Celia - Interview 12

Age at interview: 67

Brief Outline: Celia took part in a randomised controlled trial comparing different periods of radiotherapy for lymphoma. She was would have preferred the shorter course; she was allocated to the longer course but took part anyway.

Background: Celia is a retired health visitor. She is single. Ethnic background/nationality' White British.

More about me...

Celia was diagnosed with lymphoma in 2002. After chemotherapy had failed to reduce the size of her tumour, she was offered radiotherapy and invited to take part in a randomised controlled trial to test different levels of radiotherapy. Standard treatment in her local hospital was to give radiotherapy every weekday for a month, and this would be compared against giving it every weekday for two and a half weeks.

 

Celia felt it was important to take part in research that might benefit lots of people, especially if it could be shown that having a shorter course of radiotherapy was just as effective as a longer course. So she agreed to take part. She hoped she would be in the group receiving the shorter course, but in fact she was allocated to standard treatment. She did consider dropping out of the trial at two and a half weeks, so that she could have the shorter course anyway, but decided it would damage the trial if she did that, so she continued to the end.

 

In some ways, she wishes she had dropped out after two and a half weeks, because she believes the longer course has probably contributed to some lung damage she has developed (bronchiestasis and fibrosis). The lymphoma has since spread to other parts of her body, and she has found that she is exceptionally sensitive to radiotherapy. She was told she would need five sessions of radiotherapy to her salivary glands but in fact only two were needed. However, no-one has been able to confirm to her that her lung damage was caused by the radiotherapy, and it may also be because of another condition she has called Sjögrens syndrome, an inflammatory auto-immune condition, in which the body attacks its own moisture-producing glands, such as the tear and salivary glands. In any case, she has no regrets about taking part in the trial, and would take part in another one if offered.

 

Celia suggests other people thinking about a trial should take part if they possibly can, as every small contribution can help improve treatment. She herself has since become involved as a patient representative on a study group for the National Cancer Research Institute, because she believes it is important to involve patients in research decisions and wanted to find out more. Her advice to professionals is to make sure everything is explained very clearly and simply, both in person and in writing.

Celia wishes she had withdrawn from the trial. She has since found that her system seems to be...

And they asked me if I’d like to go into this trial where I would either have the, what they considered the normal treatment of every day for a month, or every day for two and a half weeks, except for at weekends, of course. And [coughs] it would be, you would have no choice. It would be - what’s the word? I’ve forgotten.

 

Randomised?

 

Randomised, that’s it. It’d be randomised so that I would be in one or the other. Of course, I was hoping I’d be in the two and a half days [weeks], but unfortunately I was in the full month. Previously, the consultant had said to me that some centres use the two and a half weeks as their normal standard treatment, and it did occur to me that perhaps I could drop out of the trial at two and a half weeks, and then I, you know, I’d get what I wanted [laughs]. But I didn’t do that. I carried on and had the whole lot.

 

Now, I do regret it now that I didn’t stop at two and a half weeks, because I’ve discovered since that my lymphoma is extremely sensitive to radiotherapy, because I got trouble with my salivary glands last year, and they swelled up, and they discovered there was lymphoma in them. But I already have Sjögren’s Syndrome which was affecting the salivary glands, so my glands don’t hardly produce any saliva anyway. But they swelled up. And so eventually, my consultant said, “We’ll try some radiotherapy.” So they put me down and I think it was supposed to be, as far as I remember, five sessions of radiotherapy. I went for the first session, and that night my glands swelled up even more and became extremely painful, and so I was supposed to go back the next day for the next treatment and they told me not to come to - by the morning they had, the pain had gone away so they told me they’d leave it for a bit. And eventually, I think it was about a week later, I had a second dose and luckily there were no bad effects that time. But the next day the glands were completely flat, so I didn’t need five sessions. It worked in, in two. And I mean the consultant couldn’t believe it when he saw me, how well it had worked.

 

So it’s only with hindsight now I think if I had had the courage to stop after two and a half weeks, I probably would have been perfectly all right. And also I wouldn’t have the lung damage which I’ve got now which, you know, is due to the radiotherapy. So I’ve got bronchiectasis and pulmonary fibrosis. I get very, very breathless, and I feel if I’d stopped at two and a half weeks I probably wouldn’t have been so badly affected.

