1. Initial investigation and referral
About this guide
It can be overwhelming after being told that you have or may have oesophagogastric cancer. You may have lots of questions, and a lot can happen quickly. This resource can help to guide you, and your family, and friends through this experience.
Information and support:
For information and support, call Cancer Council on 13 11 20 to talk to an experienced healthcare professional. For more information about oesophagogastric cancer, Find out more about stomach cancer.
Translating and Interpreting Service (TIS): If you need a translator, call TIS on 13 14 50 or visit www.tisnational.gov.au.
Initial tests you may have
Blood tests
A sample of your blood will be collected to assess your general health. If your GP thinks you have oesophagogastric cancer, they will send you to an endoscopist to get an endoscopy.
Endoscopy
A flexible tube with a camera on it (called an ‘endoscope’) is put inside your nose or throat. The endoscope takes images of the oesophagus and stomach.
Referrals
If your GP has concerns, you will be referred to a specialist (upper gastrointestinal surgeon) at a public hospital or in private practice. Upper gastrointestinal surgeons are doctors who are highly trained in oesophagogastric cancer.
You can bring a family member or friend with you to your appointments.
Timeframes
You should have an endoscopy and see a specialist within two weeks of referral. If you can’t get an appointment with your specialist or an appointment for an endoscopy within this time, follow up with your GP.
Questions you might want to ask
- Can I choose whether I go to a public hospital or private practice?
- Can I choose the specialist I see?
- How much will appointments cost me?
2. Diagnosis and staging
An endoscopist will talk about your test results with you and let you know if cancer is present. This is called making a diagnosis.
If the endoscopy shows cancer, the specialist will do more tests or procedures to see where exactly the cancer is in your body, if the cancer is growing or if it has spread. This is called staging which helps to work out the best treatment for you.
You might have one test or a mix of tests or procedures:
Computed tomography (CT) scan
Computers and x-rays are used to take a detailed picture of the oesophagus and stomach.
Position emission tomography (PET) scan
A small amount of radioactive material is injected and your whole body is scanned to show where the cancer is.
Endoscopic ultrasound
An endoscope is used to look inside your oesophagus and stomach. It uses soundwaves to create a picture of the oesophagus and stomach.
Endoscopic resection
An endoscope is used to take tissue from your oesophagus or stomach. This is done under anaesthetic so you cannot feel it.
Laparoscopy
Small cuts are made on your abdomen or stomach area. The specialist puts a small tube with a camera, called a laparoscope, into your stomach through the cuts. This is done under anaesthetic (you will be put to sleep) so you cannot feel it. It is used to find cancers that are too small to be seen on a CT or PET scan. This test is only done for stomach cancer.
Timeframes
Results should be available within two weeks from when you have the tests.
Questions you might want to ask
- What is oesophagogastric cancer?
- What tests will I have? How much will tests/appointments cost?
- Where should I be treated?
- Do I have a choice?
- What stage is my cancer?
- What support services are available to me?
3. Treatment
There are several ways to treat oesophagogastric cancer. Your specialist will talk to you about your treatment options.
You will be treated by a team of experts, and you may need more than one treatment type to get the best results. The team will work with you and your family or carer to plan your treatment.
You might have one treatment or a mix of treatments:
Endoscopic treatment
Your specialist can use an endoscope for different treatments. These treatments are used if you have early oesophagogastric cancer. They can also be used to prevent cancers from growing. Surgery is where the cancer is cut out.
Radiation therapy
Radiation therapy uses x-rays to kill cancer cells and stop the cancer growing. It might be used with surgery or chemotherapy or if the cancer has spread.
Chemotherapy
Chemotherapy or drug therapy uses drugs to kill cancer and stop the cancer growing. It might be used if the cancer has spread.
Stent
A tube of flexible mesh, known as a stent, is put into your oesophagus. It is used to make your oesophagus wider so foods and liquids can get to the stomach more easily.
For more information visit Cancer Treatment.
Supportive care (treatment or services that support you through a cancer experience) are also available.
Clinical trials
You may be offered to take part in a clinical trial. Clinical trials are used to test whether new treatments are safe and work better than current treatments. Many people with cancer are now living longer, with a better quality of life, because of clinical trials.
For more information visit www.australiancancertrials.gov.au.
Complementary therapies
Speak to your healthcare team about any complementary therapies (including dietary supplements like vitamins) you use or would like to use. Something as common as vitamins might not work well with your treatment.
If you smoke
Stopping smoking is one of the most important things you can do to improve your health and wellbeing. Stopping smoking can improve how well the treatment works, reduce the risk of complications during surgery and improve recovery after surgery.
For individual and confidential support to stop smoking call Quitline on 13 7848, speak to your GP or specialist, or visit www.quit.org.au.
Questions you might want to ask
- What treatment do you recommend?
- Where will I have to go to have treatment?
- What will treatment cost and how much of the cost will I have to pay myself?
- What activities/exercise will help me during and after treatment?
