Men’s health

Prostate Cancer Support Groups – What are they good for?

What do I have in common with Ben Stiller, Sam Newman and Wayne Swan? We have all had prostate cancer.

Four men who have had prostate cancer. Alan White, Ben Stiller, Sam Newman and Wayne Swan.
I’m the best looking, right?

I wonder whether Ben, Sam and Wayne knew about Prostate Cancer Support Groups.

For around ten years, I have been the Convenor for the Bayside-Kingston Prostate Cancer Support Group. So, you could say that I know a little bit about the pros and cons of support groups.

Who attends Support Groups and why do they come along?

In my experience, men come to Prostate Cancer Support Groups (PCSGs) for a variety of reasons – seeking information, support and education about their condition.

Not all men who attend PCSGs have prostate cancer. Blokes come along with prostate-related issues like enlarged prostates, prostatitis, Peyronies disease, etc. Sometimes men come to the group after they’ve had a “re-bore”, or if they are undertaking Active Surveillance. They want to hear how others have dealt with these problems.

Some groups have partners attend, as they are also affected by the diagnosis, and can feel left out of the treatment decision-making process. Partners often find relief in speaking with others as well.

A diagnosis of prostate cancer impacts not just the man with the condition, but his relationships, his emotions, his physical and mental state.

Prostate Cancer Support Groups also invite guest speakers and presenters to attend the meetings. These guest presenters talk about the work they do, or bring the group up-to-date with relevant information about current treatments. This keeps the men in the loop about what is happening in the research world, and how it might impact on some of them who may face a recurrence of their cancer.

At our group, we have had men come along who are on their own or looking after elderly parents, so they don’t have the backup and support they need. The group can provide that emotional support, which is so vital after a prostate cancer diagnosis. Research shows that some men who are on their own can face an increased risk of suicide after diagnosis.

Members of Bairnsdale Prostate Cancer Support Group.
Some members of the Bairnsdale Prostate Cancer Support Group in October 2018

Some men who want to know how a support group functions will ring the local group convenor and talk about their diagnosis. Often, I have found that men want to meet up, face to face, and talk about what’s going on for them. Sometimes these men bring their partner along as well, as both of them have so many concerns and questions to ask.

Most men are fixers, so they attend a group to hear how other men have dealt with their problems. They ask questions, have an opportunity to talk to others and then they move on. For some blokes, groups are not their thing, which is fine.

For other men, a group provides a sense of belonging, reducing their feelings of loneliness and isolation. Within these groups, men receive and give support and encouragement. They also get to hear about tips from others who are facing similar issues.

Group Strengths

The following quotes are from some of the men who attend my local PCSG.

The monthly meetings are an opportunity to help others overcome stressful events.

Friendship, support and assistance with navigating the sea of information out there.

A friendly ear in a time of need.

There is a sense of shared experiences and everyone is equal.

To be able to speak freely about your concerns. No matter how you think you’re going, there is always someone who’s doing it tougher – like a member who’s in palliative care and facing the end of his life!

The gallows humour helps lighten things up without taking away from the serious side of meetings.  And the meeting brings men together for a common cause.

How can I find a Prostate Cancer Support Group near me?

Men are not always told about support groups, for whatever reason. In my opinion, it is vital that men are informed about PCSGs – it’s then up to them whether or not they want to contact their local group.

For some men who are still working, the fact that many groups meet during the day might be a barrier to attending. Fortunately, there are some groups that do meet in the evening.

The best way to find your nearest Prostate Cancer Support Group is to check the Prostate Cancer Foundation Australia (PCFA) website. You just click on the map of Australia and then on the state you live in. A list of all the PCSGs in that state will show up and you can then locate a group nearby. It’s also helpful to check out the information on the PCFA site about prostate cancer.

Click on this image to go to PCFA’s list of support groups

Within our group, there are men who have been involved since its creation more than ten years ago. They find the support and friendship is really important to their health and wellbeing. They also feel that they are contributing to the group’s success, which gives them a sense of purpose in their lives, no matter where they are in their cancer journey.

