s severely abnormal.” And then he said, “To put it in perspective, basically, you can either have CIN1, CIN2, CIN3.” He says, “You’ve got, CIN3 is what your smear’s showing.” But he said, “Normally with CIN3 you’d get a letter just asking you to go for a routine colposcopy,” he said, “But they’ve deemed yours very severe, and they want to put you through a fast track clinic. They think it’s,” basically he said to me, “We think you may have cancer.” There and then.

And this was like two days before Christmas, three days before Christmas and the thought of just, “Oh my gosh.” You know, “Oh dear I’ve never even thought that this could possibly happen to me. I’m too young.”

Had you been really healthy before this?


Yes. I’ve always ate healthy, I’ve exercised, and I used to go the gym you know quite a lot, and never ever had any problems before. And they kind of put me in a little room, and this lady came to talk to me, and they were really good actually the doctors, because I was really upset. And they said you know what would happen. They basically told me that I would be going for a colposcopy and I would probably have some biopsies taken. And that was that basically. And they booked me an appointment there and then, but with it being Christmas, my appointment was booked for 2nd January.

So I then rang my partner who came and collected me from the doctors. And we were just terrible, it was just, you know, awful. And I was just crying and didn’t know what to think. I was told not to Google, which I didn’t. I went home and just lay in the bath and then [my partner] came back and he had a look on the internet, and he said, “Rach, it’s not that bad. A severe result is very treatable.”

 

Rachel’s parents helped look after her two young children when she was recovering after a...

Rachel’s parents helped look after her two young children when she was recovering after a...

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I got lots of help because I’d got a little girl who was just turned two and still in nappies. And I just thought I’m not going to be able to cope. I can’t lift her, I can’t do anything. And I was very lucky that I had the support of my family because I stayed with my parents for two weeks. And then I went home after that because I couldn’t do anything for myself. But I got help, you know, with things like changing nappies, with you know, I had somebody with me, constantly being able to help me when I needed.

 

Rachel says women shouldn’t feel ashamed if they have CIN or cervical cancer. She dislikes the...

Rachel says women shouldn’t feel ashamed if they have CIN or cervical cancer. She dislikes the...

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I’d say that there’s a stigma attached to cervical cancer and CIN, and pre-cancer. That you are promiscuous. And a lot of the websites, when you read about the causes of CIN and cervical cancer, it says, there’s a few things it’s like smoking, being on the contraceptive pill, being promiscuous throughout your sexual life, being promiscuous.

And it makes you think, it makes you feel a bit dirty. It’s like, and I think it has been known before as like the dirty cancer, and it’s just simply not true. It’s so not true. You can catch HPV virus from one sexual encounter. You don’t even have to have sexual intercourse. It’s from genital to genital contact, so if people look down on you and think that you’ve been a bit, you know, you’ve been sleeping around, it’s just simply not true. And I think that really needs addressing.

I think it’s, you know, I think ladies feeling ashamed that they have pre-cancer of the cervix or cervical cancer is just absolutely disgusting. I just don’t think anybody should be made to feel like that at all. It’s awful. And that there is a stigma attached to it, there definitely is. You know, you sometimes feel ashamed to say well I’ve had like pre-cancerous cells of the cervix. Because people think you’ve been sleeping around, and it’s just so not true. It’s so not true.

 

Rachel’s partner was very supportive and concerned. It’s been difficult because she hasn’t been...

Rachel’s partner was very supportive and concerned. It’s been difficult because she hasn’t been...

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I remember one funny thing actually, I did tell him that I couldn’t have sex with him for 18 months as a joke, and he believed me, which I should have kept up. But I didn’t.

No I was told obviously that there was to be no intimacy for 8 weeks, no 12 weeks I think. I hadn’t have dared anyway to go near, no way. And I remember the first time we got intimate afterwards, it was very scary. I kept checking that I’d, we’d not, that things were okay, and that there was no bleeding, you know. All that kind of thing. And yeah, it wasn’t particularly enjoyable, I’d say. And even now I find certain things quite, oh painful. And I have been back to see the gynaecologist and he said that’s because of the scar tissue and it will get better.

But there’s ways around kind of, you know, there’s certain positions basically that I find too uncomfortable, and basically yes it’s down to the scar tissue.

