Surgery for cancer of the pancreas Information for patients, relatives and carers Being told you have cancer is naturally a shock to you and your loved ones. During this time, you may experience a wide range of emotions and may find it difficult to remember everything you have been told. This leaflet has been provided as a guide to what may happen next. You are one of a small percentage of patients at Hammersmith Hospital considered suitable for this type of surgery. We will of course discuss your treatment plan further with you. You may find that other people with cancer of the pancreas are having different types of treatment. This is usually because their illness takes a different form and requires another type of treatment.

What is the pancreas? The pancreas is an important gland, which assists in the digestion of food and also controls the body’s sugar level. It lies in the upper part of the abdomen behind the stomach (see below).

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What is cancer of the pancreas? Cancer of the pancreas is an abnormal growth of cells (known as a ‘malignant tumour’) in the pancreas. As a result of a long and complex series of changes, normal cells can become cancerous. Cancer of the pancreas can cause the following symptoms: •

Poor absorption of food, resulting in weight loss

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Loss of appetite

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In some cases, abdominal (tummy) and back pain

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Blockage of bile flow, resulting in pale stools and dark urine

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Yellow jaundice

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Itching

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Some people may also become diabetic

Please note: Most pancreatic cancers are not caused by inherited faulty genes so family members are not likely to have an increased risk of developing the disease.

How is the diagnosis made? The symptoms above, along with blood tests, could indicate that there is a problem with the pancreas. We also use the following tests to help confirm the diagnosis: •

An ultrasound scan will be done to obtain a picture of the pancreas and bile duct and check for any abnormalities.

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A CT scan will give more detailed pictures of the pancreas and the surrounding structures/organs.

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Biopsy – a special needle is used to take a small sample of tissue or cells from the affected area for examination in the laboratory. Biopsies can be taken through the skin under local anaesthetic, sometimes using ultrasound or CT as guidance, or during ERCP (see below).

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ERCP (Endoscopic Retrograde CholangioPancreatography) is a special investigation done under sedation by carefully passing an endoscope (a long, thin, flexible telescope with a light on the end of it) through your mouth, down your throat, into your stomach and through an opening leading to the pancreas and gallbladder. A dye (known as ‘contrast medium’) is then injected into the pancreatic or biliary ducts. The dye allows detailed images (pictures) of the ducts (tubes) leaving the pancreas and gallbladder to be seen on X-rays.

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Endoscopic ultrasound - in some cases, it may be possible to use this technique which combines endoscopy (see ERCP) with ultrasound to provide close-up images of the pancreas.

Please note: If may not be possible for us to arrange all the tests on the same day. Your key worker will discuss this with you as appropriate.

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How is cancer of the pancreas treated? There are a number of types of treatment available and we will discuss the options with you. The treatment recommended for you individually will depend upon where the cancer is, whether it has spread or not, as well as your age and general health. Surgery It is sometimes possible to remove or bypass the tumour surgically while you are asleep under a general anaesthetic. However, this is a major procedure and not suitable for everyone. Before recommending this option, we may ask you to have further tests such as a visceral angiography (a special X-ray of the blood vessels in your abdomen) to see whether the tumour has spread to the blood vessels around your pancreas. We may also check your general fitness for surgery by testing your heart and lungs. Endoscopic stenting If it is not possible to remove the tumour and it is causing a blockage of the bile duct, we may suggest a procedure called ‘endoscopic stenting’. This is where an endoscope (see ERCP above) is used to place a stent (thin, hollow tube) in the bile duct. The stent will allow bile to drain away from your liver and will relieve any symptoms of jaundice you may have. Chemotherapy This means treatment by cytotoxic drugs, which are medicines given specifically to kill cancer cells throughout your body. Chemotherapy treatment may be discussed with you after surgery. Radiotherapy This is occasionally used for cancer of the pancreas and may be helpful for some people.

Treatment at Hammersmith Hospital Whilst being treated at Hammersmith Hospital, you will be given the name of one member of staff who knows about you and your treatment, and who should be your main point of contact with the hospital. This person could be any health professional working in the hospital and is known as your ‘key worker’. You should be given his/her contact details soon after your cancer diagnosis. If you do not know who your key worker is, please ask your doctor or nurse. When you have a discussion with your doctors, you are welcome to include friends or relatives. They may be able to remember details of a consultation that you have forgotten and they can ask questions on your behalf, if you wish. You may also like to make a note of any queries or concerns to discuss with the doctor. We can send you a summary of your outpatient consultations on request. If you would like us to do this, please tell your doctor during your appointment.

