Surgery for Pancreatic cancer

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1 Surgery for Pancreatic cancer Patient Information Booklet Delivering the best in care UHB is a no smoking Trust To see all of our current patient information leaflets please visit

2 Introduction This booklet contains information and diagrams about the different types of surgery performed for pancreatic cancer. There are also facts and figures about the success and possible complications of pancreatic surgery. Please remember this booklet is not a substitute for asking questions of your doctor and specialist healthcare team. You are always welcome to ask questions and we would encourage you to do so. Surgical options You have been advised that an operation to remove the cancer from your pancreas may be possible. There are several different operations used to treat pancreatic cancer. We know that removing the cancer by an operation is the only way in which this cancer can be cured. The cure rate for patients, who have had their pancreatic cancer resected successfully is one in five. This means that out of five patients who have their cancer removed, one patient will be cured and this cancer will not come back. The remaining four patients will have the cancer return within about two years. Removing the tumour completely To find out whether this is possible for you, your surgeon will look at: The size of the tumour Where it is in the pancreas Whether the cancer has grown into the tissues around the pancreas Whether the cancer has grown into the major blood vessels in or around the pancreas Whether the cancer has spread to any other parts of the body 2 PI_0175_04 Surgery for pancreatic cancer

3 Your surgeon can find the answers to some of these questions from your pre-operative tests. The specialist team here will have looked at the CT scan you had in your referring hospital. Your scans may show the size and position of the tumour which helps the team plan your surgery. Scans may also show up cancer spread to other parts of the body. But it may be necessary for your surgeon to try the operation without knowing exactly whether the cancer has spread to lymph nodes or invaded blood vessels. If it is possible to remove your cancer you may be offered one of the following: Whipple s operation Total pancreatectomy Distal pancreatectomy These are highly specialised operations. The best surgical results come from specialist centres. Surgeons that work in specialist centres do more of these operations and so are better at doing them. Government guidelines say that there should be one specialist centre for treating the pancreas for every 2-4 million people. This is why you may have travelled a long way to come to the Queen Elizabeth Hospital Birmingham. The following diagrams illustrate the different types of surgery. The first diagram shows your insides before the operation. The second diagram shows how you will look inside after the operation when the cancer has been removed. PI_0175_04 Surgery for pancreatic cancer 3

4 Whipple s operation This is called a Whipple s operation after the surgeon who made the procedure popular. This is major surgery. A Whipple s operation involves removing part of your pancreas, your duodenum (the first part of your small bowel) part of your stomach, your gall bladder and part of your bile duct. Before Liver Stomach Pancreas Gallbladder Duodenum Afterwards Liver Remaining part of stomach Small intestine (bowel) Tail of Pancreas As you will have part of your pancreas left behind; you should not need to take insulin. At first, your doctor will monitor your digestion and blood sugar to make sure you can manage on your own. Getting over this type of surgery is hard work. It will take time to get back to eating normally. 4 PI_0175_04 Surgery for pancreatic cancer

5 Pylorus preserving Whipple s or pancreatoduodenectomy This is like a Whipple s operation but none of the stomach is removed. Before Liver Stomach Pancreas Afterwards Gallbladder Duodenum Liver Stomach Small intestine (bowel) Tail of pancreas This operation is the most commonly used on the pancreas to remove pancreatic cancer. As you will have part of your pancreas left behind; you should not need to take insulin. At first, your doctor will monitor your digestion and blood sugar to make sure you can manage on your own. Getting over this type of surgery is hard work. It will take time to get back to eating normally. PI_0175_04 Surgery for pancreatic cancer 5

6 Total pancreatectomy This is very major surgery. It involves taking out the whole of the pancreas, your duodenum, part of your stomach, the gall bladder and part of your bile duct, the spleen and many of the surrounding lymph nodes. Before Liver Spleen Gallbladder Duodenum Stomach Pancreas Small (bowel) intestine Afterwards Liver Stomach Small (bowel) intestine Losing your pancreas will affect your digestive system. You will also be diabetic. Losing your spleen increases your risk of infection and can affect your blood clotting. After the surgery you will have to: Take enzymes to help digest food Have regular blood sugar checks and insulin injections Have vaccinations and possibly take antibiotics for the rest of your life to prevent infections (if your spleen has been removed) 6 PI_0175_04 Surgery for pancreatic cancer

