Hi all, my family is in a predicament. My dad has prostate cancer that keeps coming back.
Several years after treating his prostate with FLA, he discovered cancer in the seminal vesicle and lymph node (no longer in the prostate - indicating there was microscopic cancer that had spread beyond the initial treatment site).
Then he treated the seminal vesicle and lymph node (and I think generally around the pelvic bed) with proton radiation, and went on hormone therapy.
Now this is the problem: he waited a while to retest, and now his PSMA scan does not show cancer, but his PSA is rising and it's even doubling every month (<0.006 ng/mL in May, 0.022 in August, 0.038 in September, 0.063 in October, 0.095 in December).
His doctor told us that this most likely means he still has microscopic cancer, but since the tumors won't show up in his PSMA scan and we don't know where it is yet, there's nothing we can do about it and all we can do is wait.
But I call BS. We don't WANT to wait until new tumors shows up in the PSMA, or in his blood or in his bones, because by then it would be even harder to treat! This feels like a sadistic game of wack-a-mole. We want to treat the microscopic cancer before it turns into something worse!
We are willing to do anything to put my dad into full remission. We looked into Lutetium 177 but it's reserved for more advanced cases (though we don't mind going abroad or paying out of pocket if necessary). But I also read that it's not good for microscopic cancers, only for small to medium sized tumors. Someone had mentioned clinical trials of alpha emitter drugs but I also don't know if he'll be eligible for those clinical trials and I worry about the toxicity of those treatments.
Does anyone have any thoughts on things we can do? Thanks everyone!!
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almondjoy1997
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I think you have to wait until a proper PSMA scan will or potentially detect anything… .2 psa min as you seem proactive or .5 or more otherwise .. maybe try to enjoy the time beforehand and spread some positivity and joy towards him and you. Take a trip together if possible. He may be ok and this stress is not good for him or you. Take care be positive.
You cannot treat invisible cancer with radiation or Lutetium 177. Lutetium 177 will only treat the lesions you see with a PSMA PET/CT. All you can currently do is hormone therapy.
Here is what I do with my uPSA holding 0.03X. Frequent PSA testing as your dad is doing. I find liquid blood biopsy testing very useful; and when NED very calming. I also have mpMRI along with PSMA scans - mine have also been clear. Next I will be getting Mayo Clinic Choline PET CT and/or fluciclovine PET CT for comparisons.
As I share, seven years ago I traveled to Europe for imaging - the Ferrotran nanoparticle MRI. This method successfully identified multiple mets while the PSMA PET was clear (my uPSA was 0.13). Availability is still limited, you can look into it further here - splmed.com (there is English translation). Hope this helps! All the best!
May I ask what treatment you were given once your mets were found? And, were they resolved?
My husband was successfully treated w Triple Therapy for metastatic disease three years ago. He is now on intermittent mono therapy w Xtandi.
His MO has let his PSA get as high as 12 before restarting treatment. Multiple PSMA scans have shown nothing but minor activity in the prostate.
His MO also says there is nothing else that can be done besides continuing on this path.
I keep thinking maybe his is not PSMA-avid and perhaps he should get other types of scans. His MO dismisses my concerns as far as that goes. She says the PSA rise just has to be from micro-mets and that the CT part of the scan would show mets if there are any that can be seen but I have a hard time with that.
Anyway - just wondering what your path was/will be after mets were found?
When I image again for PC, if the Ferrotran nanoMRI is still not available to me, I will be having fluciclovine and/or Mayo's Choline to compare to PSMA findings; my last there PSMAs have been clear for PC, as was the one compared to the nanoMRI.
The treatment path I chose after the nanoMRI imaging found multiple pelvic mets was salvage extended pelvic lymph node surgery using the frozen section pathology method. The first nodes taken were the common iliac and they were immediately biopsied - essentially at my surgical table side. Cancer was confirmed which directed the dissection path. Because I had had an RP I can relay on uPSA <0.010 as best indicator. My post ePLND nadir was indeed <0.010. Resolved? My feeling then, coming on seven years ago, and today, is that yes the surgery resolved the mets identified by imaging and a few more that were not indicated on the imaging. My nadir of <0.010 indicated perhaps all the remaining tumor burden was resolved. Although my uPSA has very slowly creeped up to 0.03X range over the past seven years, all imaging and liquid blood biopsy testing since then have been NED.
Although I did not consider myself cured, and still do not, I am most grateful for my outcome to date and not (yet) needing ADT. I accept the premise that cancer stem cells, senescent cells, and perhaps cells by other names remain and present a threat. This is why I carry on with very regular uPSA testing, annual imaging and annual liquid blood biopsy testing. I also have a regime of supplements, follow a well defined diet (although there are days of unrestricted pleasures - eating out with grandkids for example :), and I exercise extensively.
