David - Interview 02

Age at interview: 58

Brief Outline: David was diagnosed with skin cancer 6 years ago in 2004. He has consented to both blood samples and tissue samples from his tumours being used for research.

Background: David is a geologist and is married with 3 adult children. Ethnic background' White British.

More about me...

David was diagnosed with skin cancer about 5 years ago, in 2004, and had surgery to remove four or five cancers. Three years ago, it was discovered the cancer had spread to his lymph system. He had further surgery to remove tumours from the lymph nodes in his leg, but unfortunately this was not successful, and he was told he might have only six months to a year to live. He was referred to a cancer research team at a specialist hospital to see if there were any clinical trials of experimental new treatments he could join which might prolong his life.

 

Since then David has been in several trials and other research studies. He has declined to take part in a trial only once, because of the likelihood that the new treatment would cause serious side-effects. He has been on his current drug trial for a year, and recently felt well enough to go back to work. Before that he was in a chemotherapy trial for 6 months. [Clinical trials are designed to test new treatments which seem promising but where there is not yet enough evidence on how effective and safe they are. You can read more about them on our website about ‘Clinical trials’ www.healthtalkonline.org/medical_research/clinical_trials].

 

When he started taking part in trials, the research staff asked for his permission to send off samples from his leg tumours for analysis. David does not remember whether he was asked for permission to keep the samples at the time he had the surgery, but was glad that they had been kept, as it was important for the research project. The researchers wanted to find out about the kind of proteins present on the surface of his tumour, because they think this may be one reason why some people respond better to certain treatments than others. David had no problem at all with this kind of research, which he felt could benefit both him personally and others in future. The tumour had already been removed, so he did not need any extra procedures.

 

He has also consented to extra blood being taken for research when having blood tests as part of his treatment. This is unlikely to have any direct benefit for him, but it’s easy to do and may help future generations. He has no worries about the samples and information about him being kept, as he thinks the chances of them being misused in any way are very small. He feels more people should take a relaxed attitude to tissue and blood samples being used for research, and sometimes thinks we have gone too far in needing to get people’s consent for every minor thing.

 

David would like to know more about the results of research, and about the detail of why it is being conducted and what staff are hoping to find. He has been able to get answers to most of his questions, but the information leaflets were not written in a way that made it easy to find what he wanted to know. He sometimes feels research doctors keep their patients a bit at arm’s length, whereas the research nurses are more informal and friendly. David thinks research ought to be seen more as a partnership or an exchange between participants and researchers. 

David has skin cancer. Samples from his tumours were examined as part of a study to see how...

Yes, well, when the tumours were taken out of my leg - and I’m not sure about the skin cancers, I don’t know what happened to those - but I know for sure that they kept samples of the tumour, of the tumours, rather, and when I then started to my treatment for, on the trials, they asked if they could send off the samples of the tumours to understand better the proteins. Because the big problem for them is understanding how different proteins react to the treatments, because there’s a feeling that there’s a key there somewhere, and that’s why some treatments work better with other people and not with others so, yeah. I mean it’s quite interesting, yeah.

 

So they were linking it to your individual results in that trial?

 

Definitely, definitely. They wanted to know before they started whether - on the first trial - whether the proteins on the surface of my tumour actually were the sort that they thought they could treat.

 

So again it was directly related to my treatment, I suppose, you know, there was possibly a direct benefit to me, yeah.

The written information David got was very like a contract. When he spoke to the staff, they made...

Would you have liked better written information? I mean, was it just that it was so dry and difficult to read that probably the information was there but it wasn’t understandable, or was it not even there until you asked questions?

 

No, it was there. It was there, but it was just in clinical terms, really. Yeah, I mean it was, and it was more like a contract than - it was saying what would happen, for example, if the trial went wrong and I needed treatment outside of it, you know, who would be responsible and what, if you like, laying out what their responsibilities would be, and would not be, you know? In other words I suppose it was a bit of a liability, a waiver to some extent on their liabilities. So it was, it’s a little bit daunting when you see it, because it was all steeped in technical jargon, trying to explain from a medical viewpoint what they were trying to do, but on the other hand not giving much away because they don’t want it to get in the public domain, and at the same time a contract with me so that I understood that I could say no at any time, but that I would be expected to do certain things if I stayed on the trial, and at the same time telling me what the different liabilities would be from their viewpoint.

