Advice on Recurrence, please - Advanced Prostate...

Advanced Prostate Cancer

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Advice on Recurrence, please

mistersafety profile image
17 Replies

Hello Everyone,

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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17 Replies
Xavier10 profile image
Xavier10

.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

Tall_Allen profile image
Tall_Allen

You didn't have ADT with your salvage radiation? You have a history of trading QOL in the near-term for much worse QOL later.

mistersafety profile image
mistersafety in reply toTall_Allen

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.

Tall_Allen profile image
Tall_Allen in reply tomistersafety

You have to look at the latest links as many of the articles are updated as new data come in

NanoMRI profile image
NanoMRI

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!

mistersafety profile image
mistersafety in reply toNanoMRI

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.

Kittenlover50 profile image
Kittenlover50

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.

j-o-h-n profile image
j-o-h-n

You're 70 now...... and you need to get a new M.O...... just ask here for references in your location.

Good Luck, Good Health and Good Humor.

j-o-h-n

Hawk56 profile image
Hawk56

well, there are statistics...

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...

Kevin

United States
mistersafety profile image
mistersafety in reply toHawk56

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.

KarkMuzio profile image
KarkMuzio

well put

Kevin...tks.

ron_bucher profile image
ron_bucher

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.

mistersafety profile image
mistersafety in reply toron_bucher

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.

ron_bucher profile image
ron_bucher in reply tomistersafety

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.

Diverguy profile image
Diverguy

I am very pleased with Mayo in Jacksonville

RoseDoc profile image
RoseDoc

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.

mistersafety profile image
mistersafety in reply toRoseDoc

Thank you!

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