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Thoughts on treatment options

Posted by jmgpdx68 @jmgpdx68, Aug 31 11:09am

A quick rundown of my situation:
57 yo, 188 lbs 5’10”, active, good overall health and diet, working out, no booze, smoking or drugs, good relationship, Buddhist meditator, etc

2020s - elevated PSA
Nov 2024 - biopsy, two spots that 3+3 = 6, Group 1, active surveillance
Nov 2025 - biopsy, spots are now 3+3 = 6 and 3+4 = 7 with only 10% in the 4 range, Group 2, treatment recommended.
Feb 2026 - MRI, I don’t have the details of what this showed yet

It took a few months to get back in to see urologist, the combo of the biopsy and MRI has him recommending treatment: surgery, radiation or HIFU.

I’m leaning towards radiation just to minimize potential side effects and cost for now, kicking the ED and incontinence can down the road so I can take steps to mitigate over the next few years or so. The time commitment for treatments is acceptable for me, I work from home and have a fairly light schedule.

Curious to see what others think before I contact my urologist and get started on one of the options?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for ireland1964
ireland1964 | @ireland1964 | 5 days ago
In reply to @toomany "@jim18 Jim, thanks so much for your comments and suggestions. I have indeed read Jeff's earlier..." + (show)
Profile picture for Too-Many @toomany

@jim18 Jim, thanks so much for your comments and suggestions. I have indeed read Jeff's earlier comment(s), and I will feel a whole lot better about all of these various treatment options and what he recommends, after meeting with my primary radiation oncologist later this next week. However, I think it's probably safe to say that most oncologists or treatment facilities, regardless of their professional opinion, specialty or inherent biases, are not likely to offer all of the various options that you and others have cited here, under their own lone banner. Even the best or most acclaimed of facilities are not that well equipped or funded. So his opinion this next week is definitely going to weigh very heavily for me, and needless to say, I'm anxious to obtain it.

As for my PSMA-PET scan being "clean"? I'm not quite sure what you may have meant by the term "clean"? There was notable (or concerning) levels of tracer uptake in the central and anterior margins of the prostate itself, and extremely heavy uptake (SUV=21) outside of the prostate gland, in the right seminal vesicle. Perhaps by "clean", you meant that it had not gone metastatic, into the pelvis or bone, etc., but if you get the chance, maybe you could clarify that for me? Either way however, I am most grateful for your input.

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@toomany Have a Pet coming up which I’m sure will lead to another learning curve so I’m interested in that info as well

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Profile picture for Jeff Marchi
Jeff Marchi | @jeffmarc | 4 days ago
In reply to @toomany "@jim18 Jim, thanks so much for your comments and suggestions. I have indeed read Jeff's earlier..." + (show)
Profile picture for Too-Many @toomany

@jim18 Jim, thanks so much for your comments and suggestions. I have indeed read Jeff's earlier comment(s), and I will feel a whole lot better about all of these various treatment options and what he recommends, after meeting with my primary radiation oncologist later this next week. However, I think it's probably safe to say that most oncologists or treatment facilities, regardless of their professional opinion, specialty or inherent biases, are not likely to offer all of the various options that you and others have cited here, under their own lone banner. Even the best or most acclaimed of facilities are not that well equipped or funded. So his opinion this next week is definitely going to weigh very heavily for me, and needless to say, I'm anxious to obtain it.

As for my PSMA-PET scan being "clean"? I'm not quite sure what you may have meant by the term "clean"? There was notable (or concerning) levels of tracer uptake in the central and anterior margins of the prostate itself, and extremely heavy uptake (SUV=21) outside of the prostate gland, in the right seminal vesicle. Perhaps by "clean", you meant that it had not gone metastatic, into the pelvis or bone, etc., but if you get the chance, maybe you could clarify that for me? Either way however, I am most grateful for your input.

Jump to this post

@toomany
SUV 21 is pretty high. Is that what they found now after you’ve been treated? Something definitely has to be done about that, I hope you find the right answer.

