Pancreatic Cancer
Hearing the diagnosis and prognosis
We spoke to people about what happened and how they felt when they were told that had pancreatic cancer.
Feelings about getting a pancreatic cancer diagnosis
People reacted in different ways and with a range of feelings. Some at first couldn’t believe it. They felt shock, distress, sadness, fear, or anger. Some said it took time for the news to sink in, and for a while they felt it wasn’t really happening to them; one said it was like an ‘out of body experience’. Some said that after the initial shock they were determined to think positively and hoped that treatment would work.
A few said that they had been expecting it and accepted the news quite calmly. Others were relieved that a diagnosis had been found that explained their symptoms.
Some said they were surprised because they led a healthy lifestyle and thought this would mean they probably would not get cancer. One man said it was reassuring to hear that he had not caused the cancer himself and that there was nothing he could have done to prevent it.
After the initial shock Maureen felt as if she was going through a bereavement. Life would never be the same again. Now she feels more positive.
After the initial shock Maureen felt as if she was going through a bereavement. Life would never be the same again. Now she feels more positive.
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So it was quite a shock to actually look at the, the scan itself and see, not that it, if I’m honest, it really meant masses to me. But he described it and explained that because it was extending over the main artery there was no way they could operate, because they can’t touch that main artery. So we were sort of left stuck for a few moments, but then he explained to us that although an operation then chemotherapy is the preferred route, there is an alternative and that is chemotherapy and then an operation, and that, this would be fine. Although it’s not the preferred route, it’s a tried and tested route, so no problem. Have the chemotherapy and then I’ll do the operation.
One thing I would say that I did feel at the very beginning, of being diagnosed, is that I suffered a bereavement, because this is a change in my life. This is a, an enormous change. Life as I had known it would never be the same again. So I felt that I was going through a bereavement and, again fortunately for me, having done lots of training etc., that I could understand how this was. I started out with the disbelief, you know, went through that, “I don’t believe it’s happening, it’s not happening to me”, to the anger. I do remember a long, long time ago somebody, reading something or somewhere of people who things happen to say, “Why me?”, and then them saying, “Well, why not you?” So I did take that view. “Well, OK, it’s me”, you know, “Why not me?” I didn’t go down the road of, road of “Why me?” But I did get angry, and think, “I don’t want this.” But I moved, and I realised in time that I was going through the process that one goes through with a bereavement. And it is, it’s because it is, as I say, life will never be what it was. But then I do also believe life changes all the time and that’s no bad thing. But I would certainly would rather have not be down this road, but I certainly feel now that the road I’m on, and the road I believe I’m, I should be on, is the road to recovery. So that’s where I’m staying.
What people do after diagnosis
Some people wanted to find out as much as possible after they received the diagnosis. Others wanted time to absorb the bad news before finding out more information. Some reacted to the news by sorting out their money and other affairs, or tidying up their home. Others decided to try to carry on living as normally as possible, even continuing with their immediate plans, like going on holiday or out for dinner.
How doctors give a pancreatic cancer diagnosis
Different doctors may give bad news in different ways.
A consultant explains that in his department doctors want to break bad news to patients with a relative present and with a specialist nurse in the room.
A consultant explains that in his department doctors want to break bad news to patients with a relative present and with a specialist nurse in the room.
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In an ideal situation, how should a patient be told about their diagnosis?
I don’t think you can be prescriptive because every person is very different. There is also a huge discrepancy in how much a patient takes in, on any one given situation after a discussion and whilst you can speak to a patient and you know you’ve told them certain aspects of their, certain facts, they will come back later and they won’t have taken that in. Now, what we do, within our own unit, is we try and break the diagnosis with a patient, if they’re willing, with their family and the consultant specialist, who is speaking to the patient, will also, will usually speak to the patient and relatives along with one of our specialist nurses, who will then, having discussed the diagnosis, will go over any areas that they’re unclear with and we’ll usually give them the opportunity of coming back and discussing aspects to their care. Now, at their initial discussion, we often keep the discussion relatively brief because the intricacies of discussing what possible treatments and the pros and cons of those, can be beyond their ability to take it in when they’re, initially, faced with a diagnosis.
So often giving them information over a number of episodes, also supplementing that with some written information so they can write it down and ask them to come with their own questions, can develop a better understanding from the patient about why certain aspects of treatment have been suggested.
Although some people had been with a family member when being told the diagnosis, others hadn’t been expecting bad news and had been alone.