September is Prostate Cancer Awareness Month

It’s a great time to spread the word about getting checked. If you know any men who’ve been diagnosed with prostate cancer, let them know there are others out there who are also dealing it. Tell them that there’s a support group out there which can help them deal with their diagnosis and treatment process.

Spreading the NAVIGATE word

Visiting Government House

Fiona and I were fortunate to attend Victoria’s Government House as part of the 70th anniversary celebrations for the Peter MacCallum Cancer Centre.

We were really excited to meet Her Excellency, the Governor, Linda Dessau. We grabbed the chance to tell her about the NAVIGATE trial for men with low-risk prostate cancer. The Governor was kind enough to let us bend her ear on the subject and even have a photo taken with her.

Alan White with Victorian Governor, Linda Dessau, and Fiona White
Victoria’s Governor, Her Excellency Linda Dessau, with Alan White and Fiona White.

Men’s Sheds in Victoria

I have been doubly lucky on the social engagement front recently, because I also attended a Government House function last week in honour of the Men’s Shed movement in Victoria. It was great to see so many men (and their partners) receive acknowledgement for their support of this state’s Men’s Sheds.

9th Annual Victorian Healthcare Week Expo

On Tuesday, I attended the 9th Annual Victorian Healthcare Week Expo as a presenter. My presentation of Wounding the Soul was part of the patient experience stream. This talk addresses the profound emotional, physical and mental impact of prostate cancer surgery on men and their partners. I also took the chance to stress the importance of the NAVIGATE trial for men who have recently been diagnosed with low-risk prostate cancer.

Associate Professor Munjed Al Muderis delivered a presentation on his current work with amputees. It was great to meet him. We spoke briefly about prostate cancer and he kindly allowed me to have a photo taken with him. I find him and his work so inspiring.

Alan White with Associate Professor Munjed Al Muderis at the 9th Victorian HealthCare Week, 23 July 2019
Alan White with Associate Professor Munjed Al Muderis.
Awardee Alan White, with Professor Penny Schofield (L) and Natalie Richards (R)

Volunteer Awards 2019 – A win for NAVIGATE

Victorian Public Health Volunteer Awards

An exciting event happened last Friday afternoon at the MCG. I was sitting in the Members’ Dining Room with 250 other volunteers and their families. It was wet and windy outside as the Victorian Minister for Health, Jenny Mikakos, presented the 2019 Local Health Volunteer Awards.

Outstanding Achievement by a Volunteer: Improving Public Healthcare

The NAVIGATE team, Professor Penny Schofield (Principal Investigator) and Natalie Richards (Project Manager), were there to see me receive the Award for Outstanding Achievement by a Volunteer: Improving Public Healthcare. Oh, and my wife was there too. I’m not sure who was the most excited!

NAVIGATE team at MCG for Victorian Local Health Volunteer Awards 2019
(L to R) Professor Penny Schofield, Alan White, and Natalie Richards.

Overall, six categories of volunteer achievement were recognised. I felt privileged to have been nominated in the first place, let alone to go on and receive the final Award for my category. It was great to see the number of entries and the outstanding quality of the volunteers who were nominated from across Victoria.

Why did I win?

My Award recognised the last seven years that I have spent working with the NAVIGATE. I have been with the team from its very inception to its current status – clinical trial phase. NAVIGATE is now actively recruiting participants to become involved with the trial, which I believe will lead to a game-changing tool for men diagnosed with low-risk prostate cancer.

https://youtu.be/OqDPxxb6wzY

Special thanks to Natalie Richards for her PR video (above) – you can certainly see the excitement and enthusiasm of our team! And congratulations to all the other volunteers who were nominated for this year’s Awards. Public health in Victoria is all the better for their involvement.

Webinar: Adjusting to the new normal

Free Webinar

This coming Wednesday (3rd of April), I will be the guest on a live webinar broadcast by Victoria Cullen, Sexual Function Specialist.

Victoria Cullen talking about life after prostate cancer surgery
Victoria Cullen, Sexual Function Specialist

The webinar will start at 7:00pm (AEDT) and you can register to watch (or participate) via the link below.

