I am four post surgery today. I met with radiologist yesterday to discuss pathology report and future treatment. Pathology showed positive margins and 1 of 4 lump nodes positive. MRI, CT and Bone Scan were all negative prior to surgery. I think he is thinking Hormone asap with radiation as soon as healing allows. I’m for hitting this hard at the beginning, but want to preserve the ability to heal to resolve incontinence issues (dry nights, fairly good when setting, a dripped when standing that is worse as I fatigue during the day).
He ordered PSA test, testosterone test, and PSMA PET scan. I have received PSA back this morning. PSA is 36.5. Urologist previously said he would wait for PSA because too close to surgery would be unreliable due to effects of surgery. Maybe this was done to justify PSMA PET scan for insurance reasons?
Anyone with a quick PSA test post surgery showing elevated PSA that fell in the next few weeks/months? Any thoughts on reliability of a PSMA PET scan this close to surgery?
thank you in advance for any responses.
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Stereo1
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Thank you for your input. I won’t read anything into this result as this was my thought as well. I will give some benefit of doubt to this guy as to the reason he ordered it thinking it may be to justify the PSMA PET scan for insurance reasons and I will ask directly at my next visit.
What is your opinion of the PSMA PET scan this close to surgery? Will it be valid? Will it eliminate the ability to get the scan when the timing is more appropriate?
Alternatively, you should have whole pelvic salvage radiation + 2 years of abiraterone + 3 years of ADT.
The PSMA scan may be useful. if it shows there are distant metastases, you may want to forgo salvage radiation. If it shows positive pelvic lymph nodes, you can get an extra boost to those lymph nodes.
I disagree on waiting 90 days for PSA check. Strongly. Let me explain what happened to me. PSA before surgery 34. MRI showed no evidence of spread outside prostate. RP with 12 lymph nodes tested all negative. Surgeon convinced me to wait 90 days to test PSA. Actually 105 days due to his vacation. At that point PSA was 156. AP was over 700. Bone and PET scans showed “Innumerable bone Mets in virtually every major horizontal and vertical bone structure”.
I agree that PSA will be elevated post surgery but don’t wait 90 days! Gleason 10, now on triple therapy. PSA now down from 156 to 1.2 just prior to third chemo infusion. AP down from over 700 to 180. My guess is that cancer was already spreading by time of surgery but do yourself a favor and get PSA checks at frequent intervals after surgery. This will give you directional info at least.
Granted my cancer is more aggressive than most but how do you know yours isn’t also? I could have got a much bigger head start if I had known to be more aggressive post surgery. My fault for trusting a surgeon who represented himself as a cancer expert vs going to a dedicated cancer center where I am now (City of Hope).
I get the reluctance for radiation when you are not yet continent. I am still only about 95% to where I want to be 6.5 months post RP. But if any suspicion or risk of spread, I would definitely get on ADT ASAP. And possibly something more than just the injection. I’m on Eligard and Nubeqa. Lastly, get any scans you can. My MO at City of Hope was shocked that my surgeon didn’t order at least a bone scan before or after surgery.
Sorry, but the error you made was in not investigating your high-risk PCa for distant metastases before pursuing treatment. If you had had a a PSMA PET/CT or at least a bone scan/CT before your prostatectomy, it would have led you down a completely different treatment path. To have those scans in high-risk men is and always has been the standard-of-care. So the problem was not in waiting 3 months for the PSA, the problem was in your non-standard work-up in the first place. I have no idea why your doctor did not follow standard protocol.
Agree. I didn’t know any better at the time and of course I fired my urologist / surgeon and engaged City of Hope as soon as I got the 90 day results. That said, I maintain that waiting 90 days after RP is too long. That is ok if you are waiting to see if PSA undetectable. But not ok if you want to see if the trend is going the other direction.
I did file a complaint with Georgia medical practice board but my focus now is on next steps, not in the past. Just hoping to educate others at this point.
I do have a bit of a problem with your statement “my mistake”. Knowing what I now know, yes. But when patients are newly diagnosed, they don’t know any of this. We all try to select the best doctors up front and sometimes those are not good choices. But we should be able to follow their guidance. Even if you do some reading. I think the purpose of this board is to get people better info up front.
In medical science, we follow clinical facts. It doesn't matter what you or I believe to be true. It only matters what is proven to be true clinically. Clinically, it has been proven that waiting 90 days has no risk (assuming the doctor was not incompetent). This has been proven in 3 large clinical trials.
