Following diagnosis of stomach (gastric) or oesophageal (gullet) cancer

Being told you have cancer is naturally a shock to you and your family. During this time, you may experience a wide range of emotions and find it difficult to remember all you are told. The following written information is provided as a guide to what may happen; however, your consultant will discuss your individual treatment plan with you.

This leaflet will provide information about investigations you may have, treatments or procedures that may be recommended and what to expect next. Contact information for individuals who may be involved in your care are also included at the end of this leaflet.

Investigations

Various investigations may be required to assess the extent (stage) of your cancer and your fitness levels to help plan the appropriate treatment for you. Details of the various investigations can be found on the following pages.

To assess the cancer

Endoscopy

A flexible tube with a camera is passed through the mouth, down the oesophagus into the stomach. Before this happens, a throat spray (local anaesthetic) is used to numb the back of the throat and sometimes sedation can also be given. Please note that you will need someone to take you home and stay with you that evening if you have sedation.

If there are any abnormal areas seen during the procedure, the doctor will take a biopsy (tissue sample). The biopsy will be sent to the laboratory for examination and the results can take 1 to 2 weeks to come through. Occasionally, the endoscopy and biopsies need to be repeated.

Computerised Tomography (CT Scan)

A detailed scan of your chest, abdomen and pelvis will be performed in our Imaging (X-ray) Department. You may be asked to drink some dye (contrast) before the procedure and also have an injection of dye while lying on the X-ray bed. The dye is used to enhance the scan images.

PET Scan (Positron emission tomography)

This is another type of scan used to assess the extent (stage) of cancer. A radioactive sugary substance is given to you via an injection. This substance is taken up by the area(s) of cancer and will highlight cancer activity on the scan images.

You will need to travel to the Cobalt imaging centre in Cheltenham to have this done. The contact details can be found at the end of this leaflet in the ‘Further information’ section.

Abdominal laparoscopy

A short keyhole operation performed in theatre under general anaesthetic (GA), while you are asleep. This involves a couple of small incisions being made in the abdomen so that a thin instrument with a camera can be passed inside the abdomen to examine the area of cancer and nearby structures.

Occasionally, further biopsies are taken during this procedure. The abdominal laparoscopy is usually done as a day case procedure but sometimes it may involve an overnight stay. You may feel sore for a couple of days following this procedure.

Endoscopic Ultrasound Scan (EUS)

This is similar to the endoscopy you have already had, however, the endoscope has an ultrasound probe attached to it. This allows an internal scan of your oesophagus to be performed, which can also assess the surrounding lymph nodes (glands).

To assess your fitness

ECHO (Echocardiogram)

This is an ultrasound scan of the heart which gives information about how well your heart is working. It will look at the structure of your heart, how the blood flows and assess the pumping chambers of the heart.

Pulmonary Function Test

A test of the lungs which gives information about how well your lungs are working. A spirometer is used to measure how much air you can breathe out in one forced breath.

Anaesthetic assessment

If an operation is thought to be suitable to remove your cancer you will have an anaesthetic assessment. This is an appointment with a nurse and an anaesthetist. They will ask you questions about your health, other medical problems, medications and fitness. They will perform blood tests and record an electrocardiogram (ECG) and look at the results of your heart and lung tests.

These results will inform them if surgery is suitable for you, or if you have any medical problems that may need to be treated before an operation.

Multidisciplinary team ( MDT )

Following your investigations, the results will be discussed at the multi-disciplinary team meeting (MDT) which takes place every Thursday. This meeting is attended by surgeons, oncologists, physicians, pathologists, radiologists, specialist nurses, dietician, trials nurse and palliative care.

The team will review your results and make a management plan on how to best treat/support your individual needs. Occasionally, further investigations will be required such as, MRI scans, Ultrasound scan (USS), Bone scan or further biopsies.

You will be updated on the outcome of this meeting either face to face in an out-patient clinic, by letter or telephone.

