Suggestions please reaching a crunch point!

[GreenStreet]

It is my decision to make with my oncologist and I fully understand that but I am looking for views/suggestions from all the brainy people on this forum re my next move.

My brief history is RP back in 2015 but re-occurence. I did prostate bed radiotherapy and 6 months worth of lupron in 2017 after PSA raised 3 successive times to 0.06. This did not do the trick and I had reoccurence again and a PSMA PET scan back in Nov/Dec 2021 after my PSA had climbed to 0.22 which revealed a suspicious legion in a pelvic lymph node and led me to be classified as oligometastatic. I did not go for the full pelvic lymph node radiotherapy and 2 year ADT because my oncologist who specialises in radiotherapy thought that with my physiology full pelvic lymph node radiotherapy had a high chance of causing considerable damage to my bowel without being certain to cure. I know from a friend that he has been happy to recommend and implement such treatment with success for others based on their physiology so I do trust his judgement on this. So I reluctantly accepted that I am past "cure" so now we play for time. So in Dec 2021 I had focal radiotherapy via Cyberknife to the lymph node (2ml from my bowel) and 6 months bicalutamide. This has bought me 3 years with good QOL. Eventually my PSA rose to 0.26 in November 2024 and I had a PSMA PET Scan in early December which revealed nothing. I should have said that during Covid in 2021 I had a Combidex ferrotran scan at the Radbould University in Nijmegen which, I understand is the best for picking up lymph node involvement, and it identified the spot at an earlier PSA level of 0.11 that was subsequently picked up at 0.22 back in the UK (UK could not treat it at 0.11 because despite assistance from the Netherlands they just could not see it on their systems) and it also picked up something "neutral" not quite at suspicious level in a lymph node on the other side. My best case scenario is that it does manifest itself in the lymph node on the other side and that it can be radiated focally with 6 months bicalutamide and I can buy myself some more time. I think this is what my oncologist is hoping for.

So my latest PSA taken on 26 Feb 2025 is 0.30 up from 0.26 on 13 Nov 24. I am seeing my oncologist tomorrow afternoon but I feel sure that he wont want to scan again so soon and he will want to monitor my PSA in another 3 months time. I am worried that if I let it rise too much it could spread elsewhere but I am also reluctant to go on systemic therapy and forgo the chance in the best case scenario of further spot radiation being able to buy me 3 years without futher treatment and before risking the development of resistance to ADT treatment. I am being treated at RMH on the NHS. I am fortunate enough to be able to pay for a scan privately if I have to.

A few questions including ;

Are there any other types of scan that I should be asking about?

What PSA level would you wait until before scanning again?

Would you move straight to ADT or a modified form if so what? I am attracted to the dose adjusted bicalutamide "adaptive" theropy approach but If I did this I would have to do this under the counter and without telling my oncologist who is very SOC and I am a bit reluctant to do this at this stage.

In my recent blood tests my ALP levels were fine and not elevated so I am hoping no spread to the bones yet. My PSA doubling time was at c 6 months but with the latest reading has pushed out a bit to c 8 months.

I am currently leaning towards waiting a further 3 months but I am edgy about it

Would appreciate some views

[StayingOptimistic]

I am in the same exact situation and don’t know what to do. My appointment with MO on 3/11. I am leaning towards starting ADT for 6 months ( Firmagon + Erleada). We are kidding ourselves, we know it’s there and not always treated with SBRT, so why we wait untill it becomes more in size.

[GreenStreet in reply to StayingOptimistic]

Thanks for your reply and good luck with your decision. I think what makes it a difficult one for me is the earlier Nijmegen scan that holds the possibility of it being in the lymph nodes on the other side but it is difficult to argue with your logic.

[PCaWarrior]

Thanks for the detail. I was at a similar point in 2023. 3 soft mets. PSA was around 2.

I did SBRT. Not much radiation. Quick. Head of ASTRO recommended it.

I like the adaptive bical approach. But Why bical and not daro?

Both adaptive plans are on my backup plan list.

You could take out the testosterone pulses if you want. I feel more comfortable swinging T around but some men are in different stages and shouldnt do T willy nilly. And you could remove the NPP. I have been using it for years to keep my joints healthy.

1. Adaptive Darolutamide/BAT.

One week washout period? Darolutamide steps: 0, 150, 300, 450, 600, 750, 900, 1050, 1200.

This will take a little thought.

· A survey of open questions in adaptive therapy: Bridging mathematics and clinical translation | eLife elifesciences.org/articles/...

· Moffitt Study Shows Adaptive Therapy Improves Outcomes, Reduces Care C | Moffitt

moffitt.org/es/newsroom/new...

· Integrating evolutionary dynamics into treatment of metastatic castrate-resistant prostate cancer – PMC ncbi.nlm.nih.gov/pmc/articl...

· “Patients with rising PSA levels without a respective rise in testosterone may indicate an emergent castrate-resistant population (TP). When this occurs, abiraterone is administered to counter this resistant population while leaving the serum testosterone unchanged to bolster the T+ population. “: Towards multi-drug adaptive therapy – PMC ncbi.nlm.nih.gov/pmc/articl...

· Prostate-specific antigen dynamics predict individual responses to intermittent androgen deprivation | Nature Communications nature.com/articles/s41467-...

The plan is not worked out fully. I'd add PSMA-PET scans. Actions to take. The Pic is just an example.

Personally I would not wait for a PSMA-PET scan. Low radiation. I'd at least discuss with my MO and RO.

Adaptive daro and BAT

[Justfor_]

You very well know what my preference would be, so no need to iterate. What I am going to disclose is why/how I got this stance. As a young boy (lad for some in the UK) I made and flew model air planes. At that time pocket money constrains only allowed me the fun of the "free flight", i.e you let it take off and run behind chasing it for when where it will land after the fuel has been consumed. Then there were Radio Controlled planes with 2-4-6-8 "channels" controlling the rudder-elevators-ailerons and engine throttle. At that exact time the first "proportional" systems started to appear in the specialized magazines. What a vast difference!!! No more hard turns or deep dives because the rudder or elevators could only assume 3 positions (straight/flat- hard left/up - hard right/down). Today, 60 years later, anyone can buy a drone that can land on their palm. I wouldn't trust any MO that still lives in the "free flight" era. The clock reads RTK GNSS centimeter accuracy.

[GreenStreet in reply to Justfor_]

I think you are right and I totally buy the logic but in UK it is very difficult to get anything outside of SOC and so cutting loose is difficult. Where I am they are very good at SOC and clinical trials so my issue is if I experiment by going off piste they might kick me out. I suppose I could ask for Bical and work with a pill cutter and then go and get private PSA tests for 2 months to intersperse with the NHS one that is done every 3 months and then bin the excess Bical they give me but I do feel uncomfortable about effectively lying to them.

[GreenStreet in reply to Justfor_]

I guess in my mind I was hoping to get another 3 years before having to try something like this