• Reference Number: HEY-148/2018
• Departments: Upper GI
• Last Updated: 12 July 2018

Introduction

This leaflet has been produced to give you general information about your condition.  Most of your questions should have been answered by this leaflet.  It is not intended to replace the discussion between you and your doctor, but may act as a starting point for discussion.   If after reading it you have any concerns or require further explanation, please discuss this with a member of the healthcare team.

Suspected cancer of the bile duct (Cholangiocarcinoma)

You have been told by your doctor that he suspects you may have bile duct cancer.  This information will help you understand more about this condition and what will happen next.

The bile ducts are the tubes connecting the liver and gall bladder to the duodenum (small bowel). Bile is a fluid made by the liver and stored in the gall bladder.  Its main function is to break down fats during their digestion in the duodenum. In people who have had their gall bladder removed, bile flows directly into the duodenum. The bile ducts and gall bladder are known as the biliary system. (See fig A).

Fig A

If the cancer starts in the part of the bile ducts within the liver, it is known as liver cancer (intra-hepatic cancer). If it starts within the bile ducts outside the liver, it is known as bile duct cancer (extra hepatic cancer, also known as cholangiocarcinoma).

If the bile duct is blocked, this stops the flow of bile into the duodenum, which can lead 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 stools – caused by lack of bile colouring the stools brown.
• Itching – caused by bile in the blood stream.

Pain is often not a feature at first; therefore a “painless jaundice” that becomes worse is often the first sign of a disorder with the bile ducts. Your doctor may decide he wants to drain your jaundice before further tests / investigations.  This is done by passing a fine tube through the skin on the right hand side near the ribs. This tube is left in the main bile duct in the liver allowing the bile to drain into a drainage bag. This procedure is called a PTC and drain (percutaneous transhepatic cholangiogram) and is always performed within the x-ray department.

What happens next?

There are different approaches that can be used to treat suspected bile duct cancer, including surgery and chemotherapy. Deciding the most appropriate treatment for you is determined by:

1. the extent of the disease
2. your physical fitness

To assess this you will need to have some further tests / investigations, to stage your disease.  You will have been introduced to a clinical nurse specialist. They will coordinate your investigations, act as your key worker and be a point of contact for you and your family.

Staging Investigations

You may have already had the following:

Ultrasound Scan – This uses sound waves to look at the internal organs, such as the pancreas, bile ducts and the liver. The sound waves are then converted into a picture on a computer.

CT Scan (Computerised tomography) – This is a type of X-ray which produces detailed pictures of the inside of your body. If you have not already had one, you will be given more information about this prior to the procedure. From these your consultant can decide if this is an early or advanced cancer.

EUS (Endoscopic Ultrasound) – This involves a flexible tube being passed from the back of the mouth into the stomach. There is an ultrasound probe on the end of this tube which uses sound waves to take an internal ultrasound scan of the bile ducts and surrounding organs. It is possible to take a biopsy at the same time; however, if surgery is looking possible then a biopsy may not be taken as it will be taken during the operation.

You may need one or more of the following:

ERCP (Endoscopic retrograde cholangio-pancreatography) – This involves a flexible tube being passed from the back of the mouth into the stomach. This enables the doctor to take and x-ray picture of the pancreatic duct and bile duct. The bile duct can be unblocked during this procedure if necessary.

PET Scan – (Positron emission tomography) This is similar to a CT scan but gives us more detailed information about whether your cancer has spread anywhere else in your body. For more information see http://www.alliancemedical.co.uk/sites/default/files/upload/documents/PET-CT-Patient-Guide.pdf

MRI Scan – (Magnetic resonance imaging) This is another detailed scan which looks at different parts of the body using strong magnetic fields.

You may feel concerned that waiting for these tests may cause a delay in you starting treatment. Please be reassured that this is necessary to ensure you receive the treatment most appropriate for you.

During this time you should keep as fit and well as possible. If you smoke, it is vital that you try to stop immediately. Stopping smoking at this stage can have a positive impact for any future treatment.

If you are having problems eating, you must inform you clinical nurse specialist, who will advise you on how to maintain your nutrition to prevent further weight loss, and refer you to a dietician if appropriate.

The multidisciplinary team meeting

After we have received the results of all of your investigations, we will discuss them at the multidisciplinary team meeting (MDT). This consists of a specialist group of doctors and nurses who have a particular interest and expertise in your suspected cancer. They can recommend which treatment you should receive, knowing the nature of the tumour, and how to achieve the best results for you. This decision will be communicated to you and all the treatment options available will be discussed with you, so that you can make an informed decision about your treatment.

Follow up outpatient appointment

Following the MDT meeting, you will either receive an appointment to see your surgeon or the oncologist to discuss treatment options. Please use this opportunity to ask questions and raise any concerns, so that you and your family fully understand the proposed treatment. Please note you can also contact your clinical nurse specialist at any point, if you require further information, advice or support.

Should you require further advice on the issues contained in this leaflet, please do not hesitate to contact the Upper GI Clinical Nurse Specialists on Tel: (01482) 624349 or (01482) 624350

General Advice and Consent

Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.

Consent to treatment

Before any doctor, nurse or therapist examines or treats you, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to you. You should always ask them more questions if you do not understand or if you want more information.

The information you receive should be about your condition, the alternatives available to you, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:

• you must be able to give your consent
• you must be given enough information to enable you to make a decision
• you must be acting under your own free will and not under the strong influence of another person

During the course of your procedure the radiology staff will ask questions that may appear unnecessary to you and these may be repeated at certain intervals. Please be assured that these questions are necessary to ensure that all aspects of your care during the procedure are maintained to a high standard.

Information about you

We collect and use your information to provide you with care and treatment. As part of your care, information about you will be shared between members of a healthcare team, some of whom you may not meet. Your information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.

We may pass on relevant information to other health organisations that provide you with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your doctor, or the person caring for you.

Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about you. For further information visit the following page: Confidential Information about You.

If you or your carer needs information about your health and wellbeing and about your care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.