Issue 21 | April 2013

ResearchReport

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

Colorectal cancer2 GP involvement might reduce

unnecessary delays between diagnosis and surgery

We need ‘real’ people!3 Would you be willing to

participate in a Cancer Council campaign?

Pancreatic cancer3 We’re investigating how

normal cells help pancreatic cancer grow and spread

CLEAR Study4 How we ensure our data is

accurate

Participate in our Cancer Council

campaigns

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

Allowing us to share your story in a Cancer Council campaign may help our fight against cancer

ContentsMenopause is an important period in women’s lives during which changes in hormone levels may lead to a number of symptoms, including hot flushes, sleep disturbance, vaginal dryness and urinary incontinence.

To ease these symptoms, some women choose to use one or more therapies from the large number that are available, but unfortunately there is a lack of reliable and up-to-date information as to which are the ones that are being used.

Cancer Council NSW has recently started collecting data for a research survey into therapies used by women to ease menopausal symptoms. The project is titled the LADY Study and it aims to investigate women’s use of

therapies (including hormone replacement therapy and bio-identical hormones) and provide more information about the duration, patterns and reasons of use.

Results from the LADY Study will not only show what therapies are used and how common they are, but will also help us estimate the effects arising from their use in order to determine how many women may be at

risk of cancer from particular therapies.We have reached our target of 3,425

women aged 50-69 to participate in the study. Our next steps are entry of data from the questionnaires and then analysis of the responses.

Learning how Australian women deal with menopausal symptoms

Easing the suffering of menopausal women without putting them at risk of breast cancer is the objective of a new research grant funded by Cancer Council NSW. The research seeks to find safe alternatives to existing hormone replacement therapy (HRT).

HRT is known to increase the risk of breast cancer, mostly due to the presence of the hormone progesterone. The hormone is important for normal reproductive function, but appears to be cancer-causing when used as part of HRT.

Professor Christine Clarke and her team at the Westmead Millennium Institute aim to identify better HRT therapies for women as well as new

ways of diagnosing breast cancer. The researchers are looking for alternatives to progesterone by analysing which other molecules the progesterone interacts with and determining if the alternatives affect them in the same way.

According to Professor Clarke, “Women can be severely affected by menopausal symptoms and currently have a difficult choice to make. They can either continue suffering or relieve their symptoms, but this increases their risk of breast cancer. My team is delighted to be awarded this grant from Cancer Council NSW that will help us investigate why HRT causes breast cancer with the aim of offering women a safer solution.”

We’re searching for a hormone replacement therapy that doesn’t cause breast cancer

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ResearchReport | Issue 21 | April 2013

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

Funds for new research into anal cancerAnal cancer is uncommon in the general population, but is a significant and growing public health issue among gay men. It is estimated that 64% of gay men have human papillomavirus (HPV), and this is the cause of more than 80% of anal cancer cases. With gay men being 20 times more likely to be diagnosed with anal cancer, early diagnosis and treatment is critical.

Cancer Council NSW has announced the funding of new Australian research to help combat this dangerous cancer. Professor Andrew Grulich and his team at the Kirby Institute will identify the best options to prevent, diagnose and treat anal cancer.

The grant for almost $2 million over five years comes after a recent announcement by the Federal

Government to make HPV vaccinations available for boys. “The vaccination will protect future generations from this terrible disease, but we also need to act now. This research could result in less illness and

death from this disease in the very near future,” said Dr Libby Topp, Research Strategy Manager, Cancer Council NSW.

Researchers will identify whether anal cancer screening of high-risk populations, combined with effective treatment, will save lives in the decades before the effects of the HPV vaccination are seen.

The AMA NSW Charitable fund has pledged $8,700 as part of their membership to the Cancer Council NSW 1200 Club (pledge to beat brain cancer). These funds will go towards the installation a of crucial research freezer security system.

The system will monitor freezer temperatures and provide critical data about the freezers and their environment, thus protecting samples to be used for brain cancer research. Brain cancer is currently one of the most under-funded and under-studied of all cancers. To find out more visit www.braincanceraction.com.au

Thank you to the AMA

Cancer Council research projects

Less than half of colorectal cancer (CRC) patients visit a GP between colonoscopy and surgery, and those that do have a longer time lag between diagnosis and treatment, astudy shows.

These findings prompted the study’s authors, including Prof Dianne O’Connell and David Goldsbury from Cancer Council NSW, to question whether GPs could take on a greater role in the care of these patients.

One of the first studies to look at the role GPs play in the treatment pathway following CRC diagnosis, it found that less than half (43%) of the 407 CRC patients had visited a GP between their colonoscopy and surgery. And, perhaps most surprisingly, the average time between colonoscopy and surgery for those who did see a GP was 27 days, compared to 15 days for those who did not consult a GP.

“We were unable to determine whether there was a causal link between GP consultations and time of surgery,” the authors said.

They are considering what other ways GPs could be involved in decisions regarding care following diagnosis that do not increase the interval between diagnosis and treatment. These might include arranging follow-up GP visits shortly after the colonoscopy, as well as emails, text messages or calls to initiate referrals.

