PANCREATIC CANCER FACTSHEET

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1 What is the pancreas? The pancreas is in the upper abdomen and lies behind the stomach and intestines (guts). The shape of the pancreas is like a tadpole, and so the pancreas has a 'head', a 'body' and a 'tail'. The head section is nearest to the duodenum (the part of the gut just after the stomach). The pancreas makes a fluid that contains enzymes (chemicals) that are needed to digest food. The enzymes are made in the pancreatic cells and are passed into tiny ducts (tubes). These ducts join together like branches of a tree to form the main pancreatic duct. This drains the enzyme-rich fluid into the duodenum. The enzymes are in an inactive form in the pancreas (otherwise they would digest the pancreas). They are 'activated' in the duodenum to digest food. Groups of special cells called 'Islets of Langerhans' are scattered throughout the pancreas. These cells make the hormones insulin and glucagon. The hormones are passed (secreted) directly into the bloodstream to control the blood sugar level. The bile duct carries bile from the liver and gallbladder. This joins the pancreatic duct just before it opens into the duodenum. Bile also passes into the duodenum and helps to digest food. What is cancer of the pancreas? Cancer of the pancreas is relatively uncommon. It develops in about 1 in 10,000 people each year in the UK. There are several types of pancreatic cancer, but more than 9 in 10 cases are 'ductal adenocarcinomas'. Ductal adenocarcinoma of the pancreas This type of cancer develops from a cell which becomes cancerous in the pancreatic duct. This multiplies and a tumour then develops in and around the duct. As the tumour enlarges: Other types of cancer of the pancreas It can block the bile duct or the main pancreatic duct. This stops the drainage of bile or pancreatic fluid into the duodenum. It invades deeper into the pancreas. In time it may pass through the wall of the pancreas and invade nearby organs such as the duodenum, stomach or liver. Some cells may break off into the lymph channels or bloodstream. The cancer may then spread to nearby lymph nodes or spread to other areas of the body (metastasise). There are some rare types of cancer which arise from other types of cells within the pancreas. For example, cells in the pancreas that make insulin or glucagon can become cancerous ('insulinomas' and 'glucagonomas'). These behave differently to ductal adenocarcinoma. For example, they may produce too much insulin or glucagon which can cause various symptoms. What causes cancer (adenocarcinoma) of the pancreas? A cancerous tumour starts from one abnormal cell. The exact reason why a cell becomes cancerous is unclear. It is thought that something damages or alters certain genes in the cell. This makes the cell abnormal and multiply 'out of control'. Many people develop cancer of the pancreas for no apparent reason. However, certain risk factors increase the chance that pancreatic cancer may develop. These include: Ageing. It is more common in older people. Most cases are in people over 60. Genetic factors. Some families have a higher incidence of pancreatic cancer than average. Diet is probably a factor. Eating a fatty diet seems to increase the risk. Smoking. Chronic pancreatitis (persistent inflammation of the pancreas). Most cases of chronic pancreatitis are due to drinking a lot of alcohol. There are some other less common causes. Diabetes. But note: diabetes is common and the vast majority of people with diabetes do not develop cancer of the pancreas. People with concerns about their own health should contact their GP or cancer team

