Tag Archives: Peter MacCallum

AMHF 2018 National Men’s Health Gathering

2018 National Men’s Health Gathering

Navigate Decision Aid Presentation
AMHF Men's Health Gathering 2018 - Alan White delivering presentation on Navigate Decision Aid for Low Risk Prostate Cancer

Presenting the Navigate Decision Aid Clinical Trial at the AMHF 2018 Men’s Health Gathering

I felt privileged to present on behalf of Peter MacCallum Cancer Centre at the Australian Men’s Health Forum (AMHF) 2018 National Men’s Health Gathering in Parramatta earlier this week.

The presentation was about the clinical trial currently running for the Navigate Decision Aid for men diagnosed with low risk prostate cancer.  The trial is being conducted by Peter Mac, in conjunction with Swinburne University.

Australia-wide Clinical Trial

The trial is Australia-wide and is open to men who have been diagnosed within the last three months and who are still considering their treatment options (including active surveillance).

No referral is necessary and partners can be involved too.  For further information, please contact Project Manager, Natalie Richards on 03 8559 7453 or email navigate@petermac.org.

Great gathering at Novotel, Parramatta

There was an excellent turnout to the AMHF 2018 Men’s Health Gathering.  Over the three days of the conference, I was able to attend presentations by a wide variety of men and organisations.

Aboriginal and Torres Strait Islander representation was strong, with the likes of Mick Adams, Professor Tom Calma AO, and Romlie Mokak.

I particularly enjoyed listening to Alan Philp, from the Commonwealth Department of Health.  Alan’s interesting back-story included his training as a nurse and midwife!

Raising awareness about Men’s Health

It was very pleasing to see so many men (and women) working at the grass roots level to raise awareness of men’s health issues – especially in regional and rural areas.

A big thank you to the organisers – the 9th National Aboriginal and Torres Strait Islander Male Health Convention Steering Committee and the 2018 National Men’s Health Gathering Steering Committee.

Clinical trial up and running for Navigate

Recently diagnosed with low risk prostate cancer?

Or know someone who has been?

Peter Mac Cancer Centre is running this trial, in conjunction with Swinburne University of Technology.

Men with low risk prostate cancer, and their partners, are needed to take part in the study which is assessing Navigate, a new online tool designed to help navigate their treatment.

For more information on the trial

Please contact Project Manager Natalie Richards on 03 8559 7453 or email navigate@petermac.org.

It always helps to spread the word about exciting new developments like Navigate, so please tell your friends, family and co-workers.  Someone always knows someone else who has recently been diagnosed with prostate cancer.

 

Navigate Trial – Looking for men with low-risk prostate cancer

Recently diagnosed with low-risk prostate cancer?

A trial is underway through Peter MacCallum Cancer Centre in Melbourne and this trial needs men like you.

‘Navigate’ is an online decision aid resource for men diagnosed with low-risk prostate cancer and their partners.  It is also the name of the research project which is guiding the development and testing of the Navigate website.

The Navigate research trial is being run nationally to test the decision aid through a randomised controlled trial.

The beauty of this trial is that men can go directly to the website, or ring the Navigate project team.  There is no need to get a referral from your GP or specialist.  Like all clinical trials, there are criteria which need to be met before a person is accepted.

What is a ‘decision aid’?

The widely respected Mayo Clinic in America defines a decision aid as:-

… a tool used to inform patients about available treatments, along with potential benefits, risks and costs, during clinical encounters.  Decision aids use a shared, informed approach to clinical decision-making.

Receiving a prostate cancer diagnosis usually comes as a big shock.  Then comes the need to make decisions, based upon a range of individual factors, such as:-

  • How aggressive or advanced is the cancer?
  • How old is the man who has the cancer?
  • Does the man have other health issues?

As I discussed in an earlier post about decision making and uncertainty, it is often very difficult and sometimes overwhelming for men to choose what to do or what not to do about their prostate cancer.

Decision aids are tools that are designed to help people understand their treatment options, learn about the pros and cons of each option, and to reduce their likelihood of making a decision that they later regret.

There is even a term – decisional regret – as well as a scale to measure that regret!  The Navigate decision aid is specifically targeted at men who have recently been diagnosed with low-risk prostate cancer (and their partners).  Using Navigate to understand your treatment options and to decide which option best suits you – what you consider to be important – may reduce your risk of decisional regret.

Are you interested?  Or do you know someone else who may be interested?  Great.  Click here to view the Navigate brochure PDF.

Navigate Study: Development of a website for men diagnosed with low risk prostate cancer

Navigate Contact Details

The Navigate Research Team
Peter MacCallum Cancer Centre
navigate@petermac.org

PH: (03) 8559 7453

There is even a Facebook page – click on the image to take you to the Navigate Prostate Cancer Decision Aid page.

Navigate decision aid for low risk prostate cancer

Decision making and uncertainty

When men get a prostate cancer diagnosis, the next discussion is usually about treatment. The stage of the cancer will determine the type of treatments on offer.  Generally, with a diagnosis of low-risk, low-grade prostate cancer, men will often have several options available to choose from.

Depending on a range of criteria, men can consider active surveillance, surgery, or radiotherapy.  There is also the NanoKnife®, which is currently available in Sydney and Queensland.

Active surveillance delays dealing with the two major side-effects of surgery and, to a lesser extent, radiotherapy – incontinence and erectile dysfunction.

Whatever treatment men are looking at, all bring uncertainty.  Common concerns include:-

  • Am I making the right decision?
  • Will the side-effects be worse than expected or not as bad?
  • What is really the best treatment option for me?
  • Will there be other effects from the treatment that I don’t know about?
  • I’ve heard stories about other men – will those things also happen to me?

To work through this maze of questions and worries, it can be helpful to visit a Prostate Cancer Support Group to hear other men’s experiences.  Just remember, every man will respond differently to even the same treatment.  There is no one size fits all treatment. Obtain a second opinion to guide you towards what is best for you, not others.

Even with all the information gathered, there can still be that internal nagging voice – “I’m still not sure”.

Part of the problem is that men, in general, are fixers.  We have a problem and generally we know how or what to do to fix it, but prostate cancer is a whole different kettle of fish. At the low risk stage, men are presented with options, and fixing the problem is not at all straightforward.  There are so many shades of grey.

For many men, they would love to hear “this is the treatment for you, these are the side-effects, and it will work”.  End of story.  Unfortunately, there might still be some level of doubt.  If you can step back for a moment and look at other events in your life where there has been some uncertainty around decision making.  Consider what you did then with the uncertainty, and what you learned that might help you now.

There is no simple answer when dealing with the uncertainty of decision making, and the consequences of that decision, relating to prostate cancer.

If you are stuck in this stage of uncertainty, seek out relevant information, talk to support groups or individuals who might have been in a similar situation.  As uncomfortable as the uncertainty is, be prepared to sit with it, with the anxiety of these uncharted waters.  Talk to your family, or close friends.  The Cancer Council has a help line (13 11 20) where you can talk one-on-one to work through your concerns.

Consider counselling to guide and support you during this transition period, to determine what is the best option for you and that you can you live with the decision that you make.

You don’t have to do this alone, seeking and asking for help shows strength, not weakness.

Lastly, consider visiting the Navigate website, an on-line decision aid for men diagnosed with low-risk, low-grade prostate cancer.  Navigate is a project being run by the Peter MacCallum Cancer Centre in Melbourne, and I am the consumer advocate on the project.

Once you are registered on Navigate, you will be selected for further involvement which will go some way to assisting you to make your decision, and hopefully reduce some of the uncertainty that is churning inside you.