The Whipple s procedure. Information for patients, families and carers

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1 The Whipple s procedure Information for patients, families and carers

2 Contents Introduction 3 Centralisation 4 What is the pancreas? 5 What is the Whipple s operation? 6 When is it done? 8 Benefits of surgery 8 Pre-assessment 9 After the operation 10 Possible risks and complications 12 Surgical removal of cancer may not be possible 13 Alternative treatment to surgery 13 Further treatments 14 Diabetes 14 Return to normal activities 14 Long-term changes 15 Driving 15 Sexual relations 16 Work 16 Financial concerns 17 Information 17 Contact details 18 Specialist nurse contact details 19 This booklet has been designed to help you during your treatment. It contains the sort of information people often ask about their condition and surgery. You have been referred to this trust for possible pancreatic surgery. You and a group of specialist clinicians and practitioners will have reached the decisions made about your plan of care. This group is called an MDT, multi disciplinary team. Surgeons, cancer doctors, radiolologists, medical doctors, pathologists and specialist nurses who have a professional interest in the pancreas and surrounding organs, make up this team. 2 The Whipple s procedure The Whipple s procedure 3

3 Centralisation You may be surprised that you have been asked to receive treatment in Southampton, even if you do not live locally. Several studies have shown that pancreatic surgery has a better outcome in terms of surgical success and lowering the rate of complications in hospitals that perform a higher number of procedures a year compared to lower volume hospitals. This is due to the increased skill and expertise of the clinical MDT involved in all aspects of your care. The department of health published a document in 2001 called improving outcomes in upper GI cancers which highlighted the need for specialised centres working within a large cancer network covering a population of three million people. In 2007, pancreatic surgery on the South Coast became centralised to Southampton so that instead of small numbers of operations being done in several hospitals, all these operations are now done in Southampton. We now do two or three Whipple s or similar operations every week. What is the pancreas? The pancreas is a gland that lies at the back of the upper abdomen, behind the stomach. It has two very important functions: firstly it makes enzymes (digestive juices) that are released into your intestines (gut) to enable you to break down and absorb nutrients from your food. The pancreas also produces insulin, which controls the level of sugar in the blood. Lack of insulin causes diabetes. If the pancreas is not working properly these two sets of functions often break down. The anatomical relations of the pancreas are quite complex (see below). In particular it is intimately related to several very large and important blood vessels. Apart from the vessels shown above, the pancreas is also in contact with some of the most important blood vessels in the human body, and several organs such as the liver, kidneys and spleen. Surgery on the pancreas always has to take into consideration the close proximity of these other organs and vessels. 4 The Whipple s procedure The Whipple s procedure 5

4 What is the Whipple s operation? This procedure is named after the American surgeon, Dr Allen Whipple, who developed the surgery during the 1930s. It is also occasionally referred to as a pancreaticduodenectomy in reference to the organs that are removed. During the Whipple s operation, the head of pancreas, a portion of the bile duct, the gallbladder and the duodenum are removed, usually with part of the stomach. After removal of these structures, the remaining pancreas, bile duct and stomach are rejoined to the intestine. This allows pancreatic juice, bile and food to flow back into the gut, so that digestion can proceed normally. The operation normally lasts four to seven hours. 1. Hepatico-jejunostomy 2. Gastro-enterostomy 3. Pancreatico-gastrostomy Please note that each of our consultant pancreatic surgeons vary their surgical technique slightly from one another. They will be happy to illustrate their own individual method for you at your clinic consultation or on the ward. 1. Hepatico-jejunostomy 2. Gastro-enterostomy 3. Pancreatico-gastrostomy 4. Entero-enterostomy 6 The Whipple s procedure The Whipple s procedure 7

