Could do with some good advice while I try to become established with a Medical Oncologist specializing in prostate cancer. Just learned that my RO, who did my salvage radiation in October 2019 and whom I trusted (and understood my wishes), has retired.
PSA is currently rising 5+ years after salvage radiation; see my profile for all that happened before that. Recent history:
Downward PSA trend from 4.7 ( Gleason 4+4 in <5% of cores) in July 2019, prior to salvage radiation
nadir of .03 from July 2022 through January 2023 (yes, it took almost 3 yrs to get to the nadir)
.09 in September 2024
.1 in December 2024
.16 in March 2025
When is it time for a PSMA PET scan? I’ve read the conventional advice for men who still have a prostate (that’s me) is to wait until PSA rises to 2.0 beyond the nadir. I’ve also read a number of accounts from men who have had PSMA PET scans that show mets at PSA levels in the vicinity of .2.
When is it time to declare “recurrence” and start systemic treatment? Is it better to start ADT sooner, wait until PSMA PET definitively shows mets or wait until some future PSA value?
I’ve always chosen treatment that favored quality of life over length of life so have (mostly) knowingly accepted the risks associated with avoiding ADT and its likely side effects. This has worked out for me for the past 5+ years. In light of rising PSA and likely recurrence, it’s time for some reevaluation. Thanks in advance for your consideration & advice.
–Mr Safety
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.5 basically. Some say .2 is ok but I would wait longer. There's a decent argument 1.0 is better but insurance will cover .5 for sure. I had one at .57 and it came back clear. It's hard to say. Your prostate produces benign PSA. Some of it has to do with the level of testosterone
Hi there, TA – About PET scans at low PSA values … Looked at your blog on PET scans (prostatecancer.news/2018/07... and prostatecancer.news/search?.... Do you have more recent data, especially now that there seems to be a clear favorite PET scan? For reporting detection of mets at low PSA values, does this data differentiate between guys who have had RP (no prostate) and those who have had other treatment (still have a prostate)?
Is it still correct that there’s no generally accepted definition for BCR after second biochemical recurrence (this was helpful: prostatecancer.news/2019/08...? Also helpful was your report on short-term Androgen annihilation from the PRESTO trial (prostatecancer.news/search/.... Is there any additional data for guys like me whose PSA is rising but still less than .5 ng/ml? I see the Emmett data (small sample size) reported 50% detection rate for PSA < .2.
Last but not least, any more recent info on your post titled “Recurrent PC (non-metastatic, hormone sensitive) after curative therapies exhausted? Here are some clinical trials to look at”?
Thanks in advance for your work helping even guys like me whose treatment decision you don’t agree with.
Offering my considerations; not advice nor judgement of your decisions. At the time of my Dx I accepted I faced strong risk my cancer was already out; turned out it was. I chose for myself the PSA value I would use for cancer remaining after primary treatment, and the value I would use for my next treatment(s). Note, my focus since Dx is on reduction of tumor burden and if it comes to it, deferring ADT/CR/chemo for as long as possible.
As I chose RP, the value I relied on as best indicator was/is uPSA <0.010, and above as cancer likely remains. My RP nadir was 0.051 - I accepted cancer remained.
Prior to my RP I decided on 0.1 for the value at which I would treat again. So, I did my salvage RT (no ADT) to bed at 0.1 and my third treatment, salvage extended pelvic lymph node surgery, when my uPSA was back up to 0.1 following unsuccessful salvage RT.
I choose to image well ahead of most folks thinking as I do not want to give this beast time and obscurity. After my unsuccessful salvage RT I successfully imaged at 0.093 - but had to go to Europe for that imaging method.
Following my salvage lymph node surgery I began imaging and liquid blood biopsy (LBB) testing at 0.030. Yes, I am well aware of all the reasons to wait but my thinking is if my small amount of remaining cancer is concentrated in no more than a couple of mets, imaging just might pick it up. And if it is in blood stream there is a reasonable chance LLB will so indicate. I hope this helps. All the best!
