Pancreatic Cancer
Finding information on pancreatic cancer
We talked to people who had pancreatic cancer about how they got information about their illness.
Most of the people we interviewed knew little or nothing about the pancreas or about pancreatic cancer before the diagnosis. Peter said that before he became ill he didn’t even know that he had a pancreas!
Before his diagnosis Peter knew nothing about the pancreas, and he found it very hard to find out about neuroendocrine tumours.
Before his diagnosis Peter knew nothing about the pancreas, and he found it very hard to find out about neuroendocrine tumours.
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But we then began to learn a whole lot of aspects about an organ, the pancreas, the curious thing about the pancreas is until you have anything wrong with your pancreas you’ve really no idea that you have a pancreas. It’s a very mysterious little creature indeed, it was one of the last you know, you discover that it was one of the organs that we last learnt anything about. It was one of the most mysterious little creatures that live inside us, you know, full of islands and exuding and seeping and controlling hormones, and insulin and it’s the sort of, and its deep you know, it sort of, like a little fish swimming around in there. And it’s quite deep, and it’s a fish that stays a long way under water, and it’s quite hard to catch and not easy to do anything with. And it’s connected to your liver by its various veins, portal veins and splenic veins, and all sort of things.
One of the peculiarities of this whole experience, because you suddenly, particularly if you are a journalist like me and you, you sort of feel that you ought to know things and be enquiring, once you’ve got something you can enquire about, you suddenly think, “Oh gosh what is all this? What’s this pancreas? What is this neuroendocrine tumour? What is all this?” Quite difficult to find about neuroendocrine tumours in those days. It’s only a decade ago, but it soon became clear that most doctors had very little idea even what a neuroendocrine tumour was. They, or to be perfectly fair I suppose, they’re not that common. Though I think they’ve turned out to be quite a lot more common once people start recognising them. And I didn’t know much about the pancreas either. But soon I did, and we discovered that indeed, that diagnosis, that swift diagnosis before dinner that night turned out to be, in British terms, more or less true. This was far from being a little you know pea sized couple of balls in my pancreas, it was a very, it was quite a substantial thing.
Some people looked for information as soon as they had symptoms or soon after they started getting tests done.
Davinder wanted information from 'day one'. After having had scans she guessed she had a serious problem. Relatives found information on the internet.
Davinder wanted information from 'day one'. After having had scans she guessed she had a serious problem. Relatives found information on the internet.
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I started to look for information from day one, the day I came out of, from hospital, after having these two scans. I thought, “It is serious.” Once the guy told me that, radiologist told me that it’s my pancreas, I took it seriously. It’s not the pancreas not being touched by something little. So I realised something is more serious with my body, so I did not take it lightly. And I was, the problem was I wasn’t getting much information. I was, I wasn’t going, going to websites though, but I tried to find books and things, which I didn’t. So there wasn’t no books in the library or I couldn’t find any other books. So my sister was pretty good. She gave me a lot of information from the website. And my daughter did as well. So I was pretty equipped with the information and it was telling what I was imagining with the pancreas it can be. And the hospital gave me a lot of information as well.
Getting information from the Doctor
After they were told they had pancreatic cancer, people got a lot of information from their doctor. For most, this was plenty of information. Surgeons drew diagrams to explain where organs were and what would happen during surgery. Doctors had used information that they could understand and explained the treatment they could have. Some people got leaflets about treatments and the possible side effects.
William's surgeon told him that he could have surgery or chemotherapy or do nothing. William decided on surgery.
William's surgeon told him that he could have surgery or chemotherapy or do nothing. William decided on surgery.
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On the 28th of May I went to see the consultant that was going to operate on me. And he explained everything. He gave me various options. I think it went up to five different options of what could be done. And one of them was, “Do nothing.” And I said, “Well, what would happen if I do nothing?” He said, “I expect you, you would die within a year.” And he said, “We can operate on you, and I’ve got a 7 per cent chance of you dying on the table.” And we went through all the options. And then he, he drew on the back of the folder exactly the layout of my internal organs. And then he, he drew a line through everything that he was going to cut out, gall bladder, head of my pancreas, the duct out of my liver, intestines. And then he was going to re-route them in this particular order and everything would be fine.
So that was the second option, major surgery? What were the other three?
