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Weekly blog: Getting the full picture

PCFA_OC_Manager
Community Manager
Community Manager
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By Tim Baker

I’m sure I wasn’t the only one who gave a little cheer when the news broke back recently that PSMA PET scans would now be subsidised by Medicare.

“PCFA advocated strongly for this listing and co-funded the game-changing ProPSMA study which informed the decision – we look forward to seeing this life-saving technology made available to all men who need it,” PCFA’s Chairman, Adjunct Associate Professor Stephen Callister, said.

I first heard of a PSMA PET scan from an integrative doctor in the US I occasionally consult, who describes himself as a “patient advocate”. He’s been someone to go to for a second opinion whenever I find myself at any sort of crossroads in treatment options, and he first recommended a PSMA PET scan three or four years ago.

At the time they were hideously expensive, $750 without any Medicare rebate because they were still considered new and experimental. My regular oncologist advised against it because he said the more sensitive scan would pick up even tiny “micro-metastases”.

“Some men light up like a Christmas tree and that can be very confronting,” he warned. I told him I’d like to know exactly what we were dealing with and pressed the point.

And so off I trotted to my friendly radiologist, after fasting overnight and drinking a litre of water in the morning, as instructed.

There wasn’t a whole lot different about the procedure – a tracer dye was injected, I slid in and out of the big donut, adjusting my breathing as ordered by the disembodied AI voice. The biggest noticeable difference was the blow to my credit card.

When I went back to see my oncologist for the results, it showed the lesion in my right femur had completely cleared up and only a small spot on my left seventh rib remained, after early chemotherapy and concurrent hormone therapy. This seemed like good news, especially given the scan’s greater sensitivity and his dire warning.

“This doesn’t mean you’re cured you know,” my oncologist snapped, lest I even momentarily feel any relief or, God forbid, joy at this result. Of course, I knew it wasn’t a cure, but I wouldn’t have minded a brief moment to enjoy this small win.

The questionable bedside manner of my now ex-oncologist aside, I was won over by the PSMA PET scan and there didn’t seem much point going back to an old PET, as it wouldn’t be a like-for-like comparison between scans, despite the cost. It’s reassuring to know exactly how I’m faring and, I’m happy to report, seven years since diagnosis, I still only have that one spot on my rib and am yet to light up like a Christmas tree. The fact I can now maintain this level of monitoring without going bankrupt is a real cause for celebration.

“This is the dawn of a new day for men with high-risk prostate cancer in Australia. PSMA PET/CT scans are more accurate compared with conventional imaging, provide more definitive results, minimise the patient’s exposure to radiation, and allow clinicians to more effectively monitor and manage higher-risk prostate cancers,” says the PCFA’s indefatigable CEO, Anne Savage.

Advances like this give hope to those of us living with advanced prostate cancer that more effective treatments, monitoring and diagnostic tools will continue to tip the scales in our favour for longer and better-quality lives.

This August, Tim will launch his latest book, Patting the Shark. This candid story documents his journey learning to live well with prostate cancer. To launch Patting the Shark, Tim will join Professor Suzanne Chambers at Brisbane Library on August 21, 2022 from 11am to 12pm to talk about his journey. To attend, click here.


About the Author

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Tim Baker is an award-winning author, journalist and storyteller specialising in surfing history and culture, working across a wide variety of media from books and magazines to film, video, and theatre. Some of his most notable books include “Occy”, a national bestseller and chosen by the Australia Council as one of “50 Books You can’t Put Down” in 2008, and “The Rip Curl Story” which documents the rise of the iconic Australian surf brand to mark its 50th anniversary in 2019. Tim is a former editor of Tracks and Surfing Life magazines. He has twice won the Surfing Australia Hall of Fame Culture Award.

Tim was diagnosed with stage 4, metastatic prostate cancer in 2015 with a Gleason score 9. He was told he had just five years of reasonable health left, but seven years on, at 57, he’s still surfing, writing, and enjoying being a dad. His latest book, Patting The Shark, also documents his cancer journey and will be published in August. Tim will be sharing weekly insights into his journey to help other men who have also been impacted by prostate cancer.


Help is Available

Prostate Cancer Specialist Telenursing Service

If your life has been impacted by prostate cancer, our Specialist Telenursing Service is available to help. If you would like to reach out to the PCFA Prostate Cancer Specialist Telenurse Service for any questions you have about your prostate cancer experience, please phone 1800 22 00 99 Monday - Friday 9am - 5pm, Wednesday 10am-8pm (AEST).

Prostate Cancer Support Groups

PCFA is proud to have a national network of affiliated support groups in each state and territory of Australia consisting of men and women who have a passion for assisting others who encounter prostate cancer. This network is made up of over 170 affiliated groups who meet locally to provide one-to-one support, giving a vision of life and hope after treatment. Call us on 1800 22 00 99 to find your local group.

MatesCONNECT Telephone-based peer support

MatesCONNECT is a telephone-based peer support program for men affected by prostate cancer. If you’ve recently been diagnosed with prostate cancer, our MatesCONNECT service can connect you to a trained volunteer who understands what you’re going through. All of our volunteers have been through prostate cancer. Simply call us on 1800 22 00 99 to be connected with a volunteer.

Newly diagnosed? or need to find more information? Access the PCFA resources here.

 
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