Pancreatic Cancer
Surgery to remove pancreatic cancer
We talked to people who had surgery for pancreatic cancer. Their experiences are described here.
A consultant describes what types of surgery may be appropriate for patients with early-stage or...
A consultant describes what types of surgery may be appropriate for patients with early-stage or...
So in every patient, what we need to do is to assess the stage of disease, and that’s usually done by a CT scan, and secondly, we have a number of tests where we look at the function of the heart and the lungs to try and get a gauge as to how fit the patient is and, therefore, how much of a stress an operation is going to put on their ability to recover from the operation.
It’s a big operation isn’t it?
Yes.
Can you summarise the different types of surgery that might be appropriate?
There is; the common types of surgery are either an attempt to remove the tumour itself and this is what we would call a pancreaticoduodenectomy or a Whipple resection, which is removing the head of the gland of the pancreas. Sometimes with a tumour in the tail of the pancreas we would perform removal of the tail of the pancreas, which is called a distal pancreatectomy. And, thirdly, occasionally, when we find at operation that the tumour is actually more advanced than was indicated on the pre-operative staging, in those patients we would perform a bypass operation, which is to allow the liver to drain into the intestine and the stomach to drain into the intestine without having problems with blockages of either the bile duct or the duodenum.
In that case, you’d leave the pancreas then?
Yes,
Some people we talked to had surgery to remove the cancer from their pancreas. If this kind of surgery works it can cure the cancer. Most people felt lucky that surgery was possible and that surgery was the only option. However, a few people weren't sure it was right and took a little while to decide. Some had felt worried before the operation.
When the surgeon told Ann that she could have Whipples operation she thought there was no other...
When the surgeon told Ann that she could have Whipples operation she thought there was no other...
Did you at any point, then, consider that there wasn’t, because you were very well, and had just had this terrific walking holiday, did you ever think, “Why do I let myself in for this operation?”
Not at that stage. I just didn’t think there was an option. I knew that most pancreatic cancers present very late with painless jaundice and they can’t operate. I mean the, in fact the gastroenterologist said, “You know, you’re one of the lucky 10 or 20 per cent because ...” I don’t know that I felt lucky but…. “Because it’s operable and it looks to be very small.” At that stage they were thinking it was about 0.8 centimetres. In fact it turned out to be 2 centimetres. But, and I mean they were saying, you know, “It’s operable. It could be curable.” Although I didn’t quite believe that, and I’m not sure I do yet. And, you know, it’s got such a, and there was, there seemed to be no other option really.
And I didn’t want a second opinion, and I didn’t want to know more about the operation than I already knew. I really, I didn’t want to know more. I just wanted someone to look after me and make the decisions at that stage, and tell me what to do. I suppose I knew enough to know that it was not going to be nice, and I didn’t want to know more than that really.
Hugh thinks that his mother was reluctant to have the operation but that she was glad that she...
Hugh thinks that his mother was reluctant to have the operation but that she was glad that she...
And how were the treatment decisions made? Did your Mum make those on her own, or with you or with other members of the family?
No she actually made it with my father and with me and my brother.
And I think she quite often was probably the most reluctant to have, well she was certainly the most reluctant to have the operation. I think she was sceptical of its success - thought it would be very intrusive and invasive and felt that if it didn’t have a high chance of saving her life then she’d rather just have some quality of life in the last few months. But I think we all said, “No, give it a whirl”.
And I think she was grateful because it basically gave her an extra year.
The Whipple's procedure
The Whipple’s operation is for cancer in the head or neck of the pancreas, that hasn't spread. During this operation surgeons usually remove:
- part of the stomach
- part of the duodenum (the first part of the small intestine)
- the head of the pancreas
- the common bile duct
- the gall bladder
Some people we spoke to had a pylorus-preserving pancreatoduodenectomy, in which all these organs were removed except for the stomach.
Vicky had a rare type of pancreatic cancer called a a neuroendocrine tumour. Before her Whipple’s operation the doctor did an embolisation procedure. Embolisation blocks an artery (blood vessel that carries blood to an organ) to stop blood flow. Vicky’s doctors blocked an artery going to her tumour and reduced the blood supply to the tumour. The aim was to shrink the tumour and to lower the chance of a bleed during the Whipple’s operation.
