Karen - Interview 05

Age at interview: 52

Age at diagnosis: 40

Brief Outline: Karen was diagnosed with melanoma in 1997. It came back in 2005 and she joined a clinical trial. Several times she has given extra blood samples for research purposes. She is happy to take part in any research into her condition.

Background: Karen is a 52-year-old events manager. She has no children and is engaged to be married. Ethnic background' White British.

More about me...

 In 1997 a mole on Karen’s foot was diagnosed as melanoma (a form of skin cancer). It was removed, but the melanoma returned in 1999 and she had another operation. She was given the all-clear in 2005, but only a few months later started getting stomach pains. It was discovered the cancer had spread  to her small intestine and other organs, so she was recommended for chemotherapy. She was offered a chance to take part in a clinical trial, in which she would be allocated at random either to the existing treatment or a new drug. 

 

Karen immediately decided to take part, and was disappointed that the doctors insisted she wait for a couple of weeks to be sure she was happy with her decision. She just wanted to get started, and she was pleased to be allocated to the group getting the new drug. In the first year, she had to go to hospital to be monitored every three weeks, then every three months. Now in 2009 it has just been changed to every six months. Karen feels lucky to be one of the few people who did really well on the trial and has survived.

 

Throughout her care she has often been asked to allow some of her blood samples to be used for research purposes. To her this is really not a big issue, and she is usually not that interested to read long information leaflets about it. Karen says she’s a professional in her own field, and doctors are professionals in their field. She is happy to trust them to know what they’re doing and to behave ethically, so she does not feel a need to ask a lot of questions about how the samples will be used. It is still right to be given the information and asked for consent, however. If she did not want to take part, she would feel comfortable in saying no, though there are few examples she could think of where she’d say no, apart from a trial which involved taking drugs she did not currently need (for instance to see if they prevented some condition she did not yet have).

 

Karen describes her reasons for taking part in the clinical trial as ‘totally selfish’- it was about her personal benefit, not about helping others. Giving samples is of less direct benefit to her personally, but it’s easy to do and she can see no reason not to. But even in this kind of research she feels that saying yes creates a bond between researcher and patient, which gives her a sense of being important to the research team. It also gives her back some sense of control, which is one of the first things you lose when you have cancer. It can also be fun and interesting to feel you’re part of a big international study. She advises others to take part in research if they feel comfortable and safe and they trust the staff, but if they have any doubts to stick with standard treatment. She would like more evening or weekend appointments so working people can take part more easily. 

 

Having cancer left Karen feeling that she had lost control. She feels taking part in research helped her regain control and fostered a stronger relationship with the team caring for her.

I think you feel - one of the things I think you feel when you’re diagnosed with cancer is your lack of control, your loss of control. You - I’m in a job were I control an awful lot of things, I control a lot of things that go on, I control a lot of people, a lot of processes, a lot of systems. And suddenly something is happening to you that you can’t control, and I think that is a horrible, horrible feeling. And I think that you have to build up a team around you that are sort of like Team Karen that are fighting for me to survive. And that’s your friends, it’s your GP, it’s the people at the hospice, the day hospice that I went to, it’s the people at the hospital.

 

And I think if you can build that up and feel as if all those people are rooting for you, I think that it makes you feel as if you’ve got a little bit of the control back. So I think that’s just a way of looking at it. I’ve probably not looked at it that way before, but it’s a good way of looking at it, that you’ve got a team around you helping you.

 

And I think you also need a mentor at the hospital. I think you need to build up relationships, and not just be a number, and I think that by being on a trial you end up being a bit more of a person and a bit less of a number, and I think that’s really important. And if I can do anything to help, like this interview, in order to help me get better treatment I will. If it helps other people, great, but I’m selfish and it’s me.

Karen has taken part in clinical trials for cancer drugs before, but would be wary of a placebo-controlled trial. She would not risk taking part in a drug trial as a healthy volunteer because her health is too precious.

Is there any kind of medical research you don’t think you’d take part in?

 

I wouldn’t take part in any medical research that was going to give me drugs that I didn’t need, so if somebody suddenly said, ‘Oh, we’d like to give you drugs to see if you don’t get arthritis’, I wouldn’t do that. I don’t actually - although I’m, although I desperately wanted the drugs for the cancer and I’m happy to take any drugs that are deemed necessary to keep me fit and well, I don’t actually like taking drugs. So tomorrow I’m going to have the flu jab. I don’t really want to have it, but I think it’s sensible to have it, so I’ll have it.

 

So things like sort of healthy volunteers?

 

No, no.

 

You wouldn’t go for any of those?

 

No, no, I wouldn’t at all. I think your body’s too precious; I think your health is too precious. And I think too many people throw it away too easily, because I was 40 when I was, just 40 when I was diagnosed the first time, and that’s terrifically young to think that your life potentially could be over. And to make yourself ill by doing drug trials when you’re not ill in the first place I think is not something I’d do.

Karen routinely gives blood and tissue samples when she is asked to at the hospital. She has melanoma.

And since then have you been in other research projects?

 

Well I think I have, but because I’m so happy to do them that at the hospital I’m asked ‘Will you do this?’ and ‘Will you give some blood for this?’ or ‘Will you do this?’ or ‘Could we take some tissue for that?’ that I just say yes, so I don’t, I couldn’t really tell you how many times, because it’s just as a matter of course anyway, and it’s something that’s easy to do, it doesn’t hurt, it doesn’t involve hospital stays, it doesn’t involve anything.

 

So they’ve taken pieces of the tumour, have they, to use in research or?

