• Reference Number: HEY-116/2018
• Departments: Upper GI
• Last Updated: 12 July 2018

Introduction

This leaflet has been produced to give you general information about your treatment options.  Most of your questions should be 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 health care team.

Diagnosis

Your consultant has determined that the cancer within your bile ducts cannot be removed. This may be for one of the following reasons:

• Risk – Such major surgery may not be suitable for you.
• Spread – The tumour may have already spread elsewhere within your body
• Size – The tumour is too large to be removed

This does not mean that your quality of life cannot be improved and that your symptoms cannot be helped.

The multi-disciplinary team meeting (MDT)

The results of all of your investigations will be discussed at the Multi-disciplinary Team Meeting (MDT). This consists of a specialist group of doctors and nurses and other healthcare professionals involved in your care that have expertise in your 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 treatment options available will be discussed with you so that you can make an informed decision with the guidance and support of the whole team.

What are the treatment options?

The options are as follows:

Watch and wait

If your cancer is not causing symptoms at the present time, and you have a good quality of life, it may be suggested that we ‘watch and wait’. This involves no further treatment until you have some symptoms. This is to avoid the possibility of you experiencing unnecessary side effects from treatment and may affect your quality of life.

You will have regular check ups with your consultant, where treatment options can be discussed as symptoms arise.

Stents

If the cancer is blocking the bile duct, then this stops the flow of bile into the duodenum and you may become jaundiced (yellow). In order to drain this, a stent can sometimes be inserted into the bile duct. A stent is a small rigid tube made of plastic or metal, which aims to keep a duct or channel open. It is either inserted by instruments attached to an endoscope called an ERCP (Endoscopic retrograde cholangio-pancreatography), or inserted into the bile duct through the liver, called a PTC (percutaneous transhepatic cholangiogram).

If you require a stent, further information will be given to you by staff from the department.

Chemotherapy

If you are fit enough, your consultant may suggest a referral to an Oncologist (cancer specialist), to discuss chemotherapy. This treatment involves the use of drugs to attack the cancer cells. The aim of chemotherapy is to shrink the cancer, improve your symptoms and hopefully prolong your life.

The possible side effects of chemotherapy will be discussed with you at your oncology appointment.  The treatment itself can take many weeks and afterwards you will have another scan to see whether your tumour has responded to the treatment.  If the tumour has spread to other organs within your body, it may be suggested that an alternative chemotherapy is given which has fewer side effects to stabilise your tumour and improve your symptoms.

Radiotherapy

Depending on the type of tumour, radiotherapy may be suggested.  This involves the use of X-rays directed onto the tumour from outside the body. The aim of radiotherapy is to try and stop it from growing, hopefully shrink it and improve your symptoms.  The side effects of the radiotherapy will be discussed with you at your oncology appointment. The treatment itself can range from a single dose of X-ray treatment to 5 weeks of treatment.

Palliative care

Palliative care refers to treatment aimed at improving the quality of life for patients and their families who are faced with a life threatening illness.

When we consider palliative treatment of a cancer, we take into account that some tumours may need several different types of treatment to control the symptoms. It could consist of one or more of the above treatment options.

We also need to try and ensure that the treatment being considered does not increase the symptoms you are already experiencing. You will be involved at all stages of the treatment plan and we can change treatments at any time, depending on your response.

If your symptoms are difficult to manage, you may be referred to the Specialist Palliative Care Team, either within the hospital or in the community.

Useful Contacts

• Upper Gastrointestinal Clinical Nurse Specialists – Provides information and support to patients and families about their disease.  Call (01482) 624349 or (01482) 624350

• Palliative Care Out of Hours Telephone Advice Line – Provides specialist advice and information with regards to pain and symptom control between the hours of 17.00pm and 08.00am.  Call (01482) 875875 and ask for Bleep 500

• Macmillan Cancer Support – Provides practical information and emotional support for people living with cancer.  Call 0808 808 0000 or go online at www.macmillan.org.uk

• Pancreatic Cancer UK – A national charity which concentrates solely on Pancreatic Cancer. Providing fundraising, research and support to patients and their families. Go online at www.pancreaticcancer.org.uk

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

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.