Pancreatic Cancer

Tests and diagnosis of pancreatic cancer

People told us about their experiences of getting tests to diagnose pancreatic cancer. The symptoms of pancreatic cancer can vary and can be caused by many other things. This can make it hard for doctors to spot. If you have symptoms, your GP may refer you to the hospital for tests. These might include:

Blood tests
Ultrasound scans of your tummy
Computer Tomography (CT)
Magnetic Resonance Imaging (MRI)
Magnetic Resonance Cholangiopancreatography (MRCP – a type of MRI that can give clearer pictures)
Fluorodeoxyglucose-Positron Emission Tomography/CT (FDG‑PET/CT)
Endoscopy (ERCP)
Endoscopic ultrasound (EUS)
Colonoscopy
Biopsy

(see ‘Endoscopies and biopsies’ for more information).

Blood tests

When a doctor sees a patient with symptoms that could be pancreatic cancer doctors usually order blood tests. These tests might be to check the liver function and blood sugar levels. Some people we interviewed had blood tests which had all come back completely normal. Other people's results had been abnormal.

Hamish told his GP about his symptoms. After a blood test the GP told Hamish that he probably had pancreatic cancer.

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Age at interview: 76

Sex: Male

Age at diagnosis: 72

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So which month did you start to think there must be something wrong?

September, October time.

And that’s when you thought that it was mainly due to your slightly smelly bowel motions?

Yes, very smelly and the fact that then I started losing weight, I thought, “This is great”, because I was losing two or three pounds a week. I never thought I had cancer or something like that, no.

And when you first went to the GP you told him this. What was his reaction?

Blood sample.

Straight away?

Yes.

He didn’t try you on any other treatment first?

No. I gave him the signs and he said, “Well, we will get a blood sample first.

So that was that, and he was obviously right.

And from the blood sample did he give you, he didn’t give you a diagnosis at that point?

He said, “It looks like pancreatic cancer.” But then they put me on an ultrasound and that showed it up quite clearly.

Colonoscopy

If your symptoms include change in bowel habit, e.g. loose poo, the doctor may want to test the poo for abnormal enzymes or blood. They may suggest a colonoscopy or sigmoidoscopy to check for bowel abnormalities.

Ann had a colonoscopy and an endoscopy

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Sex: Female

Age at diagnosis: 62

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And did you feel quite well otherwise?

I felt completely well. I was eating properly, nothing, no pain nothing. And the blood tests all came back completely normal. But I saw the gastroenterologist, who I knew reasonably well because I’d referred a lot of patients to him in the past. And, but when I told him the story he took it very seriously and said, “We ought to check a stool specimen for, check a stool specimen for blood but also for some enzymes”, and I ought to have a CT scan, an ultrasound scan. And he arranged all that.

At this moment, did you know what he was thinking?

No.

Were you, I seem to remember you thought that you might have bowel cancer?

Yes, I thought it was bowel cancer.

Did it ever cross your mind that this was pancreatic?

No, absolutely, it never crossed my mind what his final diagnosis was. Now I, it must have crossed his mind to a certain extent because he wanted the stool specimen examined not just for blood. Which as a GP I wouldn’t have normally. I would have done it for blood, but for nothing, not for anything else. But I suppose because I said they [stools] were a slightly different consistency and slightly fatty. But I certainly wasn’t thinking pancreatic at all. And he was obviously thinking bowel cancer too, because he arranged for me to have a colonoscopy, which, you know, a tube, where the little camera looks up your bowel. And so he arranged that. But before I had it he rang me and said, “The stool specimen which...” I mean I took a stool specimen, which I forgot to hand in. So I had to then, three days later I found it in my bag and had to do another one, which was slightly embarrassing. He rang and said, “Look, the stool specimen does show that one of the enzymes is wrong, two of the enzymes are wrong, and therefore we ought to do an endoscopy at the same time as the colonoscopy.”

I wasn’t feeling anxious or worried this time, although taking the preparation for the, for the colonoscopy is pretty horrible. You have to drink the, this salty solution, rather a lot of it, and then the whole of your insides just get cleaned out. So you, I had to take the day off work before so that I could be on the loo most of the time. And it’s really very unpleasant. And I think most people, most people you talk to who’ve had it say it’s much more unpleasant than the colonoscopy itself.

Ultrasound scan

An ultrasound scan is usually one of the first investigations to be done. The ultrasound scan is painless. It uses sound waves to create images of the inside of your body. The scans are similar to those that pregnant women have. Some people had to wait for a few weeks to have scans in NHS hospitals or clinics. One man was told that he had to wait three weeks to have a scan locally. However, he could drive 30 miles and have the scan done the next week in a private clinic paid for by the NHS.

Richard described what his ultrasound scan was like. He was disappointed that he had to wait so long after it for a CT scan.

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Age at interview: 63

Sex: Male

Age at diagnosis: 60

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Could you, you’ve talked about various tests. What was it like to have an ultrasound test?

Well, quite harmless. Quite, almost pleasant. Yes, there’s nothing-

What happened?