The last thing any cancer patient needs to hear is that they made an error in their past decision(s). With all due respect, that type of criticism should never be allowed on a site like this.
It was an error, made by his doctor. He is merely passing on bad advice. If you don't like it, take it up with those who do the research to develop the standard of care.
I don’t think that recommending a PSA check sooner than 90 days after RP is bad advice. I understand that residual PSA will remain until that time so if you are hoping for undetectable then it will take that long to verify, but under 90 days you will be able to see the directional changes and if the PSA is going the wrong direction then you can act sooner.
I would say that anyone on this forum who is not a Doctor and that includes me as well as others on this thread … are not qualified to give any absolute guidance but we certainly can share experiences and perspectives and you can take that to your doctor / oncologist in order to have better questions and better conversations.
Recommending a PSA check sooner than 3 months is certainly bad advice. This has been proven repeatedly, as I have shown you. The sky-high PSA from surgery completely masks the PSA from any residual cancer. There is no "direction" because it will almost always be higher than baseline immediately after surgery.
I guess you didn't read the 3 randomized clinical trials that proved there is no harm in waiting 3 months. Obviously, (as exemplified in your case) there are doctors who are badly informed. I believe in empowered patients who are competent to engage in shared decision making. If you prefer paternalistic decision making, a you are at their mercy.
What I "don't like" is seeing criticism of any decisions (or actions or inactions) made by patients. It has no place in this forum. Let's be more sensitive to the fact that many guys comes to a forum like this for moral support as much as clinical information, and guys with advanced disease are already hurting emotionally. Telling them about their mistakes, or their doctors mistakes, doesn't help them moving forward.
Let's agree to disagree. On a public forum, bad advice can harm patients. The responder was not the OP and criticized the good advice (good, because it comes from several RCTs) I was giving. I don't have time to sort out all the bad advice on this forum - only when the response is directly to me, so that it lands in my inbox.
Having an early blood test in order to gain information that you can discuss with your doctor is not going to “harm” anyone. Seems that you have a real problem in being challenged. I think enough has been said on this subject and any affected patients have digested these different experiences and views and can then discuss in person with a real doctor.
The harm is when patients have intense anxiety due to the high number. Just because you were mistreated by a doctor who did not follow standard protocols, is no reason to perpetuate such bad advice.
Thank you for your input. In my case I did have the MRI, CT and Bone Scan prior to RP. They all came back clear and I was surprised to a degree at the pathology report finding different. I guess there are limitations to the Science and I am hoping the PSMA will show a good result. Obviously, the less the spread, the more effective the treatment should be.
Do what feels rite 4 u brother. Thats pretty much what i been doing for 3yrs and all my numbers r the same except that my PSA went from 350 to .04. Do adt prednisone and 3mth Lupron shot. Alot of good advice on here..✌
Hi Bret, Thank you for sharing your experience. I appreciate it and because of what you wrote I will be encouraging my husband to not wait 90 days for a repeat test, but I already know these doctors will be telling him it is not necessary and trying to dismiss the request. Our numbers were very similar to yours, pre RP. I feel in my heart that the cancer has just been spreading all these weeks prior to surgery and this RP has just provided false temporary hope. I sincerely wish you the best with your treatments, I hope it is all going OK for you. It was kind of you to take the time to share your story for the betterment of others. Take care.
I do often wonder why urologists don't immediately suggest getting an opinion from a medical oncologist who specializes in prostate cancer as soon as cancer is found. To discuss treatment options.
I think it’s a combination of getting $$$ to retain their patient combined with an inflated view of their own knowledge and ability to solve the problem without additional help. I am sure that many urologists are not like this but mine certainly was.
Typical query and the usual unsubstantiated answer making reference to "magic" numbers. Things are quite simple when people use their mind for thinking. PSA has a half-life of 2.5 to 3.5 days. Lets assume the less favorable case of 3.5 days. That means that in a weeks time, provided no fresh PSA quantity has been added, if you re-test, your 36.5 will go down to 9.1 (36.5/4). You will not spend 3 months just to learn what this popular Greek saying is about: "Ουδείς μωρότερος των διδασκαλων πλην ιατρών" (No one more silly than teachers with the exception of medical doctors).
Thank you for taking the time to answer. I then would assume it was much higher immediately after surgery, as a result of the surgery, and has come down in the 4 weeks to the latest value of 35.5.
If it rises, I have a problem. If it goes down over the next couple of weeks, I’m looking better.
My psma pet scan is scheduled for the 28th. I will try to get another PSA test at that trip to the hospital to see the direction it is heading. I assume I will be meeting with the dr right after that to decide on treatment.
I’m planning on a recommendation to begin the hormone treatment asap and see these results to base my decision on when to begin radiation.
In November, when I’m on Medicare and can abandon this horrible ACA insurance, I will visit a Cancer center to hear their recommendations.
There is so much to absorb here and I want to make the correct decisions and have a dr that I feel confident in and can discuss these different options. I will try with this guy but will have to rely on him at least until November 1.
Thats pretty high. I would check again to see if it was an error or is at least trending down. My PSA before surgery was 5.5 and at 4 weeks I was 0.1. At 90 days I was still 0.1 and my journey continues.
What was your psa prior to surgery?
in reply to
Mine was 9 prior to surgery.
Undetectable in 30 day, same at 90.
Surgeon stated that the existing PSA in the blood needed to dissipate.
PSA was at 28 in March. No other PSA test made prior to surgery. I did have biopsy which gave me a Gleason score of 4+3=7 and three scans, all clear, before surgery.
At age 46 my PSA post surgery was 0.26 and then began to rise. 6 months later radiation with Adt plus receptor blocker. Down to zero afterwards. Recurred 5 years later.
Hi Stereo, I am only "the wife" and here to learn from everyone else... but you just rapidly caught my attention. My husband just had catheter removed yesterday from RP last week. His very first PSA level tested sometime in June was 31.. the repeat PSA a week later was 32. No new PSA tests in all those weeks prior to waiting for surgery.... All 3 scans clear.... Biopsy was 4+3=7... Does this sound a little familiar? For all clear scans, why the heck was the PSA so high in the first place? Waiting until Sept 7th for pathology report meeting is maddening. Waiting another 3 months for a repeat PSA will be equally frustrating. I think we are going to be in the same boat as you. We had a PSMA scan approved and done one day before surgery so not sure it was even viewed prior to going in and haven't even seen those results yet. Please keep us updated. Sending good vibes and prayers your way.
Yes, it does sound familiar. I feel your frustration with the waiting game. It’s a hurry up and wait process that leads to more waiting. Getting appointments (I spent two hours yesterday on the phone getting my PSMA scan scheduled), hearing recommendations, studying and considering options, and then moving forward on those decisions all take too much time, which is our source of anxiety. I hate feeling my life is in limbo while I wait to see what the future looks like for me.
I was delighted when my scans came back negative because I feared that if they did show spread I would not be approved for RP. I wanted the “Mother Ship” of the cancer out to slow down (in my mind) any future release of cancer cells/spread from the prostrate. I never felt 100% confident in the results. My radiologist gave me the impression he has faith in the CT/MRI/Bone Scan and spread occurred between scan and surgery. It’s hard for me to wrap my head around this because the pace of treatment is so slow, as you said “maddening”. If this cancer moves this rapidly, why is this pace of treatment so slow. There appears, from my perspective, to be little sense of urgency in the pace of treatment.
I am thankful that there are these brilliant professionals available to care for us but it is far from perfect. I read a post from a guy living in the UK that he couldn’t get an MRI for a year because of the waiting list. Blessed I live in the US, even with the limitations we do have here.
Timing was far from perfect for me. I have expensive, but limiting, insurance from the ACA exchange. This was the trade off for early retirement so we could return home, after fifteen years following a job transfer, to not miss our grandchildren growing up. I retired just before the pandemic. As I said, my timing is terrible.
I will start Medicare in less than 90 days. While I have been fortunate to have what seem to be very competent care, I have not had the ability to utilize a cancer center where I think I can get a more coordinated and comprehensive treatment plan.
We have to accept the reality of our condition. There is no rewind button. My lack of preventative concern for this contributed to my current condition. I’m learning and I am all in on doing what I need to do to win this battle and be here for my family, in good enough health to contribute rather than be a burden. I guess I have paid the price for my early retirement; I am damn sure plan on sticking around to enjoy being with my grandchildren.
I pray for positive outcome for you husband’s and your pathology. You are on here trying to learn so I am confident you too are committed to fighting and winning, no matter the results of the pathology. I am impressed with some of these warriors on this site that have far worse condition and continue to fight and to thrive. So much for the “easy street” of retirement…
Waiting approximately 3 months to get a PSA post op is standard as it’s true the residual PSA needs to clear. Any sooner is not helpful.
The real problem here is RP without better staging prior. The patient can’t be faulted, but he can learn much from poor navigation. Urologic surgeons push for RP generally, and relatively crude conventional CT and bone scan are usually all that is done pre-op, which is wrong. PSMA pet is superior only if it’s used.