5 When is it done? The Whipple s operation is usually performed for cancers in the head of the pancreas but is also used to treat other tumours and benign lumps in the pancreas, as well as cancers of the bile duct, duodenum or ampulla. Non-cancerous (benign) disorders such as chronic pancreatitis can be treated with Whipple s surgery. You may have visited your family doctor because your skin and eyes have appeared yellow or your urine has become darker in colour. This is known as having jaundice, which is caused by a blockage to the bile duct. If you are jaundiced before your operation, you may have an endoscopy (ERCP) to place a plastic tube (stent) into the bile duct to unblock it, allowing bile to flow normally. Benefits of surgery The aim of surgery is to remove all of the visible tumour. This means that you should live longer, with a better quality of life than you would without the operation. Without surgery, the average survival of patients with pancreatic cancer is less than one year, with very few people surviving more than two years. Your survival length should be longer if you are having the Whipple s operation for a non-cancerous condition. A successful Whipple s operation can improve your chance of survival at two years to 40-60%, and survival at five years is 20-30%. With other types of tumours, the results are often better. Although you will need time to recover from the operation, almost all patients who have this surgery get back to living their normal life. You should be able to eat and drink normally (although you will be given enzyme supplements to help your digestion) and get back to all your usual activities. Pre-assessment An appointment will be made for you to attend our pre assessment clinic before your surgery. A pre assessment nurse will ask you questions about your medical history, take a tracing of your heart (ECG), and record your blood pressure and pulse. You will probably also need to have a blood test. You may have an opportunity to meet the upper GI support sister who will be able to answer any questions you have regarding the surgery or your hospital admission. Your pre assessment visit will include being assessed by an anaesthetist who will decide upon your fitness for surgery. He/she will also discuss the anaesthetic and methods of pain relief with you. This visit to hospital can take up most of the morning or afternoon, as there are various consultations/ investigations to organise so you may wish to bring a book or magazine for between appointments. Please bring a list of all your current medicines and tablets. Before the operation You will be asked on the day of admission to phone the upper GI admissions clerk on at 1pm to find out where you have been allocated a bed. It is usual to come into hospital the day before your surgery. There might not be a bed available on the upper GI ward prior to your surgery but every attempt will be made by the surgical bed manager to place you within the surgical division. The nursing staff will admit you to the ward and a house officer (doctor) will check that your blood tests are up to date and ensure everything is in place for your operation the next day. 8 The Whipple s procedure The Whipple s procedure 9

6 After the operation From the recovery suite in theatres, you will be transferred to the surgical high dependency unit (or to the intensive care unit if that is necessary). You will remain there for a few days to receive specialist care and monitoring from skilled critical care doctors and nurses. Your tummy may hurt so please ask the nursing staff for pain relief if you are unable to breathe deeply and cough easily. It is important that you can breathe properly in order to prevent developing a chest infection. You will return to the upper GI ward when your consultant surgeon and the ITU/HDU consultant are satisfied that you no longer need intensive nursing care. It is important that you try to get up and move about as soon as possible after the operation. This will not only help your chest but also help to prevent blood clots in your legs. To begin with, you will have many tubes attached to your body that you didn t have before going to theatre. You may find these frightening and uncomfortable but as your condition improves they will decrease in number. It is normal to have some or all of these after this kind of surgery: tubes resting on your nostrils or a plastic mask attached to a thick tube to give you oxygen a tube in your nose to provide liquid feed down into your tummy while the joins heal a tube in your nose to collect excess acid and bile from your stomach a tube stuck to your neck with a clear plaster for drips, medication, and monitoring blood flow and sometimes to give special liquid food drips in your arms/hands to keep you hydrated thick tubes called drains to collect excess fluid from the operation site sometimes a feeding tube into your tummy dressings over the wound site (1st 48 hours) then either underneath this the wound may have blue stitches, or surgical clips, or it may have been closed with invisible absorbable stitches. a catheter (tube into your bladder to collect urine). Most of these tubes and drains are removed by the end of your first week in hospital, occasionally you will still have a tube coming out of your tummy when you first go home. If this is necessary then we will make sure that you understand why it is there and know how to look after it until we remove it in clinic. The length of stay in hospital after this surgery is quite variable, but the average is ten to 14 days. If you are over 75 or have other health problems you may need to stay in longer, whilst some very fit patients may go home as early as one week after the operation if they recover quickly. If you have complications after this surgery occasionally you need to stay in much longer. It is a good idea to start thinking about how you will manage at home after your surgery before you come into hospital. If you live alone or your partner is not able bodied then we may need to help you make plans for a short period of convalescence afterwards. It is best to talk to your close family and friends as well the upper GI support sister and GP to see what options you have, either a relative staying with you or you staying with family or friends is often best if this is possible. If you think you are going to need us to help organise convalescence, then let us know as soon as possible so we can help make arrangements in advance. Once we decide that you are fit enough to be discharged you will usually recover faster if you are able to convalesce outside of hospital. 10 The Whipple s procedure The Whipple s procedure 11

