Q about options

Posted by jrobitai @jrobitai, Aug 18, 2023

sorry, yet another Q about options. I am 62 & have been on Active Surveillance since 2018. A recent (3rd) biopsy had one core that was 3=4 (4 of 12 cores 3+3) = intermediate risk.

It's strange to go from nothing to radical proctectomy (or radiation) and am not comfortable w/the consistency between the (3) biopsies nor with how little technology has progressed in the last 5 yrs re: proctectomy.

I've resigned myself to proctectomy but is there better, more sophisticated / less side-effect than robotic surgery? I'm kind of young and would like very much to maintain continence & erections.

HIFU, Laser etc isn't an option b/c the cancer is in many quadrants (varies w/ biopsy )

Thanks

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@bjroc

So in a clinical trial, you may still have to pay outside hospital charges for standard stuff. Sometimes in a clinical trial that the government pays for completely, like at NIH where I used to work, they pay for everything. Or a company might pay (some perhaps) as they promote eventually use of their instrument in papers. But often times you pay a fee at Mayo (for example) or Yale or where-ever, and after procedure is done. I was in the Mayo clinical trial for FLA but this years biopsy made me in-eligible to be in the trial anymore since I have more than one lesion now, but at Mayo you still would need to pay for the FLA procedure itself.

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Great to know!

I was hoping the TULSA / studies were for entire proctectomies, not just regional.

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@jrobitai

Great to know!

I was hoping the TULSA / studies were for entire proctectomies, not just regional.

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@jrobitai

Thanks Bens1 - glad you had good results. Was your cancer localized? Not to get too personal, but how did 'the other purpose' work?

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Jrobitai: My cancer was localized. Not sure what you are asking “Purpose work?”

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@bens1

Jrobitai: My cancer was localized. Not sure what you are asking “Purpose work?”

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Sorry, it was a poor hint at Steve Martin's 'The Jerk' when he discovered 'his purpose'

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A month shy of 74. two cores of 4-3 and two of 3-4 all from the area of the 7 mm lesion out of 30 cores. I have a 120-gram prostate which is the reason for so many cores. PSA 2.9 and non-palpable. PSMA Pet Scan showed nothing other than the lesion. I elected the 5-proton treatment at Mayo Phoenix. The radiation was a piece of cake, and my three-month post radiation PSA was undetectable. I have had no urinary side effects and I even seem to flow better. I am still getting up at night as before treatment. My age had a lot to do with my decision as if the radiation keep the cancer at bay for 15 years it puts me at 89 and I am not looking forward to a possible stay in a nursing home. My PSA was between 2.3 and 2,9 for over five years till my endocrinologist did a full PSA test one year which was a PSA, PSA Free, and a PSA Free %. My PSA free % was low which is what triggered my MRI and diagnosis. Good luck hope this helped. Do a lot of research as I did.

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@jrobitai

Great thread folks, thanks. I've seen several trials using Focal Laser Ablation (FLA) so maybe you don't have to wait for Medicare?

Search for NCT05027477

However, these seem to be localized (~3 cores) & not seeing any for proctectomy.

Waiting w/cancer is SUCH a risky proposition - the greatest country in the world & we have to choose between finances and SOTA treatment.

..but I digress.

On a side note - I am curious there doesn't seem to be any trials using AI to confirm pathology. I have read several reports where AI had a much higher success-rate at detecting cancer than humans.

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@jrobitai, I noticed that you wished to post a URL to a clinical trial with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Please allow me to post it for you:
- A Comparison of TULSA Procedure vs. Radical Prostatectomy in Participants With Localized Prostate Cancer (CAPTAIN) https://classic.clinicaltrials.gov/ct2/show/NCT05027477

Good question about the use of AI to confirm pathology. Mayo Clinic is conducting several studies involving AI and diagnosis and monitoring.

Here's the search results of the keyword AI in Mayo Clinic's clinical trials database:
https://www.mayo.edu/research/clinical-trials/search-results?keyword=AI&studySiteStatusesGrouped=Open/Status%20Unknown

It is certainly an area of great interest.

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I would love to have your scores. They don't seem very bad at all. Choose the least aggressive first. PC advances very slowly. I chose ADT for a year, after first 2 months. PSA was undetectable. That was good enough for me until I did a ton of research and decided on RALRP. I was going to stay on ADT for another year or two. But decided I might save that if it comes back. All the options suck, as far as side effects. Most side effects a manageable with the help of a sympathetic physician.

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I just finished the 5-proton radiation treatment at Mayo Phoenix 124 days ago. My 3-month follow-up PSA was undetectable. I am 74 and had 2 cores of 3-4 and 2 cores of 4-3 unfavorable intermediate risk because of the two 4-3s. My pretreatment PSA was 2.9 and the 4 cores were out of 30 taken because of my 120-gram prostate and they were all from the area of the 7 mm lesion which was not palpable with a DRE. The radiation was a piece of cake if you don't mind having an immobilizing balloon up your rectum and a full bladder. I have had almost no side effects other than a pinkish discharge before my morning bowel movement for three days and two brown, tan circles, one on each hip where the proton radiation went in. I have had no urinary troubles at all and actually think I am flowing a little better. I am thrilled with this treatment so far and if it killed the cancer like it is supposed to do, I will be ecstatic. Good luck in your decision making.

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@mikewo

I just finished the 5-proton radiation treatment at Mayo Phoenix 124 days ago. My 3-month follow-up PSA was undetectable. I am 74 and had 2 cores of 3-4 and 2 cores of 4-3 unfavorable intermediate risk because of the two 4-3s. My pretreatment PSA was 2.9 and the 4 cores were out of 30 taken because of my 120-gram prostate and they were all from the area of the 7 mm lesion which was not palpable with a DRE. The radiation was a piece of cake if you don't mind having an immobilizing balloon up your rectum and a full bladder. I have had almost no side effects other than a pinkish discharge before my morning bowel movement for three days and two brown, tan circles, one on each hip where the proton radiation went in. I have had no urinary troubles at all and actually think I am flowing a little better. I am thrilled with this treatment so far and if it killed the cancer like it is supposed to do, I will be ecstatic. Good luck in your decision making.

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wow Mike - that's great! ! Happy to hear that!

Here's to you continued success!

I'll definitely look into this. However, b/c ~50% of my cores were + it seems my choice of procedures is limited (I guess they can't be sure to get them all)

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@jrobitai

wow Mike - that's great! ! Happy to hear that!

Here's to you continued success!

I'll definitely look into this. However, b/c ~50% of my cores were + it seems my choice of procedures is limited (I guess they can't be sure to get them all)

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When you get proton radiation at Mayo, they do not just hit the lesions. They do your whole prostate and I believe 2mm of the seminal vesicles to make sure they got everything. Mayo has a phone number you can call for a consult I believe.

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