I have symptoms, what happens next?
If you are experiencing any symptoms, which are persistent and not normal for you, it is important that you visit your GP or call NHS 111.
If you are showing any of the symptoms of pancreatic cancer you may have multiple tests to try and find out what is happening. Your symptoms may be due to a number of reasons and most people do not have cancer. It is still important that you get your symptoms investigated. During this time, it can be stressful trying to figure out what is going on when no one seems to know what is wrong or happening to you.
Pancreatic cancer is not straight forward to diagnose and health care professionals may not always be able to be certain with you and keep you feeling up to date. Everyone’s journey to a diagnosis is different but they all have things in common, mainly waiting and worrying. These pages will explain the process of diagnosing pancreatic cancer and some of the feelings you may be experiencing.
There are different routes to diagnosis. Often people begin by seeing their GP, some people have many visits before they are diagnosed. The symptoms of pancreatic cancer can be quite vague and difficult to diagnose. If you see your GP and your symptoms are not getting any better, it is important to keep going back.
Using a symptom diary may help your GP to understand your symptoms and concerns. Some people are diagnosed with different things such as gallstones before pancreatic cancer and diagnosis can be complicated and take a long time. When your GP examines you, they may look for jaundice (yellowing of the skin), feel your tummy and send blood or urine samples. If your symptoms include abdominal (tummy) pain, weight loss and jaundice together then you should be referred to hospital as urgent. This does not mean that you definitely have pancreatic cancer, it does mean that your symptoms need investigation quickly.
Testing for pancreatic cancer
Once you have been referred to hospital, you may come into contact with a number of health care professionals who each ask for more tests, your personal history and ask you many questions. This helps to decide what tests you may need. Often, people with pancreatic cancer are diagnosed after visiting an accident and emergency department. If you have a fast onset of symptoms such as pain or nausea and vomiting you may be admitted to hospital as an emergency this way. Diagnosis in hospital is very similar, you will be seen by medics, referred to a gastroenterologist or other specialist and tests carried out to try and find out what is causing your symptoms.
Tests for pancreatic cancer include first line and second line tests. Some tests are designed to find out if you have a pancreatic tumour, others are to attempt to discover the size and stage of the tumour.
|First line investigations
||Second line investigations
Waiting for results
Waiting for test results can be a nervous time and fear of the unknown is understandable and perfectly normal. You may feel anxious and afraid, but you may also feel denial, numb or guilty that they put off going to the doctors for too long and now may be seriously ill. You may imagine the worst-case scenario and worry about how your friends and family may cope. Waiting, especially for a long time is a difficult experience and the lack of control over your life can cause serious stress and anxiety. Some people say that waiting is the hardest part, in fact research has shown that waiting for test results or a diagnosis makes people feel worse. How to cope during this time of uncertainty depends on you as a person but there are ways of dealing with things so that you are waiting well.
It may help you to remember to live in the moment and focus on what you know now and not what might happen next. Or you could try to find out as much about the possibilities as you can to feel empowered about what is happening to you. Keeping distracted can take your mind off waiting through helping others, physical exercise or hobbies you enjoy may help. When you do have appointments, it may help to bring someone else along with you. They may remember symptoms, questions and information which you have not. Finally, it is important to realise that your feelings are completely normal, you are not being silly or morbid, you are going through a difficult time and you should take time for yourself whenever you need it.
Remember, most of the time symptoms are not due to pancreatic cancer
If you do receive a pancreatic cancer diagnosis, then you will likely need to have more tests to find out as much as possible about the tumour. They will use these test results to figure out the stage of the tumour (link to webpage) and possible treatments (link to webpage). There will be a multidisciplinary team made up of doctors, nurses and other health professionals in this time who can help you emotionally as well as physically, so feel free to ask them all the questions you have. Try to keep communicating with friends and loved ones about how you, it will help you feel less alone and it is likely that they are experiencing many of the same feelings as you. Pancreatic Cancer Action publishes patient information booklets about pancreatic cancer and the treatment at different stages, this information will help you to understand your diagnosis and what happens next.