Pancreatic cancer and its treatment can lead to long lasting medical problems, such as diabetes, indigestion or diarrhoea, but quite often these problems are treatable.
Many patients with pancreatic cancer develop diabetes months before their doctors diagnose the disease. Diabetes may also develop during or after treatment. People with diabetes commonly feel thirsty, pass a lot of urine, feel hungry, weak and lose weight. People’s vision may be affected too. The body may still make some insulin, but not enough. Doctors can sometimes control diabetes by changing a person’s diet alone, or by diet and tablets taken by mouth. Sometimes people need injections of insulin too. For more about diabetes see Healthtalk – Diabetes Type 2.
Some people had developed diabetes before learning that they had pancreatic cancer. For instance, Steve was very thirsty and his vision had deteriorated (see ‘Signs and symptoms of pancreatic cancer’). His doctors prescribed injections of insulin.
Steve is an office worker (retired due to ill health). He is married. Nationality/ethnic background' White British.
The only regular medication I have now is I have insulin with each meal, which helps to deal with the sugar high of your digested food as you consume that food. And I also take Creon.
And that’s because the pancreas has been affected by the growth?
Yes, because the effectiveness of the pancreas is compromised by the disease. There’s less of the pancreas to produce the chemicals in your body to deal with the blood sugar.
So I have to live with diabetes. I take insulin, inject myself before each meal, breakfast, lunch and an evening meal. And then I have at night, before I go to sleep I have another type of insulin which is long lasting, 24 hour cover, and that’s designed to keep all my sugar levels down a little bit, so that the meal time insulin just deals with any spike. So the regime, I’ve adapted to that quite easy.
Carol’s diabetes was diagnosed at the same time as her pancreatic cancer in 2008 and she started daily injections of insulin. In 2009, having had surgery for the cancer, Carol saw an endocrinologist. He told her the unexpected news that what was left of her pancreas was functioning again and that she could stop her injections.
Carol was a nurse before she retired. She is single. Ethnic background/Nationality' White British.
He [the surgeon] didn’t go into any detail at that stage of what it entailed other than he; this particular surgeon did surgery on the pancreas. I didn’t want detail at that point, what, what the surgery entails, although I knew it would have been radical.
He then went on to explain about you know I’d always be diabetic if they did surgery, or even without surgery I’d have to have insulin, my lifestyle would be sort of vastly different from what it had previously been…
Then things just seemed to be moving from there, I then was sort of seen by the diabetic nurse who was amazing. Told me everything about the diabetes, about taking bloods which I did, I take my blood sugars everyday.
So they confirmed then that you had diabetes?
Yes because of the type of the position of the tumour.
I came home. I then had to wait for an appointment with the other consultant. I came home on the Monday, oh the Wednesday. On the following Monday I had to attend the diabetic clinic where I was met with the diabetic nurse and the dietician. And I was informed at that point I’d have to go onto insulin.
So I was shown how to self medicate, I had twenty units of Lantus through one injection daily, advised on the sort of foods to eat, you know I had normal food with some tweaking, you know, some diet sheets, “You must follow this, its, it’s really being sensible.” Three days after I had seen the diabetic nurse she visited me at home to observe me doing the injections,
Which I thought was excellent.
It gave me confidence because it, it is a slightly overwhelming, again, suddenly you’ve got to inject yourself. And I thought, “Am I going to be diabetic for the rest of my life?” And all the consequences of being diabetic, it’s not just, it’s everything else obviously with diabetes long term one has to consider, it’s a bit daunting.
People with pancreatic cancer and diabetes may need to consult a dietitian because they may need a high calorie diet to regain weight lost as a result of their cancer symptoms and its treatment rather than the normal low calorie diet recommended for other diabetics.
Mr Ross Carter is a consultant surgeon in upper gastrointestinal (GI) and pancreatico-biliary surgery at Glasgow Royal Infirmary.
When, in all patients who have pancreatic disease, there are, the pancreas may not function quite as well as it did in health and each aspect of the function of the pancreas is an area where, which may require to be helped through improving its function by medicines. Patients who have had part of their pancreas removed, part of their body’s insulin producing cells have also been removed, and there is an increased risk or an increased incidence of diabetes following resection.
