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Pancreatic Cancer

Signs or symptoms of a recurrence

The five year survival rate for people with pancreatic cancer is very low compared to most other types of cancer. Even after potentially curative surgery the cancer may come back months or years later. It may return in the area of the pancreas (recurrence) or spread to other parts of the body via the blood or lymph systems. A tumour formed by cells that have spread is a ‘metastatic tumour’ or a ‘metastasis’. These ‘secondary’ tumours are made up of the same type of cells as the original ‘primary’ tumour.
 

A consultant explains that a cancer of the pancreas often spreads to the liver or to the lungs....

A consultant explains that a cancer of the pancreas often spreads to the liver or to the lungs....

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If the cancer comes back in other areas, where is it most likely to recur?
 
The commonest site for recurrence is within the liver but also metastases or satellite lesions can appear within the lungs.
 
Or within often within the glands around the back of the stomach in the region of where the pancreas previously was. It can, occasionally, affect other areas such as bone but they’re much less common than the liver and the lungs.
 
Routine follow-up tests may indicate a recurrence even before new symptoms develop. This happened after Audrey had recovered from her initial treatment, which included a Whipple’s operation, chemotherapy and radiotherapy.
 

Audrey had felt well for a year but at a check-up the doctor found her blood CA19-9 cancer marker...

Audrey had felt well for a year but at a check-up the doctor found her blood CA19-9 cancer marker...

Age at interview: 73
Sex: Female
Age at diagnosis: 69
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So in December 2007 I saw the oncologist after having had the blood test the week before because that’s really the only way they can monitor what’s happening apart from a scan. And the marker is CA19-.9 it’s a cancer marker and they like it to be below 30, well mine had gone up to 180 so that was a sign that something was going on but he said “Don’t worry” it was just before Christmas, “Don’t worry about it, it could be you’ve a bit of an infection or something, we’ll do another one in two weeks time”. So they did another one in two weeks time, and that had gone up to 193 I think.
 
So then he said “We must have a scan”. So we had a scan.
 
Another CT scan?
 
Yes on February 15th so it was quite a wait, you know a month or so.
 
But it all takes time there are so many people aren’t there? So I had the scan on February 15th and went to see him a week later and he said there was a recurrence so it was a bit disappointing that was really.
 
Similarly, Michael’s recurrence was identified on a routine CT scan done in his follow-up.
When a recurrence causes symptoms they may be like those before the original diagnosis (see ‘Signs and symptoms of pancreatic cancer’), but other symptoms may also occur. Because many other conditions can cause similar symptoms people can find it hard to know whether to act on minor symptoms occurring during their remission - they may have nothing to do with the cancer. Ann had had a Whipple’s operation, followed by chemotherapy and although she felt well most of the time, on occasions she wondered whether the cancer had come back.
 

Ann was often concerned about tiredness during her remission; various pains were investigated but...

Ann was often concerned about tiredness during her remission; various pains were investigated but...

Age at interview: 62
Sex: Female
Age at diagnosis: 62
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I was thinking, going back to talk about the one or two times during the course of the last year that, how you’ve dealt with thinking about it, every now and then thinking, “This is it.”
 
[mhm]
 
And then maybe ending up with why you felt very sure this time, di- --
 
 [mhm]
 
-- as you hadn’t previous times. I mean there have, you’ve quite often said to me for instance that, “I feel weary.”
 
Yes, I think that’s right.
 
What do you think, what do you think you meant by that?
 
Well, I’m very used to being able to do a lot of things. And I would find sometimes at the end of the day or, that I just was, for example some days I was too tired to cycle up the hill to work. And then I’d think, “Gosh, what’s going on? Is there something?” And it was that sort of weariness. Or I’d go for a swim and instead of doing twenty lengths I could only do ten, and there was a sort of weariness that came over me. And sometimes when I’d say, “I’m weary” certainly my husband would say, “Well, you’re getting older.” And I just felt, “Well, I wasn’t weary like this last week. I’m not that much older.” [laugh]. 
 
But I think, and I’m just looking, I mean it’s difficult looking back with a retrospectoscope as to whether there’s been more of that in the last few months. Certainly I had…
 
I think the other thing about being weary was that I knew I was likely to have a recurrence. And I suppose therefore when I got like that I thought, “Oh, gosh, am I, have I got a recurrence? Am I being sensible? Should I ignore it? Am I making a fuss about nothing?” And it’s quite a difficult balance. Because I, after, I think it was after about nine months when I had some discomfort and I went for a scan, which did show something abnormal. But then when they repeated a scan it seemed to, they weren’t sure what it was, and it was normal, I thought, “Oh, well, I’ve made a fuss about nothing.” So, you know, there, it is that difficulty of knowing when to do something... 
 