7 Distal pancreatectomy This means taking out the other part of the pancreas (body and tail) and leaving the head. Distal pancreatectomy is performed to try to cure cancer of the body and tail of the pancreas. Usually your spleen is removed as well because the tail of the pancreas is right next to it. Unfortunately it is not suitable for everyone. Many people who have cancer in the body and tail of their pancreas present with symptoms too late which means that their cancer has spread and so it is not operable. Before Liver Spleen Stomach Pancreas Small (bowel) intestine Gallbladder Duodenum Afterwards Liver Stomach Small (bowel) intestine Head and neck of pancreas preserved As with a Whipple s operation, you will have part of your pancreas left behind. So you may not need enzymes or insulin, but as with all the other surgery with the potential to cure cancer, it involves a major operation and long anaesthetic. PI_0175_04 Surgery for pancreatic cancer 7

8 Complications of major pancreatic surgery A complication is something that happens after surgery that makes your recovery more difficult. Chest infections or blood clots are both common complications after any surgery. All these operations are major surgery and there are risks attached to them but they are done to try to cure your cancer so you may feel it is worth taking some risks. Make sure you discuss the possible complications with your surgeon and ask all the questions you need to. It is important that your family are given the chance to talk things through with the surgeon as well. The complication rate is lowest in specialist centres where the surgeons have more experience at doing this difficult surgery. The commonest complications and the percentage of patients who develop them are: Bleeding 5% Leak or fistula 10-15% Infection 25% You may have bleeding straight after your operation because a blood vessel tie is leaking or because your blood is not clotting properly. Bleeding in the few days following surgery can happen because there is infection or a fistula also known as a leak forming. How bleeding is treated depends on what is causing it. A fistula is an opening. In this case, it means that part of the internal stitching to the digestive system has come apart or broken down resulting in some of the digestive juices being able to get into your abdomen. Drains put in during the operation will be left in until the fistula dries up. The fistula then usually heals on its own. Sometimes, surgery is needed to repair the leak or fistula. Infection can develop because there is blood or tissue fluid collecting internally around the operation site or because there is internal bleeding. If you develop an internal infection, you will be given antibiotics through your drip. Abscesses or any fluid 8 PI_0175_04 Surgery for pancreatic cancer

9 that has collected internally will need to be drained. Draining the abscess is performed usually by putting in a drainage tube. The needle or tube is guided into place with X-ray or ultrasound. Chest infection is a common complication of many operations. It happens because you are not moving around enough, or breathing deeply enough after your surgery. What you would normally cough up stays in your lungs and becomes a focus for infection. You can help prevent this by doing your deep breathing exercises. The physiotherapists and nurses will get you up as soon as possible to help you get moving. You will have had heart tests before your surgery, but these are very big operations and do increase the strain on your heart. Some people develop heart problems after surgery that they did not have before. Complications after surgery can be very serious. They are becoming less common as more of these operations are done in specialist centres but even so, as many as 5-9% of people who have this major surgery die directly as a result of complications after their operation. When resection of the cancer is not possible Sometimes it is not possible to remove the cancer, even though your specialist thought resection was possible based on the scans. This could be because the cancer has grown around the major blood vessels surround the pancreas, or because the cancer has spread to the liver. These findings are not always seen by looking at scans and X-rays. In cases when the surgeon finds it not possible to resect the cancer then a bypass is performed. There are two parts generally to a bypass, which are performed at the same operation. A biliary bypass is when the surgeon can cut the bile duct above the blockage and can reconnect it to the intestine. This bypass PI_0175_04 Surgery for pancreatic cancer 9