Some people felt that they were told the diagnosis in the best possible way and the doctor had been sensitive. Some had ben glad when the doctor had shown empathy. Others said that, although the news had been broken to them quite bluntly, they welcomed this direct style of communication. Steve told his consultant that he wanted to hear his diagnosis in private, not on the main ward with other people listening.
Steve and his wife went to a quiet room. The consultant drew pictures of Steve's internal organs, explained about the stent and discussed treatment options.
Steve and his wife went to a quiet room. The consultant drew pictures of Steve's internal organs, explained about the stent and discussed treatment options.
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One thing I did ask him to do was, I was on a ward of about half a dozen other people, and I asked if I, if my wife and I could go with him and sit in a quiet room rather than discussing it where I knew other people would be listening in. And I found that quite helpful.
I think that was out of the ordinary and it took a minute or so to find a room you know, we had to walk around until we found somewhere, but I would encourage people not to feel they, they had to receive bad news at the convenience of the medical staff. Make sure you’re, you feel comfortable about where you receive the news and how it’s delivered to you. If you have the chance, certainly to make things private. That helped me. The thought of discussing possibly a terminal condition when other people were listening in was not welcome to me.
So, he was very good, the surgeon took us into a quiet room and explained it to us. In fact he was very careful to take time to, he actually drew a little sketch for us, he used coloured pens on a piece of paper, and he said, “This is your pancreas, and this is your bile duct,” and he drew all these elements of my, my guts, my inside to try to explain it as fully as possible. And he explained about the stent, what that would do for me. And he also outlined the possibility of what’s called a Whipple’s operation, as I’ve already referred to.
Anthony was with his wife when her surgeon told her the diagnosis and explained why it was not possible to operate to remove the tumour.
Anthony was with his wife when her surgeon told her the diagnosis and explained why it was not possible to operate to remove the tumour.
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And then we were called in for an interview with the surgeon who said, “We’ll give you the results of everything, and the diagnosis”. As it turned out it was a fateful date; it was our 25th Wedding anniversary. But we went to the hospital together, and saw a surgeon and there was a nurse there as well. And he said that, “You’ve got cancer, and it’s pancreatic cancer. And I can confirm that it’s definite, the biopsy shows that.”
He was a man who wanted to explain and we were very grateful because we, neither of us had any idea, we’d not heard of pancreatic cancer before. And he drew us a picture, which was actually very useful. Because he showed how there’s a great big vein that goes through the pancreas, and that the tumour was quite, I don’t know, quite near to, reasonably substantial. And that it had been there for some while, and that lots of veins had grown all around it because it was blocking the portal vein. So he said, “You know, that means I’m afraid we cannot operate. There’s no question of it because once a tumour has got this multitude of veins around it, it’s out, it can’t be operated on anymore.”
And it was a complete shock that to us. And both of us, we did really didn’t know what was going on at that point. And we were quite upset and quite, quite, found it very difficult.
Many other people said they got the diagnosis in bad circumstances. Ann was desperate for news so she called her consultant to talk about test results while she was on a train .
Ann heard the diagnosis while she was on a train. She had already had breast cancer and could hardly believe the news that she had pancreatic cancer.
Ann heard the diagnosis while she was on a train. She had already had breast cancer and could hardly believe the news that she had pancreatic cancer.
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And I then the next day had to go off and give a talk in Manchester. And there were a lot of phone calls between the gastroenterologist and myself trying to get hold of each other to find out the results of that. And it ended up with, and no one’s fault really, where he had phoned me and had left a message, I had phoned him, and then eventually we spoke to each other while I was on the train coming back from Manchester where he was trying to tell me what was wrong. And I didn’t really want to wait any longer, because we’d been trying to get hold of each other. But the trouble with that train is that it keeps going through tunnels. So every couple of minutes, while he was trying to say, “Yes, I think you’ve got pancreatic t-, cancer” he would go, “Yes, I think you’ve got pancreatic..” and then there’d be c-, a cut-off. And then I’d ring him back or he’d ring me back and we did it for about six or seven times.
And somehow being in an open carriage with a mobile phone, I mean it’s absolutely what he and I would have said is the worst way to give bad news. But there was no, somehow I c-, I could have waited till the evening, but I didn’t want to wait. And I also knew from the tone of the voice of his message that it was really bad news. And I think I knew anyway and I’d just been just keeping it at bay. And he said then there was, it was, it seemed to be definitely a small tumour, although they couldn’t identify absolutely, in the head of the pancreas, and that really the only thing I had to have was a, an operation, the same operation I’ve talked about, a Whipples. But then I actually had a proper conversation with him when I got home. And he arranged for me to see the surgeon, who it turns out does a couple of these operations a week, because it’s obviously part of the regional centre. And I was s-, I still, I don’t think I believed it really, although I knew it was true. It was that sort of disbelief. It’s rather like with a bereavement, you can’t believe someone’s died. I just couldn’t believe that twelve years after breast cancer, here I was with a pancreatic cancer.