And the other symptom I’ve had intermittently is pain in my leg. And I have had that investigated and they’ve never found anything. But the sort of pain is sort of a real searing pain that I’ve heard people describe with cancer, particularly at night. And I can’t explain why I’ve got it and nor can anyone else. So that’s always made me feel, “Gosh, there must be something going on.”
 
However, when she experienced a recurrence of the bowel symptoms she had had before the original diagnosis two years previously Ann was very sure this time that her cancer must have recurred. She went to her GP, who arranged a CT scan (for more about CT scans see ‘Diagnostic tests for pancreatic cancer’).
 

Two years after her surgery and chemotherapy, Ann had bowel problems again. She also had...

Two years after her surgery and chemotherapy, Ann had bowel problems again. She also had...

Age at interview: 62
Sex: Female
Age at diagnosis: 62
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But mostly I’ve been really well. And I’ve been cycling, playing tennis, swimming, a lot of travelling, seeing grandchildren a lot, looking after them. Working, meant to be half-time, much more than that. I gave up working as a GP after thirty years. And it was absolutely the right thing to do, because I didn’t want to look after people any more. And I just didn’t have the stamina also, to be doing those very long hours. I needed more flexibility. And I think I got lulled into a sort of s-, into the state of thinking it was going to be all right, but not quite. But I think everyone else got lulled into that feeling. And yet I knew what the statistics were. I knew that the prognosis really is still terribly bad. And having everyone, everyone was sort of drinking my health two weeks ago. You know, “You’ve done two years. Isn’t this fantastic.”
 
And then suddenly I started to get some bowel symptoms again. And that is sort of how the whole thing had started, that I was waking up early needing to go to the toilet and open my bowels. And it started again that, although my bowels had been problematical all, for the last two years in that I was having to go four or five times a day, suddenly I was waking at 3.30 in the morning needing to open my bowels. And I thought, “Oh, I wonder what’s happening?” And then within a week I was getting quite a lot of discomfort in my abdomen, in what’s called the epigastrium, just underneath my ribs, in the middle, and it was feeling tight. And I noticed that my skirts, which after the operation and for the last two years had been really falling down, I’ve had to put a belt on them. It had been very nice really because I went back to the weight I was when I got married. But suddenly I was feeling distended. I hadn’t put on weight but I was just feeling bloated. I had a hernia which was feeling very uncomfortable. And so I went for a CT scan. 
 
And I’ve just remembered something else about the last two weeks which made me think that things were different, was that my taste changed, and I’m really interested in taste, in that suddenly I was wanting chicken soup broth again and custard and all sorts of things which I wanted when I was really ill. And I didn’t want to eat the sort of food which I had been eating previously. I just fancied those sorts of things. And somehow I think taste is really interesting, as to how illness affects it. I mean I know chemotherapy does, it gives you a metallic taste and various things. But this is, you know, I hadn’t had any treatment. It was just feeling something was going on and wanting certain sorts of comfort food.
 
It was comfort food rather than you felt that other foods would upset you?
 
I think it was a bit of both actually. I just, you know how sometimes you really long for something sweet or really long for something savoury. Well, I really longed for that sort of food. And probably, so something quite, well that sort of soup. I didn’t want other sorts of soup, but I wanted that sort of soup, and started making it for myself. And, and buying Marks and Spencer’s custard. I mean the sort of thing I didn’t normally do at all [laugh]. And I felt that’s what I wanted to eat.
 
Other people we interviewed also recalled the symptoms that led to doctors finding a recurrence. Helen had a Whipple’s operation in 2007 and hoped that she had been cured. However, in 2009 she felt exhausted and suspected something was wrong, so asked for an earlier check-up appointment. A CT scan revealed ‘secondary tumours’ in the liver.
 

Helen had felt back to ‘normal’, but almost a year after her treatment finished she felt...

Helen had felt back to ‘normal’, but almost a year after her treatment finished she felt...

