FAQs

Gastro–intestinal cancer, or GI cancer, is a broad term that encompasses all cancers in the digestive system (the gastro–intestinal tract). This includes cancers of the:

• Oesophagus
• Stomach
• Liver
• Gallbladder
• Pancreas
• Bowel, which includes the colon and rectum
• Anus.

Here is an overview of each cancer. For more information, check out our explainer pages on each GI cancer.

Oesophageal cancer is a cancer type that develops in the oesophagus. The oesophagus is a swallowing tube that passes food from the mouth and throat to the stomach. Some risk factors for oesophageal cancer are long-term exposure to smoking, heavy alcohol intake and Barrett’s oesophagitis. More about oesophageal cancer

Gallbladder cancer, or biliary duct cancer, affects the gallbladder and bile ducts. After bile is produced in the liver, it’s stored in the gallbladder. The gallbladder also digests ad absorbs fats in the intestines. One risk factor for gallbladder cancer is gallstones. More about gallbladder/biliary duct cancer

Pancreatic cancer is cancer that develops in the pancreas. The pancreas is a small, glandular organ about six inches long, located in the abdomen. It is connected to the small intestine and produces enzymes and hormones, like insulin and glucagon. Pancreatic cancer is often called a “silent disease”, because in early stages, it has very few or even no symptoms. More about pancreatic cancer

Stomach cancer, or gastric cancer, can develop in any part of the stomach organ. The symptoms aren’t well defined, like a lot of GI cancers. Sometimes, though, loss of appetite or weight loss can be indicators. Stomach ulcers aren’t necessarily a risk factor for stomach cancer. More about stomach cancer

Liver cancer often begins in other places in the body – like the colon, breast or lung – and then spreads to the liver. The liver is the largest glandular organ in the body. It plays several important roles, including filtering out toxins and storing vitamins and minerals. There are types of liver cancer that start in the liver, too, which are more common in people of Asiatic origin. More about liver cancer

Small intestine cancer, also called small bowel cancer, affects the small intestine. The small intestine is made up of hose-like parts in the digestive system, winding back and forth in the abdominal cavity. It’s about 6.7 metres, and its primary function is to absorb nutrients from food. More about small intestine cancer

Colorectal cancer, also called bowel cancer, can begin in either the colon or the rectum.

• Colon cancer begins within the inner wall of the large intestine. The colon is the lower part of the hose-like portion of the digestive system. It goes from the lower end of the stomach to the rectum. Risk factors for colon cancer can include family history, polyps in the colon, and long-standing ulcerative colitis. More about colorectal cancer
• Rectal cancer begins from the end of the large intestine, the rectum. More about rectal cancer

The development of cancer is very complex and different for each person. There are many elements that can contribute to the growth of cancerous cells and the ability of your body to defend against them.

There is still much we need to learn about what causes GI cancer. Factors like diet, exercise, smoking/vaping and alcohol can impact your risk of cancer. Your body’s ability to repair and defend cells from damage is informed by your genetics and family history.

While cancer is often talked about as one disease, that isn’t accurate. Cancer is a group of diseases, and there are more than 100 different types of cancer. Each type is caused by different things, so there’s no single strategy to prevent all of them. Each type of cancer also responds to different treatments – medicine that works for one type might not work for another type – so there’s no single treatment that can cure all cancers.

Also, different people have different bodies, which impacts things like how their body processes treatment including drugs, characteristics of the cancer, and whether the tumour can continue to change.

When someone is first diagnosed, it’s often an overwhelming time. For that reason, we’ve put together a Little Book of Big Tips for those who want to support their loved one with cancer.

This website has many resources, including videos, booklets and recipes, for people with GI cancer. We invite you to take a look at some and take advantage of them.

There are also many support groups, networks and information services in Australia. They include:

• Cancer Council Australia – national and state groups
• Cancer Voices Australia
• Country Cancer Support (South Australia)
• Bowel Cancer Australia
• Rare Cancers Australia
• Pancare Foundation
• Pankind, Pancreatic Cancer Australia

For a full list of support organisations, please go to our Support Groups page.

Some groups may provide options for care, including home care, community-based programs and assisted living facilities.

One of our greatest challenges is a lack of funding. Community support is vital in making sure that our research continues to help people with GI cancer, both now and into the future.

