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

Posted by shayes914 @shayes914, Nov 4 3:39pm

Biopsy beforehand said I was Gleason 4+3. Pathology came back last night - turns out it was actually 4+5 = 9. One of the tumors (the one scoring 9) breached the capsule but the seminal vesicles and lymph nodes were clear and they got negative margins all around. I also had a negative PET a couple of months ago so seems like we may have gotten it removed not a day too soon, but I am concerned because the surgeon says it's 50/50 chance on recurrence within 5 years. We will test PSA every 3 months for 2 years. Has anyone on here had similar circumstance? Did you end up having secondary treatment? was very hopeful this is one and done, but I'm grateful it wasn't worse at the same time. Even if it comes back, he says we have 90% chance of 15 yr survival with secondary treatment.
By the way, for those facing RARP in the future, the procedure itself and the recovery so far is not so bad. I hate the catheter but otherwise feel good. Just hard to sleep on back, changing bags, leakage, etc. are uncomfortable. Once that comes out on Thursday, I begin addressing the other two big quality of life functions. Wish me luck!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Also agree with the input that you have received.
The facts are that with G 9 (my post-op biopsy also reported higher than pre-op) and with clean margins, seminal vesicles and lymph nodes (as was I), we have a ballpark 35% possiblity of recurrence or persistence (my PSA was persistent with a .19 90 days after RP plus EPE for good measure).
I had prompt salvage radiation treatment and my PSA has been undetectable < .02 for 2 yrs.
And, I anticipate if, or when, I recurr, as others have noted, PCa can be treated more as a chronic disease.
However, have hope. Your results may be different from mine. And if not, there are tolerable treatments.
Sincere best wishes.

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You just describe my circumstances to a T 4+3 then after surgery final biopsy 5+4 level 9 surgery was 5 weeks ago yesterday it had shown in the pet scan confined to prostate, but two months later when surgery occurred it had grown outside of the prostate into the bed margins were negative, but I’m like you concerned about reoccurrence.

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I was 4+3 after my biopsy in July 2024, but 4+5 after my RP surgery on 11/11/24. I also had a number of adverse factors - bladder neck, cribriform, multifocal, nerves. PSA after 4 months was undetectable. After 7 months it was 0.02. After 10 months it was 0.04. The urologist told me to come back in 3 months but also sent me to the radiation oncologist. Rad Onc said the PSA is still low, but the upward trend is not likely to reverse so there's no reason to delay radiation. I had the Lupron shot on 10/15, and get the simulation on 11/26 with 39 radiation treatments beginning the following week. Happy holidays, eh? Hang in there.

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My case is a little different but hopefully still informative. RARP in 20215. Post-surgery Gleason (max) was 7 (3+4). However I had a positive margin and a Prolaris score of 1.7 with a 53% chance of BCR at ten years. For ten years my PSA tests were all below detection (< 0.1). In June 2025, my PSA rose to 0.11 and a DRE revealed a small nodule in the prostate bed. PET PSMA and MRI confirmed a local recurrence with no evidence of metastatic disease, including pelvic lymph nodes. PSA remained unchanged for the next 3 months. Am just now finishing 8 weeks of IMRT. Will test PSA again in 3 months and see where things stand then. Not really experiencing any side effects from the RT other than the drudgery of the whole thing. Looking forward to 3 months of “normal” life before the next PSA test.

I caught the recurrence, as well as the original PCa, about as early as possible. Regular screening of PSA was, and still is, key to staying on top of this disease.

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Profile picture for anosmic1 @anosmic1

I was 4+3 after my biopsy in July 2024, but 4+5 after my RP surgery on 11/11/24. I also had a number of adverse factors - bladder neck, cribriform, multifocal, nerves. PSA after 4 months was undetectable. After 7 months it was 0.02. After 10 months it was 0.04. The urologist told me to come back in 3 months but also sent me to the radiation oncologist. Rad Onc said the PSA is still low, but the upward trend is not likely to reverse so there's no reason to delay radiation. I had the Lupron shot on 10/15, and get the simulation on 11/26 with 39 radiation treatments beginning the following week. Happy holidays, eh? Hang in there.

