Jo - Interview 22

Age at interview: 33

Age at diagnosis: 25

Brief Outline:

Jo was diagnosed with CIN3 in 2001, aged 25, and treated by LLETZ. She was surprised to be treated at her first colposcopy appointment but happy with the care she received. She had CIN3 again in 2007, aged 31, and was treated again by LLETZ.

Background:

Jo lives with her partner and is a service delivery operations manager Ethnic background / nationality' White British

More about me...

Jo attended regularly for cervical screening but often had unclear results so had to have the test repeated. Her mum always encouraged her to attend for screening because she’d had cervical cancer herself.

In 2001, when she was 25, Jo’s test results showed abnormalities and she was told that she had CIN2 and some CIN3. At the hospital, she was shocked to be examined and given treatment there and then. She felt that it all happened very quickly and that she’d been unprepared for it. She hadn’t wanted to be treated at her very first colposcopy appointment but was persuaded to by her mum.

Jo was given a LLETZ and, following treatment, had annual follow-up appointments. About six years later, in 2007, when she was 31, she had another abnormal test result. She was diagnosed with CIN3 again and given another LLETZ. She had a follow-up appointment six months later. Her second follow-up appointment was another six months on and then she went onto annual check-ups.

Jo would have liked more information after treatment about healing, especially about what she should and shouldn’t do. She felt that a phone call from a nurse would also have been helpful and an opportunity to ask questions.

Jo said that, these days, she feels relieved when she receives a normal test result – she still sometimes has unclear results and the test has to be repeated. She received a lot of support from her mum and said she was happy with the care she received from doctors and nurses.

Jo felt shocked and unprepared to be treated at colposcopy but her mum persuaded her to go ahead....

To be honest I was really, really shaken. Really, really shocked because I didn’t expect to have the treatment there and then. And I’ll be absolutely honest, I just burst into tears and said, “Right that’s it, I want to go home. I just don’t want to do it.” I felt like I wanted to be more prepared and go back to the doctors knowing what was going to happen. Rather than, it was just, all happened really quickly.

However, you know, to be honest if it wasn’t for my mum saying, “You know, just have it done, it’s over and done with then.” I probably would’ve walked out the doctor there and then if I was on my own. But, you know, I went ahead with the treatment.

They used the term the Loop Excision, I think. And they did explain to me that it was going to be taking away, you know burning away the cells. That there was going to be follow up after that, a follow up check.

They offered the choice to view it all on some TV screen, and I said, “I don’t want to look, don’t want to know.” I mean, to be honest I’m quite the person that doesn’t really want to know the detail. If, you know, if you need to do it what you need to do, then that’s fine.

Jo said she has been treated twice for CIN3 and has always been very open about it.

On the first treatment I was in a long term relationship. And, you know, I’ve always been very, very open. They knew about it and that was fine. The second time I had treatment I wasn’t in a relationship, so that didn’t come up. My current boyfriend, he’s aware of the history. And he’s obviously, you know, he just wants to make sure that I’m okay.

Jo used to delay going for cervical screening because she was busy at work, even though her mum...

They often, you know quite often come back and said they didn’t have enough cells and I’d have to go back. And I didn’t always go back probably when, you know, they were supposed to because I’d always had work commitments.

Like I say, it was only really because my mum, because about 12 years ago I think she had cervical cancer, well she had an element of it, and she had to go into hospital for a few days. But she has been quite on my case and on my sisters case about, you know, making sure that I make the time to go and have check ups. Unfortunately, it’s like a lot of things, it’s not until you have a bad experience, or you know someone who is very close to you that has that, that you actually sit up and you take it seriously.

And really to look back now and think, you know, because I didn’t get a report in time, or you know I didn’t meet some deadlines, that you’re putting that over having to have a serious check up is ridiculous. It’s absolutely ridiculous.

Jo knew what to expect when she had to have another LLETZ but that didn't make it any easier. The...

I had the treatment. And then I was on annual check up, so I had annual check ups after then.

And then I think about five or six years after that, I had another abnormal smear. And obviously after then you think, “Right I’ve,” you pay more attention to it. So again, yeah I went with my mum. I went back to the hospital, had the second treatment. And then, because I’d had the previous bad result, they put me on a six month check up. So I had the six month, I think I had two six months, and now I’ve just gone onto yearly’s again.
 
You don’t comprehend having to go through that a second time. I mean having gone through it the first time, I guess you go into it knowing what’s going to happen. Doesn’t make it any better that you know what’s going to happen now. And I was comforted by the fact that, you know, he did say, “Look, well, we’ll do it again in six months because you’ve had this previously.” I knew they was having, you know, they was keeping an eye on me.

So to do that another six months I was like, you know, no absolutely. And I’m more than happy for that. Again, I’ve got to say the doctors and nurses are all really, really lovely. They make you feel very, very comfortable. But then again I didn’t have any sort of follow up from that other than my next smear test. And I think particularly having gone through it a second time, I think a phone call three or four days or even a week afterwards, to just sort of check in really.

Jo's main concern was being treated and healing well. She only wanted more information about...

I think, certainly at the time, to be honest I didn’t really care. I don’t know if that’s too strong a term. But it was just like, this happened, you know. I want the treatment, how do I go about making sure I heal quickly.

It’s only been in the last sort of three years I guess, two or three years, that I started having a look on the internet and actually, you know, looking at different schools of thought as in, if you’re sexually active, does that increase your chances of having problems. Not eating green vegetables. You know, potentially could that contribute to your vulnerability of that.

So yeah it’s only really been in the last couple of years that maybe I’ve looked on the internet about it. But again it’s only really been where I have had a recall for unclear results or, you know, where I’ve had the second lot of treatment.

Jo had a busy, demanding job, which made her get back to normal life very quickly after treatment. At the back of her mind, though, she knew she was expecting her results.

I’ve been very fortunate, stroke unfortunate in that I’ve got very, very, I’ve had very, very demanding jobs. I’ve had to do, you know, very, very busy jobs, working seven days a week. So it was very easy for me to throw myself into work and get on with it. That said, you do sort of, at the back of your mind, know when you’re supposed to get the results of those tests back, in six weeks or so. And particularly in the latter years, I’ve been quite hot on chasing up, for my results. But yeah, I think throwing myself into work has definitely helped.

Jo had a lot of discomfort and phoned a nurse for advice. She was told not to douche and the...

That leaflet was given to me. I read it, but there were certain things that I’m doing that were, which were “don’ts” within that leaflet. But I didn’t understand the terminology.

It wasn’t until I was having problems that I phoned up, and they was like, you know,
“Are you doing this?”
“Well yeah I am.”
“Well it says you know not to do that.”
“You think we can understand the terminology?”
“That’s what it meant.”
So absolutely. Definitely, definitely feel that a follow up conversation, because then, it’s sort of also, you know that someone’s there for you to ask questions to. You may not even feel comfortable within, you know, when you’re at the doctors, talking to a
male doctor at the time, it may not be the right time.

What kind of things, if you don’t mind me asking, what kind of things were they, that you were doing? And the kind of terminology, how was it explained so that maybe these leaflets could be improved as well?

Yeah, I mean definitely. I mean it was specifically about douching. I think it said, you know, not to douche, and I was like, “I’ve got no idea what that is.” But I was in the bath, and because I was having a lot of discomfort, I would, you know, sort of wash them in water over my lower region. And then found out that that was absolutely not what should happen. So it’s like, “I haven’t got a clue.”

I mean, and at the time I was living at home with my mum. I wasn’t au fait with the internet, it wasn’t something I actively went on. I mean absolutely now, you know everything’s changed, and like I would do a lot more research about what I should and shouldn’t be doing. But that was the specific term that sort of added to my discomfort afterwards.