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
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GreenStreet
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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.
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.
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.
· 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...
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.
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.
UK here. Surely you can ask for 1 month PSA testing. At the moment I'm not sure if there is an agreed standard of care for the length of time in-between each test.
Yes you would think so however when I tried that in the past I could not get him (and he is very senior) to break his 3 months protocol.Lol. I will ask again thanks and if not can buy 1 privately myself and then present to them but then you get into this different lab nonsense and debate about the data but by the time that resolves itself that might result in a 2 month gap which is certainly better than 3. Thanks for the prompt.
GreenSt - While it might be more difficult to get a more complete hormone lab panel in the UK, I do a 5-test walk-in lab here in the US that gives me: total and free T, PSA (just to =>0.1ng/dL), E2, and DHEA-S. Once a year or so I add DHT and SHBG labs. By overlaying trends over time, those labs give me a much more complete picture of what is going on with my cancer. (I consider something similar should be the MINIMUM that each PCa patient in treatment deserves to get at least once a year - and more often for any major changes in disease state/stage.)
I'm Stage 4 metastatic with multiple and as yet untreated distant (to the prostate bed and pelvic region) lymph node mets. In the past I have been a very good responder to SOC ADT, but have chosen to use a self-directed non-SOC using bical, a 5-ARi, and low dose tamoxifen. I'm not trying to cure anything, just want to keep it under control while maintaining an excellent QOL. I presented research to my MO for the bical and 5-ARi after deciding against RT for the lymph nodes (only IMRT was offered!) - and he has so far been 100% supportive of my treatment program. We did discuss a switch to darolutamide at my Jan appointment. As BAT is one of my two current "Plan B"s (the other being a month or two of lupron), daro would be a better drug to be using in a BAT regime.
Not sure any of this really helps you with your treatment decision. After my BCR#2 and the adoption of the current 3-drug treatment plan, I've stopped obsessing over maintaining an "undetectable" PSA - and have accepted one fluctuating in a 0.2 to 0.4 range over the past two years. When a trend outside of that range is "confirmed"(*), I will consider something different. In the meantime, my QOL is excellent and I'm trying to come up with some sort of adaptive modification to what I am currently doing; i.e. modifying dosages, etc., with the goal of extending its efficacy.
Whatever, you chose to do now and later, may the outcomes be excellent and your QOL unaffected. As always, Stay S&W.
Ciao - cujoe
(*) My personal criteria for defining and confirming a trend is: 3 labs sequentially in the same direction and a fourth one matching the 3-lab trend direction to "confirm" it.
Cujoe great to hear from you and to hear that you are doing so well 👍. Your point on lab panels is very well made and is something that I a looking into. Even within a very good medical institution here there can be a silo mentality. Because I was once part of an add aspirin clinical trial I had a full blood panel commissioned at the same time as my routine PSA test but it was commissioned by the research team. Fortunately it continued to show positive indicators like ALP at ok levels and good NLR ratios (thanks to Patrick’s posts for that) and although all the results are on my hospital app my Onco was unaware of this until I mentioned it. The need to take a holistic view is often underestimated. They want to wait until PSA of 0.4 to 0.5 before they do another PSMA pet scan. I will get a private PSA test in a month and alert them. The next one they have scheduled is 3 months time. To be fair the CyberKnife treatment they gave me to a pelvic lymph node appears to have been administered excellently and has bought my over 3 years of good QOL with low levels of PSA. I am thinking of going back over to Netherlands and see if they can detect anything in lymph nodes. If they can’t I will be tempted to try an adaptive style bicalutamide approach. Best wishes and thanks
GS - In today's world of relatively cheap medical labs, there is little excuse for such narrow testing for cancer patients (outside of that done in clinical trials). Here in the US, one of our two major testing companies, Labcorp, has walk-in facilities in many Walgreen drug stores and independent Urgent Care facilities around the country. Those lab can be purchased at reasonable prices through a number of on-line vendors (with lower prices than purchasing them direct from the lab company.) I currently use the on-line health and supplement company, LEF, to purchase what I expect to need over the subsequent 12 months during their once-a-year 25% sale on lab services. The only shortfall for me is that the local Walgreen's does not have a Labcorp operation, so I have to drive +/- 30 miles to a neighboring town for the blood draw - or do it when I am traveling to or through a place that does have a local facility.
As for the rationale for having more complete hormone and other serum labs to help guide treatment, I asked my MO the relavance of E2 to PCa . . . and he replied (with a straight face), something on the order of: "We don't test for it, so we don't know". (My thought was "Well, maybe you should be testing for it then, No?") Anyway, I've just made the decision since then to test as I feel the need to and do my own research to determine what indicators are relevant to both PCa, my "other cancer" CLL, and my overall heath status. To my MOs credit, when I had my second BCR, he did start ordering a total T lab and more recently a CMP with each visit. (FWI, I can get a full CBC, CMP, and lipid panel for the grand sum of $35 ($26 when on sale) via LEF/Labcorp - so, I imagine the cost to do all these labs in-house at a major cancer center is about 1/10 that cost.