Did he have focal FLA or whole gland FLA? And when cancer was found in his seminal vesicles, was it spot treated with protons or was the whole gland treated? And when cancerous lymph nodes were found, did he have radiation to the entire pelvic lymph node area (and how high?) or just to those lymph nodes? If focal, and spot treated,the PSA may just be benign in his prostate.
I wonder if a test for Circulating Tumor Cells (CTC test) would be informative?
I know that ADT can keep prostate cancer growth suppressed for an indeterminate length of time. Usually 18-24 months but some last longer. I know of one case where estradiol (which is not FDA-approved as standard of care, by the way) has kept one man's prostate cancer progression-free for 20 years, another for 6 years and another for 4 years. There are many oncologists using E2, estradiol, in this manner. And side effects are less deleterious than most other agents of ADT (fatigue, muscle wasting and loss of libido primarily, but missing from the adverse effects are osteoporosis, insulin resistance, hot flashes, lipid elevations and elevation of cardio-vascular risks). I am using E2 injections and my PSA dropped to 0.015 ng/mL and is staying there since August to December 2024 and shows no signs of increasing at this point.
In order to reach above a minimally therapeutic level (I figured 400 or higher would be my target level and titrate down from there) I would need 4 patches at a time. I got up to seven patches and rarely got above 200 ng/mL. I suspect the Orgovyx I was taking at the same time contributed to this, but my pharmacist said it would not.
The same pharmacist (who specializes in transgender patients) said that some of her trans-female clients convert estradiol into estrone (E2 into E1), thus reducing effectiveness (E1 is less effective at shutting down testosterone production than E2, but blocks up the receptors, making the E2 unavailable to those receptors). But those clients do respond well to injections of estradiol cypionate. (I am using estradiol valerate because cypionate is in short supply.)
Wearing 7 patches left my upper buttocks fully carpeted with patches, which was terribly inconvenient.
A daily application of gel may be a better alternative, but my prescribing doctor is more familiar with injectios, so I went with that recommendation.
Injections are about one-third the cost of patches. (And one-tenth the cost of Orgovyx)
While the Orgovyx is zero cost to me and the injections cose about $75 a month, the lesser side effects of the E2 injections over Orgovyx is worth it to me, even though my file is now noted as “Against Medical Advice (AMA)” since E2 is still not FDA approved as an agent of Androgen Deprivaton Therapy. But my pharmacist testifies, “I sure as shootin’ know how to suppress a man’s testosterone.” And my oncologist cannot argue that E2 is not suppressing my T and PSA.
It seems the PATCH trial results showed this (high dose Estradiol) equally effective as Lupron /Orgovyx without as many side effects. Will this start to be prescribed more as SOC? Seems it should be.
I know of no pharmaceutical company making any effort to get FDA approval. The process involves making an application and going through regulatory processes and is not free. Without a groundswell of citizens clamoring for approval, who will step up?
The second sentence of the above paragraph is a (more or less) speculation.
The theory is that without inexorable public pressure, estradiol as an agent of ADT will never be taken up by the FDA. This, along with other low-profit but superior treatments (and perhaps cures). Of course, this is tantamount to a conspiracy theory.
Putting that aside, we depend on the profit motive to induce companies to create new and effective therapies and depend on the good will and honor of people in power to do the same. And the two impulses are not always in alignment.
Many new treatments have been instituted first in other countries than the U.S.A. The U.S. is not always first to adopt (or even invent) new technologies. A bit embarrassing to admit.
I read that the U.K.'s regulatory agency is reluctant to approve estradiol as an agent of ADT, just as the FDA is here. Pity. What is supposed to keep us patients safe from charlatans' ineffective or unsafe remedies also keeps us from getting effective new (or in this case, revamped) effective treatments which are superior to current SoC.
It’s annoying neither country will jump on this as it seems a better option with less side effects for similar outcomes. The trial lasted 14 years!! What more do they want!!! Will discuss with MO next week. Happy New Year!
what they are doing is pretty standard. The cancer is somewhere in his body. The hope is that it is limited to one spot that might be curable but the odds are not good. He is where most of us are on this site. He could just go back on anti-testosterone therapy now. If he did the cancer would undoubtably shrink and the PSA would likely go to zero. This is almost never curative but would likely give him several years before doing other therapies. He can wait until the site is know and maybe radiate it and then go back on anti testosterone therapy for a period of time the stop it to see if it was curative. It is frustrating because you are focused on cure and it does not seem like the approaches will likely give you cure. I was in the same place at that time. I can relate.
More prostate cancer patients are including fenbendazole in their options, whether or not they are on active surveillance or an actual treatment modality. If you research fenben and Prostate cancer you may find some answers. Fenben is not FDA approved, but a related drug is, so there may be an option that works for you.
