Thomas Round [TR]
Liz Chipchase [LC]
[TR] I'm a GP in London and academic researcher at King's College, with an interest in early diagnosis of cancer. Today I'm having a chat with Liz. Hi Liz?
[LC] Hi there. I'm Liz Chipchase. I live in Cambridge. I'm a retired research scientist, and I was lucky enough to take part in a trial called the BEST3 Trial, which introduced me to the Cytosponge and led to a very early diagnosis of cancer for me.
[TR] Thanks Liz. We're having a little bit of the chat about your experiences in the trial taking part as a patient. Just tell me a little bit of your [background], obviously you said you're a research scientist, tell me a bit more about you and your health. Did you have any health problems before you took part in the study?
[LC] I was actually feeling very well when I took part in this study, but I do have a longstanding history of acid reflux, which I've had for about 40 years. It had just become part of life. I took proton pump inhibitors to keep the acid down, and occasionally I'd have an endoscopy. But everything was always all right. It had never really impinged on my life, I was just careful with my diet.
[TR] You said you had endoscopy. How many endoscopies had you had before?
[LC] In the 40 years that I'd had it, I've had an endoscopy approximately every 10 years. I've had three endoscopies in fact.
[TR] That was fine, nothing had been found?
[LC] Nothing, no, they'd all been fine.
[LC] I was not in the slightest bit worried.
[TR] So that would be a Lansoprazole, was it? Lansoprazole medicine?
[LC] I was taking Lansoprazole at that time.
[TR] That's okay. Commonly used medication for acid reflux or as a GP would prescribe commonly and then how did you find out, did you get a letter in the post or a phone call? What happened?
[LC] I had a letter from my GP surgery telling me that this trial existed and saying that I was a suitable candidate because I had acid reflux and because I haven't had an endoscopy recently, and would I like to take part. It described the Barrett's Oesophagus, which is what the test is looking for and I'd never actually heard of Barrett's oesophagus. I'd actually worked on cellular transformation. So I was quite interested in the idea of cells inside the oesophagus changing as result of acid treatment and becoming precancerous. The actual cancerous aspect of it didn't affect me. It didn't impinge on me at all. I was just interested in the fact that cells in the upper part of the oesophagus could change into something that looked more like something from lower down in the digestive system. So I just thought, well that's interesting. I read a few papers about it and thought I will take part. I'm fine. I'm obviously not a candidate for this, but everybody needs a control in their experiments.
[TR] Had you taken part in research studies before or was this the first time you've been invited to take part?
[LC] No, I'd taken part in a blood transfusion experiment where they were looking at intervals between donations. I'd also given my name to the NIH Department in Cambridge who were actually interested in people who would want to volunteer for trials. So my name was on that, but I don't think that had anything to do with me being selected.
[TR] When you've got that letter then did you think, okay, this sounds like you felt excited, and interested and would take part?
[LC] That's exactly so the other thing was that it was so simple. It only involved going to your nurse, your GP surgery and it was extremely simple tests to understand. When somebody's offering to let you test out a drug or something that's fit, requires a bit more thought. But if all you've got to do is swallow a pill that's attached to a string that's going to be retrieved. That's not a problem. It's so easy.
[TR] So you sort of said, okay I'm going to take part. Did you go to ring and book your appointments?
[LC] Yeah. I rang my surgery, made an appointment with a nurse for about a couple of weeks time. I think the appointment was for about half an hour and I would say a good half of that was involved in filling in all the consent forms. It was early on in the trial and the nurse was actually being trained at the time. So I had two people to help me do this and I swallowed the pill on its little string, which I was slightly worried about the string, but in fact, it's such fine cord that you hardly notice it's in your throat while you're waiting for the capsules was dissolve. Well, it takes seven-half minutes precisely to dissolve and then the nurse whisks it up. So it goes through the whole length of your oesophagus and out of your mouth. It's at that point, I must say that you realize calling it a cytosponge is little bit of an anomaly because it's definitely a cyto-scourer. You can feel it all the way back out, but it's not uncomfortable and it's very, very quick. So it's out of your mouth before you've realized.
[TR] So that was a quick experience coming out. How did you find that process? You've obviously have endoscopies before, how did you find that compared to things you'd had before?
[LC] It really doesn't. It's infinitely less than endoscopy. It's infinitely less than going to the dentist and having a tooth removed. It really is painless.