I did have, I would say that, I mean he’s been very supportive about the whole procedure and he was absolutely terrified when he found out that I’d got pre-cancer, or cancer as they thought at the time. He was quite, you know, you eat lots of fruit, lots of dark berries, that type of thing. He thought that he could kind of beat it that way. And he’s been very good. He knows what I’ve had to deal with and he’s been really, really good about it all.

And I think it has affected him, yes because obviously I’m not exactly, what can I say, I just don’t find sex particularly enjoyable at the moment. Which is obviously hard. But, sort of for him, I have been told it will get better and that is what I’m hoping. You can still be intimate in other ways though, you know.

 

CIN3 and CGIN are completely treatable, usually first time. Most women find the treatments painless.

CIN3 and CGIN are completely treatable, usually first time. Most women find the treatments painless.

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If you’re diagnosed with CIN, it is pre-cancer. It is not cancer. It’s completely treatable, and I think in 99% of cases it’s completely removed. The procedure that you have for CIN or CGIN is completely painless. I know in some women it does cause a little bit of pain, or you know they get infections afterwards, but it’s a simple procedure that requires a local anaesthetic. And it’s completely treatable and it is not cancer.

 

Rachel describes having a colposcopy and LLETZ. The local anaesthetic was a bit unpleasant but...

Rachel describes having a colposcopy and LLETZ. The local anaesthetic was a bit unpleasant but...

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I’d describe the colposcopy as a quite a simple procedure. What happens, you go into a room, you sit down. The consultant asked me about past health issues. He asked me about my periods, what pill I was on.

He then explained to me what was going to happen. He said, “You’re going to be sat in a chair with your feet in little stirrups.” He drew me a picture of my cervix and said that basically they’d found abnormal cells, my smear indicated abnormal cells and he was going to remove them with something called a LLETZ. I had a LLETZ with an extra top hat, as well, I don’t know whether it’s the same thing or not, I’m not sure.

And he said what will happen, it’s like an electrical current through a wire and they would like excise basically the bad areas. So I was asked to get undressed and go and sit in the chair. And there was a nurse who kept me occupied. She asked me lots and lots of questions about what I did, and blah de blah.

And he then had a look at my cervix with a telescope, a magnifying telescope and it was on a little screen, and he then put some solution, I don’t know what it was, I can’t remember, into my cervix, which then showed up the cells that needed the treatment. And then he explained to me that any bad cells would go white, and that happened quite quickly, the cells all turned white from what they could see.

And he then told me that what he was going to do was give me some anaesthetic and he was going to completely remove all of the bad cells. And then also take some of the biopsy to check that the margins, or basically to check that he’d removed them all. He explained to me about basically what clear margins meant. He said that if there were enough good cells around, then that would indicate a clear margin. So he then gave me the anaesthetic which, that was the worst bit. The anaesthetic’s the worst bit, and it doesn’t really hurt, it’s just kind of unpleasant shall we say. It’s not painful, it’s just peculiar.

Does it sting, because some..?

Yes a little sting, yeah, almost like a sting. It just kind of gives you a bit of a crampy tummy, like mild period pains. I wouldn’t say severe or anything like, nothing, it’s not hideous, it’s okay.

And then while he was doing the treatment, I could just feel like a little tugging inside, nothing, not painful at all. Just obviously, just didn’t feel quite normal, but it was, it was like a little tugging procedure. I didn’t feel any pain whatsoever, so I would say to people who’ve got to have it, not to worry. It’s not that bad at all.

 

Doctors didn’t know whether Rachel had cancer as well as CIN3. She told her partner just before...

Doctors didn’t know whether Rachel had cancer as well as CIN3. She told her partner just before...

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I remember being at my mother-in-laws and them giving a toast to kind of 2008 because they’d had quite a rough 2007, saying, “Well things can’t be worse in 2008.” And the thoughts were going through my mind was, “Oh my gosh, I’ve got cancer. I know I haven’t told them,” you know. “I’ve got, you know, how’s this going to happen.”

And then obviously I went for the colposcopy on 2nd January. And Mr. the consultant who’s name’s [doctor’s name], he was brilliant. He drew me a picture of what was happening. He asked me if I knew why I was there and I said, “Well I’ve got severe pre-cancerous cells.” And he said, “No.” He said, “It’s worse than that.” He said, “We think you have cancer.”

