Thanks to all who responded yesterday
My Mo said he would schedule a PSMA PET scan if and when my PSA reaches 0.5 instead of 2.0.
His thought on my PSA at 0.14 one year post ADT, was very positive, especially because I spent a lot of time with the nadir at < 0.01.
46 months post DX I am feeling very fortunate. I am encouraged that I will in fact be around for the eventual cure or renewable remission. So many potentially great therapies in trials.
I was told .5 as well but as I said, the insurance company said no. Good luck with that, if your not on an Advantage plan you may get what he said and less so if you are IMO. I may be wrong, in the end for me I doubt waiting for a PSA of 2 changed anything except being relatively sure where the cancer was. I would hate to take one at .5 and then have to take a other at 2. I was also required to get a CT and a bone scan prior to the approval for Pylarify. Both were negative.
MO said I would have no trouble with Medicare @ 0.5
That's good, 3 more years and I'll finally have good insurance.
My husband’s PSA and T rose much faster than yours when off the drugs. The scan at .6 did reveal a new pelvic bone met…and he had SBRT. Told he could try intermittent again if he became Undectable again, which he has. He is On daraludamide and Lupron again. But told only 30% chance of it not recurring if he went off drugs again. He plans to stay on the drugs.
Me too. The CT and bone scan requirement seemed silly and just an added cost before I could get approved for an axumin scan.
My thoughts exactly, but we need to play the game. What was odd to me was it seemed to catch my Dr by surprise as well, at which point I saw my insurance as inferior to others. Where I live it's about the best I can get and it is not cheap but turns out I was lucky to have it.
I know that it isn't polite to point out typos but for a numbers guy like me it is just impossible to pretend not noticing it.
Fixed
Take a look at Tall Allens blog post on the accuracy of these PSMA test at such low PSA levels
He will give me a 2nd PSMA PET @ 2.0
so I see no risk in having one @ 0.5
I had one at .55. Came back clear. T will cause PSA to rise, doesn't necessarily mean cancer is coming back. As TA has noted there is a lot of benign PSA in the prostate, which you still have. Testosterone stimulates it.
Hadn't seen before, but recently saw something about increased risk of kidney damage when these tests are repeated frequently. Haven't done further research on that...yet.
Can you please provide the link to TA's post? Just had a PSMA PET with a negligible PSA but uptake was high.....
You will have to search for it. Or ask him here.
Probably ask him directly what he thinks about your situation.
It could be aggressive small cell prostate cancer.
Ask your doc if he thinks that's what it is.
If it is, it's not so good.
I have posted inumerable times that at low PSA, PSADT is a better predictor for a positive PSMA detection.
I have low Psa with uptake also on psma. Psa was .3 when it detected Mets. How low your Psa with the detected Mets ?
Congratulations on the news and extended vacation.
My PSA is also starting to rise 5 years after salvage radiation and 6 months ADT. I’m very disappointed and fear a future of ADT…Your posts give me hope.
Yes you will be around for the cure! So will I!
Please tell me, what cures are you guys talking about? Please explain. I must have missed something important
Treatment options and new drugs are advancing every year. I consider dying with prostate cancer and not from it a cure of sorts. I just turned 75. I was diagnosed and treated over 8 years ago. Not ready to claim that I've been cured but I don't think prostate cancer is what will get me, just sayin'.
Right on Eddie
StayingOptimistic - what you're reading is hope! Hope for a cure. Most of what’s in the pipeline is about delaying progression, not eliminating the disease entirely. The refinements in ADT, targeted therapies like Pluvicto, ARV-766, and JANX007, and even experimental approaches like BAT are just temporary roadblocks for a cancer that keeps mutating and evolving.
The need for a true breakthrough—one that could either prevent mutations or completely eradicate cancer cells without resistance—is massive. Maybe that comes from better immunotherapy, personalized medicine, or some new class of drugs we haven’t even imagined yet. The FDA fast-tracking such a breakthrough would be a game-changer.
It’s tough being stuck in this cycle of “more time” instead of a cure, but I have huge respect for the men pushing back against the naysayers and demanding better treatments. Science is slow, but the pressure from patients and advocates makes a difference. Hopefully, that breakthrough isn’t as far off as it feels.
Scout4answers, I'm confident you'll be around with us for many years to come.
You should follow Maxone73 and subscribe to his newsletter..
Vaccines, Crisper and general cures for all cancers offer great hope.