A more systematic approach might be needed for GP involvement in the treatment pathway, perhaps including official guidelines from primary care/GP organisations.

This would not only encourage GP involvement, but it would also ensure that this does not lead to unnecessary delays.

GPs need to take a greater role in colorectal cancer care

Human Papilloma Virus

ResearchReport | Issue 21 | April 2013

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

Here’s another way you can help us to defeat cancer

Pancreatic cancer is one of the most dangerous cancers, with many patients living only a few months after diagnosis. The cancer is very aggressive and quickly spreads through the body before obvious symptoms appear.

Until recently it wasn’t understood how it spread so quickly. Professor Minoti Apte, at the Ingham Institute of Medical Research, has shown that normal pancreatic cells are actually being recruited by the cancer, working with it to help it grow and travel to distant parts of the body.

The next step in the process is to try and stop the cancer cells working with normal cells. By examining the exact way that the cancer cells and other cells interact, the researchers hope to find a way to prevent pancreatic cancer from spreading.

Cancer Council NSW has awarded the Ingham Institute a three year grant of $360,000 for pancreatic research. According to Professor Apte, “we

were the first in the world to show that a specific cell type, normally present in the pancreas, helped pancreatic cancers grow. With this grant, we hope to use this knowledge to create a new combination therapy to help improve outcomes for people with pancreatic cancer.”

They will also use advanced genetic techniques to identify which patients are most likely to benefit from this work.

Current treatments for pancreatic cancer are mostly ineffective, so we need

new therapies if we want to improve the survival rate.

Pancreatic cancers can force nearby normal

pancreatic cells to help them grow and spread. Investigating how this occurs may create a new way of treating pancreatic cancer

Stopping pancreatic cancer in its tracks

We are looking for more people to participate in our Cancer Council campaigns as the genuine faces and voices of those who have been on the cancer journey.

Last year, we invited people who have lived through theexperience of cancerin the family to contactus if they were willing tobe included in a groupof people who could becalled on by CancerCouncil to assist ourMedia & Communicationsand Advocacy teams asthe faces and voices of

“real” people who have been on the cancer journey. We include them in Cancer Council NSW advertising and marketing endeavours, as well as advocacy campaigns.

We had a wonderful response to this invitation but we’d love to have more.

If you’re one of the many people who have been on the cancer journey, please let us know if you would be willing to be contacted by the Cancer Council NSW

media, events or advocacy teams about participating in a campaign? Sharing your story may help our fight against cancer.

Call Elle McGlynn on (02) 9334 1925 or email ellem@nswcc.org.au

ResearchReport | Issue 21 | April 2013

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Cancer Council research projects

Join a research study NOW!

Help us beat cancer

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)

Register your interest to be included on our Study Mailing List. Your story or the story of someone you know will help us find the answers.

Yes, please include me on the study mailing list (if yes, we will write to ask you some additional questions relating to your health to allow us to match you to research studies that suit you)

Tick this box if you have been diagnosed with cancer in the past 18 months (you may be eligible for the CLEAR Study and we will send you information)

I know someone with cancer who might like to be in the CLEAR Study. Please send me a brochure.

At Cancer Council we recognise the importance of your privacy and the safeguarding of your personal information. If you have concerns about the privacy of the information, you may provide it securely on-line at cancercouncil.com.au/joinastudy. Please be assured that in collecting this information it will be used for research purposes only, and will be handled in accordance with our Privacy Management Plan (www.cancercouncil.com.au) which addresses our compliance with all legislative requirements.

You can also register atcancercouncil.com.au/joinastudy

Title

First Name

Last Name

Address

Town

Postcode

Email*

Phone*

Mobile** Optional Place the completed information in an envelope addressed to: Join A Research Study Reply Paid 79819

Potts PointNSW 1335

✄

The CLEAR Study collects lifestyle and genetic information from people with all types of cancer and, where possible, their partners. This is in order to provide an open access resource for cancer research.

In 2014, initial data and samples collected for the CLEAR Study will be available to the research community.

Ensuring accuracyIt’s critical that the data we release are accurate, so we start by checking the cancer diagnosis information provided by our participants against the information held in government records at the Central Cancer Registry.

While this is happening, our Data Manager is “cleaning” the data. As there are over 80 questions in each questionnaire, many of which have multiple-choice answers, it is easy for our study participants to make a mistake, or for the data entry service to misinterpret an answer. One common mistake is to

write the current year instead of your birth year, another is to write a different date of birth on the consent form from the one on the questionnaire. We also go back to check the questionnaire if we see a surprising or unlikely answer, such as woman recording that she has had more than 10 children (sometimes it’s correct) or breast fed for 200 months (which isn’t!). Occasionally we find women completed the Men’s Questionnaire (including the question about the number of children they had fathered) and men completed

the Women’s Questionnaire (with a query about the number of children they have given birth to). We often wonder what those men thought when they reach the menopause questions!

Making sure our CLEAR Study is clean and clear

We are still looking for volunteers

As always, we encourage participation in this 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.