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Pancreatic Cancer

Follow-up appointments and tests

During treatment, such as chemotherapy, people see their hospital doctors regularly and have various investigations to assess the progress of the disease. For people in clinical trials doctors may order blood tests and CT scans more frequently. After leaving a clinical trial they may wonder why they are having fewer follow-up appointments and scans than during the trial.
 

Ben took part in the TeloVac trial, during which he had a scan every three months. After it ended...

Ben took part in the TeloVac trial, during which he had a scan every three months. After it ended...

Age at interview: 40
Sex: Male
Age at diagnosis: 39
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And then what about CT scans? You had CT scans.
 
Oh, CT scans, lovely things, the polo mint [laughs].
 
Yes oh, gosh. I must have had now with the treatment, from the start of the treatment I think we’re up to the fifth CT scan, which is due in the next couple of weeks. I’m due another one because they usually do one every three months.
 
The first one was eight weeks at the start of the treatment. Then it went to twenty weeks and then so on and so on so we’re up to I think we’re on week fifty six, fifty eight now. We’re on somewhere around there and then it’ll be another three months, which is quite good going considering they were saying six to twelve months.
 
Even though they only say that as a guess, you know what I mean. They can’t, obviously, tell you, you know, “You could be here in six to twelve months or you may not be here in six to twelve months.” So they’ve got to give you some sort of guidance.
 
And then they took you off the trial.
 
They took me off the vaccine part of it.
 
But now they’ve said, because it’s been two or three months since that, when I last spoke to the trials nurse she said, “We’re taking, the protocols have changed to this treatment.” I said, “Well, What does that mean?” She goes, “Basically, we took you off the vaccine.”
 
 “So you’re sort of no longer part of the trial.” Which she’s telling me. Well, if I’m still not part of the trial why am I still getting the chemotherapy and the tablets because as I understand it, if the part stops of the trial you would be offered some other treatment. Well, again it’s changed with I won’t see the doctor now until the third of August.
 
Whereas I used to have the three weeks treatment then the first week back you’d see the doctor. So now I’m like, well, I don’t know what’s going on. I’ve asked the questions and seemed to be getting the same thing, “Oh, the protocol has changed.” So I’ve asked the Macmillan nurse to see what he can find out.
 
And he’s tried to find out what’s going on. As I said, I should be due in the next four weeks, a CT scan. It’s not going to happen because I don’t see the doctor now and I don’t see the trials nurse unless he’s, I want to speak to him. 
 
After treatment has finished people usually continue to have a regular check-up with either a consultant, a registrar or a nurse. During a check-up the doctor or nurse will do a physical examination, ask about any problems and check weight. The doctor may also order a number of blood tests, a CT scan or an ultrasound scan. Follow-up appointments take place frequently at first then less often as remission continues. Most people we interviewed were having check-ups every three or six months.
 

At first Fred had a check-up every three months. Now, just over a year since his operation, he...

At first Fred had a check-up every three months. Now, just over a year since his operation, he...

Age at interview: 64
Sex: Male
Age at diagnosis: 63
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Since the operation, how often do you go back for a check-up?
 
I go every six months now. It was, after the operation it was three months, and now it’s every six months. And I go to the clinic. They check, they take all your blood and they ask you how you’re feeling and your, how your medication, and just touch base with you and see how you’re doing.
 
Have you had another CT scan since the surgery?
 
No, I haven’t had any scans since.
 
So just to go back to when you go back for your check-ups now. They, what do they do? A blood test?
 
The blood test, test. They check your weight. They ask you how you’re feeling, how’s your appetite.  They don’t check your wound and they don’t check your, unless you specifically say you’re having problems.  So, so it’s basically just a check to see -
 
Is that with a nurse or with the consultant or a doctor?
 
It’s usually with the sister, the sister that meets you, and other nurses take your weight and your height and, and how you’re, how you’re feeling.
 
So you don’t always see the doctor?
 
You don’t always see the doctor. Most of the time you don’t see the doctor, unless you say there’s something like pain, they, they check you.
 

 

 

Carol saw her surgeon twice a year and her oncologist more often for regular check-ups. Her...

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Carol saw her surgeon twice a year and her oncologist more often for regular check-ups. Her...

Age at interview: 67
Sex: Female
Age at diagnosis: 65
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What sort of check-ups does he [the surgeon] do when you go and see him?
 
Physical examination, questions about how I feel and my life style.
 
Does he do a scan or anything?
 
Not my surgeon.
 
My oncologist I see every two to three months. Again it’s a good interview, a good examination with my oncology nurse present. I have bloods taken before the consultation, for cancer markers, which can be very misleading and a bit terrifying, because mine are going up and up and up and up. It’s an indicator that perhaps there is something going on, a few cells floating around, I don’t know. It’s not definitive, It’s a marker, it’s a guide. I could be just one of these people who produces these markers without anything abnormal happening. And the scans,
 
Who does the scan? The surgeon or the oncologist?
 