Treatments and procedures

The treatment/procedure recommended for you will depend on the location, size, type of cancer, whether it has spread to other parts of the body (secondary cancer/metastases) and also your general level of fitness. Your treatment may involve one or a combination of the following:

Oncology treatments

If you are suitable to be considered for oncology treatment you will be referred to a specialist oncologist who will meet you in an out-patient clinic.

Following an assessment and discussion with you, they will inform you about the possible treatment options.

You will be given written information about the treatment planned.

If it is agreed you are having chemotherapy or immunotherapy an appointment will be made for you to meet the chemotherapy nurses who will give you additional information before starting treatment. The chemotherapy nurses will also be able to answer any questions you may have.

You will be reviewed regularly, by your oncologist, throughout your treatment and have access to a 24-hour telephone helpline (the telephone number can be found at the end of this leaflet).

Chemotherapy

This is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. It may be used before surgery (neoadjuvant) to reduce the size of the cancer, after surgery (adjuvant) to reduce the risks of your cancer coming back or when surgery is not appropriate. Chemotherapy is usually given during an out- patient appointment, allowing you to go home the same day, although occasionally you may need to stay overnight.

Chemotherapy is likely to be given into a vein (intravenously) and/or in tablet form.

Immunotherapy

Immunotherapy is the use of medicines to help your own immune system find and attack cancer cells more effectively. You might need to have tests using some of your cancer cells from your previous biopsy samples to see if this is suitable for you.

You may have immunotherapy on its own or alongside other chemotherapy treatments. Immunotherapy may also be recommended for some people following an operation to remove their cancer.

Radiotherapy

The use of high energy rays to destroy cancer cells directed at specific areas of your body while doing as little harm as possible to normal cells. Radiotherapy can be given to shrink the tumour, improve symptoms and reduce or stop bleeding related to stomach cancers.

You will need a radiotherapy planning CT scan before starting your treatment. During the CT scan, tiny marks (tattoos) will be placed on your skin to mark where the treatment needs to be directed, this can be a little uncomfortable.

If the cancer is in the upper part of your oesophagus, a mask (shell) may be made for you to wear. This is to help make sure that the right area is treated.

Treatment usually runs on consecutive week days through the length of your treatment for the recommended duration, as discussed with the oncologist. Each treatment lasts approximately 10 to 15 minutes.

Surgery

If your investigations indicate that it is possible to remove your cancer and that you are fit enough, then surgery will be discussed with you. The majority of patients will have chemotherapy or chemotherapy and radiotherapy before their surgery, unless the investigations you had indicate a very early- stage cancer. You may also need oncology treatment after the operation.

Upper GI surgery is a major operation that is likely to require you to be in hospital between 8 to 10 days, dependant on what type of surgery you are having. You are likely to go to our surgical High Dependency Unit following your operation with the aim to transfer to the ward when suitable.

You will be informed of our Enhanced Recovery After Surgery programme (ERAS). This is a programme aimed at reducing complications and to get you home earlier, fitter and safer. Your surgeon will discuss this with you. You will also be given written information about your operation.

Prehabilitation (Prehab)

If it is planned for you to have treatment, you are likely to have side effects and feel tired from the treatment you receive.

Surgery, as previously described, is a very big operation. To help you cope with any of the treatments you receive and aid your recovery there are some things you can do to help yourself. Your Nurse specialist and dietitian will discuss this with you.

You will also be referred to our Prehab team. The Prehab team consists of a physiotherapist, dietitian and clinical psychologist. They will offer you a programme of support and advice to prepare and support you through your treatment, focusing on your nutrition, fitness and emotional wellbeing.

You will be encouraged to maintain or improve your fitness levels and nutrition to the best of your ability. If you smoke, we would recommend that you stop. This is to help reduce your risks of complications following your operation. You may not be able to have your operation if you do not stop smoking. If you need help with this, please speak to a member of the team looking after you.