I can’t remember. But chemo was one of them, but by now your head’s spinning and it really is difficult to keep a grasp of what you want. Because at the end of that meeting I had to decide what I wanted to do. I could walk out of that surgery and say, “Thank you very much, but I’m not going to do anything” or, “I’ll have chemo.” So I elected for surgery.
The doctors answered all Tony's questions. He took his wife and daughter to the consultations and they asked questions too.
The doctors answered all Tony's questions. He took his wife and daughter to the consultations and they asked questions too.
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Did you get enough information from the doctors when you were in hospital?
Anything I asked about, I got information, you know, they just told me everything I asked you know. If I wanted to know anything it was there, and, “What are my chances like now?” And they said, “Oh you know, you’ve had the operation, as long”, you know, they won’t operate on you unless you’re strong enough. That is obvious you know, they, they do every test they can to see as you’re as, well I said as fit as I was. And they said, you know, there’s no problem with me at all. I’m not overweight or nothing like that, and everything is ticking for me, I’ve got everything going for me so. Yeah, you know I, everything I asked they told me, or, if I didn’t ask my daughter or the wife did. Because sometimes you forget things don’t you when you’re, I’m forgetting a damn site more now. They said you will tend to forget things and they’re not joking. I do forget things you know.
Doctors gave Helen excellent spoken and written information about what to expect during treatment. She also used the internet.
Doctors gave Helen excellent spoken and written information about what to expect during treatment. She also used the internet.
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I did mainly get a lot of information off the Internet, mainly from the Macmillan website and Pancreatic UK. But my, my consultants and their doctors were absolutely fantastic. When I was first, when I first started to go to the main hospital to see the surgical team, there was, the registrar at the time, who we saw mostly, was absolutely wonderful. He explained everything in great detail, took loads of time to explain things to us. And if we asked questions he always answered them really well. So we, we always knew exactly what was what and what was going on and what to expect. He never left anything out. He was wonderful. So we got a lot of information off him. And he did give us a booklet, with a diagram of what was going to be taken from me when I had the operation, and he, he’d scribbled on that for us to show us exactly, which was really quite helpful, scary, but helpful.
And before you had the chemotherapy trials, were you give written information?
Yes, I was given leaflets about the chemo trial and about the side effects, possible problems that you could have during chemotherapy. But you get that with anything nowadays. I mean you open a box of tablets nowadays and there’s always a big list of possible side effects, but you don’t actually get them in the end. Very few people I think suffer severe side effects.
At the time of diagnosis most people were in a state of shock. They found it hard to take in much information. Many said they did not want to know what would happen to them (the prognosis), and more information would have been frightening.
However, others felt they weren’t told enough. They wanted to know more, or everything, about their or their relative’s illness. Some, such as Adrian, said that they didn't even get essential basic information. When Saba’s mother was diagnosed with advanced pancreatic cancer, Saba and her mother knew little about it. Saba felt that the family were making treatment decisions without enough information.
Adrian felt that he should have had more information. After the diagnosis he had to wait three weeks before the nurse gave him written literature.
Adrian felt that he should have had more information. After the diagnosis he had to wait three weeks before the nurse gave him written literature.
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Did they give you any kind of written information about it to take home or not?
…I didn’t get any information at all, and at the first consultation I should’ve had, from a specialist cancer nurse. So it was only upon meeting that nurse three weeks after my first consultation that I was given any, any kind of literature at all. As it happens we have a, a charity that’s sort of an adjunct to the hospital, and they’re very helpful with, with information. And so all kinds of booklets and so on, yes especially the Macmillan booklets about pancreatic cancer. So yes, after a, once you’re, you’re properly in the system then that kind of information comes quite easily.
So did you already know about that cancer information centre or did the specialist nurse point you at it?
I didn’t know about the charitable cancer centre. It was my specialist nurse. So again I’d had three weeks between the, the initial consult, consultation where I was diagnosed and, and actually accessing this really valuable resource. That’s three wasted, unnecessary weeks where I could’ve been doing a lot more, learning about what was happening to me.
And how did you feel during that three weeks, I mean emotionally it must’ve been quite traumatic I imagine?
…I’m not sure really that you ever get over the, the, the diagnosis. It’s, every day it’s a shock. Every day you’re still feeling well, well not well, but not absolutely foul. And you, you’re reminded every day therefore why you’re feeling like that………
So were you satisfied with the information that you got, those Macmillan booklets, or did you seek out more information for yourself?