Hey there, NanoMRI. Thanks very much for your reply -- very helpful. What an interesting and unique path! Looked at your profile; what made you choose bicalutamide instead of more traditional ADT? Do you have a USA based medical oncologist and, if so, how did you get him/her to go along with your treatment plan? Did insurance cover your treatment in Europe or did you pay out of pocket? Would you like to say more about how you determined the PSA thresholds you established for treatment? Best wishes & thanks again, I very much appreciate your willingness to share.
Hey there mister safety. Appreciate your kind words and respectful, thoughtful questions deserving of thoughtful replies. I expect to fully reply tomorrow. As a side note, in 2015 I looked into HIFU with Professor Mark Emberton University College Hospital and Cyberknife with Professor van As of Royal Marsden; both in London, England. They recommended surgery based on mpMRI showing insufficient margins for their methods.
Welcome your and others thoughts. A bit lengthy, but deep subjects you raised.
Bicalutamide – I accepted when I took it post my third treatment, salvage ePLND, that I would never know whether it helped. If my uPSA was to never rise above >0.010 and I was ‘cured’, did the bicalutamide make the difference? If my uPSA began to rise, as mine did, proof enough it is not curative treatment – but did the use slow the rise or trigger a mutation that might never became aggressive? No way to know.
My use of bicalutamide was a compromise, a concession really, with my US medical team - the urologist who did my RP, RO who did my salvage RT and consultant MO. They recommend ADT concurrent with my salvage RT and strongly encouraged STAMPEDE trial with chemo following salvage RT failure (that was in 2017/2018). Being young and otherwise very healthy and fit, and not seeing ADT as convincingly curative, I said no. That led to my salvage ePLND in Europe. After that, my US team again encouraged, pressed really, STAMPEDE with chemo. Although my post ePLND uPSA nadir was <0.010 I accepted their concerns, but I just was not willing to take on the ADT risks with <0.010 outcome. But they pressed.
I went back to medical team in Europe, urologist in Belgium and MO at Royal Marsden in London, England. They introduced me to idea of bicalutamide without Chemo for one year; as added insurance. Bicalutamide is not ADT but it has an established record of use and success as a T blocker with fewer near-term and long-term side effects. After lots of reading, I brought this up with US team – they were receptive but preferred Lupon. I did not see that Lupron would improve my chances for cure nor longer-term durable remission. I also had concerns over the influence of the financial component of Lupron (office visits, profit margins, etc). Bicalutamide was $1 a day, self-administered, no doc visit needed. So, I chose bicalutamide. My team agreed and wrote the script. I picked up my monthly supply at local pharmacies along my RV travels and took my daily dose.
Regarding the salvage ePLND, I asked my US team if they would perform it or had a US referral. They said no to both and were not particularly supportive of this treatment strategy. Fortunately, I did not need their approval outside of the US. I paid for my European medical expenses out of pocket, but boy are they reasonable. In fact, less than a 20% down payment on retirement Corvette - which I can live without
The PSA thresholds I rely on are based on my having had RP and that there should really be no measurable PSA and certainly not a rising trend after the surgery if all the cancer was removed. In my research, I found several papers citing <0.010 as best indicator, including one from Hopkins. And numerous papers cite 0.030 as threshold to recognize cancer remains. When I looked into evidence supporting 0.2 as recurrence I could not find a single paper citing evidence that below 0.2 is unequivocally Not cancer. In-other-words, 0.199 is not cancer but 0.20 is? Then, when you consider some centers and docs use 0.1 as the post RP threshold, how does one believe in 0.2, or IMO even 0.1? Add to this my RP nadir was 0.051 and I tracked its slow steady rise, and then my six cancerous pelvic lymph nodes at 0.131, simple common sense tells me it has to be cancer well below 0.1. Twice I waited for my uPSA to rise to 0.1 before treatment which I now see as waiting too long. Given my post RP nadir was 0.051 this is my new treatment threshold and 0.030 is the value I choose to start imaging and liquid blood biopsy testing.
good morning. .2 is usually considered recurrance. Sometimes docs like to wait till .4 for a PSMA as it shows up better. They did do one at .33 on my husband, kind of my convincing, and it did show in lymph in chest.