Vicky had an embolisation procedure two weeks before her Whipple's operation. She described what...
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Vicky had an embolisation procedure two weeks before her Whipple's operation. She described what...
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Then I was re-admitted on the 25th September. And that’s when they did the embolisation, and the embolisation cuts off, it’s done in the radiology department, it cuts off blood supply. So what they were trying to do with all these different sort of procedures was to try and reduce the amount of blood supply that had created round, round the lump so that when they came to take it out you know there was the, you know there was least chance of sort of haemorrhaging and things.
Can you say a little bit more about embolisation? What happened exactly?
Yes, embolisation. You’re under a, it’s not a general anaesthetic it’s a sort of local anaesthetic, only it’s in, done in the radiology department. And as far as I know they insert this, insert a very fine wire somewhere into your groin, well this when they, it’s the first time they attempted it in the groin. And that goes up, and they, they sort of zap, they zap, can zap things. And it cuts the, sort of cuts the blood supply off. That’s, that’s what I understand it to be.
And how did you feel while that was going on?
You’re slightly aware, and it was quite painful, quite painful afterwards.
Where was the pain? In the, was it around the pancreas or where they inserted the line?
No it wasn’t round the pancreas, it was sort of slightly round the line, and then
In the groin?
In the groin. And, I’m so sorry I’m having trouble sort of remembering it. But, there is a sort of quite important, sort of relevant thing. I remember being home one time after having been discharged and I had this awful pain in my shoulder. And apparently I luckily had a neighbour who was a radiologist and she, “I wouldn’t in the least be surprised by that. If you’ve been embolised, if they’ve been embolising around the pancreas liver area.” Which was…
That was useful to know?
That was useful to know yes.
People said that their Whipple’s operation took up to nine hours. The operation is done under general anesthetic. Most people told us that they had an epidural injection as well, to help control the pain. They also had various tubes put in (such as a catheter, drains, feeding tubes or I.V.s).
The recovery from Whipples operation was one of the worst experiences of Anns life. The nausea...
The recovery from Whipples operation was one of the worst experiences of Anns life. The nausea...
And then of course I got to the ward and was given a bed in this four-bedder by the window, and had to sign consent forms. Which always brings one up with a bit, quite a bit of a start when they start telling you the actual figures, that I didn’t really want to know, how likely I was to die from the anaesthetic or from the operation. And off I went. And five hours later, because apparently the operation took five hours, five or six hours, and I woke up with a terrible nasogastric tube, feeling like hell really, although quite relieved to be alive. And my family were all there and, I mean they were obviously very relieved to see me alive too [laugh].
But the next two weeks were just terrible. And I was in hospital for three and a half weeks, not the fourteen days which I thought I would be, at the, when I first went in. And I really hadn’t entertained the fact that I’d be so ill. And I, there were many times during those two, first two weeks particularly that (a) I wanted to die. I didn’t feel depressed about it, but just felt so ill I didn’t want to be there. I was retching and nauseated and I, certainly not everybody was in the ward because, but there was quite a lot of that going on and people feeling not at all well. And I couldn’t take any, many of the drugs to stop me vomiting and retching and feeling nauseated because I got side effects from them. I mainly had sort of Parkinsonian side effects, where I was shaking and just not… feeling terrible; agitated. And so it was very difficult for me not to feel nauseated. And I didn’t eat anything or drink anything really for, for two weeks. I had a drip in. And it’s a very funny sensation to feel you want to die even though you’re not depressed, and something I’ve never experienced before. And, you know, you’d go to sleep for a little bit, because I hardly slept, and think, “Well, at least tomorrow I’ll feel a little bit better when I wake up.” And then you’d wake up and not feel any better. And it’s very difficult to describe, and I can’t almost remember where those days went to. I’m sure it’s just as well. It’s rather like having a baby, when you, there’s a lot of pain, you actually somehow forget about it. You know, you say, at the time you hear people saying, and I’m sure I said it, “I’m never going to do this again.” And then, you know, two or three years later you’ll have another baby, and as the pain starts you remember how awful it was the last time. [laugh] And I quite frequently felt, “Gosh, I just wish I hadn’t done this operation. I wished I’d...” That’s when I really felt I’d rather just have seen what happened. And that wasn’t my rational self speaking, but it was just how I felt really.