The Macmillan booklets are really excellent. They give you all the, every, really everything you need to know. But inevitably it’s … one has a search around the internet and so on to see what else there is. So I had a quick look around various internet sites and can’t, wouldn’t like to say I can remember any in particular. Came across the inevitable cranks, crank doctors in America who, for all of your money, guarantee a cure. Fortunately, I’ve the sort of personality that discounts that kind of thing fairly quickly.
William also found it hard to get enough information from his doctors. He told his surgeon that the leaflets he got about his operation had not included details about all the possible side effects. The surgeon explained that after such surgery there are hundreds of possible side effects. They are very unlikely to occur so doctors don’t usually list them all. Another time William asked what would happen if the cancer came back after chemotherapy, but his consultant did not want to tell him (also see ‘Communication with professionals’).
Simon’s wife died of pancreatic cancer. Just before she died her GP gave Simon a pamphlet about what to expect when someone is close to death. Simon found this pamphlet very hard to read but was glad he had read it
Getting information from websites
Some people felt they got enough information at the time of diagnosis but wanted more later on. Many looked in books or online. Saba looked up words such as ‘metastases’ and ‘gemcitabine’ online. One man found information online to help him to prepare to talk to his doctors. Several found helpful information about the Whipple’s operation they were going to have. Others looked for information about new treatments. When Simon’s wife was diagnosed he spent hours looking for relevant academic papers on the web.
Simon looked at the internet for treatments that might help his wife. He found useful information, such as details about the TeloVac trial.
Simon looked at the internet for treatments that might help his wife. He found useful information, such as details about the TeloVac trial.
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Did you find some sites more useful than others?
Yes. You see a lot of, I noticed Hugh Grant mentioning, mentioning the sort of number of sites that are not very helpful. I mean I’m lucky that I teach psychology and therefore I’ve got a background in you know, I know how to recognise a more academic paper. So I know, I was able to filter things out. But you quite quickly learnt there’s an industry you know, of, there’s an industry on the back of people dying. And so a lot of the, a lot of the websites are wanting you to, you know, get involved in their products. But I mean I was looking for information, but even then the information you get, you need to be very careful, as to who’s written it, and why have they written it, you know. And you know it is a quagmire. I mean I spent hours and hours and hours and hours and hours trawling through, and I think I’m lucky that because of my background that I knew how to recognise serious papers. And I had the time and the know how to sort of even explore them.
So if I saw a paper then I would go into, then I’d be looking into their names and finding out who these people were before I even started reading a paper, so I knew I had to trust it you know. So, so I did find some very good information like the Telovac trial, you know I learned all about telomerase and the Telovac trial itself. I looked up reviews of the trial itself, academic papers. So you know I was just lucky really that I could do all of that. And I mean I had to, I was driven, you know. Karen didn’t want to know because she was, she’d be seeing her spiritual healer, while I’d be looking at academic papers. She didn’t want to know. She didn’t want to know facts and figures. She wanted to know of any research which was positive.
Audrey searched to see if others had suffered similar side effects after a Whipple’s operation, and she posted questions on a website. Someone else joined a forum to compare notes with others who'd had similar treatment. Bob found out about the enzyme Creon and wondered why his doctor had not told him about it. He then asked his doctor for a prescription to help with his digestion. Helen was convinced that the information she found helped her to get through her surgery.
By searching the internet Helen found a woman who had had a Whipple's operation; she told her what to expect.
By searching the internet Helen found a woman who had had a Whipple's operation; she told her what to expect.
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And looking at the Internet, was that useful or not?
Oh, very useful. I don’t think I could have got through it as well as I did without the information that I got off the Internet and the people that I spoke to on the Internet as well, people who had been through it. There was one lady in particular; her sister had just had the Whipple’s while I was waiting to have mine. And her sister was absolutely wonderful, gave me in great detail how her sister had, what her sister had gone through with her operation, so that I knew what to expect, which was what I wanted. Some people don’t want that. Some people like to just bury their head in the sand and, and not know. I wanted to know everything. I wanted to know every tube that was going to go into my body, what I was going to expect after the operation. It didn’t scare me. I felt empowered I suppose, because I knew what I was going to be, what was going to be happening. Nothing was going to be a surprise or a shock.
How did you find those people on the Internet to ask questions?