What does surgery involve? Your consultant has recommended surgery as the best treatment option for you. In our hepatopancreaticobiliary centre at Hammersmith Hospital, we usually perform one of two types of p3

operation for pancreatic cancer – a PPPP (pylorus preserving proximal pancreoduodenectomy) or a Whipple’s procedure.

Both operations involve removing part of the pancreas, the duodenum (part of the small intestine) and bile duct. However, in a Whipple’s procedure, part of the stomach is also removed. Which operation you have will depend upon where the cancer is and how much it has spread.

What are the benefits of these operations? •

If the cancer has not spread beyond the pancreas, surgery is the most effective treatment as it aims to remove the cancer.

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Surgery also relieves the symptoms associated with the disease.

Are there any risks associated with these operations? Removal of the pancreas and structures attached to it (such as the stomach) is a major operation which carries a significant risk. •

Specific to these operations, there is a five to ten per cent risk of leakage from the new joins made between the bowel or stomach and the pancreas, and between the bowel and bile duct, as well as parts of bowel that have been joined together after sections of it have been removed. Should this happen, most cases will heal while you are recovering on the ward. However, in some cases, leaking joins can cause bleeding or inflammation of the lining of the abdominal cavity (peritonitis), which will require a further procedure.

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As with any major surgery, the operation and anaesthetic put strain on the vital organs and there is a risk of heart failure, chest infection, kidney failure and thrombosis (blood clots). There is also a risk of pressure sores, as you will not be as active as usual. All measures are taken to reduce these risks, and this is why we check that you are as fit as possible before surgery.

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Bleeding may occur in five to ten percent of cases. This will usually require another procedure or operation to resolve.

The overall chance of surviving pancreatic surgery is 90-95 per cent. This varies from patient to patient depending on their general fitness. Your consultant will discuss this with you in detail. p4

Are there any alternatives to this treatment? This will depend upon your existing medical condition. Your doctor will discuss the options with you if appropriate.

Is there anything I should do to prepare for my operation? Before you come into hospital for your operation, try to organise things ready for when you come home. If you have a freezer, stock it with easy-to-prepare food. Arrange for relatives and friends to do your heavy work (such as changing your bedsheets, vacuuming and gardening) and to look after your children if necessary. If you live alone, or think you will need help at home with cooking, shopping and so on after your operation, please tell the nurses on the ward when you are first admitted. They will then be able to assist you in organising appropriate help for your discharge home. It is routine procedure to admit patients to the intensive care unit (ICU) for the first day after this type of operation. It is important that your relatives and friends are aware that this is normal and is nothing to be alarmed about. If you wish, it may be possible to visit the ICU on the day before your operation. Please tell your nurse if you would like to discuss this further.

What happens before my operation? We will admit you to the ward on the day of your operation. Two weeks prior to your admission date, we will arrange for you to attend our pre-assessment clinic. You will be seen by one of our surgical doctors and a member of our nursing team. Your temperature, blood pressure, respiration rate, height, weight and urine will be measured to give the nurse a baseline (normal reading) from which to work. You will have an ECG (tracing of your heart rhythm) and a chest X-ray. A blood sample will be taken to see how well your liver and kidneys are working. We will advise you to have a shower or bath before going to the operating theatre. All make-up, nail varnish, jewellery (except wedding rings, which can be taped into place), body piercings and dentures must be removed. We will advise you at what time you will need to stop eating and drinking before surgery.

What happens on the day of my operation? Your surgeon will review you, explain the procedure to you in detail and ask you to sign a consent form. This is to make sure that you understand the risks and benefits of having the operation. The anaesthetist will visit you to discuss the anaesthetic before you go to the operating theatre. One of the nurses will then come and prepare you for the operating theatre.

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The operation usually lasts between two and ten hours, depending on the type and complexity of the procedure. Our average operating time is about five hours, and less than five per cent of our patients require a blood transfusion during the operation.

What happens after the operation? You will be taken to the ICU (intensive care unit) for at least the first day after your operation. Once your condition is stable enough, we will transfer you back to the ward for the rest of your stay in hospital. The nurses will take your temperature, pulse and blood pressure at regular intervals to monitor your recovery and it will sometimes be necessary to wake you up to do this. It is very important that we monitor your progress after your operation, so please be patient with the nursing staff during this time. The sections of pancreas and other organs that were removed during the operation will be sent to the laboratory for testing (known as ‘histology’) and to confirm whether further treatment, such as chemotherapy or radiotherapy, is required. Your consultant will discuss the results with you at your next outpatient appointment.