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@anosmic1 I applaud your docs for being proactive on this. Your adverse factors make you one of the many whose cancer is likely to recur…
So WHY wait and spend all those sleepless nights waiting for your next PSA?? I know some men like to wait and wait until they are really forced to pull the trigger but I am not one of them😬
Phil

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Well, you could plug your clinical data in here and it will provide a statistical probability of BCR...
https://www.mskcc.org/nomograms/prostate
The question is, what do you do with it? I used it after my surgery, said 30% chance of BCR. Of course, that means 70% not.

I liked those odds but alas, it was not meant to be. 15 months after surgery PSA came back at .2 then three months later .3. It's why I don't gamble.

You may want to read up on adjuvant therapy and discuss with your medical team. By that I mean not just the urologist who did the surgery but a radiation oncologist and an oncologist, both with experience in managing prostate cancer.

Like of all us, you face the dilemma of what to do with our clinical data. What constitutes actionable clinical data, when do we treat, is there a risk in not treating now...do we miss the window of opportunity for a cure...?

You may be, well, from my foxhole, are, too soon in the process post surgery. Were it I, what would I do, I would just go about my life, the recovery process, do jabs and labs and consults every three months and go where the clinical data takes me, enjoying my life.

It's nice your medical team mentioned the stats, like with the MSKCC monograms, they provide a population based data outcome. Question is, do you fit that data? You don't and can't know now. I am at almost 12 years, so, getting there!

Kevin

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Have you even had a post surgery PSA test yet? From my experience I feel you are getting ahead of yourself. One of the skills I have somewhat had for years is living "in today". Prostrate cancer required me to raise the bar on that skill. I for the most part, live and get the most out of today more so than ever as nothing is promised tomorrow. Generally don't get jiggy until a week before 3 month testing. My post RP PSA never went to undetectable starting at .03 and climbing to .22 over the next 2 years. Couldn't do anything about it until then, so I lived the last of my full blown physically active life one day at a time. Best wishes on you testing results.

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If you want to more accurately assess your chance of recurrence, you also need to factor in your PSA before surgery and enter the value in the nomograms mentioned in the repsonses before. An even better tool is to get a genomic test like Decipher which will give you an estimate of your chance of recurrence based on the biological aggressiveness of your cancer. For high risk people like me (with Decipher score of .75 and multiple adverse pathological factors like siminal vesicle invasion .etc.), it is probably a question of when, not if, there will be a recurrence. Instead of putting my head in the sand, I have accepted that reality and am doing my best to be positive, remind myself daily about all the good things in my life, and do things I enjoy doing (like helping family and friends and spending time with them).

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Profile picture for shayes914 @shayes914

Thank you. PSMA Pet did not indicate any spread.

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@shayes914

I had my RARP on 10/3. Just recently had my post-op pathology discussion with the doc. Pre-op was gleason 10. Thankfully, clear margins and no lymph spread. But cribriform was present. I will have my PSA check after the new year. Doc was positive, but adamant about regular tests and the potencial for reoccurrence, as your’s said. We will cross other bridges, depending on future test results. And of course separately, told to keep up with the kegels. Hopefully for everyone the new year will see continued improvements. Either way, we move forward. And as Phil similarly noted, hope for the best, but research and plan for other outcomes. Good luck.

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Profile picture for davederousseau @davederousseau

@shayes914

I had my RARP on 10/3. Just recently had my post-op pathology discussion with the doc. Pre-op was gleason 10. Thankfully, clear margins and no lymph spread. But cribriform was present. I will have my PSA check after the new year. Doc was positive, but adamant about regular tests and the potencial for reoccurrence, as your’s said. We will cross other bridges, depending on future test results. And of course separately, told to keep up with the kegels. Hopefully for everyone the new year will see continued improvements. Either way, we move forward. And as Phil similarly noted, hope for the best, but research and plan for other outcomes. Good luck.

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@davederousseau
You want to find out whether or not it was large cribriform. That is the one that’s most aggressive.

Yes, a Gleason 10 is VERY aggressive. There is a high chance of reoccurrence with that. You want to definitely make sure you get PSA tests no less than every three months, for a couple of years. And less frequently after that. You don’t want to stop that testing.

I had a Gleason 4+3 and my cancer came back after 3 1/2 years.

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