Judith - Interview 24

Age at interview: 45

Brief Outline: Judith agreed to take part in a randomised trial comparing different intervals of chemotherapy treatment for non-Hodgkin's lymphoma. She was allocated to the standard treatment and responded well.

Background: Judith is an NHS administrator. She is married with 1 adult stepdaughter, and a12-year-old son. Ethnic background/nationality' White British.

More about me...

Judith was diagnosed with non-Hodgkin’s lymphoma in 2008. When she had a lymph excision operation she agreed to take part in an experimental study of a new technique in anaesthetics, which involved using a fibre-optic camera down the throat. The aim is to get a better view of the larynx and reduce the incidence of sore throats after anaethesia.

 

The week after her diagnosis by the surgeon, she saw the oncologist who asked her if she would be willing to take part in a randomised trial. One group would receive the standard chemotherapy treatment (rituximab) every 3 weeks for 21 weeks, and the other group would receive it every 2 weeks for 14 weeks. Both groups would have 8 treatments, and PET scans would be used to monitor the effectiveness of the different treatment regimes.

 

Judith felt it was not a major decision to take part, as she had to have the chemotherapy anyway, so she agreed on the spot. She was hoping she might be allocated to the group having the shorter course, so she could get it over and done with by the summer, when her step-daughter was getting married. However, she was allocated to the standard treatment group, which is what she would have received anyway if she had not agreed to the trial. At the time of the interview, she was still in the middle of treatment. She has tolerated it well, and in fact it seems to have had the side effect of improving the symptoms of another condition she has, systemic lupus erythematosus. She feels she would have tolerated the every 2-week regime well, and at the time was a bit upset to be allocated to the standard treatment group, but now she does not mind.

 

Judith feels research is very important, and if the trial shows that every 2 weeks is better she feels she will have helped save other people from several weeks of treatment, and perhaps reduced their chances of having a relapse. Although at the time of making her decision she felt she had enough information and understood it well, some questions have now started to occur to her, which she plans to ask the consultant next time she has an appointment. For example, she knows that the information talks about the impact on survival but she is not sure whether this means she will be followed up for many years to come. She is also interested in the way different individuals respond to chemotherapy. She herself seems to have responded very quickly – a lump in her neck which had grown 50% in a week before treatment had disappeared by her third treatment. She wonders if she were not on the trial whether she would have continued to have the full 8 treatments or would have been taken off it earlier.

 

Judith feels confident she can trust staff running a trial within the NHS, and she believes her care would have been just as good if she were not in a trial. She would be more wary of a trial funded by the pharmaceutical industry, because she would be worried about the financial incentive to make money out of a particular drug.

At first she didn't know what questions to ask and sat there 'like a nodding dog'. Now she feels...

He said that, he said exactly that - that they didn’t know and they were looking and the research was purely to see whether the two weeks was better than the every three weeks. I think he might have said actually indications are showing that the two weeks is better, but again because I didn’t know, you don’t know what questions to ask initially, and I’m just sitting there like a nodding dog nodding at everything he says, saying, “Yeah, yeah, clinical trial, that’s fine. I’ll sign it.” And I guess that’s why they say you can go away and think about it. But I don’t, I just, there’s questions that I want to ask now that I’m further into it and perhaps feel a bit more confident. Because when you’re first diagnosed, you just want it gone and just say, “Just start. Whatever you need to do, just do it now and get it gone.” But now, I wouldn’t say I was completely casual about it, but I’m bit more relaxed and a bit more confident and want to ask, ask some questions about it to see what they mean about lifespan, or whether it’s relapse, or what, what it is.

 

Would you feel able to talk to them in between appointments? Is there someone you can talk to?

 

There is. There’s a Macmillan nurse there who I’ve got her direct line and I can just leave a message and she’ll call me back, and that’s no problem at all.

 

But I don’t feel I’ve got anything urgent enough to phone in between appointments, but I know she’s there. And I mean I have phoned if there has been something. I had an infection and that was very quick, and you phone the on-call haematologist and they just have you straight in to deal with it. But apart from infection, it can wait. It’s really not a problem. And she’s always about and she’s happy to talk. 

Consenting to the trial was not a huge decision. Both groups had chemotherapy, one every two...

I think my appointment was probably about ten days after diagnosis. And it was at that time my husband and I went up to the oncology and they brought it up then and he just did a diagram for us and told us what was involved. And there again, I thought, “Oh, two weeks, that sounds good.” [laughs] But this actually finishes at the beginning of September.

 

Were you happy with the amount of information and how easy to understand it was

 

Yeah. It was, you know, like I say I didn’t have to decide whether to have one particular treatment compared to another. It was just a timing thing, and it seemed, you know, it didn’t seem like a huge thing. I’m having the same treatment, and I’m responding well to it and I think that’s - so I didn’t feel that I had, you know, had to come home and mull it over or think about it or anything like that.

 

So did you decide on the day?

 

Yeah, yeah.