How will I feel after the operation? You may feel light-headed or sleepy after the operation. This is due to the anaesthetic and may continue until the next morning. It is also common to have a sore throat for two or three days after having a general anaesthetic. This sometimes happens because the anaesthetist has to pass a tube down your windpipe to give you the anaesthetic gases that keep you asleep during the operation. The nurses will move you regularly whilst you are in bed to prevent pressure sores and they will get you up and about as soon as possible to prevent complications such as chest infections and blood clots. However, it is important to remember that you will feel very weak after the operation. This can vary from person to person, but can last for some weeks. By the time you go home, you will probably still feel less strong than before your operation and this is perfectly normal. Over time you should notice yourself feeling stronger and having more energy. Surgical staples (also known as ‘clips’) will have been used to close your wound and will probably be removed ten days after your operation. You will also have a drain (tube) beside your wound. This is so that any blood or fluid that collects in the area can drain away safely into a collection bottle and this will help prevent swelling. The tube will be removed when it is no longer collecting fluid.

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Pain control An anaesthetist will have assessed your pain control needs before your operation. Initially, any pain or discomfort may be controlled by an epidural (where strong painkillers are given through a continuous drip in your back), similar to that used by women during labour and childbirth. Alternatively, you may have a device which you use to control your pain yourself. This is known as PCA (patient-controlled analgesia) and you will be shown how to use it. An anaesthetist and a specialist nurse will monitor your epidural or PCA closely to make sure that your pain is under control. Any extra pain will be monitored and treated by your nurse. Eventually you will be weaned off the epidural or PCA and given regular doses of painkilling tablets instead. Eating and drinking After the bowel has been handled in surgery, it slows down for a short time. For this reason, you will not be able to have anything to eat or drink for about five days after your operation. This will also allow the new joins (where the pancreas and parts of other organs have been removed) to heal before you start eating and drinking again. We will give you fluids and a liquid diet through drips (tubes) to prevent dehydration until you are able to eat and drink normally. You will also have a tube that passes down your nose into your stomach. This tube removes any excess fluid (digestive juices) from your stomach, preventing vomiting and thereby making you more comfortable. When you are allowed to eat and drink again, you will be started on fluids first before solid food is slowly introduced. The dietitian, nursing staff and doctors will continue to monitor you closely during this time. They will advise you to have small, frequent meals, with high protein drinks between meals. The dietitian will visit you before you are discharged and give you some printed information to take home with you. Bowels and urination You are unlikely to have your bowels open for the first few days after surgery. Once your bowels start working again, you may have diarrhoea. This is normal and will settle down. However, you may find that you have your bowels open more than once a day and the stools are offensive (smelly). This is due to the lack of pancreatic juice and you may be prescribed some tablets to help with this. A catheter (tube) will be inside your bladder to drain urine away and allow the nurses to closely monitor your urine output after the operation. The tube will be removed once you are able to get out of bed to use the toilet.

When can I go home? You will be in hospital for a minimum of 10 days. When you can go home will depend upon your recovery, whether you are managing to eat and drink, as well as the support available at home. We will discuss this with you before the operation and again while you are recovering. If you require any assistance at home, please let the ward nurses know as soon as possible.

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If possible, please arrange for someone to come and collect you by car on the day of your discharge home, as you will not be able to drive yourself or travel on public transport. It is important that you make the necessary plans, as you will be expected to make your own arrangements for going home unless your doctor feels there are special reasons why you need hospital transport. We will give you a two-week supply of medication to take home with you. Any further medication will need to be prescribed by your GP. Please make sure you arrange this before the initial two-week supply runs out.

Will I need to visit the hospital again? Yes, for a check-up in the outpatient clinic two to four weeks after your discharge home. Your doctor will discuss the histology (laboratory test) results with you, as well as any further treatment required.