Age at interview: 49
Sex: Female
Age at diagnosis: 47
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In 2008, I finished the chemo round about April. I was back to normal more or less really. I was working, as I said, coping with chemo. That was fine, doing everything that I would normally do. We had a couple of holidays. And life was really getting back to normal. We were doing lots of work on the house. So I felt like I had my life back. Cancer had been, had been, gone, dealt with, and that was fine. So 2008, we had a really good year, especially when the chemo finished. Once the chemo finished my, my energy levels rose and I felt normal basically. My scar was fine. I was having no problems with that. No problems with my digestive system at that point. I wasn’t taking Creon. I didn’t need it. 
 
We got to the end of the year and we were coming up to Christmas, and I was starting to feel a little bit tired, but not majorly tired. And again I was putting it down to work, being back at work and Christmas coming up, and didn’t really worry about it. But then over Christmas I found it very, very hard and I was more and more tired again, feeling exhausted again and I was getting really worried. And, oh, I knew I was due to see my consultant again in February, so I just thought, you know, “I’ll wait and speak to him in February.” But by the first week in January, I couldn’t ignore it any longer. I was getting really worried. And I emailed the chemo trial co-ordinator, who was absolutely wonderful, along with the Macmillan nurse, gave us loads of support, was there at the end of the phone if ever we wanted to speak to her. And I just emailed her and I, and I said, “Look, I’m not feeling right. I can’t put my finger on it, but I just know something’s not right. I’m tired again. And there’s a niggle there that won’t go away. Do you think I should bring my appointment forward?”
 
What wouldn’t go away?
 
The tiredness, just generally not feeling right again. So she emailed me back and she said, “Yes.” She said, “It’s probably nothing but I’ll have your appointment brought forward and bring you in.” So she did that, and I went in about four weeks sooner than I should have done. And I explained to the doctor I saw on the day, how I was feeling. And again because there was nothing specific and I couldn’t, you know, say for sure that something wasn’t right. I just knew I wasn’t feeling well. And he said, “Well, I don’t think it’s going to be anything.” He said, “They are a bit vague.” He said, “But just in case, we’ll send you for a scan.”
 
In 2005 John (Interview 40) had a Whipple’s operation followed by chemotherapy. After that ended he resumed work in the ship building business for a while before retiring. In June 2009 he developed pain under his rib cage. He went back for more tests, including a Positron Emission Tomography (PET) scan. This type of scan can show how the body is working, as well as what organs look like. It scans the whole body. With a PET scan people first have an injection of a very small amount of a radioactive drug (tracer). Then they rest for about an hour while the radioactive tracer spreads through the body. The scan produces an image of the radioactive tracer in the body.
 
By looking at the PET scan doctors could see that John had cancer in both his lungs, which they suspected had spread from his pancreas. The lung specialist did a bronchoscopy (looking into the major air passages). He wanted to biopsy one of the tumours in John’s lungs but was unsuccessful, so could not confirm that they had spread from the pancreas.
 

After his treatment finished John felt well for four years but then developed pain under his rib...

After his treatment finished John felt well for four years but then developed pain under his rib...

Age at interview: 57
Sex: Male
Age at diagnosis: 52
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Did you have symptoms that sent you back to the doctor?
 
What I had was, initially, with, as I explained, was abdominal pains but this pain I was getting was under my rib cage.
 
And it was very, very sore. I went to my GP to enquire about that, whether it was related to the pancreatic cancer or whatever. They referred me to the general hospital again for different scans and then they discovered it was it was, the cancer had spread into both lungs.
 
So this is a secondary.
 
Yes.
 
From the pancreas.
 
Yes. But what they, there was a pancreatic team or the pancreatic surgeons are confident that it’s not back in the pancreatic area.
 
But they think it might have come, originally, the lung problem, from the pancreas.
 
Well, well, they’re undecided on that. They don’t know whether it is or not or possibly I’m just one of these unlucky people.
 
When did you start to think you had other pain under your rib cage? What year was that?
 
That that was just last year. It would be about.
 
Two thousand and nine.
 
Two thousand and nine. I would think, round about again, June July time.
 
And so you went back to your pancreatic team.
 
Yes.
 
To start with.
 
Ah ha. 
 
And did they take X-rays or?
 
No, no, what I did was go back to my GP.
 
Okay, and they referred you?
 
And they referred me for CT scans.
 
And they sent me to another specialist hospital for what they call a PET scan, which is a radioactive dye that’s inserted and that’s when they discovered that the cancer had had moved into my lungs.
 
Can you tell us what a PET scan is like please?
 
I can’t remember the what the abbreviation actually means.
 