Other people were not told directly that they had cancer and found out another way. Sometimes this was due to bad communication or because a junior doctor had made an inappropriate remark.
Others guessed or learnt in distressing ways that they had cancer. One man had to wait two hours at the clinic before a surgeon gave him the shocking news about his diagnosis. Another man became aware that he might have cancer when the registrar mentioned the possibility of cancer ‘in the doorway on the way out’. When May’s doctor said that her tumour might be benign she realised that meant it could be cancerous.
Ben was alone when he heard he had cancer. He was shocked when the consultant said “You know you’ve got cancer”. The consultant thought that another doctor had already told Ben. Several others had a similar experience. Sometimes consultants talked about ‘a tumour’ or ‘a growth’. There were delays before tests showed it was cancer or before a doctor explained that cancer was the cause of the problem.
John (Interview 21), for example, was told that his wife Ann had a ‘tumour’ and it was months after her operation before he was told that Ann had liver metastases and the word ‘cancer’ was mentioned. Some people only found out their tumour was cancerous by asking their doctor a direct question.
Audrey was alone when a young doctor first told her she had cancer. Later a consultant added that it was difficult to treat, but two days later she was told it was operable.
Audrey was alone when a young doctor first told her she had cancer. Later a consultant added that it was difficult to treat, but two days later she was told it was operable.
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Yes, I had another ultrasound and they didn’t tell me anything about it but immediately after that then I had the CT scan. And then went back to the ward and at about five ‘o’ clock that night a young doctor came in and told me I’d got pancreatic cancer, just like that, no one there, I was absolutely stunned and shocked and I can’t really explain what a, you know, traumatic experience it was. And shortly afterwards my neighbour’s daughter came to visit and I couldn’t tell her.
Of course not.
She’s a young girl and I didn’t want to tell her, I didn’t want her to know before my immediate family but anyway they came quite quickly afterwards and.
How terrible.
But, you know, of course they were upset but.
Did he just give you this news and then disappear?
Yes quite quickly. He was ever so, he was a nice, but very young.
He was, you know, it was just really after he’d gone I thought “Oh here I am, one minute I’m not too good but the next minute” I don’t think I’d ever heard of pancreatic cancer before. Anyway what happened next… oh my family came and, the youngest son’s very emotional and I knew that he was going to be the one, my daughter is as well but he’s the worst, and I looked at him and his eyes filled up with tears and I said “Look I don’t like it but we’ve got to get through this together” and from then on he’s been wonderful.
The next stage, I saw, I was moved then from the medical assessment unit to a ward and my daughter had spoken to a consultant and, a young one, and he said that another consultant would be coming to discuss the situation with us so we met him in a little private room on the ward and that was dire. I can’t tell you how, my daughter calls him Dr Death because he, he just said “Well you’ve got pancreatic cancer its probably the most common sort and that’s the most difficult to cure and to treat” he said “There’s going to be a meeting on Thursday, the multi disciplinary meeting and, you know, they will have the same diagnosis as me, I’m sure 90% will be the same”. Well it was awful really, we had really a nasty day then, you know, thinking about it.
Did he not say that there might be something they could do at that stage?
He said they would probably be able to give me chemo but it is difficult to treat.
Anyway we got through the next two days and they all turned up for the result of the multi disciplinary meeting but no one showed up so they came again the next day and this time a very nice young doctor came.
And he said, “We had the meeting yesterday and we’ve decided you’re a good candidate for the operation”. I couldn’t believe it and I was a bit, I have readjusted my mind to not having it, I thought “Oh dear do I want this operation” but of course I did it was just the initial shock.
David was unsure of his diagnosis so was shocked to find himself in a hospital that specialised in treatment for cancer.
David was unsure of his diagnosis so was shocked to find himself in a hospital that specialised in treatment for cancer.