So a number of patients require to have a degree of diabetic control following a pancreatic resection. Contrary to many other diabetic patients, they also often have a requirement for a relatively high calorific intake because they’re trying to recover from an operation.
And so the advice, the standard diabetic advice regarding your diet may need to be altered by a specialist dietician to try and get a balance between your glucose control and your diabetes management.
And your nutritional recovery from your surgery.
Age at interview:
Age at diagnosis:
Richard was a finance director for a multi-national company. He is now retired. He is divorced and has three children. Nationality/ethnic background' White British.
Two things which I probably had better mention had happened to me on the way. In early December I discovered that I was diabetic. And the way I discovered that was that I developed terrific thirsts, really powerful thirst. And I began passing urine very frequently, particularly at night. And in the way that one does I looked it up on the web, and of course it, I was absolutely, it was absolutely clear that I was, I was diabetic.
So I went and presented myself, it had happened over a weekend. I went and presented myself to the GP, my GP on Monday morning, who immediately took my blood sugar level, which was dangerously high, and referred me to the hospital straightaway. Again, one of those things that I learnt was that before I went to the hospital I rang my specialist nurse, and said, “I have been diagnosed as diabetic. I’m coming into A&E and would you alert the registrar and so on.”
So another trip to A&E?
Another trip to A&E. And it was very fortunate that I’d done that because in fact somehow the e-mail from my GP to the Diabetic team had gone astray and they were sort of denying all knowledge of me. But fortunately the oncology registrar came…
down to A&E?
…came down to A&E, saw me, arranged for various blood tests to be done, confirmed the diagnosis, and gave me some, prescribed me some drugs. It was then arranged that I would go into the oncology clinic and have a discussion with the dietician about how I balanced off my diet, because at the time I was still, I was on chemotherapy which would mean that you would want a relatively high fat diet, whereas classically on diabetes you would be looking at low fat. And it in effect, the chemo won. So I was on a, on a sort of high fat diet, but low, low sugar.
And again that that worked very well because the dietician I’d already talked to about managing my diet as part of managing my chemotherapy, I already knew her; we were able to go through my diet step by step, meal by meal, about the changes that I needed to make. And the original idea was, from the oncology team, was that my diabetes would be managed by my GP, and that I didn’t need hospital treatment for that.
Do you also have to take any medicines for the diabetes? Or is it just diet?
Yes, I take a tablet morning and evening, which is not insulin, it’s a tablet, and obviously if it got worse, then there, it may be necessary for me to move onto insulin, but at the moment I’m managing fine and it’s quite interesting because I think that most people with type II diabetes, who are, have got it because of their lifestyle, they tend to be overweight, don’t take any exercise, and are notoriously non-compliant. Whereas I, you know I’m fighting for my life here, so I am doing everything that I should do, and I took in my diary for my first meeting with the diabetes consultant, and I’ve been taking my blood sugar and filling it in, and it was sort of nearly perfect. I mean it had the odd blip ah, but it was nearly perfect. And he looked at it, and he was just sort of almost astounded. And I, he said, “That,” well he said, “That’s just fantastic,” he said, “that’s absolutely great. You’re obviously managing your diabetes perfectly. There’s nothing to worry about.”
After its initial diagnosis and treatment people’s diabetes was usually managed in primary care but Richard’s (Interview 22) GP was reluctant to do this because his cancer meant that his needs differed from those of other diabetic patients.
Eating and digestion
People with pancreatic cancer cannot digest fats normally. The pancreas makes enzymes which help people to digest their food. Many people with pancreatic cancer have bowel problems because insufficient digestive juice reaches the duodenum due to a blocked pancreatic duct or as a result of surgery. These people usually take medicines, such as antacids and Creon capsules, which contain a mixture of digestive enzymes extracted from the pancreas of pigs, to aid their digestion. No-one we interviewed reported any side effects of Creon.
Mr Ross Carter is a consultant surgeon in upper gastrointestinal (GI) and pancreatico-biliary surgery at Glasgow Royal Infirmary.