But what it what is is a large cylinder that’s sent up from Sheffield, radioactive, and they put a dye like a sugar, a coated dye into to your system and that shows up all the bad bits, as it were, and your body comes out bright yellow so they can identify there are tumours or whatever and that’s why they’re confident that it hadn’t returned to the pancreatic area.
 
And what’s it like in the room when it’s being done?
 
It’s just the exact same as a CT scan and you’re going inside the polo mint, as it were. It’s just the exact same but the big difference is the PET scan takes the x-rays from above and below and sideways.
 
It’s more in depth than the CT scan.
 
And this radioactive substance, how does that get into you, did you say?
 
They put it in through a cannula.
 
Right.
 
And then you drink a lot of water for the next four hours to just flush it out of your system.
 
It’s not uncomfortable.
 
No, no. 
 
Okay. So from that they decided that there was some cancer in the lungs.
 
Yes.
 
But they don’t know whether it’s the secondary from the pancreas or whether it’s just an unfortunate.
 
Yes.
In 2004 David (Interview 09) had a Whipple’s operation, followed by chemotherapy and radiotherapy. After the treatment ended he felt very well indeed for two years. Then he started to feel unwell again, but at first CT scans and blood tests looked normal. David felt ill for over a year. Eventually after more CT scans and a PET scan, his doctors identified a recurrence.
 

For two years after treatment David felt well, and he went back to work. Then he developed...

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For two years after treatment David felt well, and he went back to work. Then he developed...

Age at interview: 45
Sex: Male
Age at diagnosis: 38
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So what happened after that?
 
Well I returned to work fighting strong really. The chemo had finished, went back to the hospital had a scan, the scan came back clear. Everyone was hugging each other.
 
It was all over kind of. And I worked for, well when I first felt unwell again it were just December, late December 2007, or was it, 2006. I was working, overseas doing some training, and for the first time just felt a slight nauseous, and just a change in my body which wasn’t usual. Just didn’t feel right.
 
But from September 2004 to December 2006 brilliant, just normal life again. Fortunately put loads of weight back on. Went up to about fourteen and a half stone, became a big guy as I was before this all had occurred. But I always used to say I was a big fat guy who was fit. I was fighting fit. I had a, I have a mountain bike, was riding the bike, eating well, working well, enjoyed a good sociable drink. I don’t think I ever drank to excess. 
 
I even did some good operational police work. Everything was fine. And the view was very much is every three months I went back for an appointment the longer I got away from the surgery date the greater or the better the prognosis was. So I kind of thought I was out of the woods really.
 
Did you have a CT scan every time you went back?
 
I had CT scan I think was every other, so about every six months I’d have a CT scan. But the clinic appointments were just arbitrary, I’d just go along, they’d say, sort of say nothing. CT scan’s fine. I’d say I feel fine, see you in, see you in three months; and you know it was almost like why do I need to come here?
 
Right up until I felt the change in December 2006.
 
And then what happened?
 
December 2006, as I say, for the very first time I can remember driving the car back from the base training, and just felt nauseous, didn’t want my tea. I didn’t want to eat which again for a guy that loved food was out of character.
 
Went through the trip, came back, I remember had the Christmas, I remember speaking to my wife saying that things aren’t right here and I got a little bit upset because again I think I felt possibly that there was a reoccurrence of the, the illness. Straight after Christmas got in contact with the specialist hospital and had an appointment.
 
They booked a CT scan, the scan didn’t show anything. The blood tumour marker the 19-9 which is the cancer marker for pancreatic cancer didn’t show anything. 
 
And then I spent well over a year going back to the hospital, saying, “I don’t feel well”. I started to get terrible diarrhoea, at that time it was diarrhoea where very little notice from the feeling of needing to go to the toilet to going to the toilet would be sometimes a minute, two minutes. I couldn’t get to work very well because sometimes I’d need the toilet on the way to work. And then literally I’d have to find different toilets on the way so that if I did need to go I could divert.
 
And, and didn’t, well I wasn’t happy really. Losing weight, every time I went back to the hospital I was losing weight at quite a dramatic rate and saying to the hospital there will come a point where I can’t lose much more weight it will become critical. Luckily because I was a big guy there was quite a bit to go. I mean now I’m nine and a half stone. 
 
Eventually we decided to go private. So I went to the local hospital, back to the original physician that I saw who had given me an indicator of what he thought it was. Saw him. He ran a series of tests and did a CT scan.
 
And then out of the blue a letter arrived from the oncology unit at the local hospital for an appointment. I went to that appointment, and again you know when you’re sat in an oncology department waiting to see a doctor that there’s only one thing that they’re going to tell you. I went to see the doctor, and he said there was a re-occurrence of the disease.
 