 

I really don’t know the answer to that one. The tumour that was taken from my bowel and the tumour that was taken – no, there was just the tumour taken from my bowel, sorry. The tumour that was taken from my bowel and the one from the liver was a biopsy to see what it was, so what that’s being used for I don’t know. I probably signed it at the time but was too confused to know what I was signing, so.

 

[laughs] Does that worry you?

 

No, not at all, as long as I’m alright. I have no real problems about what stuff’s used for once it’s taken away from me, so not a problem.

Karen did not know how her sample was going to be used and, because of previous experience on chemotherapy trials, did not want to know.

So do you have any sense of how they’ve used the samples that they’ve taken, what they’ve done with them?

 

No not really. The trial that I was on for chemotherapy I was kept fairly well informed about that, and for pure nosiness I read up about it on the internet when the trial results came out. But I found them quite shocking, and in a way quite upsetting at the number of people who hadn’t survived the trial, so I think going back to my plan A of not really knowing or wanting to know about it is probably the best one. I think some people would lap it up, but I’m not really interested. But it is good to know - it’s sad to know that so many people didn’t survive the trial regime, but it’s great to know I’m one of the survivors. And if I hadn’t done it would I still be one of the survivors? So... enough knowledge, but not too much.

 

Do you ever worry about if samples - I don’t know, I mean are the samples that you’ve given, do you know if they’re being kept long term for other research projects?

 

Don’t know, don’t care.

Karen thinks if people believe medical research is sensible, safe and that the staff are trustworthy, they should take part, whether it is a clinical trial or biobanking . But it's a personal choice.

I think you have to look at it. I think - we were talking about the placebos - and I think you have to look at is it sensible? Is it perceived that it is better for you to take part in a trial? Do you feel safe taking part in the trial? Do you trust them? And I think if you can answer all those positively, go for it. But I think if you have doubts, and there is a tried and tested way of treating your particular illness, stick with the tried and tested. I think it’s a balance thing. And I think to talk to people about it who have a modicum of knowledge, be it friends who’ve been through it or professional people, but you have to make your own decision in the end, and you have to be comfortable with your own decision.

 

And anything specifically about if people are approached about giving blood samples, tissue samples?

 

I think that’s personal choice. I think you’ve got to just make your own decision, and if you’re comfortable, again, if you’re comfortable with it, and you trust the people you’re with, and you feel safe with them, do it.

Karen would prefer doctors to use their expertise to guide her decisions, rather than just giving information and leaving it up to her.

The other thing that I found quite hard throughout, and this wasn’t just at the cancer centre but other places, is when you’re asked to make your own decisions. I do my job, I consider myself the expert at my job, and the doctors are doing their jobs, and they should be the experts at their jobs. And if they want to come to me for my professional advice, I’ll give them my professional advice, and I’d like it to work the other way on, but I feel that they just give you the information and tell you what, what your choices are and you really have to make a decision from there. And I think I found that really hard, knowing that you’ve made the right decision.

Karen never reads the information leaflets, and would like more guidance from doctors as to what she should do. But she knows other people would not feel the same way.

No, I felt the information was fine, but I’m not a person that reads instructions. I didn’t want information, I didn’t want instructions, I just wanted to get on with it. The other thing that I found quite hard throughout, and this wasn’t just at the cancer centre but other places, is when you’re asked to make your own decisions. I do my job, I consider myself the expert at my job, and the doctors are doing their jobs, and they should be the experts at their jobs. And if they want to come to me for my professional advice, I’ll give them my professional advice, and I’d like it to work the other way on, but I feel that they just give you the information and tell you what, what your choices are and you really have to make a decision from there. And I think I found that really hard, knowing that you’ve made the right decision.

 

No, if they want to take some blood or want to take some tissue sample, or anything, fine. Get on with it; I’m happy to do that, if it means that I get what I want.

 

Do you remember signing consent forms?

 

Yes I do, yes, yes. I’ve always signed the consent forms. And I’ve always felt that the hospital has been very anxious to make sure that I had all the information and that I signed all the forms and I did everything properly. I wasn’t bothered about that, but that’s the way I work anyway in the rest of my life, so I don’t suppose that’s any different.

 

Do you sometimes feel that actually with things like tissue samples and blood samples that we go through too many consent procedures, or do you think it’s about right?

 

I think it’s difficult, because I think so many people are so different. And I do think I’m probably right at one end of the scale, and I think it’s hard to consider the other people at the other end of the scale when you don’t know how that feels. So its fine for me, I don’t mind. But then there are other people that would mind dreadfully.

 

you said you don’t sort of like reading too much about the rules and stuff, and when you get information leaflets about different research projects do you sit and read them fully?

 

No [laughs]. No, never.

 

Do you think the doctors would be shocked by that?

 

I think those that have sweated blood in order to write them in the middle of the night might be a bit upset with me, but they have to do it, and I think it’s the same as things in my job - you have to do them. Whether they’re needed or not is irrelevant. You know you have to do it. So they might be upset, I don’t know. I think they probably know me well enough by now to know how I’d react anyway.

Karen was in a trial for melanoma which also involved banking blood samples. She describes her reasons for taking part in research as 'totally selfish'.

I still go to the hospital regularly. It’s just been changed to six months, four years later. It has been three months. I went during the first year - the trial lasted a year - during the first year I went every three weeks. I had blood tests taken, I think more regularly than that but certainly every three weeks, but those were the terms of the trial. So I think that by joining in with the trial I actually got better looked after than, or more regularly looked after than I would have done had I not been on the trial.

 

Yes, I suppose that brings us on to sort of reasons for taking part in research. What would you say?

 

Totally selfish, totally selfish reasons.