Interview CC22

Age at interview: 39

Age at diagnosis: 31

Brief Outline: Diagnosed with cervical cancer (Stage 1B squamous cell) in 1994. Radical Trachelectomy (first woman in UK to have a Radical Trachelectomy). 2 successful pregnancies after treatment.

Background: Housewife/part time student; married, 2 children.

She describes the side effects from her large cone biopsy.

They thought they might be able to treat the tumour with a large cone biopsy. Normally they just take a small cone but he tried to be fairly adventourous and take a big cone biopsy and hoped that he would be able to get clear enough margins around the tumour. But it was borderline. He said it wasn't safe to leave it like that, so that's why we had to go on for more treatment.

And after the cone biopsy did you have any side effects from that?

No just a bit of soreness and a bit of bleeding for a few days. But then apart from that it was okay and it just took a few days to recover from that, mostly from the anaesthetic really. I think I was off work for just a week after that.

She describes her experience of an intravenous urogram (IVP).

I had the intravenous urogram which is where they inject dye so they can see that the kidney function is okay and make sure there's no spread from the tumour into the kidneys. Mostly what they're looking for in all these tests are spread from the tumour, to make sure there's no secondary growth. Again IVP, a bit uncomfortable, hot flushy feeling from the dye that they inject and then having to lie still for xrays, uncomfortable but again bearable, not too unpleasant.

She explains how getting a second opinion led to her having a radical trachelectomy rather than a...

My husband's a doctor and he happened to be working at a particular hospital in London and he bumped into a registrar who worked for a consultant there, a gynaecological oncologist who, and the registrar said "Don't do anything until you've seen this consultant." So [my husband] arranged it through the secretary and asked if we could have a second opinion and he was willing. But we had to get a letter from the original consultant so we phoned his secretary and she arranged for a letter to be sent so that I could be referred to the new consultant in London.

We had a big meeting that time with several members of his team, the registrar, the Macmillan nurse, everybody was there and we had a very open discussion about what was available. And it came down to the fact that either it was going to have to be a hysterectomy or they had just seen a new operation carried out in France that they were willing to try here if I was willing to let them do it and that was the radical trachelectomy.

So how did you feel about that?

We felt we had nothing to lose because if it didn't work then they could still do the hysterectomy afterwards so we thought it had to be worth a try to see if it would give us the results that we needed.

She describes what is like having a radical trachelectomy.

Yes I went into theatre. They put all the monitoring leads on you, blood pressure cuff, a thing on your finger to test your blood/oxygen level and then you have a little needle in the back of your hand and have your anaesthetic and you just drift off to sleep and you don't know any more, nothing, until you wake up. You hear someone calling you in recovery. And my first recollection, I can still feel it now, is such a dry mouth. I had such a dry mouth it was unbearable and the nurse was putting some lemon and glycerine on little spongy sticks and wiping my mouth around to try and unstick it because it was so dry. And that's my first recollection of when I woke up. I wasn't in any particular pain. I had a pain control pump which you just press a button as you need pain killers and that keeps you fairly comfortable. I was obviously a little bit sore but nothing, I wouldn't say I was in agony or anything. I just spent the next day feeling, or the rest of the day really feeling just really woozy from the anaesthetic.

Her decision to have a trachelectomy was helped by the positive communication with her medical team.

I think the team at the hospital I went to were all very supportive and openly communicative. We had open, honest discussions and I think that was really important because we all knew what, they knew what I felt, I knew what they wanted to do and how they felt. And we were just able to talk openly about everything, treatments, diagnosis, I could say what I wanted to the consultant but I felt he listened to me and took my views into consideration which doesn't always happen I know. But the whole team were really good, they worked together with you as part of the team really. So yeah I think that was really positive.

She describes the birth by caesarean section of her two children after she had radical...

I didn't go into labour with my first one but he was born at 35 weeks. I had a strange pain and they weren't sure what it was so they said oh the baby's big enough, we'll just deliver him now to be on the safe side. And he was absolutely fine, didn't have to go to special care or anything. The second one, my waters broke at 36 weeks. I didn't go into labour but obviously I could have done having left it a few more, but you have to get to the hospital quickly because they have to deliver you before you go into labour, you can't let the womb go into labour after a trachelectomy. So we got to the hospital and they were there waiting, did the caesarean section straight away and she was fine as well and didn't need special care. They're both bonny babies.

She describes her recovery from her radical trachelectomy.

Yes I left hospital about 10 days after the operation. It's amazing how you think when you're in hospital you can do anything, but when you get home it's just going upstairs is uncomfortable or tiring and you just find yourself unable to do as much as you really thought you were going to be able to do. And so my, my Mother was there for support and my husband took some time off work the first week I was home. But I had to be fit and well for a week later because my sister was getting married so we got to the wedding so that was nice.

So that was something to aim for?

It was something to aim for and to get strong enough for. So sort of I took lots of rest, nice afternoon naps, things like that. And just to take it easy really. You can't do shopping, ironing, hoovering. You think you're going to but you can't. You just find it physically impossible for a few days. It doesn't last long, for a couple of weeks you have to really take it easy.

She describes how she felt during her two successful pregnancies after having a radical...

I suppose you don't feel as relaxed as may be, I mean every pregnant woman worries but you have that additional worry because there's a risk of premature labour. You have to have a lot more scans and you seem to constantly be at the hospital. You have some steroid injections to make sure that the baby's lungs develop quicker in case there's a premature labour. So it is I think a bit more nerve-wracking and as I say you do feel like you're at the hospital all the time. And the first pregnancy I worried from one appointment to the next about what's going to happen next because [son's name], my son was the first child born after a trachelectomy so nobody knew what was going to happen. So, but the second one it was a lot, I felt a lot more relaxed because we'd done it once so we could do it again, so it wasn't such a problem.

Her feelings of sexuality were not changed by having a trachelectomy.

I think the cervix being an internal organ it doesn't have such a role for me. I can imagine People with breast cancer it's a more physically noticeable part of you if you have to have a mastectomy but the cervix it's invisible really isn't it, it's something you don't see. So people don't look at you differently because they can't see that your cervix has gone so it wasn't a problem for me.

She recommends getting a second opinion about the treatments available and stresses the...

I think women shouldn't be frightened to ask for a second opinion and I think they should make their feelings on what they want to have done to them and what they want in life. I mean if a person is diagnosed with a tumour and they don't really want children then that's fine. But if you really, really want children and you're told you can't, then I think you should make it known and that should be taken into consideration. I think people should be a lot more open when they talk to consultants and doctors. I think people are frightened because they think they know it all and that they should be able to do what they want and I don't think that's the case. I think people should voice their opinions a lot more and to certainly insist on second opinions because somebody else might have a good idea. They don't know it all.