Cancer Council NSW Research Activity Report Winter 2012

ResearchReport Issue 18 | June 2012

What is cancer research and why do we do it?

Contents CLEAR Study

2 Population research helps find cancer causes There are more than 200 diseases described as ‘cancer’, and they each have different causes and methods of treatment. Cancer research is centred on improving our understanding of the different types of cancer, and developing better ways to prevent, diagnose and treat these diseases.

Cancer Council has produced a comprehensive booklet for people who are affected by cancer and would like to know more about clinical trials and other types of health research. The booklet is easy to understand and will help people make an informed decision about the benefits of participating in cancer research.

Population research — also known as epidemiology — is concerned with the causes and effects of cancer diseases in groups of people. Scientists working in epidemiology look for the reasons that people get sick, and compare the health of different groups of people.

Epidemiologists also compare the health of different groups of people. For example, they look at the different effect that cancers may have on men and

women, rich and poor, young and old, or people living in different places.

Laboratory research is often the starting point for clinical research. Scientists working in laboratories observe and experiment with cells, enzymes and DNA from humans and animals, or with diseasecausing agents such as chemicals, bacteria and viruses. Scientists also study and develop new drugs in the laboratory.

Clinical research focuses on the causes, diagnosis, treatment and prevention of cancer in individuals. It is usually carried out in a clinical setting such as a hospital or outpatient clinic, and it often requires patient participation. It includes clinical trials which test new ways of preventing, diagnosing and treating diseases.

If you’re interested in finding out more about why we undertake cancer research and what it means to get involved, read Cancer Council’s new booklet Understanding Clinical Trials and Research. You’ll learn about: • the importance of participating in cancer research, • the benefits of getting involved, • how to find and enrol in a study, • participant information, • how trials and other studies are run and regulated, • dealing with problems and obtaining support.

For a free printed copy of Understanding Clinical Trials and Research call the Cancer Council Helpline 13 11 20

Cancer Council Helpline 13 11 20 www.cancercouncil.com.au

Thyroid cancer

2 The incidence of thyroid cancer increasing while mortality remains low

Bowel cancer

3 What we’re doing about the second most common cancer

Brain cancer

4 Four new studies to further our understanding of this difficult to treat cancer

Secrets behind a key cause of bowel cancer Stunning discovery of the role of the MCC gene in over half of all bowel cancers For enquiries about this newsletter or Join a Research Study, please email joinastudy@nswcc.org.au or call the Join a Research Study number on 02-9334 1398

ResearchReport | Issue 18 | June 2012

Cancer Council research projects

CLEAR Study: The latest news on how population research helps us find the causes and risk factors for cancer in the community Epidemiology is the study of diseases in different groups of people (populations).

It finds patterns and trends of health and illness to work out why certain diseases (e.g. cancers) occur in some people but not in others. For example, it compares health between people who have different occupations, live in different regions or come from different countries.

The CLEAR Study, Cancer Council’s flagship study, is an example of the sort of population research interested in finding the causes and risk factors of diseases.

We are very excited to have just received approval from the Chief Health Officer to link CLEAR records to the Central Cancer Registry and so provide confirmation that key information we

have collected is accurate. Once this has happened we will be able to start our investigations.

The CLEAR Study is aiming to recruit people with cancer and, where possible, their cancer-free partners, to help us identify causes of cancer which could be related to genetics or lifestyle. At

May 2012 we have over 7,000 people in the study, but we urgently need to reach our target of 10,000 people so we can begin meaningful analyses of study data collected for people with the major cancer types.

You, or someone you know, can take action by participating in a groundbreaking research project on the lifestyle and genetic factors that influence cancer in the NSW community. By helping us now you can help us defeat cancer in the future.

Please visit www.clearstudy.org. au or call the CLEAR Study Hotline on 1800 500 894. You can help if you or your partner have been diagnosed with cancer in the past 18 months, live in NSW and are aged 18 or over. Take the survey, make a difference.

The number of thyroid cancer cases may be growing but…

The incidence of thyroid cancer has been reported to be increasing in many countries around the world. One of the possible explanations for this increase is that improved technology and diagnostic practices has meant that more small cancers are being identified before a person notices any symptoms.

Our study’s main aim was to look at the circumstances leading to a diagnosis of thyroid cancer. We also wanted to collect some information on peoples’ exposure to factors that were thought to be related to thyroid cancer.

452 people with thyroid cancer took part in our study, and we found that: • over 60% of thyroid cancers were diagnosed after surgery, • 40% initially presented due to patient concern about a neck lump or obstructive symptom,

Cancer Council Helpline 13 11 20 www.cancercouncil.com.au

• 16% were diagnosed after a doctor noticed a lump of which the patient was unaware, • 11% were incidental findings from a radiographic procedure for a different health problem, • 26% were discovered during treatment of a previously diagnosed benign thyroid disorder.

As the majority of our participants did not initially present with a specific symptom of thyroid cancer, these findings could be an indication that the reported incidence of thyroid cancer is likely to be influenced by diagnostic technology and medical surveillance practices.

This may help to explain why thyroid cancer incidence has been increasing while mortality from the disease has fortunately remained extremely low.

We also found that post-surgical

pathology reporting of thyroid cancer in NSW was far from complete, with 64% of reports missing information on at least one feature considered internationally to be a critical factor in the prognosis and treatment of thyroid cancer patients.