Those generally say below .5 the likelihood that the scan shows anything is about 1/3, between .5-1.0, 2/3 and increase obviously from there.
If I understand correctly, PSADT and PSAV can influence the scan's sensitivity, aka, increase it with faster PSADT and PSAV.
There is always the insurance factor, what will they "approve," and if it comes back negative, what will they "approve" after that?
I guess the question for you to discuss with your radiologist and oncologist is there any risk in treatment outcomes by waiting to increase your statistical odds of locating the recurrence?
For myself and my medical team our "confortableness", or "sweet spot" is between .5-1.0.
Another question to discuss with your medical team is what treatment decision is everyone thinking about?
As you say, you try to avoid ADT, then it may be MDT only, if so, then you need imaging to find the recurrence. There are some clinical trials that indicate MDT without systemic therapy may delay the need for systemic therapy for oligo-metastatic PCa.
Keep in mind micro-metastatic PCa too small to be located by PSMA imaging may necessitate systemic therapy. Systemic therapy could be ADT+ARI for a defined period, what that defined period is you may not clarify or consensus on.
You could also decide to do MDT plus ADT for a defined period, again what that defined period is does not seem to have consensus, I generally see literature that indicates 6-12 months for oligo-metastatic PCa.
There are still other options, you could do ARI monotherapy such as in the EMBARK trial. Then there is the PATCH trial.:.
Choices...some depend on clinical data informed by imaging, others depending on level of comfortability letting PSA rise knowing that each day is a day not on treatment.
As I have said before, from my perspective and experience there are no absolute "right" decisions, there are the best decisions made through shared decision making with your medical team, your clinical data and your individual priorities.
You can go though the NCCN guidelines, that is the "science." They are population based and historical given the pace of medical research. So, the art of medicine is applying the science to your clinical data.
During my last treatment my oncologist advocated for 24 months of ADT plus MDT, add an ARI if needed. My counter was six months ADT + MDT. We settled on 12, then decide from there. My radiologist told me that at the tumor boards the oncologists were all over the map on the length of ADT and reasoning.
Let us know what you and your medical team decide.!
But, to answer your question, what would I do with that clinical data? I would wait for my PSA to rise to between .5-1.0, image, if it shows where the recurrence is, do SBRT MDT and add 6-12 months systemic therapy.
Remember I am not a trained, educated, licensed or board certified...
Thanks for your excellent & comprehensive summary and advice, Hawk56. Do I understand correctly that you did ARI therapy for a while? Dutasteride or finasteride or something else (I didn’t know that was a thing). How was it & how did it compare to Orgovyx – results, side effects? Also, have you been happy with your MO? Is s/he at Mayo? Have you been happy with the car you’ve received; do you recommend? Best wishes; thanks again.
Have not done ARI, in both triplet therapy (ADT, Taxotere, WPLN IMRT), and doublet therapy (SBRT and ADT) medical team decided to wait and see my response to treatment and add an ARI only if PSA did not drop to undetectable in the first 3-6 months, it did, so based on our decision criteria about whether to add an ARI, we chose not to. Right decision, we'll never know, good decision, I say yes.
I am happy with my MO, an active listener, shared decision making. He is part of the Kansas University Medical System. Funny story, when I started with him, he called me on a Saturday to give me my lab results, PSA, what could I say, appreciate that knowing I had already see it on the Portal. It's the thought that counts...another time he was going to be out of town on vacation when my next labs were due and instructed his nurse to call me with the results, I looked at her, smiled, she knew it would not be necessary...
I have been happy with my care, but then again, I have a medical team that are active listeners and share in the decision making.
Feel free to review my bio. I credit chemo for 4+ years of freedom from ADT. Then PSMA scan showed one tumor at PSA 0.45 that RO radiated to get my PSA undetectable again without ADT.