Thanks.... I am actually using FenBendazole to shrink a basal cell carcinoma, and it appears to work... will know in a few weeks when my Dr does a second biopsy to see if the tumor has disappeared.... I also have prostate cancer discovered following a Holep procedure I had in June. No biopsy, so no grading... the basal cell precludes me from having any exposure to radiation due to its rapid growth on my nose.... 4 preceding surgeries have angered the micro-nodule Gods to become aggressive and invasive. A vicious circle of events now with nerves invaded as well.... will see if F/B works!
Your doctor is correct, PSMA scans are not very useful until PSA reaches 0.2, at that point have him get scanned and see what you’re dealing with. SBRT could be an option.
Hi Ed, is that Dr Sartor's action point? A lot of docs (mine included) say 0.2 gives you less than a 50% chance of seeing the cancer. He recommends waiting until at least 0.5 and better 1.0. I suppose someone could start at 0.2 and, if with a supportive doc like yours', just wait and retest later if the initial test did not show anything. Is that the thinking?
Yes that is his action point. Twice over the past two years I’ve gotten a scan when I hit 0.2 and both times it showed a tumor on a rib - different ribs. I treated with SBRT and PSA fell to almost undetectable. I’m currently in another rise and I suspect I will exceed the 0.2 threshold again. I’ve got labs scheduled for Friday so we’ll see what they show. Sartor said I can continue playing whack a mole indefinitely depending on location and tumor count. I’m hoping to save other treatments for down the road. After those there’s not too much left.
Well, he is Advanced PCa, likely not "curable" though possibly manageable as a "chronic disease." Most are on the side of the latter. Some on this forum actively manage their PCa at the PSA levels you provide, others wait, I am in the latter.
The question now becomes when to treat, with what and for how long. That involves tradeoffs and risks.
The tradeoffs are the side effects of treatment, well known in the community. The risk, wait too long and our PCa spreads, worse case, bones, organs. Also, with treatment comes adaptation by PCa, potentially resistance.
It is not too surprising his recurrence does not show in the PSMA PET CT scans. below .5 there is statistically a roughly one-third probability of showing where the PCa is. Even if it does, given micro-metastatic PCa, the scan shows "all,.." In part, that is why systemic therapy is generally used in Advanced PCa when using SBRT to a "manageable" number of sites identified in PSMA scans.
So, each of us decides based on our clinical history and tolerance for the side effects, what clinical data constitutes a decision to treat. For me and my medical team it is:
Three or more consecutive increases in PSA spaced three months apart.
PSA between .5-1.0.
The second one triggers the decision to image using PSMA.
Informed by that data. we decide when to treat, with what, and for how long.
I came off treatment in April this year. Recent PSA tests show .01 then .03. Does that mean my PCa is "on the move...?" Possibly. Then again, it could be just variation in the lab though I use the same one and follow the same pre-draw routine. When my oncologist and I meet following those labs we talk about vacations, sports, good things going on in our lives and close with "see you in three months." Why, because neither he nor I are concerned at those levels. I use the analogy that it may be like driving in western Kansas or eastern Colorado where you can see the headlight of a train far in the distance, you know the train is coming but it will take awhile, I don't need to hurry to get across the tracks.
Many of us would disagree with the statement " since the tumors won't show up in his PSMA scan and we don't know where it is yet, there's nothing we can do about it and all we can do is wait..." As I've said, you can treat anytime, question is should you?"
Life off treatment is not that I can do more, I just feel better doing it. Gone are the dreaded side effects, hot flashes, fatigue, muscle and joint stiffness, genitalia shrinkage.
Mine is a high risk PCa - GS, GG, PSADT and PSAV, time to BCR
So, discuss with your father and his medical team, consider developing and agreeing to some clinical criteria that would trigger certain actions - imaging, though only if imaging may inform the treatment decision, generally it does,
the PSMA scam is a big improvement over past imaging . Not advising what to do, but I just read an article in the prostate support page of FB where research has indicated (counterintuitively I might add) that with very low PSA the cancer will spread while using testosterone therapy the cancer will stabilize. You will have to research yourself, as I will do, how it affects biochemical resurgence,
Can you please clarify or restate your sentence "Not advising what to do, but I just read an article in the prostate support page of FB where research has indicated (counterintuitively I might add) that with very low PSA the cancer will spread while using testosterone therapy the cancer will stabilize. "
ask for a liquid biopsy and get a second or third opinion at a recognized National Cancer Center. Also, he should probably be on some form of ADT. Is he seeing a medical oncologist that specializes in prostate cancer?
first off, fantastic news! I’m sure there are many of us here who would trade scan results with your dad. With that said, I get the anxiety. You want certainty and a guaranteed cure status. Thats the holy grail and who could blame you. I just fear that what your looking for does not exists yet. You may get a clinic to accept you in a immuno-therapy trial (like provenge or Janx-007) in an attempt to thwart off future progression like a vaccine, but there’s a lot of conditions and pre-reqs involved and I’m guessing a clinic is going to look at your dads case and say…” your one of the lucky ones, why do you want you to put yourself through this before you have to?” I don’t know your case well enough to tell you one way or the other if it’s even an option but that’s what my initial thought was when I read your post.
