What was your PSA at 3 and 6 months after surgery?
I had my prostate out October 3rd. My three month PSA text came back at .06. Good, but not zero. I realize anything under .1 is considered in remission. I will have it redone in three months.
What was everyone else three and six month PSA?
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
BTW, I am about 6 weeks post radiation and have 2 more weeks on Orgovyx. Feel great.
No “numbers” yet for me - that’ll come at the 3 month mark 🤞. Thanks for asking!
@heavyphil
No problem. I posted some time ago the same thing about numbers and giving numbers below one .1 that different labs can or do.
I can only post what Mayo Jacksonville uses for what they consider non detectable and that the number I posted from my Mayo PCP is .1 as below that they consider non detectable. That is not what I am learning other labs can do or non dectecable numbers. So I am careful I mentoned only my experience with Mayo Jacksonville and their non detectable number guidance the give.
It appears many other laps go much lower in giving PSA numbers. I think, and just my opinion, it is a far greater need to have those lower numbers sensitivity for those who have had their prostate removed versus those who still have our prostate and thus will have PSA levels (and normal to have) to be above non detectable levels.
I agree with my Mayo PCP and R/O it is, at least for me, my PSA goal of below one and not to have an ongoing rise in PSA numbers on a consistent over time basis.
Take care!
@retireditguy
You are in good hands at Mayo. Which one are you going to?
I see you mentioned the Mayo Team. I go to Mayo Jacksonville and I posts all the time about Mayo care using the team concept. I trust my Mayo team especially my Mayo PCP.
But it was my Mayo PCP that suggested getting second opinions which I did. But my final consulatation was with my Mayo PCP going over all the information we learned and decided on what both of us thought was best for me.
I can't praised Mayo Clinic anymore that I do expecially the outstanding PCP I have.
@jc76 -- I go to Mayo Phoenix. I'm a remote patient as I live out of state and only went to Mayo for my post mri consult, fusion biopsy, surgery, and now follow up care. Because of that I don't have a PCP at Mayo, but simply work with the urology dept staff. Nevertheless I've felt I've received excellent care and am very happy with them.
So... PSA has stayed at .06 since my surgery 6 months ago. They tell me anything under .1 is good. I would feel better if it were 0.
I am still somewhat frustrate with the dry orgasms. Any advice?
Also, when I met with my doctor at Mayo before the surgery they did a great job of telling me they would be here for me after the surgery... I haven't found that to be the case. I have received ZERO follow-up and when I email them I get back information that really isn't helpful.
Hopefully you are physically recovering well and getting back to your pre RP activities.
Pre surgery Gleason and Decipher?
To confirm, your post prostatectomy value stayed at 0.06 for all PSA tests. How many tests? How long after your RP was the first PSA result?
It is great that it has not increased. Since BCR is at 0.2, I would not expect much action, other than additional PSA tests until the PSA value rises. It is also unlikely that a PSMA scan would show where any cancer cells are located, at your level of PSA.
Deferring to other responses you will receive, I believe that several consistent PSA test results post RP are indicative of either: (1) some prostate tissue remaining in the prostate bed post surgery or (2) prostate cancer cells remaining that are not aggressively growing.
Although you could theoretically seek a secondary treatment now, standard guidelines are to wait until your PSA values increase to 0.2, using any increase in your PSA values to first measure PSA doubling time (aggressiveness indication) and working with your medical team to decide your secondary treatment.
The unknown is worrisome and all of us want to know the future.
We are in Casablanca, where we wait, and wait...(for the plane to Lisbon).
What care or input do I need; as opposed to what I would like to have (which is comfort about the future)?
Following a successful physical recovery period from RP, I have not had input from my surgeon. Honestly, he has other patients who need him and his skills.
I had persistent PSA and salvage treatment completed in May 2023.
uPSA tested in Nov 2023, and gratefully undetectable at < .02 and for 18 mos/6 tests since.
Saw my RO in Nov 2023, 6 mos post completion of salvage treatment treatment. At 1 yr, post salvage treatment, with no problems and undetectable PSA, I saw his NP in Nov 2024.
And, if I continue "undetectable " through the fall, I anticipate seeing the NP again at the Nov 2025 annual follow up, and perhaps expanding the 3 month testing schedule.
All of this would be really good.
I would love to have my RO meet with me and tell me that my short term results bode well for my future and that my PCa will not recur for "X" years, or ever.
Not happening as his crystal ball is broken.
So the RO should spend his time helping patients with active treatment needs; not meeting with me.
It is a bit lonely and scary to live from test to test, but what else is there?
I will take "undetectable" and the NP forever if so blessed.
Best wishes to all.
I was 70 when I had NS RARP at Mayo Phoenix 9+ months ago. Reading your post I suspect the process in Phoenix is similar (if not identical) to the process in Rochester for post-surgical care. I also expected Mayo to guide the visits into discussions a bit more regarding "related care" issues such as penile rehab and how to adjust to the new normal after surgery. But I found the follow up visits are really more focused on objective health measures like psa scores and don't dive much into other areas (such as the emotional side) unless I bring it up. But if I ask questions, then I've gotten good responses from the Mayo staff urologist on the tele visits. Specifically regarding the psa scores, mine have bounced around a bit post-surgery. But since the type of psa testing machine varies at the local lab I use, that's to be expected. Here I'm comfortable relying on the advice of every Mayo urologist I've met with and I'm not worrying as long as it stays below .1 (which it has). So far my scores have been .04, < .1, and < .04 at 3, 6 & 9 months respectively. When I use my local lab portal and print a more detailed version of my psa results, I can then see the type of machine and using that I can research the testing machines limitations regarding testing sensitivity and calibration dependency. I'm not a medical professional so I really don't know, but I believe the psa test results are dependent on machine type and calibration and no single number should be considered definitive. Best wishes.
I decided to address the "less satisfying experience" of dry orgasms post-surgery experience in a separate response. Regarding the dry orgasms I certainly don't have the answer to your concern. But for me I've found that my physical sensitivity is not yet back to my pre surgery level. Frankly, I believe before surgery my sexual experience (including the quality of the orgasm) had a more significant physical aspect than they do now. After surgery, I've found the mental piece is much more important to the quality of the orgasm (or even if I have one) because the actual physical sensation (I assume due to the nerve trauma) I have during the sex act still isn't back to pre-surgery levels of sensitivity. So now my wife and I do a lot more foreplay and cuddling before sex and even during the sex act as I really have to have my mind in the game if I hope to get a satisfying orgasm. I can't simply "jump into sex" like I could before the surgery and let the physical side do the heavy lifting. That said, if I do get my mind in the game then the dry orgasm can be very satisfying. But I suspect this kind of advice is probably outside the scope of urology, and I probably should have sought some male sexuality kind of therapy/advice after the surgery. Unfortunately, I think this aspect of rehab is often not discussed during the routine post-surgery medical visits, but rather left up to the patient to figure out and/or to request help. Long story short, my wife and I had to adapt our sexual experience to figure out what works for us post-surgery. For us it definitely changed from pre-surgery and we're still trying to figure it out. Of course, I'm not a medical professional and maybe I'm totally wrong. But that's been my experience so far. Best wishes.