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And then I was told I needed to go to a specialist hospital for further care. But they wouldn’t tell me why. They never really gave me an indication of why I needed to go there. Just I needed to go
I got to the specialist hospital. I was met by a nurse who introduced herself, and told me that I was booked in for surgery, which was the first we’d ever, or it had ever been talked about, any surgery. I didn’t know about any surgery at all. And then I was taken to the ward, and on the ward when we arrived, we were sat in the sort of reception area to the ward, and there were lots of leaflets on, on cancer, different cancers, different, I can remember there was prostate, and they were all gastric sort of cancers.
And that again was a big, big shock, a realisation that really maybe, what I’d been told about non-specifically by a doctor, what seemed many, a long time ago, I suppose in reality was a number of weeks, what was more and more likely to be, what the cause was.
Lesley had been told she had a lump. She didn't realise she had cancer until she was introduced to a Macmillan nurse.
Lesley had been told she had a lump. She didn't realise she had cancer until she was introduced to a Macmillan nurse.
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So what did they say was the matter when you were in hospital, when you got to hospital?
They just found a mass.
That’s what they said?
Yes. Well they could see this blockage, but didn’t know properly what it was.
So I had an MRI I think it was the following week.
And I had to wait for the results for them, and I was told I would get the results at another hospital, which was a specialist hospital. So 22nd December 2008, I went along just expecting to be told, “Oh, it’s a lump. We’ll just cut it out.” But I didn’t realise it was cancer until I was actually introduced to a MacMillan nurse.
I wasn’t told it was cancer.
My husband even went to work; we couldn’t afford to have him off work. You know, me, really. Especially with it being near Christmas. My daughter was with me, she’d just broken up from school, you know, my youngest daughter. And my brother-in-law because he was off with disability anyway. So he agreed to take me with it being so far away. And it just sort of went over my head and I thought, “Oh I’ve got cancer. It’s a cancerous lump.” Because you don’t get introduced to a Macmillan nurse unless you’ve got cancer. But the doctor didn’t actually say, “You’ve got cancer.”
Some relatives we interviewed said they had been told the diagnosis before the person who was ill. This was usually when that person had been very ill at the time or if the outlook was bleak. Simon found it very hard to keep that secret for a few days.
Getting a prognosis
Most people were given a diagnosis of pancreatic cancer but no prognosis. A prognosis is when the doctor gives you an idea of whether your cancer can be treated and what might happen in future. Some said they did not want to know how long they had to live; they did not want any more bad news.
However, others asked their doctors for a prognosis. Elaine wanted to know so that she could ‘arrange her life’. At first she was told she had 16 months to two years to live. Sixteen years later she was still alive and well. Some relatives we spoke to had also asked for a prognosis to know what to expect.
Some doctors made a prognosis when discussing treatment options. Tony’s surgeon told him that he had only 18 months to live unless he had surgery.
The doctor’s prognosis often changed as time went on or as treatment options became clearer. Sometimes different doctors gave different prognoses. Hamish’s GP told him that he had ‘very little hope of surviving’, but later his consultant was ‘100% positive’. The surgeon told Hamish that he could have surgery, and Hamish left that consultation feeling ‘absolutely grand’.
Some people were upset to get different information from different doctors. Others said they understood why this may happen (see ‘Communication with health professionals’).
After first being told he did not have cancer, Peter was told he had a neuroendocrine cancer and that he had only months or a few years to live.
After first being told he did not have cancer, Peter was told he had a neuroendocrine cancer and that he had only months or a few years to live.
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I remember it very clearly, they said, “There’s something tiny in your pancreas.” I said, “What do you mean, tiny?” So he said, “Well it’s like dogs balls,” I’m not really sure what dogs balls look like, but they, those were the words and definitely it was going to be, it was sort of, the whole thing was played down. It was not a big deal. It was small we’d get, we, and then we’d have to find out a little bit about them, they did a biopsy, they said, and then the whole pitch then was, “Don’t worry, it’s not cancer, it’s, you know we can deal, we can deal with this. You may have to have an operation.”
And then I remember it very vividly one evening going to see a very harassed doctor in a big London hospital, who was extremely tired, not someone I’d known before, huge queue outside. It was like being in a bus station. He didn’t know me, we’d never met before. He looked at the things and said, “You’ve got this” that’s the first time I heard the word, “this neuroendocrine tumour of your pancreas. It’s extremely large. It’s totally inoperable, not even close to being operable, and I’m sorry you know there’s nothing we can do for you.” I said, “Oh, that’s not very good.” He said, I said, “What’s the, what, what happened, what will happen, what do I actually?” I think I remember saying,” What do I actually die of?” You know because it, what is the point, he said, “Oh you just fade away,” he said. I said, “Well when?” He said, “Well a few months, a few years, I mean it’s hard to say. A few months, maybe a few years if you’re lucky.” And it was suddenly just like that. After, very kind of, but at least at that point, at least I had someone who would be straight up and had, and we knew what it was. It wasn’t good news but…
What sort of specialist was he?