I felt bad that I’d hidden it from them. I felt bad that I’d not told them before Christmas. And I think they were a little kind of angry as well that I hadn’t. But also glad at the same time that I hadn’t as well. It was quite a mixture of feelings I’d say. And then I got a phone call within a fortnight from [hospital name], and they said that, they said, “I can’t believe it, I’m so relieved to tell you that it is pre-cancer, not cancer.” He said, “You,” he just said that he was amazed. He said, “But” he said, “The cells are of the glandular type also. So we would like to see you within the clinic again within six months, where they will take some more biopsies and check everything is okay.”

 

Rachel had just had her first vault smear. She was anxious beforehand, and was waiting for her...

Rachel had just had her first vault smear. She was anxious beforehand, and was waiting for her...

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There was a check up post hysterectomy at six weeks, no eight weeks. And he said that everything looked fine. He’d done a very good job. I’ve got a very neat line. And I was to go back in April 2009 for a vault smear, which actually, sorry I missed that out completely. I’ve just had.

I’ve just had a vault smear in April 2009 and those feelings all come rushing back. It’s like “Oh my gosh, what if it’s still there? What if they find cancerous cells in my vault,” and the worry.

I don’t think it ever goes away. I don’t think, you know, that the thoughts are always there that there’s something they’ve missed. And even now I’m waiting on results, and I think no news is good news. I’ve not heard anything yet.

 

The doctor suspected Rachel might have cancer, but was pleased to confirm after treatment that it...

The doctor suspected Rachel might have cancer, but was pleased to confirm after treatment that it...

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I went for the colposcopy on 2nd January. And Mr. the consultant who’s name’s [doctor’s name], he was brilliant. He drew me a picture of what was happening. He asked me if I knew why I was there, and I said, “Well I’ve got severe pre-cancerous cells.” And he said, “No,” he said, “It’s worse than that.” He said, “We think you have cancer.”

And he said, “But,” he said, “We’re going to have a look at you, and,” he said, “We’re going to remove the bad bits.”

So I got undressed. I got onto the chair, and he gave me the local anaesthetic and put the dye on. And the whole of my cervix turned white with the abnormal cells. And he did the LLETZ procedure. Which was completely painless. Didn’t hurt at all. I just felt a bit of pulling. I actually found the colposcopy okay. [Partner’s name], my partner fainted, which was….

But I was fine yeah. The nurse was brilliant. They talked me through it. They told me what was happening at all the stages. And, to be honest, it was such an anti-climax because I thought, “Oh my gosh, this is going to be such an awful procedure.” But it was actually, it was fine, it was fine. You know, it wasn’t the most dignified I would say, but it was okay. And then they explained to me what had happened.

And I was assigned straightaway a cancer nurse, because obviously they expected it to be cancer and I was put into a room with this lady who talked to me about what would happen if I had, if the cancer was confirmed.

And then I got a phone call within a fortnight from [hospital name], and they said that, they said, “I can’t believe it, I’m so relieved to tell you that it is pre-cancer, not cancer.”

 

Rachel decided to have a hysterectomy because she didn’t want to worry about recurrence or have...

Rachel decided to have a hysterectomy because she didn’t want to worry about recurrence or have...

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It was end of July and I went to see him in his clinic. And he said that, although the results had come back clear, because I’d got CGIN, they couldn’t rule out, although I was showing clear margins, what he said was the clear margins can show and they only, they basically check for a two millimetre clearance. But because of the nature of the abnormality in the first place, he couldn’t rule out that there were clear margins and then I would have then CGIN somewhere else within my womb.

And so then, due to me having the problems that I’d been having with periods, he thought it was in my best interests to have a hysterectomy. And plus also I’d completed my family. I had a choice. I didn’t have to have the hysterectomy. And I thought well this will save me worrying every six months. Thinking, “Oh my gosh it’s going to come back, or it’s not been detected in the first place.” So I had a hysterectomy three days later.

Again it was all very, very quick. Now the problem I’ve got is I’d just applied for a new job as well and I’d got it. So I had to go and see them and explain that I was due to have a hysterectomy and would they hold back the start date, and luckily they said yes. So I went in, like I said, three days later, and had the hysterectomy.

 

Rachel was anxious about having surgery because she’d never had it before. She didn’t...

Rachel was anxious about having surgery because she’d never had it before. She didn’t...

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How did you feel on the morning of going for the operation? Because had you ever had any surgery before?

I had my wisdom teeth out when I was 18. No I’d never had any surgery. I was absolutely terrified and I’m not good with hospitals. I had both my children at a local hospital. It wasn’t a big one, no big machinery or anything like that, it was, you know, all carpeted, so I was absolutely terrified, I really was.

