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Pancreatic Cancer

Finding information on pancreatic cancer

Most of the people we interviewed knew little or nothing about the pancreas or about pancreatic cancer before the diagnosis. Peter (Interview 36), who turned out to have a neuroendocrine tumour, said that before he became ill he didn’t know that he had a pancreas.
 

Before his diagnosis Peter knew nothing about the pancreas, and he found it very hard to find out...

Before his diagnosis Peter knew nothing about the pancreas, and he found it very hard to find out...

Age at interview: 59
Sex: Male
Age at diagnosis: 49
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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 developed symptoms or soon after investigations started.
 

Davinder wanted information from ‘day one’. After having had scans she guessed she had a serious...

Davinder wanted information from ‘day one’. After having had scans she guessed she had a serious...

Age at interview: 65
Sex: Female
Age at diagnosis: 65
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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.

Once diagnosed with pancreatic cancer, people received a range of information from their doctors. Most said that then they had plenty of information. Surgeons had spent time drawing diagrams to explain where organs were and what would happen during surgery and doctors had used language that they could understand (see ‘Communication with health professionals’). Others had had various treatment options explained. Some people were given leaflets about treatments and the possible side effects.
 

William’s surgeon told him that he could have surgery or chemotherapy or do nothing. William...

William’s surgeon told him that he could have surgery or chemotherapy or do nothing. William...

Age at interview: 49
Sex: Male
Age at diagnosis: 49
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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...

The doctors answered all Tony’s questions. He took his wife and daughter to the consultations and...

Age at interview: 66
Sex: Male
Age at diagnosis: 65
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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...

Doctors gave Helen excellent spoken and written information about what to expect during treatment...

Age at interview: 49
Sex: Female
Age at diagnosis: 47
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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 and found it hard to take in much information. Many said they did not want to know the prognosis, and more information would have been frightening. However, others felt they weren’t told enough and wanted to know more or everything about their or their relative’s illness, and some, such as Adrian, said that essential information was lacking. When Saba’s mother was diagnosed with advanced pancreatic cancer Saba and her mother knew little about the disease. 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...

Adrian felt that he should have had more information. After the diagnosis he had to wait three...

Age at interview: 48
Sex: Male
Age at diagnosis: 47
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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. 
 
 

Saba didn't realise that chemotherapy would prolong her mother's life only by months. She didn't...

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Saba didn't realise that chemotherapy would prolong her mother's life only by months. She didn't...

Age at interview: 45
Sex: Female
Age at diagnosis: 65
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Went to the oncologist who told my mother … I went with her. And they basically sort of said that she had, you know, they felt that the primary cause of the metastases was pancreatic cancer. They needed … they either needed to find out where the primary had started from. And I sort of, you know, I insisted that I wanted to know, and they just sort of said well at this stage that was probably not the main concern now. The main concern is dealing with the secondary stage of it or final stage of it. 
 
They sort of said to me that, well they said to her that they would, could offer her two forms of chemotherapy. One was an intense course that they would have to do at [name of hospital]. And that would mean keeping her in for a week of intense chemotherapy. Or there was a new drug that gem, gemcitabine that they could do where she came in as an outpatient. So she would sort of come in, I think it was once a week over a period of … I think it was a course of twenty or ten. And I would think after ten they would assess to see what impact it had had on the tumours. And that would be, would just mean that she could go in on a sort of weekly basis and still go home. But they basically said it’s our decision. 
 
Now I had no idea what any of this meant, nor did my mother at this sort of stage. And I wasn’t sort of … I wasn’t told at any stage that the chemo they were offering was palliative, or they may have mentioned that, but I didn’t know what palliative meant because I never had to deal with those sort of terms. Didn’t know at that stage that they, they weren’t offering chemo that could actually help the cancer. They were just trying to prolong her life for a slight amount of time. 
 