- Can I still work?
- How will the treatment affect my day-to-day life?
- Who are the people in my team and who is my main contact person?
- Should I see a dietitian?
- What side effects could I have from treatment?
- Who do I contact if I am feeling unwell or have any questions?
- Will treatment affect my ability to have a child?
4. After treatment
Recovery
Cancer treatment leads to a range of physical and emotional changes.
Follow up care plan: your healthcare team will work with you to make a plan for you and your doctor.
This plan will explain:
• Who your main contact person is after treatment
• How often you should have check-ups and what tests this will include
• Identifying and dealing with side-effects of treatment
• How to get help quickly if you think the cancer has returned or become worse
Many people express feeling anxious that the cancer will return. Your specialist and healthcare team will talk with you about your needs and refer you to healthcare professionals and/or community support services.
Other information you may get:
• Signs and symptoms to look out for if the cancer returns
• The effects of treatment and the specialists you may need to see how to make healthy lifestyle choices to give you the best chance of recovery and staying well
For more information visit After Cancer Treatment
5. If cancer returns
Cancer can come back in the same place after treatment or can appear somewhere different in your body.
If cancer returns, you may be referred to the specialist or the hospital where you were first treated, or to a different specialist.
Treatment will depend on how far the cancer has spread, how fast-growing it might be and the symptoms you are experiencing.
Questions you might want to ask
- Where is the cancer and has it spread?
- What are my treatment options?
- What are the chances that the treatment will work this time?
- Is there a clinical trial available?
- Where else can I get support?
Advance care planning
Your GP or healthcare team may talk with you, your family and carer about your future treatment and medical needs.
Advance care directive
An advance care directive, also known as a living will, is a legally binding document prepared by you to let your family and healthcare team know about the treatment and care you’d prefer, in case you become too unwell to make those decisions yourself.
For more information visit www.advancecareplanning.org.au.
Palliative care
Your specialist may refer you to palliative care services, but this doesn’t always mean end-of-life care. Today, people can be referred to these services much earlier if they’re living with cancer or if their cancer returns. Palliative care can help you to live as well as you can as well as managing pain and symptoms. This care may be at home, in a hospital or at another location you choose.
Speak to your GP or specialist or visit www.palliativecare.org.au.
Making treatment decisions
You may decide not to have treatment at all, or to only have some treatment to reduce pain and discomfort. You may want to discuss your decision with your healthcare team, GP, family and carer. For more information visit https://www.cancer.org.au/cancer-information/treatment/advanced-cancer-treatment.
Questions you might want to ask
- What can you do to reduce my symptoms?
- What extra support can I get if my family and friends care for me at home?
- Can you help me to talk to my family about what is happening?
- What support is available for my family or carer?
- Can I be referred to a community support service?
6. Questions of cost
Decisions about cost
You may have to pay for some appointments, tests, medications, accommodation, travel or parking. Speak with your GP, specialist or private health insurer (if you have one) to understand what is covered and what your out-of-pocket costs may be.
If you have concerns about costs talk to your healthcare team or a social worker about:
- Being bulk-billed or being treated in the public system
- Help with accommodation during treatment
- The possible financial impact of your treatment.
You can call Cancer Council on 13 11 20 to speak to a healthcare professional about financial support. For more information about costs, visit Practical and financial assistance and What will I have to pay for treatment.
7. Further support
Listen to audio in your language
Oesophagogastric cancer support
You can speak to specially trained staff at Cancer Council on 13 11 20. They can answer your questions about the effects of cancer, explain what will happen during treatment and link you to support groups and other community resources.
If you need an interpreter, call TIS (the Translating and Interpreting Service) on 13 14 50.
For support and advice for carers, call the Carers Association on 1800 242 636.
More support options
Australian Cancer Survivorship Centre
Has general and tumour-specific information, primarily focused on the post-treatment survivorship phase
• Telephone: (03) 9656 5207
• Website: www.petermac.org/cancersurvivorship
beyondblue: the national depression initiative
Information on depression, anxiety and related disorders, available treatment and support services
• Telephone: 1300 22 4636
• Website: www.beyondblue.org.au
NEMICS A common path: Oesophagogastric cancer
Videos offering support and advice from people who have been through cancer.
• Visit: www.youtube.com/c/ACommonPathCancersupportandadvice
Cancer Australia
Information on cancer prevention, screening, diagnosis, treatment and supportive care for Australians affected by cancer, and their families and carers
• Telephone: 1800 624 973
• Website: www.canceraustralia.gov.au
Care Search: Palliative Care Knowledge network
Information for patients and carers on living with illness, practical advice on how to care, and finding services
• Telephone: (08) 7221 8233
• Website: www.caresearch.com.au
National Health Services Directory
A directory providing information on local hospital and community services
• Website: www.nhsd.com.au
Optimal care pathways have been developed for health professionals and health services. However, patients and carers may find useful information in this version to help understand the processes their treating health professionals are following.