Finished 8 weeks of IMRT yesterday - summary report

@smoore4
The clamp sounds very painful and I would worry that it would cause serious injury. I had a long drive to my 44 treatments so timing a full bladder was very difficult. Several times I just had to urinate right before treatment. There must be a better way.

@melvinw Interesting! Your RO considered .11 PSA BCR time to act. Of course, they also a detected a small, palpable nodule. My RO considers .05 the threshold of detectability. When my PSA reached .13 last May we were talking about radiation but decided to wait one more PSA test in 3 months time. At that point it dropped to .09 and stayed at about that level (.11 now) for the last 6 months. So now we're waiting to see if it rises before a PSMA, etc. Perhaps I should ask him to be more pro-active.
PS Your "full bladder empty rectum" advice is appreciated. I'm sure I'll need that when I'm ready.

@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.

@melvinw Hey Mel, quick question; why would you not want ADT when you have a nodule that has such uptake on PET scan?
I understand your thinking since the SPORTT trial did not include palpable lesions, but wouldn’t a lesion put you in an even greater risk category? Isn’t that what your first RO inferred?
I asked for ADT in the complete absence of any radiological evidence of disease (PSA 0.18) because I wanted to hit whatever cells were still there as hard as I could; and my thinking would be “what ISN’T lighting up?”
But that’s just the way I think and that doesn’t make it right for anyone else. Honestly, this stuff scares me enough that if my RO painted a Sharpie mustache on me and told me I had to wear it for 6 months, I would have done that too!
Best,
Phil

@heavyphil As we all know, this PCa business is a game of medical odds and personal priorities/values.

As I said, I have been equally concerned about over treatment as well as under treatment with this recurrence. When I was first diagnosed back in 2014, my mindset was very much a concern for under treatment. I moved from active surveillance to having a RARP (a matter of months) when the evidence from a second biopsy made me a candidate for treatment. Knowing that both RT and ADT have potential serious side effects, I really looked hard at all that.

Several factors weigh in my favor as regard the recurrence. No family history of PCa, ten years until recurrence, intermediate risk (Gleason 3+4), and my newly detectable PSA remained unchanged for three months.

NCCN guidelines indicated that RT +/- ADT was the recommended therapy in my case. So even that threw the ADT question back at me and my docs.

On the other hand, I had a recent close call with diabetes (now am on the low end of pre-diabetes) and have a couple risk factors for heart disease. In addition, I have a family history of dementia. ADT is a known risk factor for all of those things, and that weighed greatly into my decision making. I am personally very averse to anything that increases my risk of dementia even slightly, and I work actively to maintain brain health.

Sure, there could be micromets that flew under the PSMA PET radar, but my urologist who specializes in advanced PCa rated that a no greater than a 10% chance. Back to the game of adds. I found that to be acceptable odds.

There are some “older” (pre-2020) studies that have shown that when ADT actually caused harm when used to treat recurrences when PSA was less than 0.5 . One doc at Harvard will not prescribe ADT for recurrences with PSA < 0.5. There seems to be a small, but growing contingent of docs that try to risk stratify patients before recommending ADT therapy.

I totally get it if another guy in my same situation would take the all of the above approach.

For me, quality of life is an important issue, with whatever days/years/decades I have left, but also, as I dug into the literature, it was not clear at all the adding ADT to my RT would improve quantity of life (the SPPORT trial did not demonstrate greater longevity in those patients who added ADT to RT). The two pro-ADT oncologists I saw didn’t provide strong counter arguments to that. Actually, they didn’t counter argue at all. In my discussions with them, they mostly focused on five-year end points, not longevity or quality of life. I was glad I got that out of them. I understand that viewpoint, but I didn’t share entirely in that viewpoint.

Back to the SPPORT trial, I find it hard to conclude either way what the results meant for me. Yes, my first RO was inferring/extraplolating, but he initally presented the SPPORT trial to me as hard evidence for why I should consider ADT. He had to back away from that position when I pressed him. If there had been a similar trial that included men with a palpable lesion, that would have been much more illuminating.

Maybe I will end up playing whack-a-mole with PCa, maybe I won’t. Only time will tell. I think there is a high probability that I’ll go more than 5 years before another relapse, and if that’s the case, I’m okay with that as an outcome of my recent RT. I’ve heard stories from guys who have gone much, much longer from just RT. And in 5+ years, I’m pretty sure there will be new and improved therapies available. I’ll roll the dic again in three months when I do my next PSA test.

Anyway, there’s the gist of my approach to all this. It's good to have these discussions and to get different viewpoints.

@heavyphil As we all know, this PCa business is a game of medical odds and personal priorities/values.