Recovery from the Whipple's Procedure
After the operation, people went into the intensive care unit for a few days. They were very drowsy and didn't know what was happening around them. People talked about the relief they felt to have survived such major surgery. Some said they felt very ‘safe’ in the intensive care unit because the staff were reliable. Lesley had her own nurse and called the nursing care ‘fantastic’.
Most people said that pain was well controlled by the epidural or by a morphine pump. However, some had bad side effects from morphine or tramadol (such as nausea or dizzy spells). They described their time in intensive care as ‘very painful’.
At first people could sip only a little water. After a while they started to eat small amounts of food.
Helen described her time in the intensive care unit after a Whipples operation. She had a...
Helen described her time in the intensive care unit after a Whipples operation. She had a...
As I say, it was a long operation. Ten hours. Once they’ve done the operation, I was taken to High Dependency for 24 hours, well, Intensive Care really. And when, you, you have a lot of tubes and drips and drains attached to you. I had tubes in my neck which they could draw blood off for tests, regularly. I had drips in both hands. I had a catheter in, two drains in my abdomen to get rid of all the excess fluid following the operation, and a big, big dressing on my abdomen.
I mean it, you, it feels like you’ve been hit by a train basically. I found it very, very difficult to move. I couldn’t even pull myself up in bed. You feel very, very drained basically. You, you know, it’s very difficult to, to be alert and know what’s going on around you, you just kind of sleep through it for the first 48 hours. It wasn’t, I didn’t find it particularly painful. They did have me on a morphine pump, which I could press whenever I needed it. But I didn’t use it very often. And I did actually get told off once or twice, because I was told, you know, “You must use it, you must use it. You need it.” And I said, “But I, I haven’t got pain.” So I wasn’t worried about that. It was more the moving that, I didn’t like it. They got me out of bed the next day and that was very, very hard. Standing up was, was very difficult and I couldn’t stay upright for long.
Did you have an epidural as well to control pain?
I didn’t actually. I should have had, but a tablet had been given to me too late the night before. So the anaesthetist decided just to put me on the morphine pump instead. He had me agree to it first, you know, made sure I was okay with it, which I was. Which actually I was quite relieved about because I didn’t like the idea of an epidural in my back. So when he said a morphine pump I was like, “Yes, that’s fine. I’m okay with that.”
David found the intensive care unit very noisy. He found it hard to sleep and had nightmares. The...
David found the intensive care unit very noisy. He found it hard to sleep and had nightmares. The...
Again it was difficult in the intensive care unit, because I was conscious throughout, and strange places, intensive care units. Especially being awake because it’s very, very noisy, so noisy, there were six bays there and you’ve got a nurse, one to one on you. And you’ve got the consultant who’s in, and the anaesthetist.
And you’ve got the tube into your neck, but, more noisy at night when you go to sleep, the noise seems to get tenfold more noisy. But it isn’t, it’s just I think your ears become more attuned to the noise, so I couldn’t, I just couldn’t sleep very well. And when I did sleep I had terrible nightmares.
Did you?
Yes and I think again, it’s probably, that was probably the effect of the anaesthetic. Again I did see the surgeon the day afterwards. The surgery it had gone well, although it was described that I’d had a small bleed, they’d nicked the aorta, which on reflection and looking back now, obviously there’d been a point in surgery where it had been manic, and I think I’d had I don’t know how many units of blood, but it had taken some while to bring that back under control. So again I think the pancreas is wrapped around the aorta.
Yes, intensive care was hard, it really was hard again. The physio team were, I guess were very good. And again I think more modern nursing that, on the first day after surgery I was out of bed, and they got me up on my feet and I wouldn’t say got me walking. I couldn’t walk. It, it was just, I felt like 150 years old, and that walking one step was like walking the first step on the moon. It was just unbelievable; I just, as if somebody had sucked every piece of energy out of you.
And then, what I thought I’d do then is to give Cathy a treat, make her see I was well, I said to them, “Don’t put me back in bed yet, put me in the chair beside the bed. And then when Cathy comes to see me she’ll see me out of bed and it will give her a boost.”
What I didn’t realise was she was going to be three hours late. And I stayed in the chair. When she arrived I’d slid down the chair, and I was literally knocked out. But I stayed there until she arrived and then I got back in bed and I think I did go to sleep.
