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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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The Gleasons aren't listed nor are they specified in the criteria for admission. Look at criteria for admission to the study and see
NCT05588128
None were specified as a criteria. Mine was 3+4
look up entrance criteria for the clinical trial
I'm sure the reviewers for the trial have all that info and it'll be revealed when the results are published. But until then it's my understanding even Dr Madan is blinded from that detail to insure there's no question about the impartiality of the trial. No butcher's thumb on the scale.
Thanks for the heads up
I guess the fool proof way to comply with the standard is to simply alert readers to AI and suggest how they might get info on the trial there
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1 ReactionSuggest you AI Google your question. I have and recieved a very thorough response. It's important to also ask "If the PSA flattens or changes trajectory, why and how does it do so?" Also be sure to click on the paper clip images to access the basis for the AI answers.
Good luck!!
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1 ReactionHere is a recent (June 2025) video interview with Dr Madan (URO Today) titled, "PSMA PET in Biochemical Recurrence: When to Treat vs When to Wait - Ravi Madan”. Glad to see someone questioning some or the treatment orthodoxies and pursuing those questions with a clinical trial.
https://www.urotoday.com/categories-media/2757-urology-tube-video-channels/asco-2025-vl/4947-psma-pet-in-biochemical-recurrence-when-to-treat-vs-when-to-wait-ravi-madan.html
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2 ReactionsJeff - I have had buddies stop and start ADT several times . It seems to make ADT more effective for MUCH longer (10-15 years + ) . Just my experience in observing them . I got Salvage radiation 3 years after my operation at PSA 0.14 but never had ADT for some reason. Drs indicated I did not need ADT and in my case it would not be recommended . Now my PSA is 0.061- 0.032 in that range . Dr think that I have some healthy cells in pelvic area pushing out very small micro amounts of PSA . Dr's are not worried at all and they say they see this often . Strange case I think . Thanks for your help on board ! James on Vancouver Island .
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4 ReactionsI subscribe to the theory(?) that one may be cancer undetected but never cancer free. It's just a matter of time until that little bugger wakes up. Which is why I get my PSA tested ever 3 months. The guy work up about 8 months ago. With radiation we put him back to sleep. At least for now. He ain't no Rip Van Winkle.
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2 ReactionsThis is something I hear about a lot. It works quite well for some people, I know a few people that have done this two or three times and ended up having multiple metastasis. This needs to be done very carefully keeping an eye on your PSA.
The guy that runs the CSC bimonthly online Prostate cancer meetings has BRCA2 and did this a couple of times and now lights up like a Christmas tree on a PSMA pet scan. Be careful.
Now, this has got me worried!
I just came off ADT (Orgovyx) after 2 1/2 years. My PSA has been < 0.01 for 2 years (after surgery + radiation + ADT).
I darn sure don't want to risk metastasis. Got my first labs since coming off next month. As most of you have commented, if PSA starts to rise we've hopefully caught it early enough to go back to treatments.
Get monthly tests when you stop. I’ve been getting monthly test for eight years. That’s because it may come back at any time and I’m on Orgovyx and Nubeqa.
There have been studies that have shown that even people that have undetectable PSA can have metastasis growing. That one scares me.