10 nearly always means that you will not become jaundiced again. Sometimes the duodenum can become blocked by the cancer and so to prevent this happening the surgeon can attach the small bowel below the duodenum directly to the stomach. This allows food you are digesting to pass through the bowel. This gastric bypass nearly always means that you will not experience extreme vomiting which is a symptom of the duodenum becoming blocked. This operation does not offer any chance of a cure but may enable you to live a life with better quality and less symptoms of your cancer. Having your operation Before your surgery, you will need to come to clinic again for a pre screening appointment. This is an opportunity for you to meet the Anaesthetist and have all your safety checks carried out which include: Blood tests to check your general health and kidney function A chest X-ray to check your lungs are healthy Tests to check your heart is healthy (an ECG) A detailed explanation of what to expect consent You may have had some of these tests while your cancer was being diagnosed. Blood tests may have to be done often because the balance of chemicals in your blood can change so quickly. It is important that your surgeon knows your blood chemical levels are accurate and up to date. Your physiotherapist or nurse will teach you breathing and leg exercises. You can help yourself to get better by doing these exercises after your operation. You should do them as often as you are told you need to. Breathing exercises will help to stop you getting a chest infection and leg exercises will help to stop clots forming in your legs. Both these complications of surgery can happen because you are 10 PI_0175_04 Surgery for pancreatic cancer

11 not moving around as much as you would normally. Your nurses will encourage you to get up and about as soon as possible after your operation. Remember if you stop or reduce your smoking before your operation, you will significantly reduce your risk of getting a chest infection after your surgery. When you go into hospital for your operation, your surgeon, anaesthetist and nurse will all come to talk to you about what will happen. Your surgeon will explain what is going to be done and what to expect when you come round from the anaesthetic. Do ask as many questions as you need to. The more you know about what is going to happen, the less frightening it will seem. Don t worry if you think of more questions you can speak to your nurses. If they cannot answer your questions, they can ask the doctor to come and talk to you again. If a liver transplant has been organised overnight, or if there is not a critical care bed available after your surgery, your operation will be postponed. This can be very unsettling but we will aim to give you another date as soon as possible. The specialist nurse who you probably met in clinic is also always available for questions. You will already have the contact numbers, if you do not, the nurses on the ward will give them to you. Immediately after the operation You will wake up in an Intensive care unit. This is nothing to worry about. These are places where you can have close nursing care and your surgeon and anaesthetist can keep a close eye on your progress. As soon as your doctors are sure you are recovering well, you will be moved back to the ward. This is usually in hours. Generally if you are awake enough, the surgeon will see you in the evening after the operation to tell you if you have had a resection of the cancer or a bypass. When you wake up, you will have several different tubes in place. This can be a bit frightening but it helps to know what PI_0175_04 Surgery for pancreatic cancer 11

12 they are all for. You will have: Drips (intravenous infusions) to give you drugs and fluids until you are eating and drinking again Tubes into your neck and arms to measure your blood pressure One or more tubes coming out of your abdomen near your wound. These wound drains stop blood, bile and tissue fluids collecting around the operation site A tube down your nose into your stomach (nasogastric tube) to drain it and stop you feeling sick. Another tube through your nose to your bowel to feed you while all the surgical joins heal A tube into your bladder (catheter) so that your urine output can be measured Epidural a tube into your back to give you a constant supply of pain killers You may also have a blood pressure cuff on your arm and a little clip on your finger to measure your pulse. At first, your blood pressure will be monitored through the tubes that go into your neck and arms. These go directly into your main blood vessels and give your doctors a more accurate measurement than a blood pressure cuff on your arm would. Your urine output will also be monitored because it can help to show whether you have too much fluid or are becoming dehydrated. Painkillers You will almost certainly have some discomfort for the first week or so but there are many different pain-killing drugs you can have. It is important to tell you doctor or nurse as soon as you feel any pain. They need to help to find the right type and dose of painkiller for you. Painkillers work best when you take them regularly so don t suffer in silence. Our experience is that epidurals work well to control the pain. However, if this doesn t work for you we can try other ways to give painkillers. 12 PI_0175_04 Surgery for pancreatic cancer