 

Whereas when you talked to them, what happened when you talked to them?

 

Oh, much less of that. I mean, it was more personal when I spoke to them, but I had to ask the questions. You know, I had to say, “Well what are they doing with this? What is it they’re really interested in?” you know. “Well it’s the proteins” “Oh the proteins, oh interesting”, you know, “Oh yes, they’re on the surface of the tumour, and that’s what we need to know, because what we need to know is that the treatment is actually going to stop those proteins from working. It gets in, and it affects this gene, and it stops it dead.” And I found out all things like that, the real detail, the stuff which I found fascinating, yeah? Maybe other people wouldn’t be interested.

David donated blood to a worldwide biobanking project.

And with the blood, that was a slightly different thing, because that’s gone off, that wasn’t related to me. That was a general study, and I signed it, I think two or three times now, that they can use part of the blood for the research. Now I could withdraw from that at any point, I don’t have to continue with it, but that, and that’s gone off, that goes off to somewhere in California, I think. It’s a big study that’s going on there that is taking place worldwide, I think. I don’t really know, I can’t remember now - they did explain it to me – but I suspect again it’s to do with this business of looking for evidence of the cancers in - what do you call it – metastasis. I seem to remember something about that.

David believed that it is through research that we make progress, including clinical trials and...

I mean in thinking about it, one hears doctors, researchers making appeals to people’s altruism, you know, “do this for other people for future generations”. Was that part of your thinking?

 

I think it was, yes, I mean I don’t have anything to lose. If the side effects destroy my longer term health, which is quite possible - I mean because that’s why they’re looking at the way I react to the side effects - it’s not going to be, it’s not going to have a great consequence on my life if it messes up my organs, say ten years down the road, because I won’t be here to worry about it. But for somebody else on a medical trial where they’re looking forward to a long life, I would say it’s very important for them to understand that. But with me I was just looking at it in the short term. And yeah, I mean my father had a, quite a severe heart condition and he took part in several medical trials and was pleased to do it. And I thought the same, you know, I thought, “Well, I don’t really have anything to lose - okay I’m not going to just accept anything they tell me, but on the other hand I’d be happy to help out, particularly if there’s a chance that it might be beneficial to me.”

 

So for me there’s always an element of research in everything I do and so I, it doesn’t frighten me when I hear people want to use tissue and blood and things like that for research. That’s how we make progress. And it is to the overall benefit of mankind, so good, I’m glad about that. And if I can get some benefit out of it as well, well, there’s a double bonus, yes.

David felt he would get better care for his skin cancer if he took part in research. His father...

So it’s not so much cynicism. It’s more a quid pro quo, isn’t it? I mean, you scratch my back, I’ll scratch yours. And one of the things I’m very conscious of is that I’m getting better care than if I hadn’t have joined the trials, because I’m being supervised much more closely. For example, I’m pretty sure that I wouldn’t have got any scans at all until I was pretty ill, had I not consented to join the trials. And it certainly wouldn’t have become apparent that I’d had, that the tumours were spreading. That only came to light because of the fact that they wanted me to join the first trial. So, and I noticed the same when my father was very ill, and this would have been 10, 15 years ago, that his care was much, much better than perhaps we could have expected had he not consented to join the various trials. 

David believes the media's main motivation is to profit from news so they present sensationalised...

What do you think about the way that the media presents things like that, those sort of issues about…?

 

I don’t think they understand what they’re talking about half the time. I think they make, they’re far too quick to sensationalise it and make money out of it themselves. I mean I think that’s the real problem, that people don’t understand that the motive of the media is to sell news, and so the more sensational they can make it the better it is. And half the time, I mean it’s like this business of confidentiality - it’s just nonsense. I mean if only people understand, understood how much money it’s costing the health service, they would run a mile. 

David would not like his body to be dissected on television, but otherwise he cannot see any...

Let’s talk a little bit about the tissue and blood sample ones that you’ve been involved in, because that’s kind of different really, isn’t it? There’s no real prospect of personal benefit with those ones?

 

No, no that’s pure research and again I don’t have any problems with that at all. I don’t see why there’s even any fuss about it. I really don’t understand people when they get all precious about it, because I mean, if you’re dead, you’re dead, and it’s only a tissue sample for heaven’s sake. I mean, why worry about it? So I don’t have any problems at all.