7 Possible risks and complications Like all major surgery, there are some risks and complications associated with the procedure. Southampton is a specialised centre where our skilled pancreatic surgeons conduct approximately 100 Whipple s operations between them each year. Most people recover quickly from surgery, but there may be complications, and there is a small risk that these complications could be fatal. If you are reasonably healthy, under 75 yrs old and your operation is straightforward then the risk to your life is about one in 50. If you are more elderly, have other serious health problems or have a very difficult tumour to operate on then the risk to your life may be as high as one in ten. Most complications are minor and just slow down your recovery a little, however some are much more serious and may mean you stay in hospital for a lot longer than you expected. Possible complications include: General anaesthetic complications: these have been minimised by improvements in pre-operative evaluation and peri-operative care, however major surgery such as this places a huge strain on the body s resources; the risks for any individual patient are different and are assessed person by person. If we think the risks are too great then we will advise against surgery. Chest infection and problems with breathing Bleeding during the operation, which may result in blood transfusion Wound infection Blood clots forming in the legs Anastomotic leak: During the operation the surgeon will join together the pancreas, stomach, small bowel and bile duct. Occasionally, one of these joins can leak after the operation. The join that is most likely to leak is that between the pancreas and stomach or bowel (number 3 above), this join is most likely to leak because of the caustic nature of the substances passing through it. Pancreatic juice contains very potent digestive enzymes, which can break down proteins trying to heal the join and thus disrupt the reconstruction. If you have a leak then some of the plastic drain tubes coming out of your tummy will be left in place to drain the fluid off until the leak has stopped. Rarely a leak can damage blood vessels close to the pancreas and can cause serious bleeding several days after your operation, this is the most serious complication after this type of surgery and often requires an operation to repair the blood vessel. Delayed emptying of the stomach: After the surgery, some patients take longer to get back to normal eating and drinking because of slow recovery of the normal actions of the stomach. This is called delayed gastric emptying. During this time, if it happens to you, you will have a drip going into your vein to keep you hydrated with fluids. You will also be fed with liquid food, which will pass into your body through a tube until your stomach has recovered enough to take in food through your mouth. Some patients take a little while longer to recover and may need to continue with tube feeds for several weeks. Surgical removal of cancer may not be possible If you are having this surgery for the treatment of cancer, you will have undergone certain tests or scans that indicate the cancer is localised and has not spread. However, sometimes problems are discovered during the operation that could not be identified before the surgery. This may involve spread to other organs or that the cancer is fixed to important structures. In these cases, the cancer cannot be removed. Your surgeon may then perform a bypass operation to prevent a blockage of the bile duct or stomach occurring in the future. Alternative treatment to surgery If you have a diagnosis of cancer, chemotherapy is the main alternative treatment to surgery. It may be able to shrink the cancer or delay its growth. However, this treatment will not be able to cure you. You may be advised to have a course of chemotherapy prior to your surgery or may have some following your recovery from the operation. Occasionally, radiotherapy or chemotherapy is suggested before having the Whipple s operation in order to try and shrink the tumour and make it possible to remove. 12 The Whipple s procedure The Whipple s procedure 13

8 Further treatments If the sample of pancreas removed during the operation turns out to include cancer cells, then you may be referred to see an oncologist (a doctor who specialises in treating cancer with chemotherapy). Chemotherapy may be given to you as an injection, drip, or tablets, but you will have the chance to discuss this in more detail with the specialist doctor and nurses if applicable. Occasionally, chemotherapy is prescribed before starting surgery. It is very important that you understand your choices and you have the treatment, which is most effective for you and your circumstances. Diabetes The pancreas produces insulin that is required for control of blood sugar. There is a risk of developing diabetes after this operation. In most cases, patients who are not diabetic before surgery are unlikely to develop diabetes afterwards. If you are diabetic before your operation, you may need additional medication or insulin after surgery. The cancer may sometimes cause diabetes and it may be easier to treat after the operation. The normal range for your blood sugar level is between 4-7mmol before you eat a meal. Before you are discharged from the hospital you maybe taught how to use a blood glucose meter and be advised to check your sugar levels at home. If your sugar level is outside the normal range or if you are concerned you will need to seek help/advice from your surgery. Return to normal activities When you return home, you will find movement and activity difficult for the first few weeks, and you will probably need help around the house, making meals etc. You may also feel low in mood, but this should resolve shortly. It is important to try and achieve a healthy balance between activity and rest. You may think about returning to normal activities after three to six months. This will vary on an individual basis. Please ask your consultant or specialist nurse for advice. Long-term changes Pancreatic enzyme supplements/maldigestion/malabsorption: The pancreas produces enzymes, which are needed to digest (break down) food. The surgery you are having will affect the production of these enzymes. This may lead to poor digestion, and absorption of food. If this occurs it can result in loose stools that are greasy, pale and with a tendency to float. You will be prescribed Pancreatic enzyme capsules to help digest your food properly, and keep your bowels working normally. Your doctor, pharmacist, dietitian and specialist nurse will advise you on taking these while you are in hospital. Your consultant, dietitian and specialist nurse will review your prescription requirement at your future out patient appointments. Please ask your specialist nurse or GP if you would like to be referred to a dietitian after you have left hospital. Dietary changes: There will be no restriction on your diet after the operation, unless you have developed diabetes. Your stomach will be slightly smaller after the surgery, so you may find that eating little and often helps to prevent symptoms of bloating and feeling full. This is normal in the first few weeks and should improve with time. Weight loss is common after surgery but it is important to try and avoid this. Focus on eating high calorie, high protein meals, snacks and drinks following your operation. The dietitian will give you further advice and information. Driving This will depend on the type of operation you have had. You should ask the medical staff for specific advice. However, generally you should not resume driving until your level of concentration, strength and mobility have improved enough for you to drive safely. It is important to ensure you are able to perform an emergency stop and this should be practised on a quiet road when you feel ready. If you cannot do an emergency stop confidently then you cannot drive a car. It is always advisable to check with your insurance company prior to starting driving again. 14 The Whipple s procedure The Whipple s procedure 15