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Too-Many | @toomany | 4 days ago
In reply to @jeffmarc "@toomany SUV 21 is pretty high. Is that what they found now after you’ve been treated?..." + (show)
Profile picture for Jeff Marchi @jeffmarc

@toomany
SUV 21 is pretty high. Is that what they found now after you’ve been treated? Something definitely has to be done about that, I hope you find the right answer.

Jump to this post

@jeffmarc Yessir, that is indeed pretty high, but no, it was found from a PSMA-PET scan done about two-weeks ago, which is nearly 8-years after initial ADT and radiation treatments.

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Too-Many | @toomany | 4 days ago
In reply to @ireland1964 "@toomany Have a Pet coming up which I’m sure will lead to another learning curve so..." + (show)
Profile picture for ireland1964 @ireland1964

@toomany Have a Pet coming up which I’m sure will lead to another learning curve so I’m interested in that info as well

Jump to this post

@ireland1964 Good deal! That PET scan should be really insightful. I'm hoping that it's specifically a PSMA-PET, and I'll hope that it goes very well for you.

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soli | @soli | 4 days ago

I too was diagnosed with Gleason 3+4, with cancer found in only 1 of 18 cores. I had hoped I might have the option of active surveillance, but my high GPS genomic score and very high PSA made that option less appropriate in my case.

I ultimately had to choose between radiation and surgery. I was initially attracted to the “non-invasive” nature of radiation, but ultimately decided on surgery last year because both my surgeon and a radiation oncologist confirmed my concern that radiation could potentially worsen my preexisting urinary symptoms related to a post-TURP surgery-enlarged prostate and overactive bladder.

So far, my PSA has remained undetectable after surgery, which is encouraging, although I know it is still too early to say whether the surgery will provide long-term cancer control. Unfortunately, I did develop severe incontinence, which has persisted despite being very diligent with pelvic floor exercises.

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Profile picture for jim18
jim18 | @jim18 | 4 days ago
In reply to @toomany "@jim18 Jim, thanks so much for your comments and suggestions. I have indeed read Jeff's earlier..." + (show)
Profile picture for Too-Many @toomany

@jim18 Jim, thanks so much for your comments and suggestions. I have indeed read Jeff's earlier comment(s), and I will feel a whole lot better about all of these various treatment options and what he recommends, after meeting with my primary radiation oncologist later this next week. However, I think it's probably safe to say that most oncologists or treatment facilities, regardless of their professional opinion, specialty or inherent biases, are not likely to offer all of the various options that you and others have cited here, under their own lone banner. Even the best or most acclaimed of facilities are not that well equipped or funded. So his opinion this next week is definitely going to weigh very heavily for me, and needless to say, I'm anxious to obtain it.

As for my PSMA-PET scan being "clean"? I'm not quite sure what you may have meant by the term "clean"? There was notable (or concerning) levels of tracer uptake in the central and anterior margins of the prostate itself, and extremely heavy uptake (SUV=21) outside of the prostate gland, in the right seminal vesicle. Perhaps by "clean", you meant that it had not gone metastatic, into the pelvis or bone, etc., but if you get the chance, maybe you could clarify that for me? Either way however, I am most grateful for your input.

Jump to this post

@toomany Yes, clean of metastatic lesions. The RO will probably only offer RT. The seminal vesicle may get a different treatment than the prostate if the prostate cannot have more RT.

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Too-Many | @toomany | 4 days ago
In reply to @jim18 "@toomany Yes, clean of metastatic lesions. The RO will probably only offer RT. The seminal vesicle..." + (show)
Profile picture for jim18 @jim18

@toomany Yes, clean of metastatic lesions. The RO will probably only offer RT. The seminal vesicle may get a different treatment than the prostate if the prostate cannot have more RT.

Jump to this post

@jim18 Thank you, Jim! As you might expect, I'm beyond 'eager' for the upcoming appointment with my original RO. I respect him immensely, and have no idea what he's likely to recommend, because the list of alternative treatment possibilities, appears to be so stifling. I just hope that it's not an extended period of external (beam) radiation of some sort, like my initial treatment(s) back in 2018. That particular component of my treatments involved seven straight weeks of daily radiation sessions, in a remote facility some 600-miles away from my home, which essentially precluded my wife or either of my adult sons from any meaningful participation, other than a single visit ot two, which quite honestly, proved to be a rather lonely experience for me.

