Sam - Interview 20

Age at interview: 22

Age at diagnosis: 22

Brief Outline: Sam was diagnosed with CIN3 in 2009 at the age of 22. Over the course of two years, she had two LLETZ treatments and four or five biopsies. She found waiting between appointments very worrying and would have liked more information.

Background: Sam is a full-time mother and housewife and lives with her partner Ethnic background / nationality' White British

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Sam was diagnosed with CIN3 in 2009 at the age of 22. Over the course of two years, she had two LLETZ treatments and four or five biopsies. She found waiting between appointments very worrying and would have liked more information.

More about me'
Sam had her first cervical screening test when she was 18 because she’d had some abnormal bleeding. The result was normal and she had her next test three years later at 21. This time the result was abnormal and she had a colposcopy appointment two weeks later.

When Sam attended the colposcopy clinic, she was treated there and then by LLETZ. Two weeks later, however, she received a letter telling her that she had unclear margins and CIN2. Sam was worried about her results and was given another appointment in three months.

At her next appointment, Sam was examined and had a biopsy taken. The results showed she had moderate cell changes, and she was asked to attend the clinic again in six months.

Six months later, Sam was given another biopsy and, again, results showed that she still had moderate changes. Her doctor advised her to stop smoking and, with the help of nicotine patches, both she and her partner quit smoking.

Sam’s next appointment was six months later where she was told that she had CIN3 and, again, would be treated by LLETZ. Sam said that, in all, 1½ years had passed by and, throughout this time, she had been unsure about what had actually been wrong and why she had to keep going back to the hospital. Sam felt that her doctor had not explained what she had, why she had to keep attending the clinic, and never answered her questions or listened to her concerns. She wondered if she would have received more information had she been older. Anxious, she made an appointment with her GP and was referred to another hospital where she would be seen by a different consultant.

Sam said that, in this appointment, her new consultant explained what CIN3 was and answered her questions. Throughout this time, now totalling two years, Sam said she worried that her condition could be getting worse.

Over about two years, Sam had two LLETZ treatments and, between these operations, four or five biopsies. She found the wait between appointments extremely worrying and would have liked more information. She said she felt much happier with the care and information she received from her second consultant, and advised other women to ask questions and voice their concerns. She also recommended the Jo’s Trust website, which she found extremely helpful and supportive (www.jotrust.co.uk).

Sam had abnormal results several times and found this very worrying. Waiting for results was...

I had the three month biopsy done. And that again, it come back as moderate, and that’s when I did start sort of ringing and asking well why am I still going through it, why isn’t it going? Aren’t you going to do anything about it? And I sort of just got, “Well we’ll write to you in due course to see what’s happening again.” So they wanted to leave it six months this time. It’s the wait more than anything, you know, so such a long thing to go through because you have to wait three months, then six months, and you have to wait six weeks for the results. And the waiting is really hard.

So I went for the six month one. And there she did another biopsy, and I can remember a couple of, because I haven’t had to wait long for my results at all, they were really quick and again it was like two weeks and it came back moderate again.

And because you get like, you know, from the screening programme you get that letter first before you get the letter from your consultant, so in a way that worries you a little bit. You know, why haven’t I heard from the consultant? So you’re ringing up, and they’re, “Just wait for your letter.” Or ignore that letter they say, to tell you.

And I went back again, and she did another biopsy and everything, and then for some reason I don’t know why but I got transferred to another consultant. And as far as I know he was a bit higher in the hospital, a higher consultant. So I thought right, a bit of a fresh start. I’m going to go in and I’m going to ask the questions that I want to ask and try and see if I could find out, because it was a year and a half that I’d been going through it and still got all these abnormal cells and everything. And it really was affecting me, I was worried, really worried.

Sam found the Jo's Cervical Cancer Trust website brilliant because of the information and support from other women going through something similar. She never felt alone or awkward asking questions.

It [Jo’s Cervical Cancer Trust website www.jotrust.co.uk] was brilliant. Absolutely brilliant because they’ve got a board where it’s got just all the information on from the earliest CIN1 to actual cervical cancer. And it’s got, it’s really good information. It’s nothing scary. So it will tell you what CIN3 is, how they treat the different types of treatment. What the treatments are, how you’ll be afterwards. It’s just got everything. And I’m in touch with the girls yourself, it’s like you’re actually talking to someone that actually, just finally knows what you’re going through.

It’s been a life saver. I’ve been up in the middle of the night and you’ll go on, and you can guarantee there’ll be someone on there, up in the middle of the night as well, stressing, so you can help each other.