Now, just as those patients have had a reduction in their insulin production, they’ve also often had a reduction in their digestive juice output of the pancreas, be that either from a resection or even just from, in those patients who haven’t had a resection, due to a blockage of the pancreatic duct. And in these patients they tend not to digest their fat nearly as well as they should.
Adding in a pancreatic enzyme supplement of lipase, the commonest one within the UK being Creon, but there are others such as Pancrex, can help the symptoms of fat mal-absorption, which tend to be a feeling of bloatedness, often with a loose, rather than true diarrhoea type stool, and the key feature of it is that it’s quite difficult to flush away.
And if you’re needing to flush your toilet a couple of times then the likelihood is you may well have some, what we would call, steatorrhoea, and you should be on pancreatic exocrine supplementation as this can often help, greatly, your symptoms.
Age at interview:
Age at diagnosis:
Helen is married and has 2 children. She is a clerical officer. Ethnic background/Nationality' White British.
You mentioned earlier that you were taking a drug called Creon to help you with your digestion. When did you have to start taking that?
I really only started taking it properly about six months ago. I hadn’t needed it post op, which I think was quite unusual, as most people do take Creon almost immediately. But I found that I wasn’t really having digestive problems. I was having a few problems with my, with wind basically and, and I started getting bouts of diarrhoea, which when I asked the registrar about at one, at one of my appointments, he said it was because I wasn’t taking enough Creon. And at that time I was only really taking it when I felt that I needed it. So he recommended that I start taking it with everything that I eat, and take more of it as well. You can take as many as you need basically of Creon. And they’re capsules, and they just help the food, they help your system to digest food so that it’s disposed of normally, basically. And it, and it does help a great deal. But I, I am finding now that I’m having to take more and more. If I don’t take them then I’d go back to having diarrhoea again.
Do they come in so many milligram tablets?
They do come in different doses. My dose, they’re 40,000 units, but they do 10,000 units as well I believe. I think it’s used in different conditions as well. So I suppose, pancreatic seems to be the 40,000 dose.
So you take that, one of those every time you have a meal?
More than one actually. I can take as many as I need, as many as I think I need. It depends on what you’re eating. If you’re eating a particularly fatty meal or spicy, or, you know, with onions in or something, then I do tend to take about three or four with that meal.
Age at interview:
Age at diagnosis:
Richard is single. He is a teacher (now retired). Ethnic background/Nationality' White British.
Apart from the chemotherapy and painkillers, do you have to take any other long-term medicines as a result of the pancreatic problem?
No, no. Oh, well, except the Creons. And the Creons I’ve been taking I think possibly even before the operation. The pancreas produces enzymes which help digest fat. So if your pancreas is not working too well, one of the effects can be that you’re not producing these enzymes. So the fat doesn’t get digested, and that, that fat comes out in your stools. And that’s one of the reasons that you can get floating stools as a symptom of pancreatic cancer. If you take, the trade name of the ones I take are called Creon, and they’re, they’re pigs’ enzymes. And you take those with meals and it helps to digest the fat. And I think of, of the, of one single item that, that’s helped, it’s been those. Because obviously I was, if you like, on a fat-free diet before I was being treated. And now, now I’m getting, the fat that I’m eating is being digested and getting into my system and making me look a lot better.
And do the stools look normal now?
To be honest, I’ve forgotten. This has gone on for so long. Yes, I’ve half forgotten, sorry, I’ve forgotten what normal stools look like. But, yes, they look better than they were, yes, much better.
Lesley is a vegetarian so at first she was not happy about taking Creon. She asked the Vegetarian Society and was reassured that she had no choice about taking Creon and was still a vegetarian. If she stopped taking it she lost weight rapidly.
Bob had not been prescribed Creon but learnt about it on the internet when he was concerned about feeling nauseous on eating. He asked his specialist for it. Steve said that if he ate a fatty meal without Creon he felt bloated and uncomfortable. People usually worked out how much Creon they should take according to what they were eating. People sometimes had diarrhoea if they didn’t calculate the optimal dose. Some had had to increase the dose of Creon over time to counter their symptoms.
Vicky is a bookkeeper (now retired). She is married. Ethnic background/ Nationality' White British.