Oncologist.
 
The oncologist?
 
Oncology, oncology deals with all this. I’m scanned when my marker goes up.
 
Okay.
 
Nothing to see?
 
No, nothing to see. And about every two or three months,
 
Is that a CT scan?
 
Yes.
 
There is no standard protocol in the UK for follow-up after treatment for pancreatic cancer. How often people see a doctor or nurse for a check-up, and what tests or scans they have when, varies between hospitals. What happens seems to depend on the time that has elapsed since treatment finished, whether or not the disease has spread, patient preference, and doctors’ views about the advantages and disadvantages of doing regular scans.
 
After Elaine had fully recovered from both surgery and radiotherapy she wanted no more check-up appointments because the doctor had told her that if the cancer recurred there was little more he could do. She did not want to worry about every little symptom. She decided to try to forget that she had had cancer and to get on with life. However, that was 15 years ago and every case is different.
 

After Elaine’s treatment finished 15 years ago she decided not to go back for regular follow-up...

After Elaine’s treatment finished 15 years ago she decided not to go back for regular follow-up...

Age at interview: 73
Sex: Female
Age at diagnosis: 59
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And then the, oh, yes, the other thing I remember at the end of the radiotherapy, which in another sort of way helped me too, I spoke to the radiotherapist and he said, you know, “Would you like to be followed up every year?” And I said, “Well, what, what would happen if you found something?” And he said, “Well, nothing. There would be nothing we could do. But...”. So, I said, “Well, in that case I won’t waste your time, and I’ll forget about it.” Which was a good thing, because actually over the, certainly the first few years I often had a return of, I don’t know, the burping or, or something. I certainly had periods when I had floating stools. And I thought, “If I’d been told to come back immediately I was worried about something, I’d have been back and forward like a, a yo-yo probably.” But as I’d been told there was nothing they could do, I thought, I just put it to the back of my mind, got on, and it always went away. And for, for me it’s obviously worked. I’m not advocating that for anybody else if they’re told there might be something to do. But because I was told there was nothing that could be done after the radiotherapy, and it was likely to be a, a local thing, in the pancreatic bed, I just forgot about it then and thought, “Right, don’t even think about it. Just go on.”
 
That’s very interesting. It’s useful to know that.
 
Well, it, it was the r-, response I had to it because I think there’s nothing worse than thinking, “Is it a recurrence?” Or if I had a pain in my back, “Is it a recurrence?” And I thought, “Well, even if it is...”
 
Peter (Interview 36) had treatment for a neuroendocrine tumour. Unlike Elaine, he decided to have regular check-ups and regular scans to make sure he did not have a recurrence. He was a private patient.
 

Peter'’s treatment finished 10 years ago. Since then he has seen two consultants every six months...

Peter'’s treatment finished 10 years ago. Since then he has seen two consultants every six months...

Age at interview: 59
Sex: Male
Age at diagnosis: 49
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When you go back for check-ups do you have a CT scan?
 
We have, we alternate, a CT scan sometimes, with ultrasound which is apparently these days considered in the right hands to be superior. An ultrasound that pregnant women have but you put dye in the veins and you can, with a skilled operator, you can apparently see very clearly what’s going on there, better than you can with a CAT scan, with of course no radiation. 
 
You put dye in the veins for your ultrasound?
 
Yes.
 
Oh.
 
Yes. So it’s, I think they sometimes have a CAT scan…. I think the idea is that you don’t want to have too many CAT scans, and that also this ultrasound is in many ways superior. And I certainly, one of my experiences of all this is that, which I think people don’t understand about all these scans is that, and indeed all the doctors minds, is that what you see is what you’re looking for. You know you adjust the machinery, a CAT scan is just like you adjust venetian blinds, you know, and what you see through a venetian blind depends on how you adjust the venetian blind. 
 
What you see in a CAT scan is very likely what you’re looking for, because, and patients have this idea that they’re somehow like x-rays. Or, or like a simple comic idea of an X-ray. You know, you go in, everything in your body is suddenly completely open and visible. Then you go out again, and the doctor who who’s commissioned the x-ray can see everything.
 
Of course the world isn’t, it’s not like that at all. The human mind isn’t like that. Just as people are interested in economics, see economic solutions to problems, and people who are interested in politics see political solutions to problems, and people who are interested in farming see, and it’s all about the farm. So doctors and doctors' machinery is very heavily determined by what the doctor knows about, what he’s interested in, and how you set the machinery. So if anybody ever says to me, “Well you know we’ve got three bits of machinery here, and three different doctors, all of whom you could perhaps look at to see whether or not something had gone wrong.” I would always think that was a good idea. And one doctor, one bit of machinery, not so, not so good.
 
