I just had RARP on 10/29. Looking for advice on recurrence of PSA

Because of the Gleason nine, the chance of reoccurrence is very high, as your doctor said. I know people that have had Gleason 9 that have lived 20 or 30 years before reoccurrence. Others that have not been so lucky, But the treatments are really good and overall survival is like what your doctor said. People I know that have been told they only have 3 to 5 years to live have lived double that time and more, So what your doctor said is really good advice.

If your cancer reoccurs, they will probably do salvage radiation, Which will get you another few years before reoccurrence. There are some really great drugs available that keep people going for many years.

I was a 4+3 after surgery, but I have BRCA2, which is a genetic problem that causes my DNA to not be able to correct genetic errors. I’ve had four reoccurrences and many treatments, but I’m still alive almost 16 years later.

Testing every 3 months for two years is a good start, they should plan to test every six months after that. It took 3 1/2 years after surgery before my prostate cancer came back. And they gave me salvage radiation and 2 1/2 years later it came back again. If you’re a Gleason, nine, you need to be prepared to be tested for the rest of your life.

When you say a negative pet. Did they find metastasis elsewhere in your body? If so, are they planning to zap them with SBRT radiation. That is pretty much the standard. The fact that the tumor breached the capsule is why there is a much higher chance of it coming back sooner. Everyone is different. You never know what will happen in your case asking other people about theirs.

Thank you. PSMA Pet did not indicate any spread.

@shayes914 Your anxiety over this will be the worst thing about it - it is unbearable sometimes…
But as long as you test, test, test- that’s the best thing to do. If it returns (and it could) you will treat it with salvage radiation and ADT.
The old saying, “hope for the best, plan for the worst” really does apply here, but even the worst is not that bad actually. Just another inconvenience to deal with…Best,
Phil

My situation was very similar to yours. Was 3+4 pre surgery, 4+5 after. Surgeon believes he “got it all”; margins were clear, as were the lymph nodes. He said there was one area of ExE but was inside the capsule. I had ZERO incontinence issues(he said I was one of the fortunate 10%!). I asked for a post op decipher test which came back high risk. He said we’ll test PSA 2 months after the surgery and decide where to go from there. My PSA has been < 0.01 for two years(just “celebrated” two year “anniversary “ of my RP). I’ve asked if any additional treatment is necessary but he and my regular surgeon(who also specializes in prostate health) said it wasn’t at this time. I decided to call a Cancer Center of Excellence for another opinion. I talked to one of the nurses and when I told her my PSA score she said, “that’s great, you’re in remission”. My surgeon also said that recurrence of G9 usually occurs in the first two years; 5 years is more encouraging and ten years indicates it’s gone. He also indicated that I can expect to live 12-15 years. I’ve asked to get my PSA checked in 6 months(he was recommending a year). BTW, I am now 73 1/2. I work out everyday and have made some dietary changes, mostly eating fruits and veggies, no red meat, almost no dairy and no processed foods or sugars. Keeping a positive attitude (I still have anxiety)and still pray everyday. I too, hope it is one and done. I hope this is helpful. Best wishes and keep the faith! 🙏🤞Please keep in touch!

Well, others have provided sound thoughts.

You could go to the MSKCC monogram, plug your data in and get a statistical probability of BCR.
https://www.mskcc.org/nomograms/prostate/post_op
That won't really answer your question, what do I do...?

Two choices:

Actively monitor, jabs, labs and consults every three months for at least the first year. Stay with that for the 2nd or switch to every six.

Discuss with your medical team what clinical data constitutes a requirement to treat. In part, that depends on which PSA test you are using, USPSA or a standard one. If the former, that discussion is important since at what PSA do you act, how many USPSA tests...you don't necessarily want to act on single data points.

OR:

Given the clinical data you have, review the literature on adjuvant therapy, discuss with your medical team.

Were it I, the first option would be my choice.

As to life expectancy, I have never asked and my medical team doesn't say. Too many variables and the data you find on the web lags behind advances in treatment and imaging brought about by medical research.

As an example, I plugged my data after surgery into the MSKCC monogram, it said 30% chance of BCR. The glass half full said that means 70% not...

Yep, 15 months later, BCR...

If I had chose adjuvant therapy, would the course of my PCa be different...? We'll never know!

So think it over, discuss with your medical team the different courses of action and with their input, decide.

@kjacko very helpful and hopeful - thank you for your reply!

I would suggest not setting expectations either way and go live your fullest life. At this point there is absolutely nothing additional you can do to prevent a reoccurrence and you will see it long before you get to action levels with the testing. My first clue was PSA .03 during my first 3 month test and .04 at 6 months when I should have been ZERO. Nothing I could do about it and lived my fullest life until I started ADT and then radiation 1.5 years from that point. But, you can ruin the time you have until then by obsessing about it. Time is our most valuable resource, use it wisely and joyfully. Good luck!

@kjacko
It took 3 1/2 years after surgery before my PSA started rising. Keep up the six month tests.

I do know people with Gleason nine that have lived 20 or 30 years Before reoccurrence, They came back to one of the forums. I Attend, That’s how I found out. Could very well be that many others didn’t have a reoccurrence. Good luck!!

@jeffmarc Thanks for replying. Health and happiness!

I’m a Gleason 4+5=9 and I had surgury on 5/22/2025. I had positive margins and seminal vesicle invasion on left side . All nodes were clear. I am almost done with 38 treatments of radiation. I finish this Friday.
Also on Firmagon and Abiraterone. My psa at last check was .05. I’m 50 and hoping for 5-10 years at least.
Let me know if you have any q’s.
-John