Patient Information Leaflet written by the Nurse Specialists, South East Wales Cancer Network - Upper Gastrointestinal Advisory Group.

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1 These leaflets are reviewed on a regular basis. If you feel we have left out some information that would be useful, please contact your Cancer Nurse Specialist. Patient Information Leaflet written by the Nurse Specialists, South East Wales Cancer Network - Upper Gastrointestinal Advisory Group. Booklet1+2 combined / Version 2 First printed December 2004, reprinted December 2006 For review in June 2012

2 Your Personal Record Booklet Name: Oesophago-gastric Cancer Specialist Team

3 Introduction This personal record booklet has been put together to enable you to keep a record of any tests/investigations you have and for you to record your treatment plan. The booklet will help you and your family remember the order of events, which can be difficult at such a stressful time. It will also be helpful for the large team of people looking after you, including your GP and any community nurses. At the end of the booklet there is an area to write in the contact numbers for the team involved in your care. There is also space for you to write in any other frequently used telephone numbers. Some contact numbers and web site addresses have been included, which you or your family may find useful. Test / Investigation performed Chest x-ray ECG Spirometry Lung function test Heart scan (ECHO) CT scan Endoscopic Ultrasound scan (EUS) Laparoscopy PET scan Date Where (which hospital) Current Medication

4 This diagram shows the normal position of your oesophagus (food pipe) and stomach. It can be used to show you where your cancer is. Oesophagus (gullet) Stomach Diagnosis: Your treatment plan:

5 A Guide to Your Specialist Team Below is a list of some of the members of the multidisciplinary team (MDT). You may meet some of these members at the hospital whilst you are having your tests/ treatment, or at some point throughout your treatment pathway. The MDT meets every week to discuss all newly diagnosed patients and the best treatment plan available for each individual. Consultant Upper GI (Gastrointestinal) Surgeon The Surgeon may have performed your first endoscopy (camera test) where biopsies (small tissue samples) were taken, which led to your cancer being diagnosed. They will arrange for you to have several tests to see if surgery is a treatment option for you. The surgery will then be discussed with you and your family in detail, and you will be given a leaflet explaining the surgery before a date for surgery is arranged. Consultant Clinical Oncologist The Oncologist is based at Velindre Hospital, but may hold clinics at your local hospital. They will become involved in your care if you require any treatments such as chemotherapy and/or radiotherapy. There treatments are explained in a separate leaflet. Consultant Gastroenterologist The Gastroenterologist may have performed your first endoscopy (camera test) where biopsies (small tissue samples) were taken, which led to your cancer being diagnosed. They may arrange for you to have further tests or for you to be referred on to the Surgeon. The Gastroenterologist may become involved in your care again should you require the placement of a stent (a flexible metal tube used to open up your oesophagus (food pipe) to enable you to eat) or a feeding tube into your stomach. Consultant Radiologist The Radiologist is the doctor who usually performs the CT scan (Computerised Tomography Scan) and EUS (Endoscopic Ultrasound Scan) test if you should need it. These tests are explained in more detail in the leaflet What happens next. Some Radiologists are also involved in the placement of stents.

6 Consultant Pathologist The Pathologist will examine the biopsies or specimen to give a diagnosis. Cancer Nurse Specialist The Cancer Nurse Specialist is available to provide information and support to both you and your family. They will follow you throughout your treatment path and work closely with the Consultant Surgeon and the Consultant Oncologist. The Cancer Nurse Specialist will assess your needs and make the necessary referrals on to other health care professionals; such as the dietitan, community nurses, social worker, etc. Dietitian If you have any problems with swallowing and weight loss, you will be introduced to a dietitian. The dietitian will be able to assess and advise you on your food intake. They may recommend supplementary drinks, or other ways to improve your nutritional intake. Your weight will be monitored throughout your treatment path. Specialist Palliative Care Team If you have any symptoms from your disease (e.g. pain or sickness) you may meet one of the doctors or nurses from the Specialist Palliative Care Team, either within the hospital or in the community. They may also become involved in your care to provide you (and/or your family) with additional emotional support at home. Surgical Nurse Practitioner You will meet the Surgical Nurse Practitioner if you come into the hospital for test/investigations, or your operation. They work within the surgical team, and may carry out some of the tests you need. The Nurse Practitioner will make sure any tests/investigations are done as quickly as possible. This list is not complete. There are other members of the health care team who may become involved in your care if there is a need.

7 Useful Numbers Cancer BACUP Telephone Cancerlink Telephone: or (freephone support link) Oesophageal Patients Association Telephone: Tenovus Cancer Information Centre Freephone Some booklets produced by BACUP:- Understanding cancer of the stomach (gastric) Understanding cancer of the gullet (oesophageal) Chemotherapy Radiotherapy Diet and the cancer patient Complementary therapies and cancer Travel and cancer The above booklets (and many more) are available free of charge from BACUP or via the Tenovus Cancer Information Centre. Information regarding chemotherapy and radiotherapy will also be available from your cancer hospital. Your Cancer Nurse Specialist may be able to give you these leaflets, so please ask.

8 Useful Web site addresses: Contact details for your team: Contact numbers Consultant Cancer Nurse Specialist Dietitian Referrals to other health care professional: Other useful contact numbers: