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?

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Based on your age and condition and based on my experience with ADT and radiation, I'd get a second opinion and consider nerve-sparing surgery (also mentioned by Jeff). A friend aged 53 had surgery and has needed no more treatment, along with preserving nerves and normal function. Just a thought.

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Profile picture for tattodice @tattodice

In brief, diagnosed Gleason 4+3 at 59 in Dec 2025. Retzius, single incision RALP Jan 2026. I chose the surgery for a few reasons. I am working and radiation would be most disruptive for work and I would need ADT with my risk being higher at 4+3. Wanted to avoid ADT. Otherwise, I would likely have had radiation. Surgery was very successful. Currently undetectable. No real lack of continence, except a bit of stress incontinence which resolved in less than two weeks after catheter. Natural return of erectile function progressing 7 mos post surgery. Utilize Trimix for sexual intercourse. I have zero regrets and am very grateful 🙏🏽. There is no right way, but this was best for me. Hope this helped a bit.

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@tattodice glad to hear things worked out for you.
I’m having trouble trying to figure out what facilities offer the best nerve sparring options like Retzius.
Were you in a similar situation of just happen to already be involved with a facility that offered this?

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Profile picture for ginger38314 @ginger38314

Currently waiting to see Urology surgeon on Sept 28th, saw oncologist last week waiting for decipher test to make decision diagnosed with 2 cores 3+4 taken from .8cm lesion, oncologist recommended 5 sbrt treatments with a 90% cure rate or 95 % with adt, to me the extra 5% is not worth taking it. Would rather do radiation but not with high decipher score, will see what happens.

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@ginger38314 Did you get the decipher results back?
My Prolaris just came back and put me in the low end but still unfav inter risk

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Profile picture for ireland1964 @ireland1964

@tattodice glad to hear things worked out for you.
I’m having trouble trying to figure out what facilities offer the best nerve sparring options like Retzius.
Were you in a similar situation of just happen to already be involved with a facility that offered this?

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@ireland1964

Kind of an interesting story. I work for a physical therapy company in Indiana. There was a urologist, Colin Linke MD, who sent us a lot of referrals for pelvic floor therapy. Then he left the health system that had employed him and opened an independent practice an hour south of Fort Wayne to ride out a non-compete. A year later I found out he was returning to establish his practice here in November 2025. I was somewhat aware of his expertise in this area. My primary care doc referred me to urology based on elevated PSA a couple weeks before he opened his doors. I got on his schedule and was one of his first patients. Great guy! I know a lot of physicians as I call on them in my work. He struck me as unique and I could not deny that our meeting was fortuitous, an orchestration by God. Very grateful to him and to Him!

Where are you located? I was a patient navigator at one point. Maybe I can help.

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Profile picture for ireland1964 @ireland1964

@ginger38314 Did you get the decipher results back?
My Prolaris just came back and put me in the low end but still unfav inter risk

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No, but I just need to have them by 9/28 for Urology surgeon so I can make
a decision. That's great yours came in low even with unfavorable Gleason 7
you should have a good outcome no matter what you choose.

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Profile picture for ginger38314 @ginger38314

No, but I just need to have them by 9/28 for Urology surgeon so I can make
a decision. That's great yours came in low even with unfavorable Gleason 7
you should have a good outcome no matter what you choose.

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@ginger38314 For what it’s worth, My Dr didn’t have anything & I had to call the lab that performed biopsy to get Prolaris results.
My “2nd opinion” with Karmonas cancer center was a disappointment. Their GU claim to have everything reviewed by a team (rad, surgeons, path etc) and develop a specific plan ready for your appt. didn’t work out that way.
Feel like I’m back to square one and starting to think I’ll just focus to find best NS-Ralp and be done with this.
Hope you get better guidance. Were you looking at the Proton Sbrt & a spacer?

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Profile picture for tattodice @tattodice

@ireland1964

Kind of an interesting story. I work for a physical therapy company in Indiana. There was a urologist, Colin Linke MD, who sent us a lot of referrals for pelvic floor therapy. Then he left the health system that had employed him and opened an independent practice an hour south of Fort Wayne to ride out a non-compete. A year later I found out he was returning to establish his practice here in November 2025. I was somewhat aware of his expertise in this area. My primary care doc referred me to urology based on elevated PSA a couple weeks before he opened his doors. I got on his schedule and was one of his first patients. Great guy! I know a lot of physicians as I call on them in my work. He struck me as unique and I could not deny that our meeting was fortuitous, an orchestration by God. Very grateful to him and to Him!

Where are you located? I was a patient navigator at one point. Maybe I can help.

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@tattodice I’m in Michigan and recently had a consult with Karmonas Cancer which honestly didn’t offer any clarity or direction other than surgery or radiation as an option.

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Profile picture for ireland1964 @ireland1964

@ginger38314 For what it’s worth, My Dr didn’t have anything & I had to call the lab that performed biopsy to get Prolaris results.
My “2nd opinion” with Karmonas cancer center was a disappointment. Their GU claim to have everything reviewed by a team (rad, surgeons, path etc) and develop a specific plan ready for your appt. didn’t work out that way.
Feel like I’m back to square one and starting to think I’ll just focus to find best NS-Ralp and be done with this.
Hope you get better guidance. Were you looking at the Proton Sbrt & a spacer?

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@ireland1964, my on oncologist didn't mention a spacer just 5 sbrt treatments over 2 1/2 weeks if my decipher comes in low I will probably go with that, take care and good luck.

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Profile picture for ireland1964 @ireland1964

@ginger38314 For what it’s worth, My Dr didn’t have anything & I had to call the lab that performed biopsy to get Prolaris results.
My “2nd opinion” with Karmonas cancer center was a disappointment. Their GU claim to have everything reviewed by a team (rad, surgeons, path etc) and develop a specific plan ready for your appt. didn’t work out that way.
Feel like I’m back to square one and starting to think I’ll just focus to find best NS-Ralp and be done with this.
Hope you get better guidance. Were you looking at the Proton Sbrt & a spacer?

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@ireland1964
In Michigan, you should go to the following place for second or first opinion. They are recommended by the NCCN which sets standards for treatment.

University of Michigan Rogel Cancer Center
Ann Arbor, MI

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Profile picture for ireland1964 @ireland1964

@tattodice I’m in Michigan and recently had a consult with Karmonas Cancer which honestly didn’t offer any clarity or direction other than surgery or radiation as an option.

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@ireland1964

Univ Michigan Rogel Center
(734) 647-8902 ( Self referral line)
(734) 232-9357 (Fax)
(800)-962-3555 ( Referral line for physicians to refer a patient)

Number of experienced surgeons that can do Retzius

Tag teamed off Jeff.

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