[TR] You felt fine and you were kind of finished off?
[TR] Then how did you feel after it and say, oh, I've taken part, are you left thinking more about it or?
[LC] No, I just walked home, had a cup of tea to clear my throat and I thought absolutely no more about it at all. Until I got a letter a couple of weeks later saying that the tests had come back as positive for Barrett's. But it was a very soothing letter which said this is no real consequences, but we would like you, we would advise you to have an endoscopy to check that result. So I did have an endoscopy about eight weeks later.
[TR] They directly brought you from the trial into that?
[LC] Yes, yes.
[TR] Okay. Obviously, you've had endoscopies before, so you probably went. Were you nervous beforehand?
[LC] No, not really. No. I mean, I know endoscopies. I never think endoscopies particularly pleasant, but I'm not worried about them. It was actually only while I was having the endoscopy because I'm always interested. So I was having a look at the screen to see what I looked like on the inside and I can see that this looks different from the previous images I'd seen of my oesophagus because it was extremely inflamed and in one area which the endoscope spent a lot of time poking around and was bleeding and looked pretty horrible. So it's that point but I began to think that's not looking very good.
[TR] Did you question that then or how was it left after your endoscopies?
[LC] Well, the endoscopist told me that this area was obviously very inflamed, and I ought to go on a much higher dosage of the proton pump inhibitors. So he then prescribed some high dose of omeprazole for me. I started taking that immediately and a couple of weeks later, I was called into a clinic to talk to Professor Fitzgerald and her team.
[TR] Did you have an idea then if they call you what it meant?
[LC] Once I got the call back into the clinic so quickly, I thought this doesn't look good. But until I suppose that I had at that point begun to think about having that it might be cancer. But it's not until somebody actually says those words to you that you really believe it.
[TR] Yeah. Take us through was that a big shock or did you have someone's supporting you there? At that time?
[LC] No, I was on my own. I prefer to get these things on my own and although I'd already thought about it, it still is a shock when somebody says those words. I was introduced to a nurse who I could contact anytime. I was introduced to a couple of endoscopists and given a booklet. But at that time you are really still in a state where you can't think of the right questions to ask. I think it needs a little while to absorb that information. So I was very fortunate in that my treatment continued quite quickly. For about a fortnight. I was thinking about it. The thoughts that go through your head when you're told you have cancer, inevitably are this is going to be, hey, I'm likely to die because oesophageal cancer is very invasive quite quickly, I think it's about 17 percent of patients survive for five years. So you have that in mind immediately that I'm going to die much earlier than I thought. You also think that the treatments seem to think operation chemotherapy and all the same things that are associated with that, maybe radiotherapy, I'm going to feel awful whatever the outcome. I was lucky that I was only thinking of those things for the first two weeks or so. Then I had another endoscopy and more biopsies were taken, and now I was told at that stage that it was still confined to the single layer lining, the oesophagus. It hadn't yet penetrated deeply so that it could be treated endoscopically, which was very good news [LAUGHTER].
[TR] Did you have support around you from your family and friends at that time, had you talk to you? They said he wants on your own. Did you tell people then?
[LC] I thought about it for probably about a week because I didn't want to tell my husband and son at the same time because I knew that I could guess what their reactions were going to be and I didn't want to have to do it twice. I had gotten together after a week or so and told him. At that time I was doing thinking that, yeah, I could die from this. They responded exactly as I thought my son gave me a big hug and sent them. Therefore, I remember my husband said, would you like a cup of tea, which was something I did well, yeah, that's fine [LAUGHTER].
[TR] Also then things changed for you a bit because then what you felt was it that could be sent to a death sentence itself switch didn't fit, as you said, it may be thankful. It sounded like it had to at local cancer which then you offered treatment. Talk us through that process. How did that work?
[LC] It's a treatment called an endoscopic resection. I actually had this in about December I think of that year. For the patient, it is really a very simple process. It's just like having a normal endoscopy. Except, in this case, I was sedated so I didn't know what was happening. Basically through the endoscope the cancerous area is lifted up away from the underlying tissues by suction and then it's snipped off. The cancer removed. I think that in my case, the cancer area was large enough to require quite a lot of suction. I did in fact have to stay in hospital overnight just to have the bleeding checks and the area where it might have been a bit of muscle damage checked. But in fact, I was fine. So as release the next morning.