It’s just kinds of things you do.
How long were you in intensive care?
I think five days, I think I was in there a little bit longer because I think I did the, through the surgery date. I think I had the surgery on either the Wednesday or the Thursday. And then they don’t tend to do many operations on a, on a week, well they don’t do operations on a weekend, unless it’s an emergency. So once I was in there the weekend went by, whereas otherwise, I would have come out earlier if it had been five working days so to speak.
After a few days in intensive care people moved back to the main ward. Some felt nervous about that because the nurses were very busy. They were worried that they wouldn't get the attention they needed. However, one man said he had a ‘sense of achievement’ because he trusted the staff and everything was going well.
Once back on the ward, if recovery went according to plan, a nurse or doctor removed the drains and catheter and gradually stopped intravenous fluids. As people became stronger they were encouraged to get out of bed and to shower. Physiotherapists helped with mobility and strengthening exercises. Eating was often difficult at first, but people gradually learned what they could and couldn’t eat.
May described what it was like on the ward after the Whipples operation. The nurses were very...
May described what it was like on the ward after the Whipples operation. The nurses were very...
What was it like on the ward?
Very quiet. The ward that I was in it was very, very quiet and I think everyone was just much the same boat as myself, just getting over the operations. And there was one lady in particular she wasn’t well at all. And on the, the, on the whole it was quite good, we were all more or less read our magazines and books.
It was quite a quiet ward.
And how long was it before you could start walking around, get to the bathroom on your own?
I would say nearly a week. I was, I was actually on the Zimmer and I had tubes coming from various places and you can be very careful when you’re going to the toilet. But that was within a week I was going to toilet myself.
I’m quite a, an independent person. And I like to do things for myself.
And the nurses were always busy.
Really.
Really, oh yes, always busy. And they didn’t have much time to their self, I felt vexed for them sometimes.
What was the nursing care like?
It was very good.
Oh they were very nice. The nurses were all very good.
And what about communication with the doctors at that stage?
Well most of the doctors came round every morning and your own doctor, they maybe come round with them and spoke to you and checked your wound and said you’re doing fine. And the nurses dressed them every day, dressed the wounds every day and the, the doctors came, as I say, the doctors came round every day and examined you and said, “You’re doing fine and you’ll be up on your feet and doing your running around the wards shortly”. Well, I used to be a runner anyway so I, that put me at ease.
The physiotherapists helped Fred to get out of bed and to walk using a frame. They encouraged him...
The physiotherapists helped Fred to get out of bed and to walk using a frame. They encouraged him...
And did you have physiotherapy in hospital?
Yes, well, the, the physiotherapist came to see me and they tried to get me up out of bed. Apparently I had fluid in my lungs because I was lying so long. And they got, they got me up and standing up. I couldn’t have stood up myself. And then after a couple of days they brought one of the little frames that, to, to support me. But after a day, I didn’t need that. I went for a walk along the ward, just back maybe 20 feet or so. I did that for a couple of days and then I got better and better and I went out to the corridors. And the physiotherapist came a couple of times, and then they said that I was progressing but I, before I got home I would have to go up and down the stair. Which they, they supported me and then I was able to do it myself after that. So these were little things that, that helped in the recuperation period.
So how long were you in hospital altogether?
I believe it was, the, both hospitals?
After the operation?
After the operation was roughly three weeks. Roughly three weeks I was out.
Some people had problems after the operation, including nausea, vomiting, infections and hernias. Vicky had a paralytic ileus (inactivity of the bowel), and so had to go home with her JPEG feeding tube in place. One woman had unexplained bleeding from the bottom.
Most people we interviewed went home after two to four weeks (it can be as short a stay as a week). Some were in hospital for longer than four weeks. Before people went home, the nurses usually took out the stitches or staples that held the incision together. Lesley had 67 staples.
Vicky had to go home with a JPEG tube still in place because her bowel was not working properly....
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Vicky had to go home with a JPEG tube still in place because her bowel was not working properly....
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I was having quite a lot of problem after the operation, and they were having to, I, obviously my digestive system wasn’t working. My bladder started working quite well, that started working okay quite soon, and yes the catheter came out and I had no problem on the bladder side. But... so bowel movements. That was a real problem with me, well I’ve always actually had bowel problems.