13 Eating and drinking We need to let the surgical joins in your abdomen heal and so we rest your digestive system by restricting your eating immediately after the operation and for at least 5 days afterwards. A 30ml tot of water can be taken orally each hour to moisten your mouth. In addition after surgery to any part of the digestive system, the bowel often stops working for a while. Until it starts up again and we are confident you are healing internally, you will not be able to eat or drink. Once you can eat and drink, you will be able to try sips of fluids. Gradually the amount you are allowed to drink will increase and soon you will be able to try other fluids as well as water. Once you are able to drink without being sick, your drip and nasogastric tube can come out and you can start to eat a light diet. Your wound The wound from the operation will be covered up when you come round. It will be left covered for a couple of days. Then the dressings will be changed and the wound cleaned. The wound drains will be left in until they stop draining fluid. Wound drains can usually be taken out about a week after your operation. This may be longer if there is any fluid leakage in the operation area. Your stitches will be left in for about two weeks. A district nurse will be available when you go home to check your wound and remove any clips or stitches when ready. The shape of the cut used for this operation is horizontal, following the natural shape and curve below your ribcage. Nerve endings are cut during the operation which may leave you with some numbness around the scar site. People who have experienced this numbness do not usually report that it makes a difference to their lives. PI_0175_04 Surgery for pancreatic cancer 13

14 Getting up This may seem impossible at first. Moving about helps you to get better but you will need to start very gradually. Your physiotherapist may visit you regularly after your operation to help you with your breathing and leg exercises. Your nurses will encourage you to get out of bed and sit in a chair one or two days after your surgery. They will help you with all the drips and drains. Over the next couple of days, the tubes and bags will start to be taken out. Then, it will be much easier to get around and you will really feel that you are beginning to make progress. Making progress After a few days you will be able to be up and about more. Gradually you will start to feel better. You will be able to eat more. Frequent small meals are easier to manage than three large meals a day. It may be helpful to you to see a dietician whilst you are in hospital who can give help and further advice. What should I eat? During any illness it is essential to keep as strong and nutritionally well as possible. It is not unusual for your appetite and eating habits to be affected by pancreatic cancer. It is likely that your overall food intake will be less than normal but there are ways of working around this. For example it may be easier to take several small meals throughout the day. This food does not have to be proper dinners but can be snack food instead. You could try: Toast, teacakes, scones, muffins with butter, jam or peanut butter Soups, either cream of or with extra milk added to boost calories Cheese, beans tinned fish on toast or a jacket potato, or cheese and crackers 14 PI_0175_04 Surgery for pancreatic cancer

15 Ice cream or a small dessert, full fat yoghurt or fromage frais Cereal with whole milk, milky drinks with biscuits, cake or a flapjack The suggestions above include high fat and sugar foods as these are much higher in calories to make up for what you are not eating at the moment. Your dietician can give you further help with this. Often people with pancreatic cancer have difficulty digesting fats. The pancreas produces digestive juice called enzymes to break down foods, particularly fats. If you are not able to do this then you can develop digestive symptoms including indigestion and wind often described as a gurgly stomach. Your bowel motions can also change they can be pale greasy and float in the toilet making them difficult to flush away, this is caused by undigested fats in the stools. It is important to control this if possible, as this can cause weight loss. As your appetite may be poor, we do not want to restrict your food in any way, and so we ask you to take pancreatic enzymes in the form of a capsule. There are different makes of capsule Creon, Nutrizym and Pancrex, but they all work in the same way. The capsules are taken just before you eat and the amount you need depends upon the amount and type of food you are going to eat. Higher fat foods such as chips, sausages, pies, pastries, cakes and any fried food will need more enzymes to help digest them. The best way to judge how effective the capsules are is to monitor your bowel habits. If you still have signs of not digesting your fats, i.e. floating stools then you need to increase the amount of pancreatic enzymes you are taking with your food. It is important to find the right balance of pancreatic enzymes that work for you to ensure you are digesting your food. Your dietician, doctor or specialist nurse can give you further help. PI_0175_04 Surgery for pancreatic cancer 15