As a final thought, as inflammation (think insulin resistance) is a major contributor to cancer development and progression + a lot of other debilitating medical conditions, testing for inflammation and glucose control also seem essential. As you probably know, in addition to specific labs, like CRP, there are number of inflammation calcs that can also be done from standard CBC/CMP/lipids blood work. I have them mapped into my master lab spreadsheet that goes back to the early 2000s, so they get updated with every new partial or full round of blood work. The ones I have loaded are: N/L ratio, M/L ratio, P/L ratio, PIV, SII, and SIRI. Finding the formulas for the last three and applicable ranges for each can be a challenge, as many seem to have originated out of research for specific conditions other than cancer.
As you wait for your PSA to rise for the PSMA scan, also take some solace in knowing that, like me, you have a past history of being a good responder to SOC. When I had my second BCR in mid 2021, I did a short 10-day test of mono bical 10 mg with some tabs I got from another patient (now "erased"). That 10-day treatment "trial" cut my PSA in half. Based on research I provided and the positive results of that 10-day bical trial, my MO approved a 30 day trial for bical + dutasteride, which further reduced PSA to 0.039.
The Plarify PSMA scan was approved for general use in the US in the fall of 2021 and my MO suggested it would be timely to do one. As in your case, he wanted me to let my PSA rise to >1 ng/dL, so I stopped the B+D treatment and did the scan in early 2022.
When I reviewed the scan results at my cancer center, I was unconvinced that they were fully up to speed with this relatively new (to the US?) scan technology, so I setup a second opinion at a nearby private cancer center that had already been using PSMA in clinical trials prior to the FDA approval for general use. My PSA was something above 1.0 ng/dL when I was scanned and since it was only after my initial review of the scan results that I decided I wanted/needed the second opinion, I had to wait and additional 2 months for that report, during which my PSA had risen to +2.6 ng/dL. To get the PSA down to an undetectable level I asked for and got two single month lupron injections, with the targets being a PSA of =< 0.05 and a T of <10.
Unlike my initial 3 mos of lupron (that got me nearly 4 years of consistent <0.1 PSA and normal T ~ 500-700 range) the 2 month-treatment, while exceeding both lab targets, proved not to be durable - thus, my current 3-drug treatment plan. I should note that the tamoxifen was started when the bical induced gynecomastia became evident as a treatment "bridge" to low-dose breast RT. I've chosen to continue using it as a low-dose 5mg/day treatment to be sure of gynecomastia control and to keep E2 in a ~ 20-30 pg/mL range.
So, I doubt you should lose sleep over the rise for the scan while knowing that you can easily bring the PSA back down with a short SOC or bical treatment. Stay positive and focus on the things you can control. Tomorrow's the future, yesterday's the past, today is a gift, and that's why it's called "the present".
Stay S&W,
Ciao - cujoe
BTW - If you (or anyone else) want to do a deep dive into the causes/effects of insulin resistance, mateobeach recently recommended this Peter Attia podcast "Masterclass" with distinguished diabetes researcher & clinician Dr. Ralph DeFronzo. Highly recommended!
337- Insulin resistance masterclass: The full body impact of metabolic dysfunction, treatment & more
Thanks Cujoe. Specific blood tests unlike some general packages are crazy expensive over here. So for example CRP, PSA and E2 would cost me $225 locally or $504 in London! I daresay some home kits would be cheaper but I think the results would be less reliable. So I will get 3 monthly PSA on the NHS and I will pay for 9 months and probably do annual E2 and CRP and D-Dimer. I can get general bloods/inflammation tests from either an annual battery of tests that I pay for or sometimes on the NHS on a fairly random basis.
Fully agree re inflammation. I run c 4 days a week and do strength training at least twice a week aiming for 3 days. I am reasonably careful on diets and take a fair few supplements. I did the Zoe test with a glucose monitor so I could track my response to food/drink consumption in real time for a couple of weeks. It is interesting how changing the order of what you eat and say having a brisk walk after a meal can help level off spikes. The programme also gives you a score for foods based on how you react on anindivdual basis. I am generally ok processing and absorbing fats but I need to watch sugars etc.
Anyway I will do an interim PSA in a months time. Stay safe too
GS - Thanks for first-person account of your ZOE experience. Via several long Rich Roll podcasts and his book, I first got fully clued in to the importance of fiber-fed gut health from this guy, who is now Zoe-affiliated.
The ordering of foods and interaction with exercise are very interesting insights. doing some individual testing of glucose response using glucose meter is on my "get" to-do list. Every case of CGM use that i have seen reports individualized responses to the same foods. Those are also often reported to be in direct opposition to what is the "expected" response.
Thanks for the share - Seems with wearables becoming more prevalent, we will eventually be able to get all sorts of "constant monitoring".
yes both my wife and I did Zoe for about 3 months which was enough to learn a reasonable amount. We both had different reactions to the same food. You get individual lists of foods which are scored and colour coded to indicate how well you metabolise . Gut diversity is very important too as you say
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E2 patch during ADT is helping a lot! 
No Longer Undetectable