I’m on obviously quite, I’m still on medication, which I will be on for life, for the pancreas, and my digestion is pretty good, but again if you get your pills, I think it’s a matter of getting the pills, taking the right amount of pills, you can suddenly have a day when you have really bad diarrhoea for half a day, and you feel completely washed out. So, you know you just have to write off a day. So, but apart from that…
What pills are you taking?
I’m on Creon, which is, that’s for the digestion, because having had a large part of the pancreas removed I can’t, as far as I understand I can’t digest fat. The pancreas digests the fat for you. So the pancreas is not producing the enzymes to digest fats, so before each meal, before I eat anything I sort of mentally think, “Right how much fat am I going to eat?” And I have various different measures of Creon, and I either take a small one or two small ones, or a big one, or something. And its, it’s a very, it’s slightly ad-hoc so I think sometimes you don’t take enough, sometimes you take too much, and that reacts, you know, and can cause you diarrhoea really.
So you take it before the meal?
I take it before, yes.
Most people said that taking Creon helped their digestion, but it had not worked for Simon’s wife, not even when she followed advice to open the capsules and sprinkle the contents on her food.
Some people said that taking Creon enabled them to eat anything they wanted to, even in large quantities, whereas others still could not tolerate some foods. Ann said it was difficult learning what she could and couldn’t eat and that she no longer enjoyed cooking as it gave her nausea. A few people mentioned that they found it difficult to digest meat and so chose fish and eggs instead. Phil managed small meals without any Creon. He could still eat all the foods he used to eat but in smaller quantities.
Some people, such as Adrian, found it hard to eat enough to maintain body weight. Their doctors suggested eating small portions at frequent intervals. Their dietitians often recommended special drinks to boost their protein and calorie intake, but Lilian said she disliked them because they were so sweet; Hamish said they had given him diarrhoea. Adrian said that, like food, they made him feel too full. Lilian also said it was difficult to gain weight because she didn’t like some of the high calorie foods that she was recommended to eat, such as milk puddings, pastry and cakes. Fred had to eat his last meal before 7 pm to prevent indigestion and discomfort during the night. Hamish found it hard to eat enough because of bloating; he said his taste buds were not working and his food tasted like cardboard. Some people, such as May, still had bowel problems and lost weight in spite of taking Creon. May also took omeprazole to reduce gastric acid, and metoclopramide, which her doctor prescribed for nausea or vomiting.
May was a school secretary before she retired. She is a widow and has two adult children. Ethnic background/Nationality' White Scottish.
How long after the operation was it before you could start eating a little bit?
Now…. where my food’s concerned, I always had a wee bit every day.
Didn’t matter if I felt like eating or not I always had something. Something that was easy to digest.
And now can you eat most things?
I can eat most things, but there again I’ve got to be careful what I’m eating because my toiletries are not that great.
And I’m up during the night quite a lot. So I’ve got…
Do you have, do you have to get, get up and go to the toilet …
.. and your bowels open quite a lot?
Aha, aha, aha.
How many times a night?
I’d say about two or three times a night. But they’re trying to overcome that with, they increased my tablets.
Which tablets are those?
They increased them and they can’t give me any more now, they were doing some tests on that to see if they could help me in that way and they have helped a bit, I’m up maybe once, twice a night now which does help.
Is that like with diarrhoea?
No, that’s …
... disturbs your sleep doesn’t it?
Yes, it does, aha.
Do you have to take any other tablets apart from the Creon as a long term result of having the operation?
Oh, I take quite a few tablets. I take about 15. The, the Creon...
Do you have, did you develop diabetes as a result of …
No, I haven’t, I haven’t developed anything at all ..
Oh that’s good.
… whatsoever. I’m just, if I could put some weight on, that’s the only thing. I mean, just put some weight on.
Some people took many medicines. Peter (Interview 43), for example, took Creon and domperidone, which helps to move food faster through the gut, and helps to prevent nausea, bloatedness and regurgitation. He also took cyclizine, an antihistamine used to treat sickness or dizziness. At times he also took loperamide (Imodium), which is used to treat diarrhoea. This drug slows the forward movement of intestinal contents by the intestinal muscles. He also took thiamine (vitamin B1), and painkillers. Fred took about 13 tablets each day, including Creon, and iron tablets.