Work

Cancer can affect your work, and you may need some time off due to treatments or symptoms (such as fatigue). Talk to your manager or HR (human resources) officer as early as possible. If you are having surgery, you will need to explain that you will need time off to recover and that this may be a few months.

In the UK, you are covered by legalisation that protects your rights at work. If you live in England, Scotland or Wales, the Equality Act 2010, and for Northern Ireland, the Disability Discrimination Act 1995 (DDA) (as amended) protects you, even if you are self-employed or a carer.

It may be helpful to discuss with your doctor whether your treatments will affect your ability to work.

Finances and financial support

Having cancer may have an impact on your financial situation, especially if you are unable to work. It could be helpful to speak to a hospital or community social worker. They can assess your level of need, the needs of others in your household caring for you and your financial situation to see what help you are entitled to.

Citizens Advice can advise you about your financial situation, advise on what benefits may be available and suggest the next steps.

Macmillan Cancer Support also provide financial advice. You can call them on: 0808 808 00 00 or find more information here.

Maintaining a healthy lifestyle

The fitter and healthier you are, the more likely it is that you will be able to cope with and recover from the treatments you are given.

There are things you can do to help:

• - If you smoke, consider quitting.
• - Keep active. Light exercise may help reduce fatigue and increase your appetite. It is also good for your mood. Taking short walks can be helpful.
• - A major problem faced by patients with pancreatic cancer can be weight loss, or inability to maintain weight. See our recipe book for meal ideas that help you maintain weight.

You may be asked to attend a clinic for surgery pre-assessment tests 1 to 2 weeks before your operation.

What is a pre-assessment?

A pre-assessment is an outpatient investigation prior to undergoing a clinical procedure. Tests will be done to ensure the patient has no conditions which might alter the risk benefit balance of the procedure.

Why does this happen prior to admission?

This is to ensure the results of any tests are ready in time for admission. The admission often occurs on the day of the procedure, which shortens the length of any admission and reduces pressure on bed availability.

Why does this sometimes happen before a decision on treatment has been made?

The assessment is aimed at trying to identify additional health issues that would change the level of risk of treatments. This could result in a change in the treatment decision by the Multi-Disciplinary Team (MDT). If identified, some conditions can be treated/controlled, reducing the risk of any procedure.

What does it involve?

This depends on the proposed intervention but could include the following:

• - Nurse-led health questionnaire
• - Drug history
• - Past medical history
• - Simple blood tests (renal function, glucose tolerance, liver function, clotting etc)
• - Blood pressure
• - An electrocardiogram (ECG) – This is a simple test that can be used to check your heart’s rhythm and electrical activity. Sensors attached to the skin are used to detect the electrical signals produced by your heart each time it beats.
• - Echocardiography – This is a scan used to look at the heart and nearby blood vessels. It’s a type of ultrasound scan, which means a small probe is used to send out high-frequency sound waves that create echoes when they bounce off different parts of the body.
• - Exercise tolerance tests – The test involves walking on a treadmill and gradually increasing your speed until you experience symptoms such as tiredness, shortness of breath or chest discomfort. When you experience these symptoms, you should tell the physiologist doing the test. The test takes about 30 minutes in total.
• - Pulmonary function tests – These are non-invasive tests which measure how well the lungs are working.

In the first couple of days, you will be wearing a hospital gown. But after this, you will need night clothes, then loose-fitting normal clothes once you are able to move independently.

It is recommended that you only take the essentials when you are first admitted, then get a friend or relative to bring in a second ‘top-up’ bag after a few days.

Some suggestions for what to pack

Initial bag for first few days

• - Basic wash bag to include a toothbrush, toothpaste, hairbrush/comb, flannel, soap, shaver/razor, and lip salve (lips are often dry after surgery).
• - Loose-fitting slippers (your feet can swell after an operation) with grips on the bottom or thick socks with grips on the bottom.
• - Reading glasses.
• - Mobile phone and charger.
• - Books/magazines/pens.
• - Medication that you normally take.
• - Antibacterial hand gel or wipes.
• - Sanitary towels or tampons (if appropriate).
  