16 Going home Most patients are home within 7-10 days of this operation. Going home can be a very emotional time. You may be looking forward to it and dreading it in equal measure. These feelings are normal. A district nurse will visit you at home and you will have the ward and specialist nurses contact numbers. You can ring us if you have any questions or worries. Please do not feel as if you are cut off from the hospital team, we are on the end of a phone. If you feel you need to speak to one of the medical team on the liver unit, you can do this by phoning the ward ( or ) and asking them to take a message for the doctor to ring you or maybe speak to the doctor directly. Alternatively, you could ring the hospital switchboard ( ) and ask to be connected to the surgical registrar on duty for the liver unit. If we are unable to remove your cancer, it is also a good idea to get the specialist cancer nurses in the community involved in your care. Macmillan Cancer relief usually provide these specialist nurses. These nurses can offer help and support in the community and can provide a good link between home and the hospital. We can arrange that before you leave hospital, someone from the ward will talk to you about this before you go home. It can take up to three months before you regain full fitness after your operation. You should only start to drive again when you feel you are able to perform an emergency stop comfortably and safely. You can discuss this with the surgeons in clinic. Coming back to clinic You will be given an appointment to come back to see the surgeons when you leave the ward. Sometimes this is posted to your home address. If you have had not received an appointment within a week of going home, please ring the ward 16 PI_0175_04 Surgery for pancreatic cancer

17 on When you come to clinic you will have an opportunity to ask questions, it may be a good idea to write these down beforehand. (There are note pages at the end of this booklet) If you had a bypass instead of a Whipple s (pancreatic resection) then you may see an oncologist (cancer doctor) as well as a surgeon when you come back to clinic. The results of any histology will be discussed with you. Histology is when the tissue removed during the operation is looked at under the microscope. The results of histology will usually confirm that the tumour removed was cancer. The clinics that see patients after their surgery are often very busy and you may have to wait for a short time. Please bear with us if you have to wait in the Outpatients department. Further information If you wish to have further information about your cancer or anything related to your illness, the following contact details may be helpful. The Patrick Room This is an information service based in the cancer centre at the Queen Elizabeth Hospital. The people here will be able to give you the contact details of an information service closer to where you live. Telephone: Useful websites PI_0175_04 Surgery for pancreatic cancer 17

18 Research into liver disease and liver cancer The Birmingham Liver Unit is one of Europe s leading centres for research into liver disease. A team of clini cal and laboratory scientists are working to better understand liver cirrhosis and liver cancer. In addition we have the expertise and facilities to develop and test new treatments. We are ideally suited to do this work in Birmingham because we have one of the largest liver transplant programmes in Europe, a large liver and pancreas surgery programme as well as a team of laboratory scientists with interna tionally renowned expertise in liver disease, hepatitis viruses and cancer. Our laboratories are supported by grants form various bodies including the Medical Research Council, Wellcome Trust, Cancer Research UK, the British Liver Trust and by kind donations to the Birmingham Liver Unit s Liver Foundation Trust. For more information about our research please visit: After your operation, the diseased tissue that has been removed is taken to the laboratories and looked at to confirm the disease that you were diagnosed with. Sometimes small sections that are surplus to diagnosis requirements are taken for research. The doctors will ask for your permission to do this. Research may involve taking cells from your tissue sample and growing them for short periods to allow experiments on them in the laboratory. Some of the cells or tissue may be frozen and stored for use in future experiments. When the research is completed the samples will be disposed of in an appropriate manner. 18 PI_0175_04 Surgery for pancreatic cancer

19 Please write down any questions you may have and bring this with you to your next appointment PI_0175_04 Surgery for pancreatic cancer 19

20 The Trust provides free monthly health talks on a variety of medical conditions and treatments. For more information visit or call Liver Services Queen Elizabeth Hospital Birmingham Mindelsohn Way, Edgbaston, Birmingham B15 2GW Ward 726: CNS team: PI15_0175_04 UHB/PI/0175 (Edition 4) Author: Catherine Markham and HPB CNS Team Date: May 2015 Review date: May 2017