9 Sexual relations Resuming your sexual relationship may be influenced by the type of surgery you have had. Medication, hormones, chemotherapy and your general condition can alter your desire and response to sex. There is no correct time to return to sexual activity but if you experience problems or have questions, ask your specialist nurse or doctor. Work The time at which you are able to return to work depends on the nature of your surgery and type of work you do. Your surgical team of doctors and nurses will be able to advise you, although this may need reassessing depending on how you recover at home. Please ask the nursing staff to organise a sick certificate which will cover the time spent in hospital and the first initial couple of weeks at home, you may then need to visit your GP to review this further. Every person s rate of recovery is different but as a rough guide someone doing a heavy manual job will probably need at least six months before being able to work normally again, although if you can do light duties you may be able to go back to work a little sooner. Someone doing a desk job should expect to take a minimum of three months off. If you have chemotherapy after your surgery this will often mean that you find it difficult to get back to work full time until after this has finished. You must remember that you will get tired very quickly in the first few months after surgery and your concentration and decision making will be poor to start with as well, so it is best not to rush back to full-time work too soon as it may slow down your recovery and you may make mistakes. It is sensible to see if you can go back to work part time or on light duties for a few weeks when you first go back to work. Financial concerns Your diagnosis may have an impact on your financial circumstances, particularly if you are still working. Your specialist nurse can advise you and the ward nurses can refer you to a social worker at the Macmillan Centre who specialises in financial assistance. If you have an NHS payment exemption certificate, you may be entitled to a reduction in travel costs. From April 2009, all patients with diagnoses of cancer will be exempt from paying prescription charges. Further information University Hospital Southampton NHS Foundation Trust has patient information documents on its own web site Pancreatic specific charities, which also provide support and information, such as Pancreatic Cancer UK ( ; and Pancreatitis Supporters Network ( ; Cancerbackup ( ; The Macmillan Cancer Information and Support Centre, B Level, Southampton General Hospital. We have a wide range of information booklets available. Please ask the ward, pre-assessment or specialist nurses if you would be interested in looking at one. You may find it helpful to talk to a patient who has been through Whipple s surgery. Your specialist nurse or support sister may be able to put you in contact with a patient who could tell you about their experience if you ask her. There is a patient representative for the upper GI site specific group, who had an operation in Should you have any concerns, suggestions or ideas about patient care, you can bring them to his attention via your specialist nurse or support sister. He will then raise them at the next meeting to the group of health care professionals. If you have a diagnosis of cancer, further support can be gained from the Wessex Pancreatic and Bile Duct Support Group. For more details ask your specialist nurse. 16 The Whipple s procedure The Whipple s procedure 17

10 Contact details Specialist nurse contact details If you have queries regarding out patient appointments, please call your consultant s secretary. Professor Primrose and Mr Johnson Secretary Mr Pearce and Mr Abu Hilal Secretary If you have any urgent queries at weekends or in the evening, you can call the upper GI ward, E8, on If you require nutritional support or advice from a dietitian, you can ask your GP to refer you to a community dietitian. If you were already seeing a hospital dietitian while you were an in-patient, you may phone the dietetic department at Southampton General on You should contact your GP or out-of-hours service immediately if you experience any of the following symptoms: increased pain raised temperature diarrhoea or vomiting bleeding dizziness. If you have been referred to Southampton from another hospital, you will be given details of your local clinical nurse specialist, who you may contact following discharge. Your CNS will have been informed by the Southampton specialist nurses of the surgery you have undergone and of your discharge from hospital. The Southampton clinical nurse specialist does not assume the key worker role for patients from referring Trusts. That responsibility lies with the referring Trust/ Primary Care Trust. We provide a liaison service and in-patient support during your episode of care at Southampton General Hospital. NHS Direct and A&E/ walk-in centres will not be familiar with your case and the surgery you have had done. Keep the copy of your discharge summary in a safe place in case you do encounter problems to ensure that everyone is informed of your recent history. You can call the ward for telephone advice but you may need to be admitted to Southampton General Hospital for assessment. If you are admitted to a hospital other than Southampton General Hospital, please ask them to inform Southampton of your admission. 18 The Whipple s procedure The Whipple s procedure 19

11 Consultant secretary Individual notes If you need a translation of this document, an interpreter or a version in large print, braille or audio, please telephone for help University Hospital Southampton NHS Foundation Trust. All rights reserved. Not to be reproduced in whole or in part without the permission of the copyright holder. Version 2. Published December Due for review December WHIP001.02

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