And I was in the ward, and the anaesthetist came round and explained to me what was going to happen. She had a look at my hands and said that, you know, what kind of veins I’d got. And said what she was going to do, because I said I was absolutely petrified about the whole procedure. I wasn’t good with needles, anything like that. And she was really good.

And then the consultant came round as well, and told me what he was going to do. And it was okay. And I was second; I was told straight away that I was second on the list. I think I had to be in for 10, and I went down at one o’clock. And so they, although there was a little bit of waiting around, it went so fast. There were other people there that I’d met through the counselling session two days before. So I kind of built up a couple of friendships in the hospital.

...I remember being taken down for the procedure, and I was shaking that much about having the anaesthetic; the worst thing for me is having the needles put in my hands. And I was scared that I wasn’t going to wake up. And I wrote [partner’s name] a list of all, everywhere, you know all the health insurances and everything we’d got in case I didn’t come back.

And I remember going down and I was so sad and there was this little baby coming back the other way, who’d obviously just had a procedure. And I thought, “Oh gosh, you know don’t be so stupid. Little children can have horrible things done, and you know, you can do this.” And I remember being, lying there and they tried to put the, is it the canula into my hands and give me the anaesthetic, and they couldn’t find my veins. And they put a saline flush through and I was shaking that much that I was actually lifting off the table, that in the end they thought it was only kind to put me out using gas. Which is what they did. And obviously I just remember waking up.

 

After 2 weeks, Rachel could walk a bit more. After four weeks, she could do more around the house...

After 2 weeks, Rachel could walk a bit more. After four weeks, she could do more around the house...

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The first two weeks I really didn’t do anything, I’d probably go for a walk, kind of. I went for a walk every day, but literally 100 yards, then it was 200 yards. I’d say after the first month I was more able to do things like I was then at home with two children both under five. I couldn’t lift them. They got used to it. Not being, asking Mummy to pick up because she’d got a pain in her tummy. I mean they knew, you know they knew, they were really good actually. Oh, I can’t stress that enough, they were brilliant.

I’d say four weeks I felt able to kind of get on with my life again. Six weeks I was fine yeah, I was fine. And I went back to work after 8 weeks. But I know I was actually supposed to be off for 12, but I’d just started a new job so, I couldn’t kind of put it off any longer. They’d been anxious for me to start.

Ideally would you have liked the 12 weeks?

Yes. Yes, because mentally it takes a, you know, because obviously the physical side of it where you’re, you can’t lift, you can’t do anything. But the mental side was a lot worse. I think I said about, although I’d got my family, I hadn’t got those issues that I’d lost my fertility, you know, oh my gosh I’m never going to have children. I was very, very lucky that I’d completed that part of it.

But I wasn’t expecting how I was going to feel as, I felt less of a woman, I don’t know why. I think, I really don’t know why actually. I just did. And I felt that I had to make more of an effort, that I had to, you know wear more make up and I wore high heels. I’ve never worn high heels in my life. I’m a trainers girl. And I felt that I had to make more of an effort to feel more womanly. To, you know, I don’t know whether that was anything to do with hormonally, or whether that was just me perceiving it the way I did. I don’t know.

 

Rachel appreciates life more now and feels lucky to have her family. She was pleased her...

Rachel appreciates life more now and feels lucky to have her family. She was pleased her...

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I definitely appreciate my life. It sounds silly saying that, because obviously I appreciate life, but I realised how much my life meant to me. I realised how much my children meant to me and my family. And obviously my partner. I don’t take things for granted any more at all. I remember a lady posting something about, if you’ve got children and don’t do this, you know, be grateful, and it made me really think, really think, gosh I am really lucky you know. Although sometimes they don’t sleep and they’re naughty, I am so grateful that I have got my family and that, you know, that it just means so much to me.

And simple things like when I walk to work, I’m like really, really pleased about my surroundings, just being able to, you know, really appreciate where I live and where I’m from. And I just don’t take, I just feel extremely lucky that I’m here to be honest.

I think that I’m grateful that I had CIN3. And I think thank goodness I got caught, thank goodness I was put, thank goodness I went for screening. Thank goodness that I was put on the system; I was going to be monitored. That was such a relief to me knowing that they’d found something and I was going to be monitored for the next 10 years. I haven’t got this, you know, I’m going to be looked after for 10 years. I know that if they find anything it’s, you know, I’m going to be treated straight away. I knew that was, you know, that was always there. So that was a relief as well.

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