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Can Prostate Cancer "Take a New Trajectory"?
Hello, forum friends. I know y'all are not doctors but I've been on this forum long enough to appreciate your knowledge gained from your experiences.
I was diagnosed in Nov 2021. Stage 4a, Gleason 9, Decipher .99
I had surgery in Jan 2022. Cancer confined to prostate, seminal vesicles, and 1 of 12 pelvic lymph nodes. After surgery, I think my PSA was .02, not sure.
I don't remember exactly when, but I had a follow up PMSA scan at some time within the following year. There was a very small spot that showed up on my hip but it was never confirmed if this was cancer or not . I believe my PSA was .1
I started ADT (Orgovyx) in Jan 2023 and 3 months later started radiation of the pelvic area. I completed radiation in May 2023. After radiation, my PSA was < 0.01. I was on Orgovyx for 2 1/2 years and just came off last month (I didn't want to but my Drs wanted me to. I dont know why).
Since radiation and as long as I've been on Orgovyx, my PSA has remained at < 0.01 (for over 2 years). Praise God.
My question is this-- with Gleason 9 and Decipher .99, I've been told from day 1 that my cancer is aggressive. That's why I'm scared to now be off the ADT. Can treatments, if successful, change the "trajectory" of the cancer-- yes, it was G9 with .99 Decipher but I've gone through all these treatments now and maybe the cancer is gone? So, does it still matter what it was/used to be?
I've got labs and appt coming up next month-- 2 months since stopped Orgovyx. We'll see what the PSA is.
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There is always concern about micro metastasis. It honestly sounds like your trajectory is a good/positive one. Time will tell, PSA monitoring will also help to tell the story. I had proton to the prostate in 2022, it killed all the cancer dual tumors had BCR in march 2025, undergoing currently radiation for two lymph node spots, on orgovyx and zytega currently. We have discussed micro metastasis and possible chemotherapy to address that even though my PSA is undetectable he feels it might be an opportunity now to kill off any remaining rouge cancer cells now. It’s still up in the air though.
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5 ReactionsBecause you’ve been undetectable for so long they frequently want you to stop the ADT to see what happens. You want to get monthly blood test with your Stage of cancer. If your PSA starts to rise, you can get right back on the drugs.
It’s possible they want you to stop, so your PSA will rise far enough to do a PSMA pet test and see if there has been spread somewhere else.
A lot of people in your situation have to stay on ADT and ARSI’s for life. In some cases, the cancer goes dormant and doesn’t come back for years. Everyone is different
Good luck.
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10 ReactionsDid they do SBRT to your spot on the hip? The SRT to your pelvic area may have knocked out the cancer and ADT may no longer be required at this point, hopefully forever. PSA tests are key to cancer status.
Your situation sounds a lot like mine. Prostate removed @ Northwestern Medicine April 2019, Gleason 9, decipher .96, 1 lymph node positive. PSA .02 at 1st, < .001 within 4-5 months. 39 radiation sessions in 2019, Xytiga & prednisone for 2 years from September 2019 til September 2021. Through all of this and as of last draw in February 2025 I’ve been undetectable for PSA. It can always rear its ugly head, but so far I’ve been lucky for 6 years and counting. Best of luck to you!
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8 ReactionsCancer is unpredictable. Not just micrometastases, but individual cells can hide out in your body for many years before they suddenly decide to start multiplying.
Unfortunately, current medical technology can't detect those, so what looks like a "new trajectory" is often just stuff that was already there creeping just above the detection threshold. So the only way to find out if it's there, as @jeffmarc mentioned, is to stop taking treatments to suppress growth (like ADT and ARSI) and see if anything grows.
But all of that said, there is some evidence from STAMPEDE and other studies that if advanced prostate cancer remains undetectable for 5 years, there's a strong chance of long-term suppression (they don't like to say "cure").
Best of luck with some challenging decisions.
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2 ReactionsThis has some interesting side effects about using SBRT. If the bone has been overtaken too much by a metastasis, it may not be possible to use SBRT without damaging the underlying bone marrow. In these cases, they won’t do radiation.
People in this situation end up with chemo or Pluvicto.
Read my profile for a complete history. After 2.5 years of undetectable PSA on ADT after RARP in 2021, last March (2024) my oncologist took me off ADT. My testosterone returned to normal in late 2024. This March (2025), my PSA started to creep up (taken every four weeks): PSA/4wk .03, .05, .08, .09, .10, .10, .09
Note that last value, from two days ago. I have no idea why it is now dropping. I will get my oncologist's opinion next month. I suspect he doesn't know either.
My opinion: Cancer has a mind of its own, so to speak.
Note that most men with prostate cancer die from something else. I will let you know if I don't. I'm in my 80s, & both my parents lived to be over 100 (neither died from cancer).
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11 ReactionsArfus - thanks for sharing your case : )))
Can you please tell me if your radiation was adjuvant or salvage type ( which means did they use R therapy regardless of low PSA or your PSA at some point started to rise and than they did radiation therapy .
start taking Alpha Lipoic Acid..it can suppress cancer cell metabolisim...very interesting stuff..cheap..at CVS or on line..
Prostate cancer can kill if ignored..but now with ADT therapy and targeted spot radiation, it is prob the most succesful treated of all cancers ( aside from run of the mill skin cancers)
PSA can go up and down for many reasons...I would venture that if it stays below 1 for yrs, then cancer is prob in deep remission...
sidebar: Men who are very sexually active in their twenties and thirties are more likely to develop prostate cancer, especially if they masturbate frequently...and men who have had many sex partners seem higher risk..however, frequent ejaculation seems to have preventive powers when it comes to prostate cancer..damn if you do, damned if you dont..
What are you on now 2025? PSA?
I did it all and now my last hope is Pluvicto or LU 177
C in bones only Feel great at 80