So how many days was it before you could start sipping water for example?
You were allowed to sip a little bit of water, but you were limited, because of course if, if the stomach’s not working properly they don’t want to sort of fill you up. But then you’ve got to have a certain amount.
How long did it take for you?
So three and a half, my operation was on November 13th and it was sort of coming up to you know mid-December and I was still [in hospital].
Goodness
I was still, well they weren’t getting anywhere.
So you weren’t eating anything all this time?
So I wasn’t eating anything. I was being fed intravenously.
And I think after about four weeks, my consultant, I think, began to get slightly worried that, that something hadn’t, you know, was wrong and scanned me, but there was absolutely nothing on the scan to show. And apparently I think they’d quoted two or three percent of people have problems. And I was obviously one of them, and they call it, delayed gastro, delayed, oh, not again, delayed gastro something. And it can happen to about 2 percent of people who have, who have the Whipple operation.
And so they said, they’d try; they got me to chew chewing gum which sometimes can help. Exercise, so I used to walk, you know, walk round, round and round the corridors endlessly, sipping water, and then the doctor, the doctors you know, they just had to come along and say, “Be patient,” and I, you know it was incredibly frustrating and of course I was getting completely desperate because you know I wanted to get out of hospital, and you know I was wondering was it ever going to, you know was it actually ever going to get right.
And we were creeping up to Christmas. And my consultant said, “Well look,” you know I was mobile by then, and by then my bowels had started working, but I was,, and he said, “Right, I’m just going to send you home with all the kit.” And my husband became an expert on intravenous pumps.
All that, were, you still couldn’t eat, even though your bowel had started?
I still couldn’t eat, I couldn’t, couldn’t still, no because you see I, this sort of, the food you’re given is a sort of thick porridge like stuff, so you weren’t having many bowel movements, but I mean they, they did work, you know occasionally. And I was sent home.
Were you eating by mouth then?
They occasionally, I had a little bit of soup or a little bit of jelly, but nothing, no. You’ve reminded me. I would have the pump, the food pump on, I can’t remember the actual timing, for part of the 24 hours, and then it would be switched off, and then I would try and eat sort of small soft things.
People were happy to be home but still felt very weak and tired, and needed painkillers. Some people had wound infections which needed regular dressing by the district nurse. May developed a wound infection and went back to hospital for a few days. Some people’s GP also visited or phoned.
One man decided to sleep downstairs for the first two months because he found it hard to climb the stairs. Ann had lost two stone in weight and needed to rest several times a day. She also had headaches which worried her. Fred had a lot of pain along the line of his incision.
Others recovered more quickly and became mobile, walking a little further each day. Tony, for example, recuperated at home for two or three weeks and then felt well enough to do a little gardening and painting.
Audrey described her time at home after the Whipples operation. The district nurse and the GP...
Audrey described her time at home after the Whipples operation. The district nurse and the GP...
What was it like coming home?
Oh it was lovely to come home, be in your own bed, but I’m a very active person really, I couldn’t believe how weak I was I’d lay on that settee for about 2 weeks. I always got dressed and I never stayed in my pyjamas but I found a shower, still now when I have a shower it comes over me, I think, “Oh I could hardly…”, it just used to wear me out just to have a shower, you don’t, you can’t imagine it can, you don’t know what it’s like. And my neighbour persuaded me after about a fortnight to just walk down the drive, it was a nice sunny day, it would be March I suppose and she just said just come, I think thought I was going to be stuck there forever, you know, I’d got no incentive at all to do anything. My first real trip out was to a, which I thought was rather apt really, was to, there was a mothers day service at my grand-daughter’s school so that was nice and then on the Sunday we went to a mothers day lunch and I managed that alright so. That was my first, first trips out.
Did the district nurse or any nurse call at all?
Yes, I had a lot of attention from the doctor and nurses came to take blood pressure and do dressings and keep an eye on this PEG thing that I’d got in my, they kept that in for quite a while and then when I went to see the surgeon afterwards he took it out.
Weeks after surgery many people still felt exhausted at times but gradually felt strong enough to resume normal activities, enjoy life and go on holiday. A few went back to work. Others had to retire, partly because they needed further treatment, such as chemotherapy. Recovery can take several months and for some people up to a year.
