Here are some questions you might like to discuss with your medical team:
It is a little organ about 15cm by about 5 cm (6x2 inches) lying behind your stomach.
The pancreas has two jobs:
(1) To produce Insulin and some other hormones which help to control the level of glucose (sugar) in the blood stream.
(2) It also produces enzymes which help to break down food so that it can be digested.
Normally the cells of the body grow, divide and then breakdown to be replaced by new cells in a carefully controlled way so that our bodies continue to function efficiently. When cells become malignant they grow and divide in a completely uncontrolled haphazard way that produces the mass or lump of the tumour. Tumour cells can also produce substances which are released into the blood stream and can have more general effects on the body such as weight loss.
The mass of tumour cells can grow into or squash and damage other tissues close by.
Malignant cells can also sometimes break off from the primary tumour and travel in the blood stream or lymph vessels to produce further tumours or secondaries in other sites.
Nearly 9,000 people die from pancreatic cancer in the UK each year, of these over 500 are in Wales. This means that for every 100,000 people in the population about 12-14 of them will suffer from pancreatic cancer.
Very little is known about what causes pancreatic cancer.
Smoking is thought to increase the risk of pancreatic cancer.
Patients who have chronic pancreatitis have an increased risk of developing cancer in the pancreas.Chronic pancreatitis is a condition in which chronic inflammation damages the pancreas, it is often caused by excessive consumption of alcohol. Patients suffer from intermittent episodes of severe abdominal pain
Very rarely pancreatic cancer can run in families due to a gene that is present in the family.
The symptoms of pancreatic cancer are very non-specific:
Upper abdominal pain, sometimes going through to the back. it is often worse after eating or when lying down.
Unexplained weight loss, this might be in-spite of continuing to eat well or be associated with a reduced appetite or diarrhoea.
Jaundice, this is often first noticed as a yellowing of the whites of the eyes before the skin becomes yellow. The jaundice is often associated with itching of the skin.
The bile duct passes through the pancreas and can be involved in a growth in the pancreas blocking the flow of bile and jaundice results.
A small number of pancreatic cancer patients will be cured, which usually means there is no sign of the disease after 5 years.
It is important to know that there are some other rare types of tumour that can occur in the pancreas which are more curable - these are called neuro-endocrine tumours.
Blood tests will give some general information about any jaundice and your general health. There is no single reliable one-off test for pancreatic cancer.
X-rays like a CT scan will often show a mass in the pancreas.
Sometimes special ultrasound scans will be done as well.
Your medical team will explain to you all the details of whatever tests you need.
Don’t be afraid to ask about anything that you don’t understand, there are often leaflets prepared by your team that you can take and read in your own time.
Treatment is often by an operation to remove all or part of the pancreas. The X-rays will often show if this is the best treatment for you.
A course of chemotherapy might be used as well as or instead of an operation.
Usually all the doctors and nurses who look after pancreatic cancer patients meet together to consider all the details of each case and decide what would be the best treatment.
Your doctor will then explain to you the treatment they recommend and why that course is best for you. If you would prefer a different course of treatment then you should discuss this with your doctor and come up with a plan that you all agree on.
Yes, these are big operations and are only carried out by specially trained and experienced surgeons together with their team of assistants and nurses.
All operations carry a risk of complications and very big operations like pancreatectomy naturally carry more risks.
Bleeding and infection are two complications that can occur after any operation, but the main risk in pancreatectomy is a leak from one of the suture lines where the bowel has been sewn back together. Drainage tubes are often placed during your operation to carry away any fluid that might leak out.
If you look at a large series of patients having these operations, about a third will have a complication of some sort.
It is also true that if you look at these large series there will be a very small percentage of patients that do not survive the operation in spite of every care and precaution being taken.
Your surgeon will be able to tell you his or her own personal complication rate.
After an operation the patient will be monitored very carefully to see how well their digestive system is working.
If there are not enough enzymes to digest the food diarrhoea will result, which will seem quite greasy. Motions can be tested to see if there are enough enzymes.
If extra enzymes are needed these are easily provided by taking some capsules with each meal, these will be prescribed with an explanation of how to adjust the dose to the patient’s exact requirements.
As we get older our pancreas can become less efficient, you may know someone who has become diabetic in later life. Removing part of your pancreas may make you diabetic immediately or it might appear later. If you have a total pancreatectomy you will be diabetic straight away.
Your blood sugar will be checked after your operation and if you need any diabetic treatment this will be provided and it will all be explained to you. A Diabetes Nurse Specialist will probably help in this aspect of your recovery and is a good source of advice on management of your Diabetes.
If you are diabetic you will have to watch what you eat, but your doctor and the diabetic nurse will be able to give you lots of advice about this.
You will also soon learn if any foods upset you and how much of your pancreatic enzyme capsules you need to take with each meal.
There is no hard evidence that any sort of diet can cause or prevent pancreatic cancer.
Any cancer which cannot be completely cured is unfortunately terminal meaning that it will cause the death of the patient. Pancreatic cancer can often cause death very soon after it has been diagnosed.
The Palliative Care team of doctors and nurses will work with you to make sure that any unpleasant symptoms are controlled and your quality of life is as good as possible.
Patients who have their tumour removed have an average survival of about 20 months.
About 5% of patients will be alive after 5 years.
Survival often depends on how big and how advanced the tumour is when it is diagnosed. Pancreatic cancer has often spread beyond the pancreas and is inoperable before patients realise that the tumour is there.
There is evidence that although surgeons try to remove all the cancer tissue at the operation there might be some cells left behind and it is often recommended that patients have a course of chemotherapy to “mop-up” these cells.
If it is thought that you should consider having some chemotherapy you will see a doctor specialising in this area (an oncologist) and they will be able to tell you all about it in detail so that you can decide.
How people spend their time, especially if it is limited, is a very personal decision. Patients might not have the stamina and energy they used to but if something is important to a patient and their family, doctors and nurses will be able to help arrange things such as obtaining a Home Office export license enabling you to take tablets like morphine painkillers with you should you wish to go abroad.
Obtaining travel insurance may be difficult, but speak to your doctors and nurses to see if they have any local recommendations. Some insurers ask very few questions about previous health issues.
In the case of Shan’s late husband Justin, he was fortunate to achieve travel insurance to fly to Milan to perfom with Tigertailz in a Rock Festival two months before he passed away.
Please note that the above provides very general answers to questions that patients and their relatives have often asked.
If there is anything that you want to know or that you don’t understand don’t hesitate to ask your hospital specialist or nurse, they will be able to give you accurate and detailed information about you own situation.