The study results have been published in international journals.

ResearchReport | Issue 18 | June 2012

What we’re doing about bowel cancer in NSW Bowel cancer is the second most common cancer in NSW. In 2008 it accounted for 13% of all new cancers and 13% of cancer deaths in NSW. One in ten men and one

in fifteen women will develop bowel cancer by the age of 85. In 2008, the majority of new cases were in people aged 65 and over. Obesity, a sedentary lifestyle, and a diet high in animal fats and processed foods put people at greater risk of developing bowel

cancers. Tobacco smoking and heavy alcohol consumption may also increase the risk.

In the light of this high cancer incidence, Cancer Council funds a number of colorectal cancer research projects.

Bowel cancer — population research

Bowel cancer — laboratory research

Professor Dianne O’Connell and David Goldsbury, in collaboration with researchers from the University of NSW and University of Sydney led by Professor Mark Harris, completed an analysis of linked data from the ‘45 and Up Study’ on the referral pathways after a diagnosis of colorectal cancer. The primary aim of the research was to describe general practitioner involvement from the time of diagnosis onward for people with colorectal cancer in NSW. The treatment data collected in the population-based NSW Colorectal Cancer Care Survey was linked to death records to provide longer term survival outcomes for people diagnosed with colorectal cancer. This has given rise to two research papers. ❧ The ‘45 and Up Study’, principally funded by Cancer Council NSW, is the largest study on ageing in the southern hemisphere. 267,000 participants drawn from NSW represent over 10% of the population aged 45 and over.

Our ‘45 and Up’ Research Fellow, Dr Marianne Weber, along with collaborators from Charles Sturt University, is investigating the use of screening services in people in regional and rural NSW. Our previous study showed that people from migrant communities needed to be resident in Australia for up to twenty years to use screening at the same rate as the Australian-born population. If this study shows that there is a lower uptake of colorectal and breast screening in non-urban areas, we will work to ensure that education programs encourage better use of these services. There is no doubt that screening for breast and colorectal cancers is an effective method of early detection.

Some of the secrets behind a key cause of bowel cancer have been discovered by a group led by Dr Maija Kohonen-Corish at the Garvan Institute.

The MCC gene (so called because it is Mutated in Colorectal Cancer) was discovered in 1991. However, it was overlooked for many years because it seemed only to apply to a rare set of cancers. Dr Kohonen-Corish’s group made the stunning discovery that instead of applying to just a few cancers, MCC plays a role in over half of all bowel cancers.

This would mean in Australia alone around 7,000 people get bowel cancers connected to MCC each year.

This is important, as having MCC turned off makes bowel cancer significantly more dangerous. Tumours without MCC are more aggressive, larger, and found at a more advanced stage. Worst of all, it makes the tumours far more resistant to chemotherapy.

The researchers have been trying to understand why MCC is so important to bowel cancers. They found that it is important for DNA repair, as well as cell migration. Cell migration is very important in the bowel, as cells must move around to protect it and repair any damage. If MCC is not working, the bowel gets damaged more easily and repairs more slowly, possibly increasing the risk of getting cancer. The group are still working on why it makes those tumours harder to treat.

By studying this gene in depth, Dr Kohonen-Corish and her team hope to uncover the secrets of how it causes bowel cancer. They have also developed a unique test for the MCC gene, which may help clinicians treat people with this terrible illness.

Cancer Council Helpline 13 11 20 www.cancercouncil.com.au

ResearchReport | Issue 18 | June 2012

Cancer Council research projects

We’re giving more thought to brain cancer Brain cancer is one of the most understudied and difficult to treat cancers. In Australia, around 1,200 people die from it every year, and it is the leading cause of cancer death in young people with an average survival of only 15 months This year, Cancer Council NSW’s grants include four new and exciting brain cancer research projects. These grants will further our understanding of this poorly studied disease from research into how brain tumours move, to predicting how well each cancer will respond to treatment.

The new grants are for the following studies: • Dr Megan Hitchins is working on how brain cancer patients respond differently to therapy. Dr Hitchins is looking into why patients that have a single gene (called MGMT) turned off are more likely to better respond to drugs and live longer.

• Dr Geraldine O’Neill is studying how brain tumour cells spread through the surrounding healthy tissue, making

brain cancer patients, substantially improving treatments.

• Dr Gianluca Severi is recruiting 800 glioma* patients and 800 healthy family members from across Australia to form one of the largest epidemiological studies of glioma in the world.

Between them, these grants account for $1.7 million in research funding for brain cancer. This forms part of Cancer Council NSW’s ongoing commitment to research into underfunded and poorly understood cancers. * Glioma is a general term used to describe any

tumour that arises from the supportive tissue of the brain. This tissue, called glia, helps to keep the neurons in place and functioning well.

them harder to remove and more dangerous.

• Dr Kerrie McDonald’s work is aiming to find genes that will predict how efficient treatments will be. Knowing which treatments work best on each subtype would allow clinicians to more accurately diagnose and treat

www.braincanceraction.com.au

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Cancer Council conducts research studies with people from NSW. These studies may be questionnaire based surveys, focus groups and interviews or other types of research. (Study participants will not necessarily be cancer patients)