Pancreatic Cancer
Signs or symptoms of cancer returning
Here people talk about the signs and symptoms they had when their pancreatic cancer returned. It may come back in the pancreas (recurrence) or spread to other parts of the body. A tumour formed by cells that have spread is a 'secondary' or ‘metastatic' tumour or a ‘metastasis’.
Some people found out their cancer came back from a routine check-up. Other people had symptoms like they'd had before. People told us about:
- Bowel problems
- Pain
- Tiredness
- Jaundice
A consultant explains that a cancer of the pancreas often spreads to the liver or to the lungs. It may also spread elsewhere.
A consultant explains that a cancer of the pancreas often spreads to the liver or to the lungs. It may also spread elsewhere.
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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.
Discovery on a routine scan
Routine follow-up tests might show that cancer has returned, even before you have any new symptoms. This happened to Audrey after she 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 was abnormally high. A CT scan showed a recurrence.
Audrey had felt well for a year but at a check-up the doctor found her blood CA19-9 cancer marker was abnormally high. A CT scan showed a recurrence.
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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.
Michael’s recurrence was spotted on a routine CT scan done in his follow-up.
You might experience the symptoms of recurrence much like the signs and symptoms of the previous diagnosis of pancreatic cancer. However, there may be other symptoms too.
Symptoms can be small and match the symptoms of many other conditions that have nothing to do with the cancer. Ann had a Whipple’s operation, followed by chemotherapy. She felt well most of the time but wondered many times whether the cancer had come back.
Ann was often concerned about tiredness during her remission; various pains were investigated but no recurrence was found.
Ann was often concerned about tiredness during her remission; various pains were investigated but no recurrence was found.
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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.”
Bowel symptoms
The bowel symptoms came back that Ann had before the first diagnosis. At this point she was very sure that her cancer had recurred. She went to her GP, who arranged for a CT scan.
Two years after her surgery and chemotherapy, Ann had bowel problems again. She also had discomfort in her abdomen, felt bloated, and her sense of taste changed.
Two years after her surgery and chemotherapy, Ann had bowel problems again. She also had discomfort in her abdomen, felt bloated, and her sense of taste changed.
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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.
David had a Whipple’s operation, then chemotherapy and radiotherapy. After his treatment he felt very well for two years. Then he started to feel unwell again. He felt sick, off his food and had diarrhoea. He had CT scans and blood tests but they looked normal. David felt ill for over a year. Eventually he had more CT scans and a PET scan and this time the doctors could see that his cancer had come back.
Tiredness
Helen had a Whipple’s operation in 2007 and hoped that she had been cured. However she later 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 exhausted and suspected a recurrence.
Helen had felt back to 'normal', but almost a year after her treatment finished she felt exhausted and suspected a recurrence.
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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.”
Pain
John had a Whipple’s operation followed by chemotherapy. After that he went back to work in the ship building business for a while then retired. Four years after the first diagnosis, he got a pain under his rib cage. He went back for more tests, including a Positron Emission Tomography (PET) scan.
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 cage. A PET scan showed that he had developed cancer in his lungs.
After his treatment finished John felt well for four years but then developed pain under his rib cage. A PET scan showed that he had developed cancer in his lungs.
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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.
Yes.
But they don’t know whether it’s the secondary from the pancreas or whether it’s just an unfortunate.
Yes.
Jaundice
Some people had not had surgery. They’d had chemotherapy or radiotherapy. Peter, for example, had chemotherapy and CyberKnife treatment. 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.
People reacted to the news their cancer had come back in many different ways including shock, disappointment, sadness, acceptance and optimism.
Some people we talked to had family members who died from pancreatic cancer. They had developed different symptoms before they died.
Last reviewed November 2020.
Last updated November 2020.
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