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You have to realize that if your PSA starts rising quickly they will put you right back on and you will not have any cancer spread. That will tamp it down again.
Sometimes they want you to get three month PSA tests. Request that they give you monthly test for the first six months. I’ve had monthly test for eight years and you do what you have to do to keep it under control.
At that point what you’re looking for is if the PSA rises what is the doubling rate? If it’s quick you go right back on ADT. If it goes to .02 and then takes six months to go to .04 It’s probably still worth waiting for the next few tests. Your doctor is the one that will be looking at these numbers and telling you what the best option is.
I know a lot of people with Gleason 9 that have done what you’re doing successfully for a year or more.
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“You have to realize that if your PSA starts rising quickly they will put you right back on and you will not have any cancer spread. That will tamp it down again.”
Unfortunately, this wasn’t true for me. My oncologists thought I’d been cured by immunotherapy, an exceptionally rare outcome in prostate cancer. We agreed I’d cease ADT. Not immediately but soon enough my PSA started increasing & we didn’t do scans until it hit 6. An MRI - useless for lymph nodes, imo - was all clear. 4 weeks later PSMAPET showed SUV uptake of 7-8 in two LNs that had never had SUV uptake or been noted by radiologists.
This was a special circumstance. I think people got excited to prove that immunotherapy could cure PC.
But at the risk of being a downer, I just wanted to let everyone know that the assumption that your oncologist will step in immediately when your PSA starts increasing after cessation of ADT isn’t necessarily true. An oncologist who has declared you as cured or likely to be in long-term remission can be stubborn to admit he was so wrong so soon .
I can’t stand typing these words because I wish I could go back to last year when my PSA hit 2 and say , give me the bleeping ADT again right bleeping now