Shedding a light on lesser known cancers

They’re sometimes called “the forgotten cancers” but they should be talked about. We uncover the facts about rare cancers and a study aiming to better understand them.

Kylie Baracz
July 2018

Did you know that less common cancers account for 40 Australians deaths every day?

“Less common” applies to all cancers other than breast, lung, colorectal, melanoma and prostate cancer. And even though they occur less frequently, they tend to have a higher mortality rate, with some 5-year survival rates as low as 7%.

While the more common and high-profile cancer types – breast and bowel cancer, for example – have seen a significant boost in research funding, awareness and survival rates over the past few decades, there has been a lack of progress for less common cancers. For many cancers, like brain and pancreatic cancer, survival rates have sadly barely improved for decades.

Cancer Council Victoria hopes to change all that with a groundbreaking study known as The Forgotten Cancers Program (FCP).

The program has gathered data and DNA from 4,343 Australians, many who have been diagnosed with a less common cancer.

“We started the FCP because epidemiological research on cancer has tended to focus on the more commonly occurring cancers and not on the less common and often more aggressive cancers that contribute a disproportionate number of deaths,” says Professor Graham Giles, head of research at Cancer Council Victoria’s Cancer Epidemiology and Intelligence Division.

“The aim is to better understand the causes of these cancers. Much of this aim is being achieved by genetic analysis.”

By focusing on the roles of genes, lifestyle and early life environment, the project aims to better understand why less common cancers develop and what can be done to improve the prevention and treatment of these diseases. Project participants have provided information about their family and residential history, health, lifestyle and diet, as well as a saliva sample for DNA analysis.

The project also involves hospitals, universities and research institutions both in Australia and overseas. The data – collected over a 5-year period – will be made available to research projects all over the world.

This is an important step forward in Cancer Council Victoria’s quest to increase research into these “forgotten” cancers, including mesothelioma, pancreas, liver, lung, oesophagus, gall bladder, brain, acute myeloid leukaemia and stomach cancer.

Lack of research funding is a major hurdle in understanding more about these cancers and driving awareness and improvements in survival. Cancer Council Victoria has joined with 10 other organisations to advocate for funding over the next 10 years.

In the following snapshots, the symptoms listed may not be an indication of cancer. But if you are concerned, talk to your doctor.

Pancreatic cancer

Pancreatic cancer affects about 2,600 Australians each year and can occur in any part of the pancreas. There are 2 types of pancreatic cancer: exocrine tumours (about 90% of diagnosed tumours) and neuroendocrine tumours (NETs).

Symptoms rarely show up in the early stages but can include:

• jaundice
• indigestion
• appetite loss
• nausea
• unexplained weight loss
• abdomen or back pain
• diarrhoea or constipation.

Pancreatic NETs have additional symptoms such as blurred vision, excessive thirst, increased urination or a spike or drop in blood sugar.

The 5-year survival rate for the disease is low, at around 7.7%. If caught early, treatments can include chemotherapy, radiotherapy and surgery. Surgical removal of the tumour is usually preferred for patients who are otherwise healthy.

If the cancer is in its later stages, treatments for relieving some of the symptoms are usually considered, along with any of the above treatments if possible. Surgeons may insert a stent if there’s a blockage in either the head or tail of the pancreas.

Liver cancer

About 1,600 Australians are diagnosed with primary liver cancer (which means a malignant tumour starts in the liver) each year. Although it’s one of our less common cancers, the number of cases is on the rise. It often develops from scarring (cirrhosis) left from fatty liver disease or a long-term hepatitis B or C infection.

Primary liver cancer doesn’t tend to have any symptoms in its early stages. In its later stages or in secondary liver cancer – cancer that has spread to the liver from other organs – symptoms can include:

• fatigue
• abdomen or shoulder pain
• appetite loss
• nausea
• unexplained weight loss
• jaundice
• pale bowel motions
• abdominal swelling.

The 5-year relative survival rate for liver cancer is around 17%. Treatment for the disease may include surgery, heat to destroy the tumour (thermal ablation) or chemotherapy. Around 5% of patients will have surgery to remove the cancer, as it’s only suitable for early cirrhosis or a single tumour that hasn’t spread into the blood vessels.

Ovarian cancer

Ovarian cancer – of which there are 3 main types – can affect women in 1 or both their ovaries. Around 1,400 Australians are diagnosed with ovarian cancer each year, with most patients aged over 50.

Symptoms may include:

• abdominal or pelvic pain
• sudden abdominal swelling, weight gain or bloating
• low backache or cramps
• needing to frequently and urgently urinate
• unexplained weight loss
• feeling full early before finishing a meal.

Ovarian Cancer Australia recommends patients log a symptom diary to track any other unusual symptoms, such as changes in bowel habits or unusual bleeding.

The 5-year relative survival rate for ovarian cancer is about 43%, and treatments involve chemotherapy or surgery, or a combination of both. Sometimes radiotherapy is also used.

Gall bladder cancer

Gall bladder cancer, which affects more women than men, begins in the innermost layer of tissue and spreads through the outer layers as it grows. 

There are no symptoms of the disease in its early stages, which makes it difficult to detect early. Later-stage symptoms may include:

• nausea
• vomiting
• jaundice
• fatigue
• fever
• chills
• unexplained weight loss.

The 5-year relative survival rate of the disease is around 19%, and treatment options include surgery if the cancer hasn’t spread into other organs, chemotherapy or radiation therapy. If the cancer has spread to other organs, palliative treatment will be used to control the symptoms of the disease.

Stomach cancer

Each year, about 2,100 Australians are affected by stomach cancer, with men twice as likely to develop the disease.

It can affect any part of the stomach; however, many cases start in the glandular tissue, known as gastric cancer. It may not cause symptoms in the early stages, so diagnosis usually happens at the cancer’s late stages.

Symptoms may include:

• unexplained weight loss
• difficulty swallowing
• indigestion
• persistent nausea
• a sense of fullness
• abdominal swelling
• fatigue
• blood in vomit or stools.

The 5-year relative survival rate for stomach cancer is around 28% and treatments include surgery, chemotherapy and radiotherapy, or a combination.

Visit the Forgotten Cancers Program for more information.