Button to register for free webinar on life after prostate cancer surgery

Victoria and I will be discussing life after prostate cancer surgery, ranging across issues such as:-

  • the physical, emotional and psychological impacts of surgery;
  • how prostate cancer surgery can affect relationships;
  • sex and intimacy after prostate cancer surgery;
  • incontinence and erectile dysfunction.

The webinar is free and we would love you to join us with your questions and comments.  You can, of course, just sit back and watch without joining in – it’s all up to you.

If you’d like to check out our promo video on YouTube, click on the link below.

Check out the promo video on YouTube

Improved Patient Experience for Men with Prostate Cancer

The Patient Experience

It’s great to notice improvements in healthcare and medicine – new techniques, new equipment, new medications, in particular for prostate cancer.  It’s especially wonderful to see changes that focus on the patient and the “patient experience”.

Talk about “your healthcare team” has been around for quite a while.  Unfortunately, often it has only been talk for many men going on the prostate cancer journey (myself included).  Men might be referred to a continence physio, but not made aware of other support services when dealing with post-prostate cancer treatments.  They also may not be fully informed of all potential side-effects of their chosen treatments.

I’ve recently witnessed two completely different models of patient care within the Victorian public health system.  One was fairly poor, but the other was genuinely inspiring.  In this post, I’m going to discuss the latter.

The Peter Mac Model

After accompanying a friend to his first appointment at Peter MacCallum Cancer Centre, I met with the Hospital’s Urology and Continence Nurse Consultant, Marc Diocera.

Marc Diocera, Urology and Continence Nurse Consultant
Marc Diocera – Helping improve the patient experience for men with prostate cancer

Marc kindly invited me to attend their next “Pre-Robotic Assisted Radical Prostatectomy (RARP) Information Clinic, at which I was able to have input as a prostate cancer survivor and thriver.  This enabled me to let the men and their partners know that they will get through their operation.  I was also able to share some of the side-effects that they are likely to experience.

At this Clinic, Marc introduced the new patients to their healthcare team – yes, an actual team of specialists, nurses, physiotherapists, counsellors, and more.

Hands on Catheters

One particularly helpful aspect of the Clinic was when Marc showed the group what the catheter bag looked like.  He passed these around and had the group practise putting them on their legs.  The group also learned how to attach the overnight bag to the catheter.  I could definitely have used a session like this before my surgery!  Even though men are told they will wake up after the operation with a catheter, actually seeing a tube coming out of your penis (Percy) can still be an eye-opener.

It was also helpful for the men to be told that their abdominal muscles will be very sore after being cut through during the operation, and that sitting up was likely to be difficult.  Knowing this kind of thing ahead of the event can go some way to alleviating men’s concerns after their surgery.

Intimacy and Sex

Another important topic for discussion at the Clinic was intimacy and sex.  For most men (if not all), these will now be very different, due to shortening of the penis, as well as loss of thickness.  Other problems such as incontinence for a period of time and erectile dysfunction will have an effect on men and their relationships.  The whole prostate cancer journey is very much a couple’s dis-ease.

For single men, gay men, and those without any support, this can be a particularly difficult time.  The Peter Mac model provides assistance for all to access, so it is important that men do so.  Additionally, if need be, approach a local Prostate Cancer Support Group to hear how others cope.  You are not alone and meeting others can relieve the stress and sense of isolation that can occur with such a diagnosis and subsequent treatment.

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.

More money for prostate cancer research

Funding boost from Federal Government

Last Thursday, I was invited by Movember to attend a joint announcement of increased funding by the Australian Federal Government and Movember Foundation.

$12m for research

Funding of $12m has been committed to fund a new prostate cancer research alliance over the next four years.

Health Minister Greg Hunt with prostate cancer survivors Alan White and Rob Bishop, and Joe from Movember 2018
L-R Joe (Movember), Rob (survivor), Greg Hunt (Health Minister), and Alan White (survivor)
Photo courtesy of L Photography { live laugh love } www.lphotography.com.au

Federal Health Minister, Greg Hunt, and Movember’s Executive Director of Programs, Paul Villanti, made the joint announcement at Movember’s HQ in Richmond.  For full details, click here.