If you’d like to support us, you can make a donation. You can also take on a Gutsy Challenge trek, where your next holiday could help improve outcomes for people with GI cancer. You could even host a fundraiser – a morning tea, a marathon race, or anything else in-between that inspires you.

Thank you! It’s because of ongoing support from the community that we’ve been able to fund our breakthrough research.

Currently, the main treatments used for GI cancers are:

• Chemotherapy
• Surgery
• Radiation therapy
• Immunotherapy (for some GI cancers).

As research finds out more about each cancer type, new treatment options could become available. For example, in time, immunotherapy could become standard treatment for other GI cancers. New treatment approaches like personalised medicine could also become more widespread.

A treatment plan can include any combination of these treatments.

Each treatment does different things, but they all share the ultimate aim of getting rid of the cancer. The type of treatment recommended for a patient depends on various factors, like:

• The type of cancer, and where it is
• How advanced it is
• The person’s age and general health.

Cancer care often involves a collaboration between different doctors and specialists. This can include:

• Medical oncologists
  Specialists in cancer medicine
• Surgeons
  Specialists in surgically removing cancers
• Radiation oncologists
  Specialists in radiation therapy
• General practitioners (GPs)
  Often the first person someone sees about a health concern
• Cancer nurses
  People who manage patient care, including answering questions and administering medicines
• Allied health practitioners, such as dietitians or physiologists
  People who work with patients on specific concerns, like food and nutrition, or mobility

Chemotherapy is the use of chemicals to destroy cancer cells. It can also be used to destroy organisms in the body, like bacteria, that can cause cancer or increase the risk of cancer forming. Chemotherapy is often used alongside surgery and radiation therapy to increase the impact of the treatment.

Depending on the drug, these chemicals can be natural or synthetic. All anti-cancer drugs are cytotoxic. This means that it’s a substance that has the potential to kill cells – particularly cells that multiply quickly, like cancer cells. This ability is intended to kill cancer cells. But because of this same ability, chemotherapy can impact the health and supply of blood cells.

Blood cells play an important role in fighting infection, helping the blood to clot, and carrying oxygen to different parts of the body. People taking chemotherapy can be more likely to develop infections, bleed or bruise easily. They will also often have less energy. Depending on the person and the chemotherapy they take, the side effects can be different types and levels.

Some other side effects include loss of appetite, nausea and vomiting, hair loss, mouth sores and, sometimes, impacts on fertility. In most cases, there are medicines that can help with the side effects. Most symptoms stop once the treatment is finished.

Surgery is the removal of the main tumour as well as the surrounding tissue, to be sure that as much of the tumour as possible is gone. It’s often necessary to have surgery when you have a GI cancer, and how much is removed depends on the spread of the cancer and on the patient’s general health.

Radiation therapy, or radiotherapy, is the use of high-level radiation to destroy or break down cancer cells.

The type of radiation given can be external, coming from outside the body. It can also be internal, from radioactive materials placed directly in or near the tumour (also known as brachytherapy).

Both cancer cells and healthy, non-cancer cells can be impacted by radiation. The radiation breaks down the cancer cells, so they stop multiplying and growing. With each treatment, more of the cells die, which shrinks the tumour. The dead cells are broken down, carried away by the blood and then excreted. Most healthy cells will be able to recover from this injury.

The dose of radiation that’s given depends on the tumour’s features, like how large it is, what type and grade it is, and where it has spread. The dose also depends on how effective radiation therapy has been as treatment. Often, the treatment is given at several different angles, so that as much of it as possible gets to the tumour, while as little of it as possible gets to healthy tissue.

A PET scan is a type of imaging test. It’s short for positron emission tomography, and it’s safe when used appropriately by trained practitioners.

During a PET scan, a radioactive substance called a tracer is used to look for cancer in the body. On the other hand, a CT scan takes pictures of the inside of your body from various angles. PET scans are often used together with CT scans, because they give more information together.

The Pharmaceutical Benefits Scheme (PBS) is managed by the Department of Health and is available to all Australian residents who have a current Medicare card.

Under the PBS, the government covers some of the cost of medicine for most medical conditions.

Clinical trials are carefully designed research studies that investigate either new forms of cancer care practice or cancer treatment options.

Some trials may review treatment options to see how effective they are, especially if they’re better than standard treatments that are currently available. In these trials, the study also analyses how the treatment affects patients’ health, including any side effects that might happen.

Other trials may look at whether a specific intervention can manage cancer symptoms, or side effects from treatments.

Trials can also look at cancer treatment through the perspective of patients’ quality of life, addressing the effects that cancer and cancer treatment can have on the wellbeing of the patient, their families and communities, and carers.

Participants on a clinical trial are all patients who meet the eligibility criteria and are volunteering to be part of it.

Some clinical trials are randomised. This means that each trial participant gets one of two potential treatments – either:

• the current standard treatment, with a placebo (a pill that has no active ingredient, like a sugar pill)
• the new treatment being investigated.

Which participant gets which treatment is randomly chosen by a computer. When a patient has been ‘randomised’, it means they have been selected to undergo one or the other. The chances between the two are equal.

If a participant doesn’t get the new treatment, they will still receive the best standard available treatment. Just by being on the trial, they will also receive additional support and monitoring, than they would outside of a trial.

Sometimes, the participant doesn’t know whether they receive the new treatment or a placebo. This is called a single-blind study.

Sometimes, their doctor also won’t know. When both parties don’t know, it’s called a double-blind study. When a study is designed this way, it’s to minimise any risk of bias in the research results.

Different clinical trials look at finding out how to improve different things. Some examples are:

• Prevention, which looks at how cancers can be prevented in people.
• Detection, which investigates more or better ways to diagnose cancer, to increase chances of finding the cancer while it’s still in its early stages.
• Treatment, which looks at which treatment might be the most effective, like testing if a new treatment is better than existing ones. This can include medicines, radiotherapy, surgery, and other complementary or supportive therapies.
• Quality of life, which looks for ways to improve the well-being and comfort of patients with cancer, including when undergoing treatment.
• Cost-effectiveness, which looks at the cost, efficiency and benefits of new treatments when compared with existing ones.

Every clinical trial is classified into Phase 1, Phase 2, Phase 3 or Phase 4. Each phase represents a different step in testing a new clinical treatment.

Phase 1 trials aim to find out the most appropriate way to give a new treatment. It focuses on the safety of a treatment and generally involves only a small number of patients.

For example, would it work best by swallowing, by injecting into the blood, or by injecting into the muscle? Or, how much is safe to give the patient, and how often should it be given?

Phase 2 trials look at how well a new treatment works. They test the safety of the treatment at a more advanced level than Phase 1, and also evaluate the anti-cancer effect of the treatment.

Phase 3 trials compare a new treatment to existing, standard treatments. For example, one could compare whether a new drug works better than another drug that’s currently being used to treat people who have the same cancer type. Another could be looking at a new surgical procedure, to see if it’s better than a surgical procedure that’s currently standard.

Phase 3 trials involve hundreds of participants, often from around the world. However, they only happen if results from the Phase 1 and Phase 2 trials with the same investigation shows that:

• the new treatment is safe
• the new treatment is effective
• the new treatment is likely to be as good as, or even better than, standard treatment at present.

Phase 4 trials look at potential side effects that could be caused by a new treatment, when it’s taken over time. These trials happen after the new treatment has been approved and put on the market, and looks for side effects that might not have been spotted before. They can also look at how effective the treatment works over time.

Clinical trials must meet safety rules and standards before they can be approved by an independent ethics committee. Clinicians are made to make sure that their clinical trials are:

• scientifically sound
• not going to cause more harm than good.

They also have to:

• keep all patients who volunteer to take part informed of any developments and results
• meet internationally agreed standards about the right way to do research when it involves people.

Most cancer treatments have a few side effects, and no cancer treatment is guaranteed to be successful. Before patients join a trial, clinicians have to give them accurate information about the research. This includes:

• the purpose of the research
• all foreseeable benefits and risks, including side effects
• full details of what’s needed from patients
• the rights of patients.

Once a patient feels they have understood all the information, they can choose to sign a form called the Patient Information and Consent Form (PICF).

Once someone has signed and is a participant of a clinical trial, they are free to opt out of the trial at any time, for whatever reason. Leaving a trial will not compromise a patient’s future medical care.

Generally, cancer clinical trials are carried out in places that have the capacity for cancer research, like universities, hospitals, labs and pharmaceutical companies. Some places specialise in a specific kind of clinical trial, whether that’s by cancer type (e.g., pancreatic cancer) or by research method (e.g., translational research).