Oesophageal stent

A stent is a hollow tube that can be placed in the oesophagus if you have swallowing difficulties. This will allow foods and liquids to pass through. The stent is inserted in to the oesophagus endoscopically with X-ray guidance. This is usually done as a day case but sometimes requires an overnight stay in hospital. You will need an adult with you for the first night if you go home the same day as the procedure.

Dilatation

This is an endoscopic procedure, performed with a local anaesthetic throat spray and sedation, where the oesophagus can be stretched (dilated) to allow you to swallow more easily. This procedure is usually performed as a day case, though it is advised that you have an adult with you for the first night following the procedure.

Supportive care

The focus of supportive care is to improve your quality of life, addressing any issues you have with regard to symptoms, physical, psychological and social needs with the specialist input of community services.

You may be referred to our Enhanced Supportive care Team (ESC) or our Community Palliative Care team, depending on your needs.

What happens next?

Following completion of your treatment, you will have regular follow up appointments with either your surgeon, oncologist, Nurse specialist or community team or a combination of them.

If you have any concerns in between your appointments, you should contact your nurse specialist or dietitian (the telephone numbers can be found at the end of this leaflet) or your own GP.

Nutrition

Your cancer or treatment is likely to cause some changes to your appetite and eating habits. You may have swallowing difficulties, a loss of appetite, weight loss, nausea and taste changes.

It is important to keep yourself as strong as possible to help you cope with any treatments you may have. Your consultant, nurse specialist, dietitian or GP can give you advice.

Interventions as described in this leaflet may be recommended to help with your swallowing but there are other options that may be suggested.

The use of medications to help with pain, nausea and acid reflux/ indigestion can also be helpful. Nutrition supplemented drinks are also available on prescription from either your hospital team or GP if it is thought appropriate.

Contact information

Surgeons’ secretaries

Mr Dwerryhouse Tel: 0300 422 6679

Mr Higgs Tel: 0300 422 5953

Mr Hornby Tel: 0300 422 6658

Mr Wadley Tel: 0300 422 6679

Oncologists’ secretaries

Dr Candish Tel: 0300 422 4925

Dr Elyan Tel: 0300 422 4032

Dr Brown Tel: 0300 422 4925

Nurse Specialists

Kelly Weir & Lisa Quemby Tel: 0300 422 6222

Cancer Support Worker

Annabel Mander Tel 0300 422 5374

Dietician

Sarah Davies, Megan Williams &

Fiona Brown Tel: 0300 422 3460

Supportive Care

Enhanced Supportive Care Tel 0300 422 3448

Community Palliative Care Tel 0300 422 5370

Chemotherapy Helpline Tel: 0300 422 3444

Further information

Car Parking

Patients attending Cheltenham Oncology Unit for treatment are entitled to free parking for the duration of the treatment.

A parking permit will be given to you when you meet the chemotherapy nurse before starting your treatment. Reduced parking fees in Gloucestershire Royal and Cheltenham General Hospitals are considered in individual cases where:

• The patient has been in hospital for 14 days or more
• The patient has been in the Department of Critical Care for 3 days or more
• After being in hospital for 3 days with a palliative (not curable) condition
• An out-patient with multiple appointments in 1 week

Parking forms are available from the hospital ward. The completed form needs to be signed by the nurse in charge on the ward then taken to the parking shop. This is situated at:

Gloucestershire Royal Hospital, ground floor of multi-storey Open Monday to Friday (9:00am to 8:30pm) and Saturday (9:00am to 12:30pm).

The Parking shop is closed on Sundays.

Cheltenham General Hospital, Sandford Road Open Monday to Sunday (9:00am to 5:00pm).

Prescription Charges

You are entitled to free prescriptions if you have been diagnosed with cancer. A FP92A form needs to be completed which you can get from your nurse specialist, hospital pharmacy and some GP surgeries.

This form must be signed by a healthcare professional and sent to the address on the form. You should receive your exemption card within 2 weeks of receipt.