For all those people who get involved each year to raise money for Movember, this is one way in which your funds are being directed.

It was great to meet Rob, a fellow prostate cancer survivor, who turned out to live nearby.  Joe, who works for Movember, is also dealing with his own prostate cancer journey.

We got to hear about Minister Greg Hunt’s own family story of prostate cancer.  It’s wonderful to have someone at the top who really gets it.

Health Minister Greg Hunt talking to prostate cancer survivors at Movember HQ Melbourne 2018
Greg Hunt (Federal Health Minister) talking prostate cancer stuff with survivors Rob, Alan and Joe at Movember HQ, Melbourne. September 2018.
Photo courtesy of L Photography { live laugh love }
www.lphotography.com.au

Many thanks to Sam from Movember for inviting me to attend and for her terrific organisation of the event.

NBN News gave good coverage of the announcement.

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

Successful prostate cancer event held in Hampton

Successful Information Event

Despite the bleak weather last Wednesday night, a good crowd turned out to hear four keynote speakers discuss Prostate Cancer and You.

As part of International Men’s Health Week, Bayside-Kingston Prostate Cancer Support Group organised this special information evening at the Hampton Senior Citizens’ Centre.

Generous sponsorship was provided by the Lions Club (Sandringham), Bendigo Community Bank (Dingley) and Hocking Stuart.  Attendees enjoyed delicious finger food (thanks to the caterers, Party Food Melbourne).  Coffee and tea were kindly supplied by members of the local Country Women’s Association.

The venue was provided by the Bayside City Council, and Brighton Bayside Life Activities Club supplied the sound system.

Keynote Speakers

The first speaker for the night was Dr Daniel Moon, urologist, who fielded many questions from audience members during his presentation.  Daniel covered such issues as PSA testing, the use of MRI-guided biopsies, decision making and the range of treatments currently in use.

Sarah Rudd, continence physiotherapist, spoke next.  She reviewed the male anatomy to explain its complexity and the importance of properly performed pelvic floor exercises, both before and after treatment.  Sarah made sure that we were all awake by getting us out of our seats to do the “nuts to guts” pelvic floor exercise.

After a short break, David Gray, urology nurse practitioner, spoke about his role in assisting men and their partners throughout the prostate cancer journey.  David also mentioned his work at the Australian Prostate Centre in North Melbourne, and the wide range of services that they have available for men (and women).

The final speaker was Kate Williams, accredited exercise physiologist.  Kate discussed the importance of physical activity, not only for general health, but especially in dealing with treatment side-effects such as fatigue, weight gain, muscle loss, depression and anxiety.  She talked about recent studies that have confirmed the importance of appropriate exercise.

Audience at Hampton Senior Citizens' Centre for Prostate Cancer and You Information Evening
Audience building up before the event – Prostate Cancer and You

Importance of Collaboration

All speakers were extremely generous with their time and expertise.  The broad range of questions from the audience reflected the need for collaboration and cross-referral between various arms of the medical fraternity and allied health.

Speakers David Gray and Kate Williams, with Alan White
Speakers David Gray and Kate Williams, with Alan White, at Hampton Senior Citizens’ Centre, Wednesday 13 June 2018

Showbags full of information were provided to all attendees.  These bags included booklets and brochures from:-

The speakers also provided information that was included in the bags.

Special Thanks

This event could not have succeeded without the considerable help from members of the Bayside-Kingston Prostate Cancer Support Group.  In particular, I would like to thank Tony Carr (who instigated the event), Vern Smith (and his wife, Barbara), Rocky Restaino (and his wife, Lucy).

My sincere thanks to all four of our wonderful guest speakers, without whom the evening would never have happened.

If you couldn’t attend this event and you’d like to receive some of the information that was included in the showbags, please contact me by email or by phone to 0407 617 800.

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