  

Second top-up bag

• - Extended wash bag to include shampoo, shower gel, deodorant, and make-up (if appropriate).
• - Night clothes, dressing gown, loose-fitting day clothes.
• - Clean underwear.
• - Small hand towel.
• - Fruit squashes and small snacks such as biscuits, chocolate, sweets, non-refrigerated desserts (jellies, rice puddings).
• - Small amount of money for newspapers/snacks.
• - Address book and/or important phone numbers.

Your admission letter from the hospital will tell you the date and time of your operation and what time you need to arrive.

You will usually see one of your medical team and the details of the procedure will be explained to you. You will then be asked to sign a consent form (unless you already did this at pre-assessment clinic) giving your permission for surgery to go ahead. This form shows the doctors that you know what the procedure is for, and that you understand the risks involved.

If you are having a general anaesthetic, you will have a visit from the anaesthetist who will talk about the anaesthetic they will give you to put you to sleep throughout the whole operation. It will be given to you via an injection or gas, which you breathe through a mask.

You will normally be asked to remove dentures, piercings, jewellery, or nail varnish before the operation.

You must tell your doctor or nurse if you are taking any medication to thin the blood or prevent clotting as these need to be stopped before surgery.

The core medical team

Surgeon: Performs your operation. Beforehand they will explain your operation and tell you about the potential risks and complications.

Cancer Nurse Specialist: A specialist nurse in this type of cancer and its treatments. They are available to offer advice and information about your surgery and are the main point of contact should you have any concerns.

Anaesthetist: Responsible for your anaesthetic which puts you to sleep for your operation. They also discuss the types of pain control available.

Physiotherapist: Helps you to get fitter and stronger. They will teach you deep breathing and coughing exercises which are important to help your lungs re-expend and help prevent chest infections. They will also encourage you to be mobile following your operation and to help you become as fit as possible before leaving the hospital.

Dietitian: Helps you manage your diet. You may see a dietitian before your surgery if you have been struggling with weight loss. Often patients will see a dietitian to manage eating following the operation.

Your doctors will discuss the risks of you having surgery when you give your consent to go ahead with the operation. Surgery is complex and always comes with risks. Approximately one in ten people will have serious complications following pancreatic cancer surgery. There is always a small risk of death, this should be discussed with you and any questions you have answered.

Please note: Not all patients will have the following complications

Anastomotic leak

By far the most important complication following a Whipple’s procedure or other pancreatic surgery, is when one of the anastomoses (the join between either the bowel and the bile duct or pancreas) does not heal properly, allowing the contents to leak out. 

If a leak does occur, then you may need to stay in hospital longer than planned. These leaks usually dry up. Very rarely drains may need to be placed in the tummy and in exceptional circumstances, a second operation may be needed. You might have an x-ray to ensure the drain is put in the right place. 

Sometimes leaks heal on their own, but this takes time. Leaks from the pancreas can be serious as the pancreas releases digestive enzymes which can damage nearby tissue.

Delayed emptying of the stomach

Sometimes your stomach may take longer to adapt to the changes after surgery and your food may not be able to pass through efficiently. You may need to stick to a liquid only diet for a while. Alternatively, you may need to be fed through a nasogastric tube (a feeding tube in the nose) until this resolves.

Bleeding

Any operation carries a risk of bleeding after surgery. A radiological procedure to block the bleeding vessel without operating (embolisation) may be needed. In exceptional circumstances an operation may be needed to control the bleeding.

Chest infections

It is possible you could develop a chest infection following an operation, especially if you are a smoker. To minimise your risk, a physiotherapist will visit you after your operation to help you to cough and breathe properly.

Chyle leak

Some patients may leak a milky liquid called chyle into their abdominal drain after surgery. Chyle is a bodily fluid that can build up in the tummy following injury or surgery. This is treated by reducing the amount of food you eat for a period of time. Your dietitian or surgeon may feel that you should have artificial feeding during this period, such as a feeding tube, to support your nutrition intake.

Problems with food absorption

When you have had part of your pancreas removed, you may notice your stools have become pale, loose and greasy. You can correct this by taking pancreatic enzyme capsules which, when taken with food, will help you digest it. Your medical team will tell you how and when to take these.