So we, we decided, to cut a very long story short, that we would take the gemcitabine route, at this stage still not realising that that was the milder dose and that would really be quite ineffective in terms of, you know. And as to today, that’s one thing I still feel upset about, that we were not, nobody actually said to us at any stage that neither options are going to decrease the tumour, it’s just chemo to give her a better quality of life for the next few months, or to prolong, or to try and stop the tumours from growing at a, at a, you know, at a rapid rate, that it may prolong her life another month or two months. We were never told that at that stage so I felt I wasn’t making, I couldn’t make the right choices not knowing the background to what we were being offered. I felt that it was up to us to find that information for ourselves. And up to us to make the decision. They were just sort of saying, “This is what we can offer you, you decide.” But not being given enough information.
 
William also found it hard to get enough information from his doctors. He told his surgeon that the pamphlets he had received before 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 but since they are very unlikely to occur doctors don’t usually list them all. Another time William asked what would happen if the cancer came back after chemotherapy, but his consultant was reluctant to tell him (also see ‘Communication with professionals’).
 
Some people felt they had had enough information at the time of diagnosis but later needed more. Many had looked in books or on the internet. One man said that what he found on the internet helped him to prepare for consultations with his doctors. Several had found helpful information about the Whipple’s operation they were going to have. Others searched the internet for information about new treatments. When Simon’s wife was diagnosed he spent hours on the internet looking for relevant academic papers.
 

Simon looked at the internet for treatments that might help his wife. He found useful information...

Simon looked at the internet for treatments that might help his wife. He found useful information...

Age at interview: 39
Sex: Male
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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.
 
Saba’s mother died of pancreatic cancer. Saba lacked information (see above) so looked up words such as ‘metastases’ and ‘gemcitabine’ on the internet. Audrey used the internet to see if others had suffered similar side effects after a Whipple’s operation, and she posted questions on a website. Someone else wanted to join an internet forum to compare notes with others who had had similar treatment. Bob found out about the enzyme Creon via the internet. He wondered why his doctor had not told him about it and he 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...

By searching the internet Helen found a woman who had had a Whipple’s operation; she told her...

Age at interview: 49
Sex: Female
Age at diagnosis: 47
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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 (Interview 22) felt that his doctors had given him superb information, but he used the internet to check that it was ‘true’. 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, but 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. Websites that others found helpful were BBC Health, Macmillan Cancer Support, and Pancreatic Cancer UK. When Susan’s mother became ill Susan searched Wikipedia.
 
Some people were shocked by reading about poor survival rates on the internet, and decided not to look at the internet again. However, often their children or their friends continued to search on the internet and found various treatment options or helpful information about clinical trials. A few people looked at American websites. Some had found ‘crank doctors’ offering ‘miracle cures’ at huge prices, which they ignored or doubted.
 

Richard looked at the internet and was shocked by what he saw, so turned off the computer, but a...

Richard looked at the internet and was shocked by what he saw, so turned off the computer, but a...

Age at interview: 63
Sex: Male
Age at diagnosis: 60
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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 at the internet at all, either because they preferred to trust the doctor, or felt no need to look elsewhere, or were unused to a computer, or 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 (see ‘Cyberknife treatment and side effects’).
 

Tony did not look at the internet for more information about his operation, but his family went...

Tony did not look at the internet for more information about his operation, but his family went...

Age at interview: 66
Sex: Male
Age at diagnosis: 65
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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.
 
A few people used complementary or alternative therapies, particularly when medical treatments had failed (see ‘Complementary therapies, diet and other lifestyle changes’). One man told us he was eating dried apricot seeds. His wife had read about their value in a magazine. She found out via the internet where to buy them.
 
Some people got useful material from books or newspaper cuttings. Peter (Interview 43) was grateful when friends sent him articles about CyberKnife therapy.
 
Although information found in newspapers, magazines and the internet may be helpful it can also be upsetting, misleading or even harmful. Anthony’s wife had pancreatic cancer. She was diagnosed in 2003 and died peacefully in 2008. She had got upset when she read news stories about people who had died of pancreatic cancer. A TV soap opera which included a storyline about a woman who was dying of the disease had also distressed her.
 
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.

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Last reviewed September 2018.

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