When can I get back to normal? Recovery from this surgery varies from person to person, but tends to take between three and six months. Diet There are no foods that you need to avoid after your operation. Unless you have been advised otherwise by a dietitian, we would recommend that you eat a well-balanced diet, including five portions of fruit and vegetables a day. Driving Do not drive until your strength and speed of movement are back to normal, as you must be able to perform an emergency stop. You should also make sure that you are not drowsy from any painkillers and that your concentration is good. Discuss this with your doctor if you are not sure. It is important to inform your insurance company that you have had an operation to ensure that you are covered in the event of an accident. Work, exercise and general activities At home, it is important that you rest, but you should keep as active as possible, gradually building up what you do each day. Most people are able to get back to normal (including participating in sport or exercise) about three months after they go home. Simple household chores such as vacuuming can involve a lot of bending and stretching, which you may find uncomfortable. Try to get help with these for the first few weeks after surgery. You should not lift anything heavier than six to eight pounds (the same weight as a full three-pint kettle) for two to three months after your operation. If you have children, try to let them climb onto your lap when you are already sitting down, rather than lifting them up. You should be able to return to work three months after your discharge home. However, this will depend on the type of work you do and you should discuss this further with your doctor.

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Sexual activity In most cases, sexual intercourse can be resumed once you have recovered from your operation and your wound is fully healed. It is normal to be a little anxious at first, but try to be patient. If difficulties persist, please do discuss them with your doctor, who will be able to help and advise. Looking after your wound at home It is safe to get your wound wet, unless your doctor has told you otherwise. Please do not use antiseptic, bubble bath or anything else in your bathwater until the wound has healed, unless instructed by your doctor. Do not soak in the bath for long periods. Showering is fine. Make sure that you dry the wound area well after washing.

Is there anything I need to watch out for at home? You may feel different sensations in your wound such as tingling, itching or numbness. This is normal and is part of the healing process. However, if you experience a high temperature or fever, swelling, pain, discharge or excessive redness around the wound site, please contact your GP as you may have an infection. Please do not hesitate to contact your nurse specialist or the ward where you had your operation if you have any queries or concerns. You can also contact one of the doctors in our unit by telephoning 020 3313 1000 and asking for bleep 5481 or 5903.

How do I get a second opinion? We will answer all of your questions honestly and to the best of our ability. However, we readily appreciate that after discussing the options with us, you may wish to obtain a second opinion. You are welcome to do this. If you do not know whom to contact, we will be pleased to suggest appropriate specialists for you to consider and will make copies of your notes, X-rays and scans available to them. This will mean that you do not need to have the same tests done again elsewhere. If you wish, we will also make the referral for you.

Contacting the hospital After a big operation, you may feel vulnerable and alone, especially once you have left the hospital. The services listed below are available for you, your family and friends. •

Clinical nurse specialist/key worker for hepatobiliary cancers

020 3313 2019

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Ward 8 (for out-of-hours queries)

020 3313 3501

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Macmillan counsellor

020 3311 1629

If you need to contact your consultant, please do so by dialling switchboard at Hammersmith Hospital on 020 3313 1000 and asking to speak to their secretary.

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Useful contact numbers • Macmillan Cancer Support Helpline 0808 808 0000 This is a free line for people affected by cancer who have questions about cancer, need support or just someone to talk to. It is open from Monday to Friday, 09.00 – 20.00 (interpretation service available). • Information Prescription Service www.nhs.uk/ips This service contains reliable and accurate cancer information to help patients manage their health more effectively. • Pancreatic Cancer UK www.pancreaticcancer.org.uk This charity provides easy access to the most up-to-date information on pancreatic cancer. It also provides individual support via email and telephone and run discussion forums for pancreatic cancer patients, their carers and families to enable them to share experiences, advice and inspiration. • Benefits Enquiry Line 0800 88 22 00 The service provides advice and information on the range of benefits available.

How do I make a comment about my treatment? We aim to provide the best possible service and staff will be happy to answer any questions you may have. However, if your experience of our services does not meet your expectations and you would like to speak to someone other than staff caring for you, please contact the patient advice and liaison service (PALS) on 020 3313 3322 or 020 3133 0088 (Charing Cross and Hammersmith hospitals), or 020 3312 7777 (St Mary’s Hospital). You can also email PALS at [email protected]. The PALS team are able to listen to your concerns, suggestions or queries and are often able to help sort out problems on behalf of patients. Alternatively, you may wish to express your concerns in writing to: The chief executive Imperial College Healthcare NHS Trust Trust Headquarters The Bays, South Wharf Road London W2 1NY

Alternative formats This information can be provided on request in large print, as a sound recording, in Braille, or in alternative languages. Please contact the communications team on 020 3312 5592.

Cancer services Published: March 2006; May 2009; December 2011 Review date: December 2014 Reference number: T0517/VER3 (previously known as SCA/054/2009/VER2) © Imperial College Healthcare NHS Trust

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