[TR] We should say what year was this
[LC] This was in December 2017.
[TR] Okay. So it’s coming up for three years?
[LC] Yeah, but in fact, when I had the next endoscopy and more biopsies which was in February, I think that year. No, it's earlier than that. I was told that there was still cancer cells present, so it hadn't been cleared completely. Also at that point it did become a bit more touching go because one of the biopsy samples showed that the cancer cells were into a contact with the next layer down. There was a chance that somewhere along my oesophagus cells had already moved into that underlying layer and could then obviously be transport around my body. At that point, I was offered two treatments. I could either have another resection or I could actually have my oesophagus removed. If I had the latter, then definitely the cancer would all be cleared if I had the resection, but much mandatory movement, there was still a chance that not all the cancer would be cleared.
[TR] That is tough choice?
[LC] Yes, it was I mean the surgeon talked to me and the endoscopies talked to me together and reading the risks attached to having your oesophagus removed compared to a resection, resection takes half a day and outpatients basically. Having an oesophagus removed is going to mean at least a week and hospital. But probably a short period in intensive care. It takes six months to a year before you feel normal again. Of course you never really normal because what's replaced your oesophagus is your stomach spin stretched up to replace the area that's been removed. Your body is going to be changed forever. I thought about it and decided that I would go for another resection. At that time, backstops were all the rage. We were looking at Brexit backstops. I saw that maybe I could bring in this principle and use or have the operation as a backstop pin in the back of my mind as something that if the recession didn't work, I would still be there.
[TR] That process you recovered again?
[LC] Absolutely I had the secondary resection and that went very smoothly. I was absolutely fine. No problems with it at all. I mean, after resection you have about a day on liquid food and then soft food for a week. That's the greatest inconvenience which is nothing.
[TR] How are things with you now? Because obviously, we're now reflecting back, but how things with you at this current time and going forward?
[LC] It's been very interesting actually. I mean, I've had endoscopies, I should think once every three months with biopsies being taken to check that everything was okay and it became obvious that things were okay. I'm not done to six monthly endoscopies which are somewhat interrupted by COVID, but they're still going on. In early 2018, I was asked to be prepared to let my story be used for publicity. That in itself was very cheering because they wouldn't have used my story for publicity [LAUGHTER] and the risk of recurrence in the immediate future. I'd been doing certain amount of that since.
[TR] That's how we first met a couple of months ago. When we could meet in person.
[LC] Yeah [LAUGHTER].
[TR] Yeah, I mean, how does it feel now to be sort of prove that lived a few reflecting back through that lived experience and actually you become an expert patient and someone who is telling us that amazing story, how does that make you feel?
[LC] The whole thing that I would say that actually cancer has been a positive experience for me. It doesn't make you appreciate what you've got. It makes you appreciate your good health and everything you look at that you enjoy. Rethink, I couldn't miss this. I'm going to make the most of it now. I think it enhances your life in that respect. Although I was very dubious about the publicity and I'm not too sure about my ability to speak in public. I have actually quite enjoyed that as well. I'd been to various parts of the country to give talks about the patient experience. It's been very interesting. I must say, I was horrified to walk into a supermarket and see my picture on the front of the local newspaper [LAUGHTER] when the first press release was released. But I got used to that now.
[TR] Obviously, you've told your story and I guess the sort of what lessons would you take home from this if anyone was worried about symptoms, what would your advice be to them? Especially during COVID, we have seen a lot of people may be worried about not bothering doctor's time or they're scared of using the NHS, especially for potential worrying symptoms.
[LC] Well, I think if you've got any worrying symptoms, then you should go and see your GP or can talk to your GP. I think my experience has shown that if you can catch cancer early enough, then it can be cured. I would advise people if they are often tests to take them up because at the present moment it is difficult to have things like test for breast cancer and cervical cancer for example. If those tests are available and take them, it makes such a difference. You can't feel cancer developing inside an early stage that's trouble. You can't feel cells dividing until they have produced something that's large enough to actually impede your normal functions. By that stage it's advance. Although you may actually feel perfectly well, if you have any thoughts, you've got cancer, or anything wrong with you, get it checked.
[TR] That's a great thank you. Thanks, I think that's probably a good place to end on [LAUGHTER] I guess we needed a bit of reflection.
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