300+ new therapies in trials for PCa right now
AI is going to make this happen even faster IMO
Don't assume please. I do read and appreciate his posts greatly. FWIW, We're saying the same thing in different ways. Personally I'm of the opinion that immunotherapy will delay and my hope lies in CRISPR or possibly Car-T to cure.
I don’t think, actually I am sure, I would not have the stomach to wait until Psa goes even to 1. I am get there and plan to start ADT around .2 or .3. I feel if we wait longer it will hit the bones which I don’t want. I would rather deal with ADT than waiting to see where the cancer is and then do MDT which I heard it does not accomplish anything
Scout, thanks for sharing your experience. Though I started to see an uptick in PSA from <.02 two years following ADT+ and SBRT, my experience has been somewhat similar in that my MO has also recommended I do a PET scan when PSA reaches .5. Over the past 15 months its risen from .02 to .27 but with the latest increase being from .16 to .27 between October and January. I experienced a similar pattern before when I paused ADT after 24 months, had a roughly two year hiatus with improved QOL, and then experienced gradual increases in PSA over the next 21 months till it exceeded 2.0 when a PET scan revealed two skeletal metastases, leading to five days of SBRT and another 24 months of ADT+. Given my history and presumed advances in detection, PET scan is now recommended when PSA crosses the .5 threshold. Categorized now as oligometastatic, I feel lucky to be almost 10 years out, now 76, from my original PCA diagnosis, and enjoying life.
Thanks for sharing ... good to hear your experience
But are you still dancing?
Not much before nor after my PCA diagnosis but being part of this community is for me dancing with the real stars.
Oh Yes
I was undetectable for about 6 years, over the last 3 or so years it became detectable again and I had two PSMA scans once PSA reached 0.2 which showed a tumor on a different rib both times, I treated them with SBRT and PSA fell back tp nearly undetectable. Gonn keep playing whack a mole as long as possible before having to move on to other therapies.
Ed
Ed, being tested at the level of 0.2, did your MO have any concern about it being too low to show anything, and did your insurance (Medicare perhaps) have any issues with covering? G
My MO, Dr. Sartor recommends getting scanned when I hit 0.2 and Medicare had no problem with it. Usually by the time I scheduled the scan and had it done, my PSA hasd risen a bit further to 0.35.
Ed
That is exactly what happened to me.
My PSA is rising and at .49 now. I am waiting for a call next week from a RO. They are maybe going to do a PSMA PET scan as well.
I also had a "shot in the dark" biopsy in 2012. Results were 4+4=8 originally and downgraded to 4+3=7 after surgery 3 months later. I'm curious if anyone has offered an explanation of how a major change such as yours happened. Did you have a Gleason 9 cancer from the start that they just missed or did your Gleason 6 cancer advance to a Gleason 9 with time ? I apologize ahead of time if this question has already been asked ?
No one I have asked in the medical field has been able to answer that question
At a slow rise then at 0.3 my MO scheduled PSMA scan for a baseline and there was a rather meaningful size spinal met. RT took care of that and psa went to <0.1 Now says when I reach 0.3 he will be vigilant.
Are you on Medicare?
I agree and have had PET scans scheduled at low PSA levels, around .5ng and with an aggressive DT by the time I was in the machine my PSA was .8ng+ and climbing!
I don't understand nor agree with allowing the PSA/PCa to progress and allow the cancer to grow any more than it should. Understanding the efficacy at sub 1.0ng is ok, I'll play Whack-a-Mole with SBRT too. Many MO's, RO's don't necessarily agree, but that's ok, then I'd find one who does! Knock on wood (my head) that my last go round was successful, I hope the same for all who chase this demon!
Way I see it is the Whack-a-Mole therapy prevents needing some heavy equipment with widespread mets if allowing the PCa to do whatever it wants and spreading, with the patient sitting and waiting for a higher PSA just so they can "see" more of it (PCa). Doesn't make sense, because then there's more too, that's still unseen!
It may be a chase of lesser returns as time wears on... But that's where the systemic therapies come in.
Hit it early and hit it hard! Maybe they will someday obtain some miraculous ability to see lesions @ 1mm instead of 4mm+ (1/4")... Someday... Anyways and until then! 
Best Regards
That is exactly how I feel about it.
PSA Rise Question
Slight PSA Rise
PSA on the rise
Rise in PSA