 

Sorry.

 

Well, I told them I wanted the two week one but he said, “Well, it just goes into a hat so we have no control over that at all.” And then the research nurse phoned in the afternoon and said, “Unfortunately, it’s three weeks.” I said, “Oh okay, never mind.” And I was really quite upset about it, because I really thought, you know, my stepdaughter’s getting married in August and I thought, “Well, it would just be nice to get it all done.” But a lot of people have since said, you know, I know a lot of people in the NHS and they’ve said, “Actually, it can be quite gruelling.” But I’ve responded so well I don’t think it would have been for me, but anyway, it doesn’t matter, and I am on the three-week one and I’m completely reconciled with that now. So it’s not a problem.

 

And when you were thinking about whether or not to take part, what were the main factors that made you want to take part?

 

Well, research, I just think it’s so important, and they’ve already done the trial in Germany and it’s showing that the every two weeks is, is perhaps better.

Judith was asked about a trial of a new fibre-optic camera to be used by the anaesthetist during...

Well, that was on the morning of my operation. I went in the night before. It was a little bit more vague, because it was just, the ward was hotter than Hades, it was just so hot. And I hadn’t slept well and the bed was uncomfortable. And they’d said, “You mustn’t have anything to eat or drink after midnight.” And then in the morning it turned out I was third on the list, so they said it would be about half one by the time I had the operation [laughs]. Then the breakfast trolley came round and I thought, “Oh God.”

 

And I had a headache. And then she, the, I think she was a registrar anaesthetist suddenly appeared and said that they were doing a clinical trial on a new device to, it was a camera to put down your throat to see whether, the improvement in sore throats afterwards. And also it gave them a better view of the larynx. And so I quickly read through it and said, “Oh yes, that’s fine.” Because I thought, “Well, if I’m under an anaesthetic anyway, frankly I don’t really mind.” And if it’s something that gives them a better view of everything, then if there was any problems anywhere they would, they would be able to pick it up. So again it wasn’t a huge decision to make. But she did go through it all and there’d already been a study in Pakistan and Gloucester [laughs], which seemed odd, but yes, and she said that it, she’d, so far it seemed that things were improving. But it just seemed such a minor thing that frankly I didn’t mind at all.

 

What about the timing of that? Because that sounds like you were feeling quite vulnerable already at that point. Was it a good time to raise that or should it have been discussed at a different point?

 

I think, I think that was fine for what it was. If it had been something, you know, more, that I felt would have had more of an impact than that. But like I say, if you’re under anaesthetic anyway it can’t be that different to what they’re already doing. They’ve already done it on eight hundred people so, yes, it was fine. And then she came after the operation when I was just coming round and said, “How’s your throat? Is it sore?” And it wasn’t sore, so that was it.

 

So that’s partly what they were looking for?

 

Yes.

 

What else were they looking for?

 

Because they said it gives them an improved view of the larynx and the throat and that type of thing.

 

And are there any other safety concerns that they’re testing while they’re doing this?

 

I don’t think so, no. I think it is just a new piece of equipment that they’re trying out.

Drugs are a huge cost to the NHS. By reducing unnecessary treatments, trials can make savings as...

I guess so from a, a money point of view I know these drugs are hugely expensive and if we continue the NHS as we want it to continue, you know, any savings that can be made on these thousands and thousand of pounds into new breast cancer drugs and all sort of things, I think that’s only a good thing. And the less time you have to be on chemotherapy and go through this, because it is like putting your life on hold for six months and then it, you know, going back to work, how you’re going to feel afterwards, you know. So the less time you spend doing all of that I think would be fantastic.

A relative with multiple sclerosis was upset to find he'd been in the placebo group in a trial....

What would you think about placebo trials? Would you be willing to even think about it?

 

Well, my cousin’s husband has got MS and it’s very, very progressed now. But I know he’s been on, he was on a clinical trial and he was on a placebo, and I think he was really miffed about that [laughs].

 

That’s quite interesting, so that experience in your own family might make you think--

 

Yeah.

 

--differently about it?

 

Yes, it would. It would. I don’t think I’d like it at all, actually.

 

That’s interesting. Even though you’re, I mean most of the, what you were taking part in research for was to benefit other people really rather than benefiting yourself, apart from the two weeks, obviously.

 

Yes.

 

But there’s something different about a placebo trial for you.

 

Yes, definitely, definitely. Especially if cancer is involved. I think that, I think that’s an issue as well. If it was to test in-growing toenail creams or something like that then, you know, or something - I mean it’s very painful but, you know, something that wasn’t life threatening. But as soon as somebody says, “Cancer” it changes everything. You just, it’s like having an intruder in your house, you just want it gone and out and finished with, and I just want to get on and not have it. I mean, I’m not in a state of complete panic or anything like that. I have complete confidence that this will sort it out and it’ll be gone. But then again there’s so many different types of cancer, and I know some people are on this ‘watch and wait’, so maybe, maybe that would be different.