03 February 2023

This month we caught up with Bob Carnaby, leader of the Grafton Prostate Cancer Support Group. Bob re-launched the Grafton group in 2022 when he found out it had ceased throughout the pandemic and hasn’t looked back. Today he gives his time and energy to ensure that local men are supported.

1. How did you get involved with the Grafton PCSG?

I re-formed the Grafton support group last December, after I discovered that the original group has ceased their activity when covid commenced about three-years ago.

2.When were you diagnosed with prostate cancer?

I was diagnosed with prostate cancer just over seven-years ago, at age 69. I underwent radical prostatectomy, where they found the thought-to-be contained cancer had escaped and invaded my seminal vesicle (intraprostatic).

The diagnosis was upgraded to Grade 3 advanced prostate cancer, with a Gleeson score of 4+3 = 7. Consequently, I went through about six-weeks of radiation therapy, and prescribed a couple of years of hormone therapy.

3.What's the biggest challenge you faced after your diagnosis?

After the initial shock of being diagnosed with prostate cancer, mostly all of the treatments went well, thanks to an overall marvellous team of medical people. That is until I commended hormone therapy. I persevered with the three-monthly injections of Lucerin ADT for 9-months, and decided the quality of life, due to the side effects was not worth continuing the treatment. I was described as a statistical outlier, as my side effects were many and varied. Apparently more so than the usual hot flashes, boob growth and male-member atrophy (if you know what I mean). But as fate would have it, my PSA soon dropped to <0.008, which is virtually a zero score. The hormone therapy had done its job. How about that!

My doctor has been checking my PSA level at three-monthly intervals, ever since.

4. What benefits have you gained from being part of the Grafton PCSG?

It’s good to mix with others in similar situations - people you can relate with and who can relate with you. Only fellas such as these have any idea what the combined experiences can be like. Others who have not been through prostate cancer may joke with you about growing boobs and hot flashes, but they are not in our shoes, and it really isn’t that funny. However, we laugh with them anyway.

But I know that my help lies ahead. My PSA has been progressively climbing over the past year or so. Not dramatically, mind you, but it has recently got to the level classed as a reoccurrence – a very low 0.1. But as low as it is, for one who no longer owns a prostate, this is when the doctors start looking for where it may have travelled to. Unfortunately, the follow up treatment will be ADT if I need it. And that’s when I know I’ll also need support from the group.

5. As the current leader, what motivates you to give back?

Until I need further treatment, I’m very happy to try to assist others through their individual journeys by organising our meetings and sharing my story.

6. How do you go about acquiring new members?

Our marketing of the group has included every way I could conceive from radio adverts to interviews, print media stories, and intro letters and flyers to around 60 medical businesses within a 150km radius. We’ve also shared information on social media and have used an info booth at the local shopping centre.

7. What’s your top tip for running a successful Group?

Keep the meetings interesting and moving. Encourage all to be involved in the conversations. Change the meeting format from time to time. Invite guest speakers, even from other support groups – its stimulating and you can learn a lot. And limit the meeting to 2-hours! Individual conversations can continue in the club over a coffee or a beer if they wish.

8. In your spare time, what keeps you busy?

Organising this support group, marketing it and producing a monthly newsletter occupies a bit of time. Other than that, I have a regular daily 1.5-hour exercise regime. We have three married kids, who have provided us with six grandchildren, and we keep involved with them all. I read, I write, and I carry out maintenance on our 10Ha property.

9. What plans do you have for the group in 2023?

This year I’d like to anchor a core group of men who can provide support to others as they go through the process. All who have joined us have been all good blokes so far, with a huge range of different stories. It makes me feel like a first-year apprentice. Their companionship and stories will no doubt help to provide the strength which I will need, further down the track.

10. How can people reach out to you to find out more?

Men can read more about our group via PCFA’s website at https://www.pcfa.org.au/support/find-a-support-group/grafton-prostate-cancer-support-group/ or give me a call on 0419 610 917.