How did they know that?
 
I think from the CT scan predominantly. That, I think and again I don’t, I’m not a radiologist. I think what is and has and always will be is there’s lots of, obviously through the surgery, there’s lots of scar tissue. And that area is very unusual because of the level of surgery that has been done. I’ve got no duodenum, and the level of surgery that’s been done. But it is, is using, it was his interpretation, he believed that there had been a, been a re-occurrence and he offered to put me back on chemotherapy.
 
I discussed it with my wife. We felt the hospital that we’d been under although it, though we didn’t, weren’t happy with them, we felt they had the best options available so we asked, and which they kind of did at the, at the hospital, they said, “We’ll collect the file, the scans”, all his diagnosis, took it back to the specialist hospital, presented it to them. They then conducted a PET scan, which is a scan basically where they do a CT scan with I think they’d use radioactive glucose which basically creates hot spots, and the centre to which the doctor had picked up was shown as a hot spot.
 
And then the specialist hospital, my original hospital then basically at that point then agreed that there had been a recurrence.
Although some people had not had potentially curative surgery, they had had chemotherapy or radiotherapy and hoped that their cancer was at least in remission. Peter (Interview 43), for example, had had chemotherapy and CyberKnife treatment (see ‘CyberKnife stereotactic radiotherapy and its side effects’). He was considered suitable for CyberKnife treatment because his doctors did not think that the cancer had spread. After this treatment Peter hoped that his cancer had gone. He enjoyed a full life which included playing golf. However, eleven months later Peter developed jaundice and doctors discovered that his cancer had come back and had spread. He had to start chemotherapy again.
 

Peter had Cyberknife treatment and was well for 11 months. Then he developed jaundice. Tests...

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Peter had Cyberknife treatment and was well for 11 months. Then he developed jaundice. Tests...

Age at interview: 71
Sex: Male
Age at diagnosis: 69
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So I started being monitored on a quarterly basis commencing September 2009. And the first consultation, “The tumour has not resurrected, there’s been no spread, everything seems alright. How are you?” And I said, “Well I’ve still got a few problems with the bowels and I get a bit tired.” “Okay, okay. But otherwise you’re alright?” “Yes.”
 
Did they do a CT scan then?
 
I well I’ve had scans yes. I was having scans, before each consultation there was a scan. Well not quite all because they slipped up sometimes.
 
The second consultation took place in December. The news was the same; there was no resurrection of the tumour, no spread of the disease, “On your way.”
 
This is 2009?
 
In March 2010 the news was not so good. It did appear the tumour was what they called progressing. It was back to life. And another problem was that a duct leading from the liver to the pancreas was blocked as a result of deflating. The deflating being caused by the pressure on it from the tumour. And an operation might at some stage be necessary.
 
Well it came to pass that in May, having come back from Spain on a golfing holiday where I enjoyed life to the full and eating, drinking, playing golf regularly, I came back a lighter shade of yellow.
 
Oh dear.
 
But within three days it was a darker shade of yellow, and the urine looked something like 100% navy rum. So I rang [the specialist hospital] up on a Saturday morning which didn’t please them very much, but they’d always said, “Any problems, let us know.” 
 
And I went, they all of a sudden woke up to the fact that it was looking pretty grim and they’d better do something about it rather quickly. So a further scan, there were more blood tests, some of which they lost. There was another, an ultrasound scan, which showed the liver is perfect, it’s just a matter of this duct, and the stent operation will be necessary. So we’ll have you in. 
 
They brought forward the ultrasound scan realising there was a degree of urgency. And I found myself in the hospital for the operation, the stent operation. And I think it was about the 16th of May 2010…
 
I came out of the hospital on June 3rd, this coincided with another consultation at the hospital when they repeated that the tumour was progressing, and there was a fear that it might be spreading towards and into the liver.
 
Oh dear.
 
They didn’t, they’re not very categoric about it. They ummed and ahhed and iffed and, but there was no doubt about it.
 
People reacted to the news that their cancer had come back in many different ways, including, shock, disappointment, sadness, acceptance and optimism (see ‘Learning of a recurrence’).

Family members of some of the people who had died of pancreatic cancer recalled that the person they had cared for or had supported during their final months with the disease had developed other more debilitating symptoms before they died (see ‘Symptoms of more advanced disease’).  


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Last reviewed September 2018.
Last updated June 2015

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