When you go back for your check ups do you always go back to one specialist?
 
I go back to the radiologist who was part of my treatment in the first place and who has the greatest personal knowledge of exactly how my insides were last time, so he can compare them with how they are now. 
 
Do you look at the scans with him?
 
No I don’t.
 
He just reports on them to you?
 
Well he reports on them in real time because you can actually see them when he’s, it’s…
 
Yes.
 
It’s like watching TV, you’re just literally are watching, and he says, “I can see this, and I can see this, and it’s all fine.”
 
Is that once a year did you say roughly?
 
I think I go every six months for that, and then I see the man, the oncologist who applied the Streptozocin and the other chemotherapies, the man who looked after me in hospital. I see him every, every six months too. And I’m pleased to say that the knowledge of this, these tumours has seemed to have been very greatly expanded in the last decade. The treatment that treated me has been tried on other people. It has sometimes worked and has quite often not worked. I think at the moment, it is my understanding, it’s not exactly sure why that is the case….
 
 
When you go back to the oncologist, what does he do? Does he take blood tests? Or, or what?
 
Yes I have a battery of blood tests, that last you know twenty or thirty odd blood tests just, just to check all the various…
Although some people had regular CT scans as part of their follow-up, others did not and wondered why. One man thought that he was no longer having scans because he had declined another course of chemotherapy. He thought that since he had rejected his oncologist’s advice to continue chemotherapy he was no longer eligible for expensive scans paid for by the NHS. Helen’s doctors had told her to report any symptoms, no matter how trivial. She wasn’t sure how she would recognise relevant symptoms and didn’t want to become paranoid about them. She was worried by not having regular CT scans and asked for one to gain some reassurance that all was okay. Alison thought that her doctor, whom she saw privately, had stopped regular CT scans because she found waiting for the results so incredibly stressful. When she asked her consultant about it he explained that if a scan showed that she had metastases (a secondary cancer in another part of the body) there would be little he could do to cure her, so looking for a recurrence without any symptoms might not be a good idea. However, he agreed to order a CT scan for Alison whenever she wanted one.
 

Alison was aware of the variation in follow-up and understood the arguments for and against...

Alison was aware of the variation in follow-up and understood the arguments for and against...

Age at interview: 44
Sex: Female
Age at diagnosis: 41
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So which consultant do you go back and see regularly?
 
I’m now back with my medical oncologist. And he’s reviewing me currently every three months.
 
This is the NHS?
 
Still private.
 
But I did have a bit of an issue in terms of follow-up scans. Because he took the decision not to scan me after I’d finished my [treatment]. I’d finished my treatment and then the November of last year I had a scan, and after that he decided just to see how I was feeling. And then if I wasn’t feeling good then maybe we’d do another scan. And initially I was, “Okay, that’s fine.” But I discovered that other people were being scanned on a more regular basis, and I was just wondering why I wasn’t being scanned on a regular basis. And I think it was to protect me, because the scans themselves are incredibly stressful. Well, not actually the scans themselves. It’s waiting for the results of the scans for me are terribly stressful, and my consultant’s very aware of that. And I’m a bit like a jelly when I walk into his office. 
 
Did you ask him why you weren’t having as many scans as other people?
 
Well, he seemed to think that there wasn’t an exact protocol for this and that I really was probably being scanned as much as everybody else. But I think it varies so much. Being involved with pancreatic cancer charities and meeting other people, I’ve actually found that there’s great variation up and down the country in terms of how people are followed up. And it really depends on the, the, the local consultant and how he or she wants to deal with it, and possibly how the patient wants to deal with it as well, to be fair. And to be fair to my oncologist as well, he’s always said, “Look, if you want a scan, I’ll do one, absolutely no problem.”
 
Did he ever say there’s any problem with any side effects of the scan, any, too much radiation or anything?
 
He’s not really said that. What he, I think he said was that really if they find something else, like a secondary in the liver or the lung or elsewhere, then with the unfortunate nature of pancreatic cancer there’s not an awful lot that can be done in, in terms of a curative option. So I think his thinking was that while I’m feeling well and I’m doing well, clearly if there’s something small that might be happening that might only be picked up on a scan but I’m feeling okay, then I won’t have the worry of, “Oh, it’s come back.” But that’s a double-edged sword really, because by not having the scan [laugh] I was wondering, “Is there anything there?” anyway. So I sort of needed that, that reassurance. So I sort of went into battle a little bit and just said, “Look, everyone else seems to be scanned more often than me. Why?” And so he agreed to, to scan me again. And I was scanned in July and thankfully everything was normal. But that was a very tense moment.
 