He must have been a, I think he was probably a gastro-enterologist I should think. He just looked at the pictures, and what one doctor had calmed me, I’m not really criticising; I mean it’s hard, I can understand their problem. If, if a doctor, if a, sort of sees someone with a tumour in their pancreas, when they say, “You’ve got pancreatic cancer.” And then the guy goes back home, discovers what the prognosis for pancreatic cancer is and is deeply depressed. So you try and perhaps just hide from them the fact that they’ve got pancreatic cancer, until you can discover whether you can do anything about the neuroendocrine, or the standard pancreatic cancer. Until you can find out whether you can do anything about the neuroendocrine sort.
Hugh's mother was given about three months to live. Then doctors decided they could do a Whipple's operation, which improved the prognosis.
Hugh's mother was given about three months to live. Then doctors decided they could do a Whipple's operation, which improved the prognosis.
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She was diagnosed as having pancreatic cancer, which is not, no-one wants to get any cancer, but pancreatic cancer is classically not one that you particularly want to get. And the prognosis was pretty bleak and they said they thought she probably had about three months to live.
And then in the subsequent days they slightly changed their mind, they revised that and thought that they could do this operation to remove the pancreas, something called a Whipple operation. And they said that there was a, I can’t remember what the percentage chance was - it’s exactly the sort of thing you need to know and I can’t remember - of that being successful in terms of a total cure, and then there was a certain other percentage which was successful for, you know, to give her another few years.
Simon and his wife, Karen, were told that she had inoperable cancer, and were shocked to hear that she only had about two years to live.
Simon and his wife, Karen, were told that she had inoperable cancer, and were shocked to hear that she only had about two years to live.
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What did the consultant say then?
She said that, you know, you go into a little clinical room, off a corridor, and sit down and she took a nurse with her. She in fact took two nurses with her this time, you know so by this stage I, I know that if someone takes a nurse with them it’s serious.
And she said very matter of factly she said, “Well you know,” along the lines of, it is cancer and it is malignant, and she said, “It’s in your pancreas, and we can’t operate”. I think fairly early on she said, “We can’t remove it.” And then you know, I then said, “Well, okay so you can’t remove it, but,” and she said, “Well we can give you chemotherapy to contain it.” So I then said, “Okay well, so you can contain it then indefinitely?” Because it, you know, you just, I think you go into shock and you clutch at straws, and she said, “There is only so long that you can contain it for you know, it will develop but we, but we can’t get rid of it.”
And I think I then was carrying on with, “Okay, well we’ll contain it then.” So she, I think she knew then that the message wasn’t getting through. But the way the, then she just, she then just said, I think it was along the lines of you know, “You’re looking at you know another two years, and basically you need,” she said, “Basically you need to make provision for your children now.”
So that was quite shocking?
And that, it was that phrase, just stuck with me all, you know even, even now I just think, it was sort of too, she wanted, she was using a shock factor to make the point. And I was, I’m very mixed, I’m very mixed because you know she would’ve known that we’re, that as soon as she told us the news you go into shock. I mean you go into a deep shock where you’re not really thinking straight. And maybe they’re trained to, you know maybe, I don’t know, but then you, maybe they use shock to sort of shock you out of it. You know the equivalent of slapping someone’s face. Where she you know, and she knew that mentioning the children would make it real.
How did your wife react to that?
Ah well it was, I mean she, she wailed. I mean she, it was, it was slightly surreal, as you can imagine. It’s just
Awful.
She, Karen sort of, Karen I suppose had suspected that this was a possibility. She must have done. So when she heard the words that she was, I suppose you know, the back of her mind was dreading. She just was wailing and screaming, “No, no, no. Don’t say that. That’s not what I want to hear.” And sort of beating my, my legs in just anguish.
I’m so sorry.
Its, you know it’s something that you never recover from because it’s just very intense. And I just sort of went into shock and I just remember sort of, all I could hear in my, in my own head was the word, “No.” I was just shaking my head saying, “No, no.” I didn’t, you know I didn’t know what I meant by that. Whether it was, “No it can’t be true,” or, “No don’t tell me, “or what but I sort of shut down I think.
Last reviewed November 2020.
Last updated November 2020.
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