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 jim18 @jim18

@toomany If confined to the prostate you can get Cyro or other ablation therapy that will eliminate the lesion. Current Cyro is MRI guided so more accurate than in the past. There are failures with all treatments, including surgery followed on by salvage radiation.

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@jim18 Thank you, Jim. It looks like Cryo and other so-called ‘focal’ treatments are something I definitely need to start looking into. So I greatly appreciate the added information.

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Profile picture for Jeff Marchi @jeffmarc

@toomany

It might be possible to use proton radiation to radiate those spots that are in the prostate area.

Here are some other options

Recurrence after radiation - focal therapy or surgery

People who have radiation as their primary treatment have been told by doctors that surgery isn’t really an option if there’s a reoccurrence. Other options are not really mentioned..

This study shows that both salvage focal therapy (HIFU and cryotherapy) and salvage surgery were equally effective at extending the life of a patient that started off with radiation.

Those that had focal therapy had fewer perioperative complications.
https://jamanetwork.com/journals/jamaoncology/article-abstract/2844900

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@jeffmarc Thanks again for your various comments here, Jeff. They are greatly appreciated. I am looking forward to a tele-health visit this next week with my original (2018) radiation oncologist, to secure his thoughts on things, and to get his 'very' experienced opinion on suitable treatment options for me, going forward. He alone is my "gold standard" when it comes to such things. However, as I have indicated elsewhere, while awaiting this future visit, I met with a 'local' radiation oncologist just recently, who shared the following professional opinions:

1) That any further radiation treatment(s) would be a 'no-go' for me, due to scar tissue, likely to have been caused by my earlier radiation treatments (brachytherapy and beam radiation).

2) That salvage surgery would also be a 'no-go', for the same reason as above (scar tissue), although in fairness, he pointed to several remote, yet notable prostatectomy surgeons who occasionally do perform such (post-radiation) surgeries.

3) That multiple forms of ADT (Orgovyx along with Abiraterone), were essentially the only practical treatments that were going to be available to me 'locally'.

He did not mention HIFU, Cryo or any other ablation, or so-called 'focal' types of treatment, and further indicated that any radio-immuno types of treatments (e.g., Pluvicto, etc.), would be contraindicated, since my cancer is not metastatic. Needless to say, his views left me both disappointed and a bit bewildered, but I strongly suspect that what you and others have shared with me here in the way of other options, along with whatever my former (2018) oncologist is likely to say next week, will markedly differ from this gentleman's views.

Anyway, thank you again for sharing!

REPLY
Profile picture for Too-Many @toomany

@jeffmarc Thanks again for your various comments here, Jeff. They are greatly appreciated. I am looking forward to a tele-health visit this next week with my original (2018) radiation oncologist, to secure his thoughts on things, and to get his 'very' experienced opinion on suitable treatment options for me, going forward. He alone is my "gold standard" when it comes to such things. However, as I have indicated elsewhere, while awaiting this future visit, I met with a 'local' radiation oncologist just recently, who shared the following professional opinions:

1) That any further radiation treatment(s) would be a 'no-go' for me, due to scar tissue, likely to have been caused by my earlier radiation treatments (brachytherapy and beam radiation).

2) That salvage surgery would also be a 'no-go', for the same reason as above (scar tissue), although in fairness, he pointed to several remote, yet notable prostatectomy surgeons who occasionally do perform such (post-radiation) surgeries.

3) That multiple forms of ADT (Orgovyx along with Abiraterone), were essentially the only practical treatments that were going to be available to me 'locally'.

He did not mention HIFU, Cryo or any other ablation, or so-called 'focal' types of treatment, and further indicated that any radio-immuno types of treatments (e.g., Pluvicto, etc.), would be contraindicated, since my cancer is not metastatic. Needless to say, his views left me both disappointed and a bit bewildered, but I strongly suspect that what you and others have shared with me here in the way of other options, along with whatever my former (2018) oncologist is likely to say next week, will markedly differ from this gentleman's views.

Anyway, thank you again for sharing!

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@toomany
Your Doctor is good as many just accept that salvage surgery is not an option. His advising you of the possibility of it, many would not, especially a radiologist oncologist, even though that option is off. There are surgeons now that their specialty is salvage surgery and they are very good at it. It’s just a niche sub market of prostate surgery practiced by some very skilled surgeons. I believe members on here have had it. Depending on your age and health I would say it is a viable option on the table for now.

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Thank you, Wheel, and yes indeed, I fully agree. The fact that he had readily suggested salvage surgery, speaks volumes. He clearly stated that few surgeons perform surgery under said circumstances, but readily provided several names, and he clearly cited the possible post-surgical side effects. So, it may presently remain as a secondary option for me, but I have definitely not dismissed it from future consideration. It'll depend highly on what I read, hear and learn in the weeks ahead.

Thanks again.

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Profile picture for Too-Many @toomany

@jeffmarc Thanks again for your various comments here, Jeff. They are greatly appreciated. I am looking forward to a tele-health visit this next week with my original (2018) radiation oncologist, to secure his thoughts on things, and to get his 'very' experienced opinion on suitable treatment options for me, going forward. He alone is my "gold standard" when it comes to such things. However, as I have indicated elsewhere, while awaiting this future visit, I met with a 'local' radiation oncologist just recently, who shared the following professional opinions:

1) That any further radiation treatment(s) would be a 'no-go' for me, due to scar tissue, likely to have been caused by my earlier radiation treatments (brachytherapy and beam radiation).