Distal pancreatectomy
Some people we spoke to had cancer in the tail or in the body of the pancreas rather than its head. They had an operation called a distal pancreatectomy. Two people had their spleen removed too and needed to take antibiotics long term due to the resulting loss of immunity. Peter (Interview 36), who had a neuroendocrine tumour, also had part of his tumour removed from the portal vein.
After surgery these people also went to the intensive care unit before returning to the ward. Like those who had had a Whipple’s operation, they had intravenous fluids, drains and a catheter, and a large incision.
After one or two weeks in hospital they went home. Some people recovered fairly quickly but others took many weeks. Davinder, for example, was very weak and tired when she got home and needed help with personal care for three weeks. She also needed special equipment to help her get in and out of bed. She had to go back to hospital twice because of urinary and abdominal (tummy) infections.
Alison had a distal pancreatectomy and splenectomy. She was out of hospital after ten days and...
Alison had a distal pancreatectomy and splenectomy. She was out of hospital after ten days and...
Yes, the surgery was quite lengthy. It was, it was about five hours. I had, my tumour was sited in the body of my pancreas, so I had 80% per cent of my pancreas removed along with the spleen in, in the one operation. And that’s called a distal pancreatectomy and splenectomy. And that operation went very well. The consultant surgeon got out all the tumour that he could see, and the histology came back that it was an adenocarcinoma in the body of the pancreas and one lymph node, node was affected. So I recovered pretty well actually from the surgery. I think probably because of my age and also I was relatively fit before I went in with all of this. So I was up and about pretty quickly and I was out of hospital within ten days.
Did you have an epidural?
Yes, yes. But I wasn’t in any pain. And they weaned me off the painkillers actually pretty quickly. And remarkably at the end of it I was sent home with paracetamol. So even though I had a wound which pulled and, you know, the discomfort that that caused, the, the, the actual searing pain that I had before was gone. I was like a new woman. So that, that was, that was brilliant.
Davinder described her return home after her distal pancreatectomy. The district nurse helped her...
Davinder described her return home after her distal pancreatectomy. The district nurse helped her...
What was it like at home recovering?
It was horrible, horrible coming home. And like the hospital bed was very comfortable and it has controls in it. And I was using, I was thinking, “I’m doing all the effort” but the bed was doing it for me, which I wasn’t aware of. And I came home and the first thing I faced, I could not get up by myself and I needed help.
Did you manage to get some equipment?
So my daughter, it was like, it was, I don’t know what day it was, but she saw me. She sat down in, in her room in here and phoned the, the…
The GP?
Not the GP. The home help and things. And through that home help like she could find out how I can, how to obtain the equipment. And my sister, she was pretty, she, they both, both of them were there, and she ordered, she asked her son to get me bed backrest from Argos. They do a pretty strong one and it’s very helpful as well. It has got five adjustments. You can sit propping up as well or you can adjust it to your needs. So the second day they got me that. That helped me a bit. Still it didn’t help me, help me enough and, because I could not hold on to anything that I can support myself. So they were helping me to get up, even from that height as well.
And did the district nurse come and see you?
She came, the next day she came to see me. And then she says, suggested that like, “You’re unable to get up yourself because bed is very low in, at home.” And in the hospital, bed is pretty, you can adjust it to your needs. So she says, “I can help you with the things, like you need more equipment rather than you think you, you didn’t need it.” So the first thing she did, she got me a grab rail that can be put next to me, one side, whichever is convenient to me. So I needed it on my right side of the bed, next to my, where I could hold, hold to it easily, hold on to it easily. And it was delivered on the same day in the afternoon and put, there, there was straps that was holding it under the mattress. And it was very secure, that the base of it went under my mattress and the straps held it. And it was quite high.
And was that free, from the National Health Service?
It was from the National Health Service and it was free. And it helps me enormously. I have had it for six weeks I think. Then I didn’t need to lean on anybody, or I didn’t need anybody’s support to get me up. I could get up myself. So they were just feeding me and taking me to the, keeping an eye, keeping an eye on me to go to the toilet and bath.
Some people could not have surgery to remove the cancer. Instead they had surgery to stop symptoms like jaundice or sickness.
Last reviewed November 2020.
Last updated November 2020.
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