 

And have you talked to anybody about how far that was related to the, the treatment?

 

Well, they’re a bit cagey about saying that it’s [laughs], it’s related to the treatment. They say it might be and it might not be. But I know it is [laughs].

 

FOOTNOTE' The radiotherapy Celia describes for Sjögren’s Syndrome took place after the trial and was unrelated to it, but it is this experience since which has led her to think that she is very sensitive to radiotherapy. This is why she feels it might have been better for her to be in the trial group having only the two and a half weeks of radiotherapy for the lymphoma.

 

Sjögren’s syndrome is an autoimmune condition, in which the body attacks its own moisture-producing glands, such as the tear and salivary glands. In some cases, other organs of the body are also affected, including the kidneys, liver, pancreas, lungs, blood vessels and brain.

Celia argues for more government research funding. She feels drug companies tend to fund research...

Well, yes, I mean I think more money does need to be put into research definitely. When you think of all the money that they waste on Trident and wars and all the rest of it. You know, I just think there’s so many more important things in life. And more money does need to be put - and, you know, they, they rely so much on the charitable organisations, Cancer Research and all the different charities - which are great and we need them, and that’s all right, because that also spreads the word to ordinary people about research, when they hear about what the charities are doing. But I still think it’s the government’s responsibility. And they have the access to the really big amounts of money.

 

What about drug company-funded trials? Do you have any worries about that?

 

Yes, I mean obviously, because they’re only interested in making money, as far as I’m concerned, which is okay, again, if they do get a breakthrough and, and, and come up with some really good treatment. But the trouble with them is that they put money into providing treatments for the same diseases. In other words, they just change, you know - for instance look at high blood pressure. There’s so many different treatments for high blood pressure, and, and we don’t need them all, do we? As far as I know we don’t need all of these different treatments, and they only go in for new treatments for the same disease because they can make more money out of it. 

Her GP asked her permission to send monitoring information about her to the trial staff. She has...

I hope they will tell us the results because I would be really interested to know. They have been in touch with my GP since to find out how I’m going on, so they’re following my progress, and presumably they know the illnesses I’ve now got to cope with. And it’ll be interesting to see, you know, if anyone else is in a similar situation.

 

Are you actually going for follow-up appointments with them where they ask you what your health is like now?

 

No, no. I just had a letter from the GP saying she’d had a query from the people doing the trial, and was it all right for her to give them information and I just said, “Yes.” So that’s, that was it.

 

Okay. So they’re not contacting you directly.

 

They haven’t done, no, no.

 

When did the trial actually happen? Which year was that?

 

When I entered it was, it was the very beginning of 2003. It might have been the end of 2002, because I had - it must have been the end of 2002, because I actually started the course on the first, first of January or the second of January 2003. It was the month of January I went.

 

Do you know how long the trial is going to be running?

 

No I don’t.

 

So you don’t know when you might expect to hear results?

 

No, no, but now that I’ve thought about it I might ring up and try and find out.

 

Did they say anything to you in the information they gave you at the start about whether you would get feed-back on the results?

 

I can’t remember now, and I can’t find the stuff. I don’t know whether I kept it or what. I can’t find the original information I had.

 

And what would you say to health professionals about why it’s important for people to have results of trials?

 

Well, I think if they’ve been good enough to take part in it, then I think that, you know, if they want to know the results they should be able to get them. A lot of people, of course, don’t, don’t want to. They’re not interested. But I would certainly like to know what’s happening. Yeah.

Celia saw an advert to join the Consumer Liaison Group of the National Cancer Research Institute....