They put some jelly over your abdomen and then rub this strobe over, over your abdomen and the picture or the echo comes up on a monitor. It’s very much, well, it’s exactly the same as what you see quite often on the tele when you see pregnant ladies having a, an ultrasound test. It’s the same sensor and everything. And I mean it’s harmless, it’s non intrusive. Yes, it’s quite a useful tool. The thing that perhaps disappointed me with it was having, that test proved positive, they then wanted to back it up with a CT scan. So it makes you wonder, “Why not have the CT scan in the first place?” But I suppose it might be a question of time and money and so on.

How long did you have to wait between the ultrasound and the CT scan?

The testing procedure took really six months. And I, I was disappointed because I would be, an order would be put in for a test, and I would get a date for that test in perhaps two weeks or twelve days later, and then go for the test, and then I would have to wait probably another twelve days to see the consultant or the registrar to find out the result. And so, I mean I complained at one time that I was more or less getting one test a month. Two weeks to wait for the test, another two weeks to wait for the result roughly. And I found that disappointing.

The behaviour of the person doing the scan (the radiographer) made some people aware that something was wrong. Anthony’s wife told him that the radiographers had been chatty at first, but then suddenly went silent.

At Ann's ultrasound scan the radiographer told her that her bile duct and pancreatic duct were dilated.

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Sex: Female

Age at diagnosis: 62

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And he [the gastro-enterologist] said, “And then you’ve got an ultrasound in two days’ time.” So I went for the ultrasound and that’s when I really realised what was going on. Because I went for the ultrasound expecting it to be pretty normal. And they did the ultrasound, and the, the radiographer who was doing it kept going backwards and forwards, backward and forwards over the top part of my abdomen. And so eventually I said, “Is there a problem?” And she said, “Actually, the bile duct and the pancreatic duct are dilated. And I don’t know why.” And I just knew then that I must have pancreatic cancer. Which I didn’t want to think about it really, because I know it’s a horrible cancer to have. And so I was pretty shaken by that really.

Alison was told she would have to wait four weeks to have an NHS scan so she chose a private referral to a consultant surgeon. She saw him within a few days and had a scan the next morning. Her husband’s private medical insurance paid for the scan.

Computer Tomography (CT) Scan

If ultrasound shows an abnormality the doctor usually orders a CT scan or other scans. People we interviewed had at least one CT scan after their ultrasound. CT scans are far more detailed than ordinary X-rays. The scanner looks like a large doughnut. During the scan the patient lies on a bed. The bed then moves slowly backwards and forwards to allow the scanner to take pictures of the body.

Before the CT scan some people were given an aniseed flavoured drink to help identify the stomach and small intestine. Some said that they didn't like the drink. During the scan the radiographer usually injected a dye into an arm vein to make organs and abnormalities more visible. The scan did not hurt.

Helen had several CT scans. It felt strange when the radiographer injected dye into her arm.

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Age at interview: 49

Sex: Female

Age at diagnosis: 47

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I don’t know what else to say about a CT scan really. It’s, from a patient’s perspective it’s just, it’s just the dye that they inject you with, which helps all your insides to stand out clearly on the scan. That’s not a problem. You don’t really feel it, apart from it can give you a sensation of warmth flooding your body. And it can also make you feel as though you’re passing urine. It’s, it’s a very strange feeling. But it’s fine. It doesn’t hurt. It doesn’t affect you. You don’t feel it afterwards. It’s literally a few seconds of warmth and then it’s gone. And it’s just like a big doughnut, the CT scanner, that you pass through on a table. It’s, you know, it’s not frightening. Well, I don’t think it’s frightening. Very simple.

Tony had to drink a litre of fluid before his CT scan. The radiographer also injected a dye into his arm. The scan was painless.

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Age at interview: 66

Sex: Male

Age at diagnosis: 65

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Oh to have a CT scan is, to me was absolutely nothing. The nurse said that it can make you feel if you want to wee, or it can make you very, can’t think of the word, and anyhow you just lay on your back, or whatever they’re going to do you. You go into a big dome type of thing, and it’s nothing, it’s just like a flashing thing is going round you all the time and when the, when you come back out they tell you to breathe out I think or in, they don’t tell you to breathe anything going in, it’s just coming out, hold your breath I think for a couple of seconds. And that’s it. And they ask you, “Did you feel if you want to wee?” I said, “No”. “Or did you feel something else?” And I said to the nurse, “Well if you’d been in there with me,” I said, “It might have, it might have been what you’re telling me,” I can’t think of the word but no, the CT, the CT scan is absolutely nothing at all.

Did they inject some dye?

Before the CT scan you have to,

Or do you have to drink something?

On the one occasion they did do the dye.

In the arm?

Yes, in my arm again there. And when she injected it the blood squirted all over her.

Oh dear.

And she asked me if I was on thinners, I said, “No.” She said well you’ve got very good veins and she said, “I’d better change my tunic because nobody else will want to see me like this.” And they done that and prior to going into the scan you have to drink a, I think it’s about a litre of orange juice, or blackcurrant or whatever you want, but it’s laced with aniseed.