But it’s good to go through it with someone. I know it’s horrible because I don’t wish it upon anyone, but you don’t feel so alone. Because I think over the past year and a half, before I found Jo’s, I think I did, I just felt like, am I sort of making this worse in my head? Am I exaggerating? Am I a bit of a hypochondriac? Do you know what I mean? Because, you know, I didn’t know how to react and I just felt so on my own. Even the doctors were, “Oh it’s nothing to worry about.” See what I mean. Yet you do, you worry so much about it, it’s unreal.

And that’s, I think that’s the worst bit about going through it. It’s not nice going for colposcopies, smears and treatment and stuff like that, but I’d rather do all that every week than have six months of worrying. Because that’s the worst part, is the waiting. The waiting does sort of eat you up sort of thing, just waiting and not knowing. When you finally do know it’s that, “Oh, thank God.”

You never felt belittled, as if, “oh,” I’ve got a right, I’ve got a question to ask about what colour the discharge sort of thing is, do you know what I mean? And you don’t feel nervous about asking them or, “Is it normal for my discharge to be this colour after treatment?” “Oh yeah, that’s fine,” or, “Oh no, maybe you ought to check it out with the doctor or something.” You never feel nervous or anything to ask any question.

And I think that’s what I liked about it. No matter how much or how little you’re going through, so some girls on there with CIN1, you was all the same no matter what. And there was some that were going through or had beaten cancer, cervical cancer. And no matter what, they’d not go, “What you moaning about, you’ve only got CIN1?” It’s not like that at all, no matter what, you can go on there and you’ll find some advice from someone that’s probably going through the same. So that’s what I liked about it.

Sam's partner doesn't often know what to say when she feels emotional. When he started going to...

I turned away while he [doctor] was doing the treatment, but my partner watched him do the treatment. So when we got back home he was like, I think he helped me more because he knew what I’d been through, because men can be sort of….He never knew what to say and we’ve only been together two years, and this started just before I met him. So all our lives, all our relationship, it’s been based on this worrying stress and everything. So I think he finally understood as well.

It’s good that he’s been there from the beginning, if someone had come in half way through and I’d have had to try and sit down and try and explain. But he’s also one of those people that you don’t know what to say, or you know if I cry or something, he’ll just sort of sit there or he’ll put his arm around me but he won’t say anything.

So I do think even going to the hospital’s been brilliant because we can actually sit and talk about it now, because he knows what’s going off.

Sam believes that girls are having sex at a younger age so cervical screening should start at...

I think if it’s brought to girls younger, I’d say from at least 16, 17, because girls are having sex a lot younger, and people, girls are having babies at 13, so why can’t we have the smear earlier? Because when it starts it’s transmitted by having sex, so I don’t understand what the problem is from lowering the age.

Because I think maybe they’re turning a blind eye. I don’t know but girls are having pregnancies at school, whether they have the baby or not, so that means they’re having sex. That means they could have the HPV. And that’s what I don’t understand why it got raised to 25 and why they were having such a hard time trying to get it lowered. Because I know something about the health, something the government health thing, they’ve not put their vote to it now. They’ve put their vote against lowering it. And I don’t understand why, I really don’t.

Sam was very worried when she continued having abnormalities but wasn't given treatment. She had...

I went back three months later. She [consultant] did a biopsy. And that come back still moderate changes, but they didn’t seem bothered at all. But I was bothered if you know what I mean? It was really hard because they sort of, they do it every single day, so it’s like, to them it’s nothing. But to you it’s like a massive, massive deal. So I just kept quiet because you’ve got all these questions in your head that you want to ask, but when you’re there you don’t ask them.

So I had the three month biopsy done. And that again, it come back as moderate. And that’s when I did start sort of ringing and asking well why am I still going through it, why isn’t it going? Aren’t you going to do anything about it? And I sort of just got, “Well we’ll write to you in due course to see what’s happening again.” So they wanted to leave it six months this time.

It’s the wait more than anything, you know, so such a long thing to go through because you have to wait three months, then six months, and you have to wait six weeks for the results. And the waiting is really hard.

So I went for the six month one. And there she did another biopsy, and I can remember a couple of, because I haven’t had to wait long for my results at all, they were really quick. And again it was like two weeks and it came back moderate again.

…..And I went back again, and she did another biopsy and everything, and then for some reason I don’t know why but I got transferred to another consultant. And, as far as I know, he was a bit higher in the hospital, a higher consultant. So I thought right, a bit of a fresh start. I’m going to go in and I’m going to ask the questions that I want to ask and try and see if I could find out, because it was a year and a half that I’d been going through it and still got all these abnormal cells and everything. And it really was affecting me, I was worried, really worried.