2) That salvage surgery would also be a 'no-go', for the same reason as above (scar tissue), although in fairness, he pointed to several remote, yet notable prostatectomy surgeons who occasionally do perform such (post-radiation) surgeries.

3) That multiple forms of ADT (Orgovyx along with Abiraterone), were essentially the only practical treatments that were going to be available to me 'locally'.

He did not mention HIFU, Cryo or any other ablation, or so-called 'focal' types of treatment, and further indicated that any radio-immuno types of treatments (e.g., Pluvicto, etc.), would be contraindicated, since my cancer is not metastatic. Needless to say, his views left me both disappointed and a bit bewildered, but I strongly suspect that what you and others have shared with me here in the way of other options, along with whatever my former (2018) oncologist is likely to say next week, will markedly differ from this gentleman's views.

Anyway, thank you again for sharing!

Jump to this post

@toomany
You should see another doctor about doing focal therapy. It doesn’t appear to be an area that your current doctor is familiar with. Not saying you have to do it, but you should at least look at it.

He’s probably right about chemo or Pluvicto not being appropriate since there are no metastasis. That is a good thing.

Getting on the right drugs right now, and stopping from growing and spreading makes the most sense.

REPLY
Profile picture for Jeff Marchi @jeffmarc

@toomany
You should see another doctor about doing focal therapy. It doesn’t appear to be an area that your current doctor is familiar with. Not saying you have to do it, but you should at least look at it.

He’s probably right about chemo or Pluvicto not being appropriate since there are no metastasis. That is a good thing.

Getting on the right drugs right now, and stopping from growing and spreading makes the most sense.

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@jeffmarc Yessir, I agree on both scores, and I positively will be concentrating on 'focal' treatments. I just truly dread the almost inevitable future with Orgovyx, and worse yet, with Abiraterone/Prednisone. Prednisone alone, is brutal!

And as I've indicated previously, I will definitely be seeing my original (2018) radiation oncologist soon, who I strongly suspect will discourage salvage surgery, and recommend some form of focal therapy or treatment.

REPLY
Profile picture for Too-Many @toomany

@jeffmarc Yessir, I agree on both scores, and I positively will be concentrating on 'focal' treatments. I just truly dread the almost inevitable future with Orgovyx, and worse yet, with Abiraterone/Prednisone. Prednisone alone, is brutal!

And as I've indicated previously, I will definitely be seeing my original (2018) radiation oncologist soon, who I strongly suspect will discourage salvage surgery, and recommend some form of focal therapy or treatment.

Jump to this post

@toomany
Salvage surgery almost always leads to Permanente Incontinence. You can get an AUS after having it. Just something to be aware of.

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Profile picture for Jeff Marchi @jeffmarc

@toomany
Salvage surgery almost always leads to Permanente Incontinence. You can get an AUS after having it. Just something to be aware of.

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@jeffmarc Thanks again Jeff, and yes, the associated research and future decisions on which way to go for recurrent treatments, including evaluation of potential side effects, etc., is going to be 'daunting'. Of course, in the end, my primary radiation oncologist is likely to call all the shots, but the list of various options, that people in my shoes have chosen out there (in conjunction with ADT), is getting longer by the minute . . .

Salvage surgery
Proton
VMAT
Cryo
HIFU
TULSA
Pluvicto
. . .
. . .

REPLY
Profile picture for Too-Many @toomany

@jeffmarc Thanks again Jeff, and yes, the associated research and future decisions on which way to go for recurrent treatments, including evaluation of potential side effects, etc., is going to be 'daunting'. Of course, in the end, my primary radiation oncologist is likely to call all the shots, but the list of various options, that people in my shoes have chosen out there (in conjunction with ADT), is getting longer by the minute . . .

Salvage surgery
Proton
VMAT
Cryo
HIFU
TULSA
Pluvicto
. . .
. . .

Jump to this post

@toomany > See Jeff's comment on salvage surgery.
> Ablative procedures include Cyro (freeze); IRE (electric); Laser; Ultrasound (HIFU ; Tulsa ). What is best depends on the size and location of the lesion. Get opinion from specialist practice that does most of these if you go this route.
> Proton or Photon RT likely with ADT (? doublet with ARSI: Nubeqa,Erleada,Xtandi). VMAT, IGRT, IMRT, SBRT are RT abbreviations. SBRT is for high dose (5 sessions).
> Since your PMSA PET was clean you do not qualify for systematic treatments for metastatic cases (Pluvicto, Chemo, etc.)

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Profile picture for jim18 @jim18

@toomany > See Jeff's comment on salvage surgery.
> Ablative procedures include Cyro (freeze); IRE (electric); Laser; Ultrasound (HIFU ; Tulsa ). What is best depends on the size and location of the lesion. Get opinion from specialist practice that does most of these if you go this route.
> Proton or Photon RT likely with ADT (? doublet with ARSI: Nubeqa,Erleada,Xtandi). VMAT, IGRT, IMRT, SBRT are RT abbreviations. SBRT is for high dose (5 sessions).
> Since your PMSA PET was clean you do not qualify for systematic treatments for metastatic cases (Pluvicto, Chemo, etc.)

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@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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