Oh golly. That is the hardest part of the job, trying to drink that within an hour. You have to, you drink the first one very quickly, and then you’ve got the rest of the jug within the hour. And if you want to go to the toilet you’ve got to go within the first hour, the first half hour. But to drink the, me, I’m not a big drinker so to, to be laced with aniseed is another thing on it’s own.

And everything, as I say blackcurrant or it’s all, all tastes of aniseed anyhow so, you know so, that is a thing just before you, you go into the scan you’ve, you’ve had that into you. And then the first scan I had I didn’t have the dye. The second scan I did.

Vicky had dreaded having the needle put into a vein, and one day the dye leaked out of a vein into the surrounding tissue, which was ‘excruciatingly painful’.

Magnetic Resonance Imaging (MRI)

A few people we interviewed also had Magnetic Resonance Imaging (MRI). These scans use strong magnetic fields and radio waves to make a detailed picture of the inside of your body. The scanner is a large tube with a series of powerful magnets. The patient lies inside the tube during the scan. Donna had had MRI scans before and knew there was nothing to worry about. May said the staff had put her at ease. Some people found MRI noisy and rather frightening.

Richard found the MRI scan 'slightly alarming' because it was noisy but it wasn't painful. He had a 'dye' injected into his arm.

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Age at interview: 59

Sex: Male

Age at diagnosis: 58

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Yes, an MRI scan is slightly more dramatic than a CT scan in the sense that it’s using magnetic resonance, and you effectively you lie on a table, and the table moves into a tunnel. And then the magnetic resonance goes around you. It’s quite noisy so you have headphones on to protect your ears. In my particular case I was also having this contrast which I’d had on the CT scans, so that again I had to have a cannula and half way through the scan a dye was injected into my arm which then enabled them to see something different in my scan.

The process took about fifteen, twenty minutes. It was pain free. It was slightly, it was slightly alarming in as far as you’ve got all this noise going on, but it was pain free. Nothing, I didn’t worry about it.

Fred found the MRI scan 'very frightening' and claustrophobic. He found the CT scan 'scary' too.

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Age at interview: 64

Sex: Male

Age at diagnosis: 63

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Could you explain what it’s like to have an MRI scan?

Very, very scary, very, very frightening. You get headphones to put on so that they can, the person can communicate with you. And when you go inside it, it’s like lying in a, I would think the closest thing to lying in a coffin. You’re very, very enclosed. It’s very claustrophobic. And they, they play music in your earphones. I believe now, somebody told me, the outside of the scan turns round but you’re static. But that is very frightening. And I’ve spoken to people, patients in the ward afterwards, and they had to be taken out. They were too claustrophobic. I was able to, to last out, the both times that I had it. But I can see where they’re coming from. It is a, a very enclosed area. The CT scan is another scary thing because they inject you with a fluid and it goes right through your system. You get very, very hot feeling and it can be quite scary as well with that. So, but, you know, you, as long as you try and overcome your terror. It is a scary thing.

Positron Emission Tomography (PET)

Positron Emission Tomography (PET) scans can give a clearer picture of the cancer. One man needed a PET scan before starting CyberKnife treatment to make sure his cancer had not spread to other organs. Others had a PET scan when they developed symptoms which might have been a sign of the cancer coming back.

Laparoscopy

A few people said that before they'd had major surgery, such as a Whipple's operation, they'd had a laparoscopy (keyhole surgery). This was so that their surgeon could make sure that the cancer hadn't spread to other organs. Laparoscopy is an operation using a camera which goes in through one or more small incisions. It is performed under general anaesthetic. Most people said that this simple operation went smoothly, though Audrey recalled that when she awoke from the anaesthetic she was in a lot of pain. She thought this might have been due to the gas that the surgeon had put into her abdomen to help see all the organs clearly.

Lesley had a laparoscopy before her Whipple's operation to check that the cancer had not spread to other organs.

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Age at interview: 47

Sex: Female

Age at diagnosis: 45

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So I had to have a CT scan, no I had the MRI first. That’s when they seen that it was this cancerous lump. So I had the CT scan just after the New Year. And then about a week or so after that I was taken into the specialist hospital to have keyhole to see if it had spread. They said if it’s not spread you’ll have the big operation, which involves all these different things. But it sounds like rewiring your insides. Can I say the name of it?

Was it a Whipple’s operation?

Yes. It was a Whipple’s operation. I looked it up on the internet and it’s sort of wow it’s massive. It was a nine hour operation it turned out. So he said if it’s not spread you’ll go for the big one. I said, “Okay.” I was only under anaesthetic for about half an hour. So as soon as I was coming round and I could stand up and everything they said, “Right, you’re fine to go. But your doctor just wants to have a word with you.” So this other doctor comes who’s off this team, he come and he said, “Right you’re going for the big one, we’ll let you know when it is, in about two or three weeks.” I said, “Okay fine. So that’s good isn’t it?” He said, “Oh yes, very good. Can’t see any cancer on the outside.” I says, “Okay.” And he told me what its, it’s sort of like. He said, “Imagine it’s like an orange with an outer skin. And it’s all still contained in this skin, but it’s not touched the outside of the skin, on the inside of it. Do you know what I mean?” I said, “Okay.”

Last reviewed November 2020.
Last updated November 2020.