As I said, I have been equally concerned about over treatment as well as under treatment with this recurrence. When I was first diagnosed back in 2014, my mindset was very much a concern for under treatment. I moved from active surveillance to having a RARP (a matter of months) when the evidence from a second biopsy made me a candidate for treatment. Knowing that both RT and ADT have potential serious side effects, I really looked hard at all that.

Several factors weigh in my favor as regard the recurrence. No family history of PCa, ten years until recurrence, intermediate risk (Gleason 3+4), and my newly detectable PSA remained unchanged for three months.

NCCN guidelines indicated that RT +/- ADT was the recommended therapy in my case. So even that threw the ADT question back at me and my docs.

On the other hand, I had a recent close call with diabetes (now am on the low end of pre-diabetes) and have a couple risk factors for heart disease. In addition, I have a family history of dementia. ADT is a known risk factor for all of those things, and that weighed greatly into my decision making. I am personally very averse to anything that increases my risk of dementia even slightly, and I work actively to maintain brain health.

Sure, there could be micromets that flew under the PSMA PET radar, but my urologist who specializes in advanced PCa rated that a no greater than a 10% chance. Back to the game of adds. I found that to be acceptable odds.

There are some “older” (pre-2020) studies that have shown that when ADT actually caused harm when used to treat recurrences when PSA was less than 0.5 . One doc at Harvard will not prescribe ADT for recurrences with PSA < 0.5. There seems to be a small, but growing contingent of docs that try to risk stratify patients before recommending ADT therapy.

I totally get it if another guy in my same situation would take the all of the above approach.

For me, quality of life is an important issue, with whatever days/years/decades I have left, but also, as I dug into the literature, it was not clear at all the adding ADT to my RT would improve quantity of life (the SPPORT trial did not demonstrate greater longevity in those patients who added ADT to RT). The two pro-ADT oncologists I saw didn’t provide strong counter arguments to that. Actually, they didn’t counter argue at all. In my discussions with them, they mostly focused on five-year end points, not longevity or quality of life. I was glad I got that out of them. I understand that viewpoint, but I didn’t share entirely in that viewpoint.

Back to the SPPORT trial, I find it hard to conclude either way what the results meant for me. Yes, my first RO was inferring/extraplolating, but he initally presented the SPPORT trial to me as hard evidence for why I should consider ADT. He had to back away from that position when I pressed him. If there had been a similar trial that included men with a palpable lesion, that would have been much more illuminating.

Maybe I will end up playing whack-a-mole with PCa, maybe I won’t. Only time will tell. I think there is a high probability that I’ll go more than 5 years before another relapse, and if that’s the case, I’m okay with that as an outcome of my recent RT. I’ve heard stories from guys who have gone much, much longer from just RT. And in 5+ years, I’m pretty sure there will be new and improved therapies available. I’ll roll the dic again in three months when I do my next PSA test.

Anyway, there’s the gist of my approach to all this. It's good to have these discussions and to get different viewpoints.

@melvinw
Here’s some more information on ADT optimal duration. After the guidelines are a synopsis of the study of optimal duration for the use of ADT. There’s a summary of the main issues and then the article which is quite lengthy and interesting as well.

Here are current NCCN Guidelines in 2025. They now suggest 0 (zero) months of ADT for low intermediate (GG2); 4-6 months for high intermediate (GG3), and 18-36 months for high risk (GG4 and 5). Actually, the footnote suggests ADT + abiraterone for T3b with lymph node involvement.
The meta-analysis suggests:
* 0 months for 1 intermediate factor (PSA 10-20, GG2 or 3, T2b-c)
* 6 months for 2 or more intermediate factors (PSA 10-20, GG2 or 3, T2b-c)
* 12 months for NCCN high risk (PSA >20, GG4 or 5, T3 or 4)
* undefined for NCCN very high risk (2 or more PSA >40, GG4 or 5, T3 or 4)

Some uniques finding of the below study were:
1. All endpoints tailed off significantly after 9-12 months albeit with marginal improvements and fewer prostate specific deaths. High risk men had the least to gain beyond 12 months .
2. Increased duration, especially over 18 months, resulted in greater other cause deaths, albeit fewer prostate specific deaths. In the past only cardiovascular deaths were seen to increase with more ADT.
3. For very high risk men, the length of time should be tailored individually over 12 months.
4. NCCN risk groups may not be the best way divide treatment
5. Shared decision making should be included in determining how long to stay on ADT
6. For younger, healthier high risk men, there may be greater benefit to staying on ADT longer than 12 months.
https://jamanetwork.com/journals/jamaoncology/fullarticle/2841671