Benefit Advice

Having a cancer diagnosis can be expensive through a loss of income and additional travelling cost etc. There are a range of benefits available for people with cancer, and you are advised to contact a benefits adviser to see if you are eligible and to help with claims. This is a free and confidential service. Please contact the Cancer Support Worker or one of the Community services for support.

Cobalt Imaging Centre

Linton House, Thirlestaine Road Cheltenham, Gloucestershire GL53 7AS

Tel: 01242 535923

Community Support Services

There are a range of community support services available. Referrals can be made to support your day to day living for a range of issues, such as improving symptoms, provision of equipment or aids and financial advice.

Please discuss your concerns with the team involved in your care or your GP so the appropriate referrals can be made.

Charlies Cancer Support and Therapy Centre

A walk-in centre which offers friendship, support, holistic therapies, activities and events. They offer a wide range of therapies which are free of charge for people (and family members) affected by cancer. They also offer a childrens’ service with an experienced youth support worker.

The main centre is in Gloucester with satellite centres in the Forest of Dean and Cheltenham.

Charlies Therapy Centre Unit 2, Madleaze Road Gloucester GL1 5SJ Tel: 07786 547439

Website: www.charlies.org.uk Email: charlies2014@yahoo.co.uk

Oesophageal Patients Association

Former patients helping new patients. The group aims to help new patients and families cope with the difficulties arising as a result of treatment, providing support and encouragement.

22 Vulcan House, Vulcan Road, Solihull, West Midlands B91 2YJ Helpline: 0121 704 9860

Monday to Friday, 9:00am to 7:00pm E-mail: enquiries@opa.org.uk Website: www.opa.org.uk

Maggies

A walk-in centre which offers support, advice and information for anyone affected by cancer, all in a very peaceful, relaxed atmosphere. No appointment or referral needed. Refreshments are provided, free of charge.

Situated close to Cheltenham Oncology Centre, The Lodge, Cheltenham General Hospital, College Baths Road, Cheltenham GL53 7QB

Tel: 01242 250 611

E-mail: cheltenham@maggiescentres.org Website: www.maggiescentres.org

Hospices

The word hospice conjures up many different thoughts. Modern hospice care is about helping people to live well throughout their illness and not about just supporting people at the end of life. The staff aim to meet the needs of the patients, their families and carers with the support and expertise of their multi- professional team, working in partnership with community care teams to support people at home, day centre facilities and some providing in-patient stay. There is a wide range of services to support physical, emotional, social and spiritual needs. Also available are a range of creative and complimentary therapies such as: reflexology, massage, acupuncture and aromatherapy.

Sue Ryder Hospice

Leckhampton Court, Church Road, Leckhampton, Cheltenham GL53 0QJ

Tel: 01242 230 199

Website: www.sueryder.org

Longfields Hospice

Burleigh Lane, Minchinhampton, Gloucestershire GL5 2PQ Tel: 01453 886 868

E-mail- info@cotswoldcare.org.uk Website: www.cotswoldcare.org.uk

Great Oaks – Dean Forest Hospice

The Gorse, Coleford, Gloucestershire GL16 8QE Tel: 01594 811 910

E-mail: clerical@great-oaks.org.uk Website: www.great-oaks.org.uk

FOCUS Cancer information & Support Centre

Within Cheltenham Oncology Centre

Open Monday to Friday, 10:00am to 5:00pm Tel: 0300 422 4414

Macmillan Hub

Within the Atrium, Gloucestershire Royal Hospital Open Monday to Friday, 09.00am to 4.00pm

Tel: 0300 422 8880

Email: ghn-tr.macmillanhub@nhs.net

Citizens Advice Bureau

Tel: 01452 527202

Website: www.adviceguide.org.uk

Macmillan Cancer Line

Freephone Tel: 0808 800 0000 Monday to Friday, 8:00am to 8:00pm Website: www.macmillan.org.uk