A surgeon we interviewed about this also explained that if a person has developed metastases in another part of the body there is no proven evidence that giving chemotherapy early is any better than waiting until the patient has developed symptoms. Thus regular scanning to identify disease spread and giving chemotherapy before symptoms develop may offer the patient no advantage and could actually reduce quality of life during that time.
 

A consultant explains why doing routine CT scans after treatment has finished may be a mixed...

A consultant explains why doing routine CT scans after treatment has finished may be a mixed...

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How would a patient, or how would that present, how might recurrence present? 
 
There’s, recurrence is often difficult. Recurrence can present in a number of different ways. There’s no such thing as an average patient and every patient can develop symptoms which are relatively specific to themselves. It often presents with the patient just not feeling as well as they had done three four months previously and it’s a non-specific change in their well-being that they complain of when they come back to the clinic. A number of patients, particularly those that are undergoing trials, may have a recurrence identified on interval scanning, follow-up scanning, whilst they otherwise feel very well.
 
And in these patients, it can often be quite difficult where there is evidence that the tumour has come back but the patient is otherwise very well. And a number of clinicians, consequently, are more inclined to perform scans based on patients’ symptoms rather than just routinely doing a scan, which may cause the patient a great deal of distress before, during and after waiting for a result.
 
Especially, when they are feeling otherwise very well.
 
There’s really nothing dramatic you can do if it has come back?
 
Well, if a tumour comes back, there is no proven evidence that giving chemotherapy early in those patients is any better than giving the chemotherapy when the patient develops symptoms and, consequently, knowing that there may be a recurrence two to three months earlier than any symptoms and, thereby, giving the patients chemotherapy early, may not be any advantage to the patient and they, actually, reduce their quality of life during that period.
 
So there is a balance often to be met with the expectations of the patient and what they would wish to have regarding their follow-up and also the clinician and how they are following the patient up as part of their general practice.
 
So doing routine scans can be a mixed blessing in this in this circumstance.
 
Similarly, some people whose disease had spread to other parts of the body were not having regular scans because they or their doctors preferred to monitor their disease progression by how they were feeling rather than the size and position of their tumours.
 
Michael had regular CT scans as part of his follow-up after having a Whipple’s operation followed by chemotherapy and radiotherapy. When treatment finished he had follow-up appointments every three months and CT scans every six months. In March 2010 the oncologist told Michael the upsetting news that his latest scan showed that he had a recurrence. However, the new tumour, which had appeared in the region of the pancreas, was isolated and there were no metastases elsewhere, so Michael was considered a suitable patient for CyberKnife treatment, which he had (see ‘CyberKnife stereotactic radiotherapy and its side effects’). He is due to have a CT scan shortly, which will show if the treatment has been successful. His private health insurance paid for all treatment, follow-up appointments and scans.
 

A scan showed that Michael had a recurrence. However he did not have metastases in other parts of...

A scan showed that Michael had a recurrence. However he did not have metastases in other parts of...

Age at interview: 65
Sex: Male
Age at diagnosis: 63
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I think the last time that you were interviewed you explained that you’d had the cancer two and half years ago, and you’d had surgery, chemotherapy, and radiotherapy.
 
Yes.
 
And were in remission and having check ups.
 
Yes.
 
So what’s happened since then?
 
Well basically my surgery, chemotherapy and radiotherapy finished in June 2008 and I’ve had, I’ve been in remission since that date having check ups every three months, in terms of blood tests, and then every six months in terms of a CT scan. And everything was fine and I was feeling pretty good, and we went actually skiing in March, and my sort of next six month CT scan was just when we got back. And so having arrived back I had my CT scan and then my oncologist informed me that we had a little problem after this one, and this was in the form of I think a two centimetre tumour, which had appeared. Mercifully it was isolated, and as such he recommended me for this new treatment called Cyberknife.
 
Do you go back to your original doctors or will you be having follow ups and CT’s with the Cyberknife [group of doctors]?
 
No I go back to my original doctor, and I, I’ve had one check up with the chap who pioneered the Cyberknife in the U.K, immediately following the treatment. But on August 4th I will go back to the radiotherapies consultant who actually works with this chap, but under whose sort of,
 
You were seeing originally?
 
Yes, who was my original consultant. Yes. So really I’ve seen two consultants in this, one the oncologist and secondly the radiotherapy consultant.
 
The one at the Cyberknife centre?
 
Well he’s,
 
You’ve seen two for follow up, you see two regularly.
 
Yes yes. There are two radiologists here, one is the chap who’s actually sort of pioneered Cyberknife in the U.K. who I was very fortunate to be put in touch with, and my radiotherapy consultant is working closely with him because it’s so new through my oncology centre.
 

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Last reviewed September 2018.
Last updated June 2013

 

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