Sam had abnormalities for nearly two years. Her doctor recommended she stop smoking. She and her...

He [consultant] did shock me in a way because he says, “Look you need to quit smoking,” he says, “because it’s not going to help you at all.” Which I sort of knew it wasn’t, and then I felt well they blame everything on smoking. You’ve got a cough and it’s smoking. You’ve got this and it’s smoking sort of thing. But it did sort of give me the jolt I think that I needed.

And I thought, “Oh I’m going to do anything I can to just end all this.” And I can remember, sort of well, he [partner] didn’t have much choice because I said, “Right, if I’m stopping, you’re stopping.” And I can remember we quit on our own for a week. And by the end of that week, I think we were really on edge. And I thought, “Well if I don’t get some sort of help, we’re going to end up smoking again.” And I think in a way I wanted to do it, just to prove that I could do it. Sort of go, “Ha, well I’ve done it, so well you do your part sort of thing.”

So I rang NHS Direct up, and we went to, it’s just around the corner I think actually. We only went a couple of times, and she’d talk about why you want to quit smoking. Well we really, really wanted to do it. And the different ways, and we went on the patches. My partner he was only on the patches for three weeks, and I think I was on them for six.

And we only went to a couple of meetings. I mean you could phone any time you want or anything, but we didn’t need that much help. I just knew that we needed something. And you could go every week, and blow into the tube thing, and if it comes up as zero, they know you’ve not been smoking. So that sort of makes you want to do it as well. You want to get to that zero, sort of thing. So, that was brilliant and we’ve not, I was on the patches for six weeks, and we’ve quit for nine months now.

Being listened to, having a treatment plan and being treated like an adult was important to Sam....

The last consultant I had, who I’m under now, is absolutely brilliant. I feel so much better with him and over the last, it’s been the best six, the last six months have been just been brilliant at the moment, well it’s less than six months I think because I only got transferred end of April. So it’s only a couple of months but it feels like six months. It has, it’s been, I feel like a weight’s been lifted off my shoulders, I really, really do.

And how was he different from the first one?

I think the main thing is he actually sat and listened to me. Because before if I tried to talk, he’d [first consultant] stop me half way, and he’d say what he thought. This consultant, I actually sat there and I actually was able to talk to him about well like, “Can you explain to me why this is still happening? And what will happen after?” And he gave me a plan of what would happen, if it still comes back abnormal.

And that made me feel they really do want to do something. Whereas with others it was just biopsies. Come back in six months for another biopsy. Come back, do you know? And that might have been procedure to begin with anyway, but my confidence was there, just totally plummeted really badly.

And this new one, he just sat there and he spoke to me. There was no cutting off and turning round and talking to someone else as if I weren’t there. And the nurse as well, she was like loads better. Well she was trying to take my mind off having the treatment when I was having the treatment and she was just talking to me and asking me about why I’d swapped hospitals and things like that. So you don’t really try and focus on what’s happening, she tried to take your mind off it.

I think all in all the whole experience, well it weren’t great, it’s not the nicest thing to go through, but I’ve been through worse and it was just so much better. And when he showed me the screen, the screen was there already facing you. Whereas before they never even offered to let me see it or anything. It was always turned away. The nurse explaining bits and this does this, and this is your coil and this is, and then he put the dye on and he’s shown you the bit that was infected. And just to see it, I mean I didn’t think I’d really want to see it but it made me feel like, well it isn’t that bad. It feels like a massive thing but looking at it on the screen, it isn’t as scary as you actually imagine it to be. It was a much better experience.

So I think that’s been a major thing for me, actually being listened to and people talking to me and giving me the information and answers that I wanted.

Because you feel, because you’re young as well, you’re sort of, I felt like they looked at me as if, “Oh young girl being paranoid again,” sort of thing, “She doesn’t even know what she’s on about.” And that’s how I felt. I felt like I was sometimes being looked down upon as if I was a kid. Because I’m not thirty odd or something, and maybe if I was a bit older I might have got the answers that I wanted if I’d asked them, because sometimes I even took my mum or an older friend with me just so I felt like I’d got that more bit of confidence to ask the question. But it still never really helped.

He actually spoke to me like an adult, as if I could understand, because he knew that I needed to know. Because I told him how mad it was driving me and what a rough time I’ve had over the past two years. And I think he understood, and he gave me the answers that I want the best that he could.