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Finished 8 weeks of IMRT yesterday - summary report
Finally rang the bell yesterday! I tried uploading this directly as a post, but apparently it is too long for that, so I put it into a pdf format and attached it. I’ve divided it into different topics to facilitate reading and use of the report. Hope it provides some support and utility.
Thank you to all of you have who have gone before me and shared your experiences. Your stories and wisdom were a big part of successively navigating through my recurrent PCa treatment.
Here’s a quick synopsis:
Received 38 IMRT treatments for local recurrence of PCa. Only significant side effect was some physical and mental fatigue. Achieving "full bladder and empty rectum” status for treatment sessions was the biggest challenge. Some dietary adjustments were needed to achieve “empty rectum” status. I maintained very open and honest commutations with my care team, which definitely helped me get through the process with fewer side effects and less stress than otherwise. Quarterly PSA testing is the follow up plan.
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Eight weeks of IMRT - summary report (Eight-weeks-of-IMRT-summary-report-1.pdf)
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@pesquallie
I use a Wiesner clamp. I put it on as tight as it could possibly go. I don’t even feel it, If I leave it on for over about 2 1/2 hours, I start to feel it, but that’s the only time. You are supposed to move it around no more than every two hours.
Amazon sells them and they come with removable size guides that come in small, medium and large sizes to match the size of the penis.
@jasonnyc The kicker was the palpable nodule in combo with my RARP (2015) pathology that showed a positive margin and a Prolaris score that predicted a 53% chance of BCR in ten years. I had a new urologist when my PSA hit 0.11 and at first his response was that it was probably just lab variation. But when he got my old records and detected the nodule, he immediately referred me to another urologist who specialized in advanced prostate cancer and also put in an order for a PSMA PET scan. That was followed by an MRI. And here is the crazy thing about the PET scan—despite my low PSA, the nodule lit up with an SUVmax of 13.4! That 0.5 cut off for PSA and detectability of the PET scans is only a statistical association. My first RO wanted to start IMRT with six months of ADT immediately, but I decided to tap the brakes a bit and get second and third opinions. I didn’t even know my PSA doubling time. In the end, it was 3 months before I started IMRT (without ADT, my call), and my second PSA came back again at 0.11, and a simultaneous ultra-sensitive PSA test from Labcorp came back at 0.094. Studies that I read indicated that starting salvage RT at such a low PSA yielded better outcomes, and again, given the definitive presence of a nodule/lesion, I felt pretty solid about doing that. If not for the nodule, I suspect that surveillance would have been the recommended route.
The biggest hurdle in getting a PSMA PET scan with PSA < 0.2 is getting insurance to cover it. Mine did, and again I think the nodule and the pathology data were key factors.
My recurrence seems to be a bit of an oddball case. My first RO cited the SPPORT trial to support his recommendation for RT+short term ADT. But I dissected that paper, then discussed it with him. Amongst other things, the SPPORT trial disqualified any candidate with a palpable lesion. So, when I pointed that out to him and asked, how the results of the SPORRT trial applied to me, his answer was, “ only by extrapolation”. I appreciated his honestly, but that’s when I moved on to get other opinions, and ended up with a different RO that was more aligned with my priorities from the get go.
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2 ReactionsWell done! Thanks for taking the time to share.
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