2 What are the symptoms of cancer of the pancreas? Symptoms of a blocked bile duct In about 7 in 10 cases the tumour first develops in the head of the pancreas. A small tumour often causes no symptoms at first. As the tumour grows it tends to block the bile duct. This stops the flow of bile into the duodenum which leads to: Jaundice. (Yellow skin caused by bile seeping into the bloodstream due to the blockage.) Dark urine - caused by the jaundiced blood being filtered by the kidneys. Pale faeces - as the faeces contain no bile which causes their normal brown colour. Generalised itch caused by the bile in the bloodstream. Pain is often not a feature at first. Therefore a 'painless jaundice' that becomes worse is often the first sign of cancer of the pancreas. Other symptoms As the cancer grows in the pancreas, further symptoms that may develop include: Pain in the upper abdomen. Pain in the middle of the back can also develop if the tumour spreads backwards. You may feel generally unwell and lose weight. These symptoms are often the first to develop if the cancer develops in the body or tail of the pancreas (when the bile duct is not blocked). You may not digest food very well as the amount of pancreatic fluid will be reduced. This can cause smelly pale faeces, and weight loss. Rarely, diabetes develops if nearly all the pancreas is damaged by the tumour. Rarely, a tumour can trigger inflammation of the pancreas - 'acute pancreatitis'. This can cause severe abdominal pain. If the cancer spreads to other parts of the body, various other symptoms can develop. How is cancer of the pancreas diagnosed and assessed? Initial assessment There are many causes of jaundice and of the other symptoms listed above (for example, a blocked gallstone, hepatitis, cancer, etc). Therefore, some initial tests are usually arranged if you develop jaundice or the other symptoms listed above. Typically, these include an ultrasound scan of the abdomen and various blood tests. These initial tests can usually give a good idea if the cause of jaundice is a blockage from the head of the pancreas. Another test that may be arranged is ERCP (Endoscopic Retrograde Cholangio-pancreatography). ERCP combines the use of endoscopy (a flexible telescope to look inside your gut) and x-rays. An endoscope is a thin, flexible, telescope. It is passed through the mouth, into the oesophagus and down towards the stomach and duodenum. The endoscope contains fibre optic channels which allows light to shine down so the doctor can see inside. Some dye can also be injected from the endoscope into the bile and pancreatic ducts (a 'retrograde' injection). This is done via a plastic tube in a side channel of the endoscope. X-ray pictures are then taken which can show up the dye. This can outline a tumour that is causing a narrowing of these ducts. Certain treatments can be also be done via the endoscope. For example, a stent can put into a narrowed duct to relieve a blockage. To confirm the diagnosis A biopsy of a suspected tumour can confirm the diagnosis. A biopsy is when a small sample of tissue is removed from a part of the body. The sample is then examined under the microscope to look for abnormal cells. A biopsy can be taken during an ERCP. Sometimes a biopsy is taken by using a long fine needle which is passed through the wall of the abdomen, and guided to a suspected tumour by using an ultrasound scanner or other type of scan. Sometimes a biopsy is taken during a small operation to look into the abdomen (laparoscopy). However, if surgery is being considered to remove a suspected pancreatic cancer, a biopsy may not be done. This is because there is a risk that taking a biopsy can cause some cancer cells to spread. Information from other tests or scans may be sufficient for a doctor to be confident that the cause of symptoms is a cancer of the pancreas. Assessing the extent and spread The above tests may be sufficient to assess the extent of the cancer. In some cases, further tests may be needed to assess if the cancer has spread. For example, a CT scan, MRI scan, or other tests. This assessment is called 'staging' of the cancer. The aim of staging is to find out: How much the cancer in the pancreas has grown, and whether it has grown to the edge, or through the outer part of the pancreas. Whether the cancer has spread to local lymph nodes. Whether the cancer has spread to other areas of the body (metastasised). By finding out the stage of the cancer it helps doctors to advise on the best treatment options. It also gives a reasonable indication of outlook (prognosis).

3 Treatment The specialists treating you will first find out what stage the cancer is at. This means how advanced the cancer is, how fast it is growing, and if it has spread to your lymph nodes, or other organs such as your stomach. This will help them decide on the best course of treatment for you. Cancer of the pancreas can be very difficult to treat and in many cases, the cancer is found to have spread to other parts of the body. If your cancer cannot be cured, it may be possible to slow its growth, however the treatment you will receive will mainly be to reduce any pain you are in and make you as comfortable as possible (palliative care). If it is caught early, you may have surgery to remove all or part of the pancreas. You may have to have part of your stomach, gall bladder and duodenum (the first bit of your small intestine) removed too. This is called a pancreatoduodenectomy or Whipple s procedure; it is a major operation and only people who are otherwise fit and healthy can have it. Only 10% of people have an operation to try to cure cancer of the pancreas. The other 90% of people may have other health problems that prevent them having an operation, or the cancer may be so advanced that an operation is not possible. If your bile ducts are blocked you may have an operation to unblock them. This is called a cholecystoenterostomy. Other procedures to unblock the bile ducts are called ERCP and PTC they involve widening the bile duct and inserting a tube (stent) to drain the blocked fluids. Some people have a by-pass operation to treat some of the symptoms of cancer of the pancreas. This involves joining two organs together and bypassing another and can relieve the symptoms of jaundice or indigestion. After surgery you may have chemotherapy or radiotherapy to try to stop the cancer coming back. This may or may not be successful. These treatments have various side effects that your doctor will discuss with you. Source: How your diet can be affected Having cancer of the pancreas will affect your eating and drinking habits, whatever your stage or treatment. The pancreas is not only close to the stomach and bowel, it produces both insulin and enzymes which help to digest food. After surgery, you may have digestive problems, such as diarrhoea. If you've had all or part of your pancreas removed, you may need to take insulin or tablets to regulate your blood sugar. You may also need to take enzyme supplements when you eat to help your digestion. It can take time to get the balance of these drugs right. Be patient, and make a note of any digestive symptoms you have which might help your doctor to get things right more quickly. Blood sugar If you are on insulin or tablets to regulate your blood sugar, your doctor will ask you to check your urine for sugar. Too much sugar in the urine indicates that the sugar balance of your body is not yet right. If you are on insulin, you will probably also have to test your blood sugar levels. You will have to prick your finger and squeeze a drop of blood onto a test strip. The colour of the test strip will show approximately how much sugar is in your blood. You will then know how much insulin you should take. It takes time to get used to doing these tests. But you will be shown how to do it before you leave hospital. You may also have a nurse to visit you at home to help you and answer your questions. What diet should I eat? People with pancreatic disease often find it hard to digest fat. You should see a dietician before you leave hospital. Your dietician will give you a diet plan to suit you. Generally the diet is based on keeping fat intake low and carbohydrate intake high. This is a balancing act, however. Fat contains more calories than carbohydrates or protein. So if you are trying to build yourself up it is better to eat some foods that are high in fat. If you are recovering from major surgery, you will also need plenty of protein to help your body repair itself. If you are taking enzymes to help you digest your food, you may need to adjust the amount you take a few times before you get the level right. And you may need to vary it depending on what you have eaten. Again, your dietician should be able to help you with this. Snacks and small meals You may find it easier to have lots of small meals through the day, rather than sticking to the traditional three meals a day. It is a good idea to have plenty of nutritious snacks to hand that you can have whenever you feel like eating. If you can manage it, it is best to choose full fat versions of yoghurts and puddings, so that you get the most calories. Source:

4 How your diet can be affected continued... Snacks and small meals continued You could try: Yoghurts or fromage frais Other soft puddings such as trifle or chocolate mousse Dried fruit Stewed or fresh fruit (bananas are high in calories) Crisps Cheese Instant soups (make up with milk to boost calories) Baby food Cereal Milky drinks Chocolate Some of these ideas may not suit your digestion, particularly if you are on a low fat diet. But they are worth a try. If in doubt, check with your dietician. Try to think of quick ways of having the things you like to eat. If possible, get someone to prepare your favourite foods in advance and freeze in small portions. A microwave makes defrosting and heating easier and quicker. Diarrhoea If you are having problems with diarrhoea after pancreatic surgery, it is most probably related to difficulty digesting fat. Even so, avoid very high fibre foods (such as cereal and dried fruit) for the time being as these may make things worse. Tell your doctor or nurse. You may need some medication to control your symptoms. It is worth asking to see a dietician to plan a more suitable diet. Diet supplements If you are finding it hard to eat, there are plenty of diet supplements available on prescription. Some are powders you sprinkle on your food and some are drinks that are complete meals in themselves. Sipping a supplement between meals throughout the day can really boost your calorie intake. Again, ask your doctor or dietician. Source: Recovery Cancer of the pancreas is often found when it is very advanced and is very hard to treat. The majority of people do not have an operation for cancer of the pancreas and even those people who do have an operation may find their cancer is not completely cured. After an operation to remove part of your pancreas, your blood sugar (glucose levels) will need to be monitored carefully. This is because they are controlled by insulin, and your pancreas produces insulin. If your entire pancreas is removed, you won t be able to make insulin. This means you will have diabetes and will need to have insulin every day. Your doctor will talk to you about how this will affect you on a day-to-day basis. If you have had part of your stomach or other organs removed, this will affect your digestive system. Your doctor will talk to you about how this will affect you on a day-to-day basis. Source: What is the prognosis (outlook)? If a cancer of the pancreas is diagnosed and treated at an early stage then there is a modest chance of a cure with surgery. As a rule, the smaller the tumour, and the earlier the tumour is diagnosed, the better the outlook. Some tumours which develop in the head of the pancreas are diagnosed very early as they block the bile duct and cause jaundice fairly early on. This obvious symptom is then investigated and surgery to remove a small tumour may be curative. However, most cancers of the pancreas are advanced before they cause symptoms and are diagnosed. A cure is unlikely in most cases. However, treatment may slow down the progression of the cancer.

5 * Please note the following information is for Wales only * Summary The average number of registrations per annum for pancreatic cancer for the period is 195 for males and 214 for females. The rank for this cancer for males and females is 12 th and 10 th respectively. Males Females Average registrations per annum ( ) Relative Frequency 2.5% 2.8% Rank 12th 10th Mean age at diagnosis (years) Cumulative Rate (0-64 years) 0.3% 0.2% Cumulative Rate (0-74 years) 0.8% 0.6% Percentage Annual Change in EASR (incidence) -0.6% 0.4% Percentage Annual Change in EASR (mortality) -0.2% 0.3% Percentage Death Certificate Only 9.8% 11.2% Average deaths per annum ( ) Mortality:Incidence Ratio ( ) 88.0% 89.3% * Significant at 5% level ** Significant at 1% level Number of incident cases and age-specific rates, Number of cases pecific rate per 100,000 population Age S Under Age Group 0 Male Cases Female Cases Male ASR Female ASR Prevalence Statistics (at 31st December 2006) in Wales Males Number Rate per 100,000 % prev in pop % in each time interval Up to 1 year >1 to 5 years >5 to 10 years >10 to 20 years Total up to 20 years Females Number Rate per 100,000 % prev in pop % in each time interval Up to 1 year >1 to 5 years >5 to 10 years >10 to 20 years Total up to 20 years

6 Trends in Incidence Males Total Crude Rate EASR WASR Females Total Crude Rate EASR WASR