Cancer of the Oesophagus (gullet) What happens next?

  • Reference Number: HEY-010/2018
  • Departments: Upper GI

Introduction

This leaflet has been produced to give you general information about your condition.  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 healthcare team.

What is Cancer of the Oesophagus?

You have been given a diagnosis of cancer of the oesophagus (gullet) by your doctor. This information will help you understand more about this condition and what will happen next.

The oesophagus, also known as the gullet, is a long, muscular tube which connects the throat to the stomach. As cancer grows in the oesophagus, it often causes narrowing of the tube, which can make it difficult and uncomfortable to swallow food and drink.

What Happens Next?

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

  • the extent of the disease
  • your physical fitness

To assess this you will need to have some further investigations to stage your disease.

You will have been introduced to a Clinical Nurse Specialist who 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:

Endoscopy – The main procedure for diagnosing cancer of the oesophagus is an endoscopy. This procedure involves a flexible telescope being passed from the back of the mouth, into the oesophagus. Abnormal areas of the lining of the oesophagus can be seen and a sample of tissue (biopsy) can be taken.

CT Scan – (Computerised tomography) This is a type of scan 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.

You may need one or more of the following:

Endoscopic Ultrasound (EUS) – 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 pancreas 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.

PET Scan – (Positron emission tomography) This is similar to a CT scan but gives us more detailed information about whether your cancer may have 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.

Laparoscopy – This is a look into your abdominal cavity using key-hole surgery. Your surgeon may decide to do this procedure to further assess your tumour.

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

If you are having problems eating, you must inform your Clinical Nurse Specialist as soon as possible. They will advise you on how to maintain your nutrition, prevent further weight loss and refer you to a dietician if appropriate.

Chemotherapy – Your surgeon may have mentioned having chemotherapy prior to surgery. This is known as ‘neoadjuvant chemotherapy’ and its aim is to reduce the size of the tumour before surgery. You will receive an outpatient appointment to see an oncologist to discuss this further.

During this time you should keep as fit and well as possible. If you smoke, it is vital that you try to stop; 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 as soon as possible who will advise you on how to maintain your nutrition, prevent further weight loss and refer you to a dietician if appropriate.

The Multidisciplinary 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 about your treatment.

Follow up Outpatient Appointment

Following the MDT meeting, you will receive an appointment to see someone from the team to discuss treatment options. Please use this opportunity to ask questions and raise any concerns, so that you and your family understand fully 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 telephone number (01482) 624349 or 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

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.