But for the trial they wanted to see which drug affected the different tumours the best and whether all women would need both drugs or whether some women could just have one drug and therefore have less toxic chemicals put into them.

So, my routine was going to be that I would have 3 cycles of Taxol, then they would do debulking surgery. Then I would have 3 cycles of Taxol mixed with carboplatin. And then finally I would have 3 cycles just of carboplatin.

As I explained to you, it was all offered at the same time as I got the diagnosis, which was quite difficult. But we didn’t agree to it that day, we took the information away and thought about it and I asked a lot of questions about it. About how it would affect me. At one point I wished I hadn’t done it because I thought that I would have finished the chemotherapy quicker ‘cos this was 9 cycles as opposed to 6, but the oncologist said given my condition she would probably give me nine anyway. And so, you know, it’s good to go on a trial and to help other people. That’s really what I wanted to do but that’s why I did do it but they didn’t pressurise me, they were fine. But it was there and you could do it or not do it and it wouldn’t affect you either way.

Another thing that you mentioned was that you took part in that trial, so the computer I assume chose which treatment you were going to have.
I would presume, yeah.
How did you feel about that, not being in actual control yourself of which treatment you had?
I was kind of told by the doctors and nurses that both of them were fine. I think at that point when I agreed to go on the trial I didn’t perhaps know that Taxol carboplatin at that time was the gold standard, which I would have been offered if I hadn’t gone on the trial. I would have been offered it anyway, which I know not every hospital does that. Maybe it does now because there was new Government kind of introductions to treatments of ovarian cancer. But I would have been offered it at my hospital so therefore post, I was delighted at reading ‘oh I’m on that one, great.

I don’t know how I would have felt if the other one had been chosen and I found that I wasn’t on the gold standard treatment, I don’t think I would have been quite as happy, perhaps.

And I did feel uncomfortable about turning down the offer of going on a trial. And maybe it was very selfish because a lot of people have said to me Well people have got to go on these trials because otherwise, you know, theres no benefit to others. And I know that’s true but at the time I had to think about myself and my family, and one of the things my son had said at the time was Whatever you do mum don’t lose your hair,’ and I just felt it, I don’t think it’s always taken on board that there are a lot of issues about how you’re perceived that might be affected by the treatment. And for me that was just one of the issues really.
So were you able to discuss with your consultants about which drugs to have so that you wouldn’t lose your hair?
With the carboplatin I didn’t lose my hair, but if I’d gone on the trial and I’d chosen, I’d been chosen to go on the particular arm with the combination, I would have lost my hair. But they just felt it was because of that reason, but I just felt that first of all I’d been diagnosed very early and I didn’t feel it was appropriate in my particular situation to, to be having both drugs. And also I felt that if it did come back I needed to have something in reserve if it returned, so. But I had three weeks to think about it.

I go back every three months for a check up. I am taking part in OVO5, which is a clinical trial. So each time I go for a check up I have a blood test taken. This is not standard treatment, the standard treatment is that when you go for a check-up they will think about testing your blood if the symptoms are returning, but being on the clinical trial I have my blood tested each time for the CA125 but neither myself nor my consultant knows what the result is, it goes to the clinical trial centre.

If my blood, my CA125, starts to go up, I will be randomly allocated to one of two groups, one of which will go onto chemotherapy straight away as soon as the tumour marker starts to rise, and the other group won’t, it will just carry on with the standard treatment of waiting until the symptoms return. This is to see which group survives longest but it’s also largely concerned with quality of life, to see if there is a difference.

So if you’re not randomised to further chemotherapy would you be told that your tumour marker was raised or not?

No, no.

Certainly I was asked to go on a trial later on, a follow-up trial to do with the CA125 marker, and I think the trial was basically, not telling women what the CA125 marker was.
Oh yes I’ve heard about that one.
And I actually refused to do that one. I thought I would be the kind of person who would not be happy not knowing what the CA125 marker was. And I mean I was, I like to help out whenever I can, the hospital in any way, and I would be quite keen to do it, but knowing the kind of person I am, I thought no, I’m not going to be able to cope with that. I need the reassurance of my, of my count.

So we looked at another trial, but this time the trial was taking a sample and testing it in the laboratory to see which of the chemotherapies affected it. So we did that but I couldn’t cope mentally with not knowing the results, and therefore I had to, we used our medical insurance to actually find out the results so that I could see what my cancer reacted to and which one I was going to have. So I had a combination drug and in fact that suited me really, really well.

Because in the laboratory they offered to take, the laboratory test offered to take a piece of the tumour and to see what would affect it, and I wouldn’t have that, you know, I said to my surgeon I said ‘I do not want a knife to go into the tumour’ so I waited until I got some ascites and then a very nice man who normally does the antenatal ladies and does the amniocentesis, he used his long needle to take out some of the ascites from that and that was sent away and I had great faith in that. I just didn’t want the tumour cut, mentally I couldn’t cope with that.

So when it was sent away to the laboratory it came back and it doesn’t say ‘this will work’, it says ‘this might be helpful’ and one of the combinations, which was the first one they tried on me, was gemcitabine and treosulfan, and that’s the one that I had for fourteen lots every other week.

I didn’t, I felt involved to a degree in treatment plans but because I agreed to go on this trial, and I think I agreed to go on the trial because it’s a case of it’s good for future, but I also agreed to go on it because I was kind of told that you tend to get good treatments if you go on trials because the drug companies are actually paying for it. I was kind of told that as well. So I just kind of, you know, I wasn’t, I was almost prepared I suppose, to put my life in their hands;

My follow-up appointments are quite specific for five years because I was on a trial, and for the first two years I got follow-ups every two months, the third year every three months, and now into my fourth year so it’s every four months, and from about six months time it will then be six monthly. But I have been told that if I hadn’t been on a trial it would have been six-monthly now already, so I’m quite pleased I was on the trial because I’m getting regular check-ups.