If it were me, I’d probably enjoy getting my life back. Stick to healthy lifestyle choices, get my groove on again and put the fear and anxiety where it belongs. In the trash. I’d be off all HT therapies and I’d do routine check ins every 3-6mo to check my #’s. I’d probably ask my mo for a scan once psa went over .10, but I wouldn’t be overly concerned. Unless something changed or changes, pre-emptive medical treatment options do not exist. (Please someone correct me if I’m wrong)
The only preemptive medicine I know of is of the epigenetic realm in the form of diet, lifestyle and stress management.
I know this not exactly the answer your looking for as all you want is the “all clear” sign, but trust me when I say your soooooooo very lucky. Don’t squander the moment stressing out about potential micros.
You just summed up my approach. Unless you can really identify a “real” actionable issue to take action on why not just enjoy life. We all have an unknown expiration date.
For some us there is an immediate cure, for others a tentative cure and for some it is just a slow ride downhill until there are no other options. You have no control which bucket you will find yourself in. Worrying will not change the outcome.
So it seems like you're willing to do what's necessary, does that mean you're being treated at at one of the top cancer hospitals?
The PSA is still "undetectable" I hate that term because it's old and out of date. But it's low, and by the growth rate it looks like you'll be above 0.100 in January and possibly 0.200 in March.
So you be there very quickly, you might as well get a PSMA scan scheduled now as depending where you go the schedule might be three months out.
Personally I would NOT go on ADT, that will prevent you from finding it with a scan. So you want to see it and kill it, not cover it up with sand and pretend it went away.
Now my MAYO doctor explained to me that prostate cancer doesn't spread like you're fearful of. Cancer has got to first plant itself somewhere and grow greatly in size before it will spin off bits to lodge somewhere else. Cancer is actually pretty delicate in the bloodstream and passing through the heart the turbulence will kill the majority of it.
So you've got time.
What of course you want to stop is any new spreading from the "mother ship" the prostate. And just deal with killing what got out initially.
I had my prostate removed to prevent that as my primary treatment, and my best surgeon at the number one cancer hospital in the US said he was going to take it out even if he found spread to lymph nodes. That is a tough way to go with a long recovery but it was to give me my best chance of surviving PC. I got through it, but it was had getting continate again.
So I stopped any spread from the mother ship.
So don't let anyone tell you that say three is the limit of metastasis. I had five initially and IMRT whole pelvic took care of all of those five. I did two years of ADT with the whole pelvic prostate bed radiation.
Then a year later off ADT one lymph node still in the pelvis show up, it was in a very sensitive area so it wasn't treated with the whole pelvic radiation. I had SBRT 3 sessions to it, every session the radiation was scanned and replanned, and scans were again done have way through each radiation.
A year later a lymph node on the other side showed up, that was hit by SBRT this August, so my PSA is dropping hopefully heading to "undetectable" or stable. Interestingly this lymph node wasn't detectable a year earlier but was predicted by special software and equipment at MAYO. So it was "expected" and delt with when it actually showed.
The more locations you have cancer at, the higher the PSA will need to be to find them.
At one time a few years ago I was accepted at a German hospital that was developing a new PC scan using zirconium. It is far more sensitive than the PSMA scan. However no doctor or facility in the US would take action on the results of that scan. I guess if I wanted to have the radiation treatment in Germany it would have worked out. The cost was going to be like $2,400 for that scan and stay in their hospital which was a three day process.
If your interested in any info on anything I mentioned I can provide it.
Would you please be kind enough to update your dear father's bio. You may want to glean some of your post above and copy/past it in his bio. If you wish include his age and his location (city/state) and etc. All info is voluntary but it helps him/you and helps us too. Thank you. Let's hope that 2025 is a good year for your dad/you and for all of our members. Remember to post like you vote, early and often.
perhaps he could try going back to ADT on an intermittent basis? I am sure that would help bring it back down. It's still below zero, so personally, I wouldn't panic yet.
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Seminal Vesicle Invasion
My first year with prostate cancer
Advanced prostate cancer 
Advance prostate cancer metastasis to lung and lymph nodes
Hopkins doctor says T2a but said RP not possible .