 

Have you ever thought about whether you would give tissue or organs for research after you die?

 

I would willingly do that, actually, but I sort of haven’t thought about it since I was about 32 years old because, as I say, I nearly died of Hepatitis and nobody wanted to know about blood or anything after that. I think it might have changed a bit but – no, I don’t have a problem with that, I mean, what’s going to happen? I mean most people these days are cremated, so I mean what’s the difference between being cremated and allowing maybe your organs to be used. I wouldn’t like the indignity of being dissected in public like that German guy did recently, I thought that was terrible, yeah. I mean - and like used to happen with medical research perhaps when they robbed graves. But if you consent to it I don’t see a problem. An organ, specific organs I wouldn’t have a problem with.

 

Yes, because I think one of things is brains, that there’s a bit of a move to try to get more people to agree to allow their brains to be looked at because then they can build up more information about things like Parkinson’s and Alzheimer’s if they’ve got healthy brains and, you know.

 

Mmmm, do you know, I’d be quite happy to take part in something like that. I don’t see – again, for me once you’re dead you’re dead, I mean that’s it. It’s either burnt or it rots, one of the two, so I think if you can put it to good use. And I think we’ve all got it somewhere in us the survival of the species, deep down inside us, you know, there’s that, there’s that need to help the overall survival, which I think is what drives it all.

David can't remember if researchers will track his medical records in future, but thinks it would...

With the blood sample ones, do you know if they’re going to link it back to your medical records in future?

 

Do you know, I can’t remember. I wouldn’t be surprised. I mean I wouldn’t have thought any of this would be of any use without being able to link it back to the type of cancer that you suffered from, so there must be an element of that. I can’t see how it would work otherwise.

 

Yeah, okay.

 

Although this is for metastasis, the blood one, as far as I know, so yeah, it must be linked to the medical record, yeah. Because they need to know the timing, they need to know the, you know, the fact that you’re suffering from cancer and - yes, so there must be an element of that, even if it’s anonymous.

And that doesn’t worry you?

 

No, not at all.

Taking part in clinical trials and biobanking made David feel that he might get better care...

I suppose as a message for people that are being asked to take part in the studies, I would encourage them to do so, partly because it’s of benefit to mankind, you know, to improving the treatment that everybody gets, and also I think it has benefits for the - in some cases - for the people that are taking part in the studies, because if they join medical trials, for example, they may just be lucky and they may be able to benefit from something 5 or 10 years before anybody else. And I think also that they become part of the team, almost, and they may end up getting better care as a result of that. And that’s, if you like, the payback for joining the trial. And I don’t think that’s a bad thing. But I think for me personally, even if that wasn’t available, I’d still do it from a more, from a caring viewpoint, from the viewpoint of improving things for people in the future - for my family, for other people’s families. I mean, that’s perhaps the way to look at it.

 

And the same with tissue samples, I guess?

 

Oh I think any kind of samples, blood, tissue or medical trials related to drugs, whatever, I think the same sort of thing applies, I think. I mean, giving tissue samples, or blood samples, doesn’t really cost you anything, because they’re normally linked to the treatment that you’re already having, so it’s not as if you’ve got to go into hospital for special surgery or to have extra blood taken. That, I think, would probably put most people off, but if it’s just being done as part of the treatment that you’re already having, then it’s almost unnoticeable. 

David thought the nurses were friendly, but the doctors seemed to ‘keep people at arm's length'....

In terms of the message, or the way that staff talk, I think there’s a tendency amongst the consultants, and particularly the consultants and the doctors, to try and keep you at arm’s length. You try to get to know them better and talk to them on first name terms, and they always reply “Mr Clark”, and you can see them pushing you away, trying to keep you at a distance. And I think that’s a mistake. I think that they would get a lot more out of people, they’d be a lot better off if they spoke to people and tried to make it more friendly, more personal. The nurses tend not to be like. Once you get to know them, they’re much more outgoing, much friendlier, but as soon as you go in to see the doctors, I think they’re trained to keep you at arm’s length, which is a shame, I think. Because that sort of stops that conversation about, “Well, why are you doing this trial?” you know, “What are the benefits?” and things like that. And, you know, if you make a remark they don’t respond, and you think, “Well, what are they trying to keep from me?” I think if they were more open, and tried to explain things a little bit more, and that would help a lot, I think.