Yeah, I’d had so many bad experiences in my treatments and I felt that - well, I wanted to know, really, how research, how research was being conducted into cancer treatments. And I saw, in one of the journals I get, there was an advert for consumers, patients, to join the consumer liaison group which is part of the NCRI, which is National Cancer Research Institute, I think. So I applied. I rang up and asked them what it entailed, and so I joined the consumer liaison group. I really wanted to go into - they have study groups, and each study group has two or three consumers in it, but mostly they’re research scientists, doctors, nurses, professional people. And of course I wanted to go into the lymphoma one, or the haematology one, but they already had enough consumers in those, so I ended in the complementary therapies group. And I must admit, during my treatments I tried every complementary therapy under the sun [laughs]. So I knew a little bit from that point of view about them so, so I went into that group. And that’s where I’ve stayed.

 

And what do you do?

 

So - it’s a good question, really. Sometimes I wonder if I’m, if I’m any use at all, but when we have our meetings, any issues that come up we simply give our own experiences and our own opinions, as patients on these, these issues. That’s about it really. Some of the people are involved in research, even the patients, but I’m not. But they don’t seem to mind that.

 

Mm, so.

 

I just give my opinion as a patient.

 

So do they bring kind of research proposals to the group or--?

 

Yes, that’s right. Yeah. Yes, research proposals are brought and discussed within the group and then it’s decided whether they can, pass them as, you know, let them carry on, sort of thing. 

Celia's message to others asked to take part in a trial is to look at it seriously and see if you...

Well, I would say look at it seriously, and see if you can possibly take part. Obviously some are a little bit more daunting than others. I feel the one I took part in, it didn’t really involve a tremendous risk, say, and perhaps others may be little bit more risky, but I would say look at it seriously and see if you’re able. And if you’re able do take part because it all, every little helps, to improve treatments.

Celia felt well-informed herself, but as a lay representative she knows people often find trial...

Well, I felt that the way that they did it with me was quite acceptable. Obviously they need to put things in language people understand, and make sure that all the information is given to the patient both orally and in written form for them to take away, that they’re given them time to think about it, and that, you know, the truth is told to them at all times.

 

And from your perspective on the consumer panel, do you have views about how research and trials are organised more generally?

 

…Well, from other people’s experiences I know that the information given isn’t always good enough. Some people have found that, that they didn’t, they weren’t told enough, and again that it wasn’t written in language that people could understand. There was, there’s quite a lot of criticism in the group about how the sort of language used to explain the trial to the patient.

Celia was relieved when the trial finished and she did not have to make the daily journey. She...

And when it stopped, when the treatment stopped, how did you feel at that point?

 

Okay. You know, I was just glad I didn’t have to make the journey every day [laughs]. I felt all right, yeah.

 

You didn’t miss going?

 

And - no, not really, no. Although there were, there were some nice aspects to it, because that January was the sunniest January I ever remember, and my appointment was always in the afternoon, and I used to come back about four o’clock and there was always a beautiful sunset over the Mersey, you know, coming back along by the river and that. And I did enjoy that bit [laughs].

 

It was nice. But apart from that, no, I was just glad that, you know, I didn’t have all that travelling to do. And also that it hadn’t made me feel bad like the chemo did. And that, you know, I felt again I was really annoyed about the chemo, because I had all those horrible side effects, and it hadn’t done me a blind bit of good [laughs].

 

[Laughs] Yes.

 

Luckily, I didn’t lose all my hair. It just went a bit thin, but, you know, I had the upset stomach and diarrhoea and constipation, and all the other horrible things you have.

 

You’ve obviously got some regrets about having taken part - or is regret too strong a word?

 

No, no. I don’t regret it at all. No, I - I suppose I do regret not having the courage to stop at two and a half week, perhaps, but then again I might have found that that wasn’t such a good idea. Because this lung damage I’ve got it might be caused by the Sjögren’s, not by the radiotherapy. I’m just assuming that it was.

 

So looking back are you glad you took part in the trial?

 

Yes, oh yes, I’m glad. Glad I took part. No problem.

 

FOOTNOTE' The chemotherapy Celia refers to was not part of the trial. She joined a trial comparing different periods of radiotherapy after chemotherapy had failed to improve her lymphoma. Sjögren’s syndrome is an autoimmune condition, in which the body attacks its own moisture-producing glands, such as the tear and salivary glands. In some cases, other organs of the body are also affected, including the kidneys, liver, pancreas, lungs, blood vessels and brain.