Wouldn’t hurt to have two MO’s. Every case is unique, so what works for someone else may not work for you.
Hi Ron. Wow, you’ve had a long haul; thanks for responding. Looked at your profile. What made you choose chemo back in 2016 (you were kind of a pioneer, yes)? The ArteraAI test is a fascinating development. Looks like it’s designed for initial diagnosis not recurrence, right? Did you have this test and, if so, how did the results inform your decision not to have more ADT? I’m not enough of a statistician to evaluate the model’s training data; any thoughts on this? I wonder why we haven’t heard more about it. Last question: have you been happy with the MOs you’ve used? Any recommendations? Thanks again and very best to you.
2016 was my second recurrence which triggered the addition of Mark Scholz to my medical team. My local MO in the SF bay area and Dr. Scholz share many patients. The idea for chemo came from Dr. Scholz, based on my desire to treat my recurrences early and aggressively. He said 1) chemo would kill the tiniest tumors regardless of where they were in my body, and 2) the most likely place I might have tumors too large for chemo to handle would be in my lymph nodes above the local area (my local area had previously been radiated), which we radiated prophylactically shortly after the chemo. He added Lupron as the third leg of the triplet therapy without much discussion, so in my case I'm not sure whether ADT was really necessary or not (I had not had any ADT with my original salvage radiation which gave me 7.5 years of undetectable PSA).
I have not used Artera, and am skeptical of using AI for a several reasons - not the least of which is that the most important thing I've learned from my personal experience and interacting with hundreds of guys with PCa is that every situation is truly unique. What might work for "most" guys may not be right for me (for example my desire for early and aggressive treatments and my strong aversion to ADT my be more extreme than "most" guys).
Mark Scholz is one of the world's best prostate cancer oncologists because that is all he has done for more than 30 years. His fees and the travel to visit him have been well worth it to me, and I feel he is deeply committed to my quality and quantity of life. BTW he is seeing a lot of success using Metastasis Directed Therapy with PSMA scans and SBRT - often without ADT. That is my current approach, and recently my first attempt at it has been successful.
Not to be argumentative but to share experience. I consulted with Scholtz over 7 years ago, by phone from Europe, following successful Ferrotran nanoMRI. ADT and chemo were his written recommendation. He also recommended I return from Europe to my hometown, Austin, Texas, to have one more uPSA test at my home-base lab. He was strongly against the salvage extended pelvic lymph node surgery I chose. All the best to all of us!
of course, I appreciate warranted question. I expanded my bio for clarity. Actually , it was 13 months - Initial Dx Dec 2016 with RP Jan 2018. It took me 13 months because of my uncertainties with cancer grade and best treatment. Initial G was 3+3 which conflicted with MRI opinions. Took time to get 2nd and 3rd path opinions (3+4) and 2nd 'better' MRI and 2nd opinions. More time slipped by then I learned of genomic testing which took additional time. In the mix I went back to Europe for consultations on HIFU and CyberKnife. Those efforts steered me to surgery so back home to Texas and more opinions and surgeon shopping. In hindsight I am convinced my cancer was out before Dx so not clear the primary treatment delay put me at greater risk. But, I then took nine months post RP nadir 0.051 for salvage RT then eleven months post salvage RT nadir 0.074 for salvage ePLND.
Do I wish I had acted faster - yes. Far more crucial urologist and I should not have screwed up my self-directed screening and missed my cancer for what was certainly years.
Most would not recommend a PSMA PET scan until your PSA is at least 0.2. If the scan shows an isolated lymph node, it is possible to ablate that using cryo/MRI or SBRT. Bear in mind that there are, most likely, micrometastatic cells that do not show on scan.
Get a good MO at a recognized center of excellence for PCa and follow their advice. It would seem that ADT may be in your near future. Anything more than that would be determined by your scan results. It pays to be aggressive early on as the beast is harder to treat in later stages.
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PSA after SBRT to T7
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