GI Cancer Trials coordinates studies in Australia and Aotearoa New Zealand. We’re a research collaborative with a membership of clinical and research experts, conducting clinical trials for more than 30 years.

All our clinical trials are run by a team of our member researchers. Every trial has a Study Chair, who is in charge of running the trial, and a Principal Investigator (PI for short) from each centre where the trial is available.

Our members volunteer their time conduct the research, on top of their day jobs. They may be affiliated with universities, hospitals and private institutions.

Clinical trials are needed to find out if new treatments are more effective compared to those currently accepted as the best available standard therapy. All treatments and procedures must be scientifically proven before they can be adopted in practice. Through clinical trials, obtaining that proof becomes possible.

Also, not every person or cancer type is the same. Clinical trials are needed to see how effective different treatments, or combinations of treatments, can be, depending on the person or cancer type.

We do our clinical trials in Australia. This means that patients in Australia would be able to access the latest treatments 3–5 years earlier than if they were conducted overseas.

There are many reasons why someone would take part in a clinical trial.

• Patients who take part in clinical trials often get immediate access to the latest treatments, before they’ve become widely available.
• The treatments being offered in clinical trials are either the best treatment there is, or a treatment that is thought to be as good, or potentially even better.
• Some people worry that they will receive no treatment, if they’re assigned to the control group – but that’s not true. All clinical trials are required to ensure that all patients get at least the same level of treatment that would have been prescribed for them outside of a trial.
• Patients who participate in clinical trials get an excellent standard of care. Their condition and health are closely and regularly monitored by leading doctors, nurses, and other medical experts.
• In fact, research shows that patients who are treated through a clinical trial usually have greater cure rates and a better quality of life, compared to patients who are not involved in a clinical trial.
• Patients who choose to be part of clinical trials play an active role in improving treatments. By being part of one, they help others in the future who are diagnosed with the same disease to have better treatments.

No, there is no cost to the trial itself. Any direct costs to take part in clinical trials are covered by the organisation conducting the clinical trial. Organisations like GI Cancer Trials usually do this with funding support, which can be from:

• government agencies, including the National Health and Medical Research Council (NHMRC) and Cancer Australia
• untied sponsorships from the pharmaceutical industry
• charitable donations from the public, like those raised through GI Cancer Trials.

Some of our trials, like STOPNET, will also cover trial-related travel costs for patients who live in rural, regional and remote areas.

Doctors are often generally aware of clinical trials that are in their specialty. They can access databases that show what, where and when trials are happening. When you are discussing treatment with your doctor, they may tell you about trials that you are eligible for.

You can also ask your doctor if there is a trial that you would be eligible for. You can look at the Australian Cancer Trials website to find trials, to talk to your doctor about.

Trials are usually very specific about who they’re looking for, so there may not be one available for you. Eligibility can depend on your cancer type, if you have certain health conditions, or if you’re taking specific medications.

If you do find a suitable trial you’re eligible for, take the time to reflect on the information given to you. Make sure to discuss things with family and friends, weigh up the pros and cons, and have a chat with your doctor before you decide.

You can express your interest to your doctor. Your doctor must provide you with information about the trial, so that you can give informed consent.

Informed consent is more than about signing a form. It’s a process where you learn key information about the trial, so you feel you can safely and confidently make the decision about whether to participate or not.

One way you’re given this information is through a Patient Information and Consent Form (PICF). This is a document that explains the trial in its entirety: what it’s looking to do and what’s involved.

It’s important to understand as much about the trial as you can. This can include how the treatments and tests in the study could be different from what you would get outside of the trial.

Feel free to ask questions to your doctor or the research staff at any time.

Here’s an example of the information you should be given:

• An explanation of the risks, benefits, and any alternative options
• An explanation both verbally and in writing
• Enough opportunity to ask questions and seek advice from people you trust

You also have the right to ask for this information to be given in a language other than English.

The informed consent process is ongoing. If you decide to join a clinical trial, you’ll continue to learn new information as they come up during the trial, so you can decide whether to keep being in the trial or not.

Once you feel confident in your decision, you can choose to sign the PICF. If you meet the trial criteria, you can then join the trial.