I just did, I just kept searching in the search engines really under pancreatic cancer headings, usually, or Whipple’s, which was the operation. And that would bring up a wealth of sites to look at. And it was just a case of going through the sites one by one, trawling through them and seeing what they were and how they worked, and just negotiating my way through them really.
So you found people who were, who were happy to give you information or their email address or something like that?
Yes.
On those sites?
Yes.
Richard felt that his doctors had given him superb information, but checked it online. Many of his friends gave him advice about ‘super foods’ which they thought might stop the cancer growing, so he also searched the internet for information about those. He decided that he could not alter his diet to include all the foods that might be ‘appropriate’.
Vicky looked at a website run by her hospital’s liver and pancreatic unit. When Susan’s mother became ill Susan searched Wikipedia. Websites that others found helpful were Macmillan Cancer Support and Pancreatic Cancer UK.
A few people looked at American websites too. Some had found ‘crank doctors’ offering ‘miracle cures’ at huge prices, which they ignored.
Some people were shocked by reading about poor survival rates online, and decided not to look again. However, often their children or their friends found various treatment options or helpful information about clinical trials.
Richard looked at the internet and was shocked by what he saw, so turned off the computer, but a friend's son found useful information on a website about a clinical trial.
Richard looked at the internet and was shocked by what he saw, so turned off the computer, but a friend's son found useful information on a website about a clinical trial.
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Did you look for information on the Internet at that stage?
I didn’t, no, because, well, I suppose I’m a bit of a, a bit of a coward there. When I was first diagnosed or the first possibility of pancreatic cancer was mentioned, I went on to the Internet. And, well, and I remember, I was on the Internet on a computer in the library, and the f-, first thing that came up was a banner across the monitor screen saying, “Survival rate 9 to 12 months.” And I thought, “Oh, right.” And I didn’t want to read any more. I remember I just sort of turned the computer off in a panic and got out and walked out of the library rather shocked. And really I’ve been like that ever since, I’m afraid. I’m usually a person who likes to have facts, and I’m getting better at it. I’m more interested in what can be done, rather than what might happen or what has happened. So, yes, the treatment I’m interested in, but the biology of it all, I’m not so, not so keen on.
Luckily, a friend’s son had been on the Internet, looking to see what pancreatic cancer was all about. And he’d found that Liverpool University were doing a trial, a clinical trial, which he thought was, was useful. And he told me about this and he gave me the computer printout. And it did look interesting to me. So I, as I say, luckily, I was able to go along to this first meeting armed with these two A4 sheets of computer printout about this clinical trial. And I’m so pleased I did, because the oncologist was depressing. And it would have upset me an awful lot had I not had the, if you like, this back-up of this information off the Internet. And so I asked him then if I could go on this trial, if I could be put forward to it. And he said he would consider it, which he did. And I was accepted on this clinical trial, and moved away from that oncology department.
Some people said that they had not looked online at all. They preferred to trust the doctor, felt no need to look elsewhere, or were not used to a computer. Some worried that information on websites might be misleading, frightening or depressing. But many said that their partners or children had found information on the internet about treatment trials or new treatments such as Cyberknife.
Tony did not look at the internet for more information about his operation, but his family went on the internet and gave him books on the subject.
Tony did not look at the internet for more information about his operation, but his family went on the internet and gave him books on the subject.
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Did you look anywhere else for information about the pancreas?
No, no, no. No, never, never looked on no webs or nothing. My daughter did. She, she went through it and she was telling me. I said, “Look, I’m going, I’m having it done and that’s all there’s to it.” So, I think they were more wound up than me. They give me books and that, I said, “I’m not reading them. I’m going in, not knowing and whatever they do is whatever they’re doing.” I think you can frighten yourself looking at all that stuff because you don’t understand it anyhow.
Finding information from the media
Information found in newspapers, magazines and the can also be upsetting, wrong or even harmful. Anthony’s wife got upset when she read news stories about people who had died of pancreatic cancer. TV soap opera had a storyline about a woman who was dying of the disease ands this upset her.
A few people used complementary or alternative therapies, particularly when medical treatments had failed. One man told us he was eating dried apricot seeds. His wife had read about them in a magazine and found out where to buy them online.
Some people got useful material from books or newspaper cuttings. Peter was grateful when friends sent him articles about CyberKnife therapy.
Last reviewed November 2020.
Last updated November 2020.
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