However, on a much lighter note, when I shared that experience with a close friend (and similarly retired colleague of mine), he said . . .

"Seven weeks away from the wife??? My God, man! I would have jumped all over that"! He said . . . "My wife's name is 'Serena', but things aren't always that 'serene', if you know what I mean?" ; -)

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Profile picture for Jeff Marchi
Jeff Marchi | @jeffmarc | 4 days ago
In reply to @toomany "@jim18 Thank you, Jim! As you might expect, I'm beyond 'eager' for the upcoming appointment with..." + (show)
Profile picture for Too-Many @toomany

@jim18 Thank you, Jim! As you might expect, I'm beyond 'eager' for the upcoming appointment with my original RO. I respect him immensely, and have no idea what he's likely to recommend, because the list of alternative treatment possibilities, appears to be so stifling. I just hope that it's not an extended period of external (beam) radiation of some sort, like my initial treatment(s) back in 2018. That particular component of my treatments involved seven straight weeks of daily radiation sessions, in a remote facility some 600-miles away from my home, which essentially precluded my wife or either of my adult sons from any meaningful participation, other than a single visit ot two, which quite honestly, proved to be a rather lonely experience for me.

However, on a much lighter note, when I shared that experience with a close friend (and similarly retired colleague of mine), he said . . .

"Seven weeks away from the wife??? My God, man! I would have jumped all over that"! He said . . . "My wife's name is 'Serena', but things aren't always that 'serene', if you know what I mean?" ; -)

Jump to this post

@toomany
There are some groups that will give free housing to prostate cancer patients that need to be treated outside their home area. American Cancer Society has free lodging. There are a number of groups that do just do a search on the web for it.

Another person I know just got a 60 day rental With a place that had a kitchen area. Enable both husband and wife to stay there.

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Too-Many | @toomany | 4 days ago
In reply to @jeffmarc "@toomany There are some groups that will give free housing to prostate cancer patients that need..." + (show)
Profile picture for Jeff Marchi @jeffmarc

@toomany
There are some groups that will give free housing to prostate cancer patients that need to be treated outside their home area. American Cancer Society has free lodging. There are a number of groups that do just do a search on the web for it.

Another person I know just got a 60 day rental With a place that had a kitchen area. Enable both husband and wife to stay there.

Jump to this post

@jeffmarc Good afternoon, Jeff, and thank you for the added information.

Lodging was not the issue for me during my 7-weeks of treatment back in 2018. It was simply the loneliness (the prolonged absence of family), so I apologize if my comment(s) implied anything different in any way.

And yes, I was actually quite fortunate back then, as my accomodations at the time were in-fact 'gratis' (no charge), and fully ACS-funded, at the so-called "Hope Lodge" of Salt Lake City.

And, I should probably add that in addition to my wife and sons being hundreds of miles away . . . she was midway into doctoral-level studies in Pharmacy at the time, and both of my adult sons were deeply obligated to local business endeavors, so neither could really visit me with any regularity 600-miles away.

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lagnafinc | @lagnafinc | 3 days ago

There a lot more radiation options for you today that I had for example in 2013 and 2021. Personally I chose high-dosage Cyberknife (twice) because of the short treatment (5 days versus 28+ spread out over a number of weeks for other technologies.); and the fact that the 5yr-10-yr life expectancies were just as good if not better than other technologies. In addition to the 5 days on the table, I had an MRI the prior week, which they use to map out their radiation plan; and they also needed to plant gold fiducial markers in the prostate (done under anesthesia, easy in-and-out procedure. )Those gold markers are used for positional tracking by the Cyberknife while you're on the table and are with you for life (no issues). Anyway, that's just my experience....I avoid recommendations since I'm not a doctor. Good luck !!

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