Very often RP is the wrong choice. Detectable PSA post op of the kind of numbers reported here are very high, whether at 2 months or beyond. They indicate either surgeon incompetence, considerable spread outside the prostate prior to surgery, or both.
I'd also get an opinion from a medical oncologist that specializes in prostate cancer. About 3 weeks after diagnosis my husband met with two medical oncologists and two radiation oncologists at different top cancer centers to get opinions on treatments prior to hitting it hard - he had already started ADT as all recommended that. We stopped seeing the urologist for cancer treatment help. Unless oncologist suggested- but hasn't yet. Maybe I'm off base- but from some posts here and my own research I don't know why urologists treat the cancer- since they aren't oncologists. Often it seems men have surgery when that may not have been the best choice- and have incontinence issues that could have been avoided. Same stats for other options fir survival. Just putting that here for anyone newly diagnosed looking for treatment options prior to surgery. Looks like you got some good options above- hoping your PSA just dips lower after this!
oncology and radiology are newer disciplines. Historically, urologists/surgeons were the original docs that attended PCa patients.
In almost all other cancer types, oncologists are now normally the lead man in the team. But not in the prostate cancer business. Urologists remain the guy you get referred to and (oh lucky for us) guide us in our desperate and novice attempt to survive this gauntlet. To me the seem greedy and jealous to hold on to a position that a less biased oncologist could do better.
Worst of all, I often caught them shading the statistics they flippantly quoted in favor of surgery.
I sadly have to witness in here, man after man after man, that was guided into surgery when his probability of cure would have been higher if he had been not advised by a tiny little urologist.
Any time you see a higher risk guy ( high gleason or pretty high PSA) in here that had surgery.... cure probability is like 50/50. So every other high risk guy the uro guides to surgery, dies.
If i had a job, where if i make a mistake, somebody dies, I would be a nervous wreck. I would study my a$$ off. I would not be so flippant and cavalier and ultra confident as the many urologists i have met.
At our hospital the urologist will be responsible for placing gold fiducials and spaceoar in preparation for prostate radiation. He never recommended prostatectomy. Once biopsy results came back he referred us to medical oncologist and that who is pretty much managing my husbands care, and the radiologist. It can all get confusing as to who does what. We went for second opinion with medical oncologist and radiologist at another hospital. Next week we’re seeing both medical oncologists regarding his FoundationOne genomic test. I’m keeping fingers crossed medicare will pay for both of them!
Good morning:). My husband is now 2 months out from his RARP. This waiting game is really torture. The science of waiting three months makes sense, but it is still hard. His doctor at Mayo Phoenix has us coming back next month for his first PSA test. He had extension into bladder neck, positive margins and one positive lymph node. Gleason 9, Decipher group 5. I read as much as possible and sometimes I just have no idea what the different scientific papers are saying. This is all just very humbling, scary and frustrating. This group has some wonderful people in it, and I really appreciate the willingness to share information, experience, strength and hope. Wishing you the very best as you travel with us.
I wish you the very best as well. It’s an adventure I would surely have pass on, if given a chance. I am glad I have this group to accompany me, now that I’m underway.
I had negative margins, no seminal vesical invasion and negative LN's, but a PSA of 0.13 immediately after RP. But I had bladder neck invasion...my surgeon did not hesitate to tell me I had not caught all my PCa as the tumor had grown onto and was not able to be removed by resection from, the bladder. In my case I went to sRT at 6 months post RP...if you had positive margins then like me radiation spot treatment of the LN may not work as you could have cells that remain at the margins, plus the LN, all with PCa still present. I had sRT to the entire pelvis with treatment of LN as well. My PSA was 0.008 four months after the end of the sRT, with my TET recovering to 276 immediately and rising...then I went on 2 years ADT...OK, here we go...understand what will happen to you on ADT. Here is something I published recently that will tell you what ADT will do to erectile function...use ADT if you need it but do it with both eyes open.
Next, get a Decipher test done on your tumor tissue sample...it can tell you if you will benefit from ADT...why use it if your genetic make up has a significant change of not reacting positively from it?
Then, consider that without Genomic testing you are missing important information on how aggressive a 'cell type' you have...GS is visual; Genomic testing is RNA based and really tells you a lot about how aggressive you need to be in your treatment. My Decipher test was a whopping 0.97 out of 1.0; I had a lethal cell type, even though I had a GS 4+3, with 60% GS4 in the samples...according to my surgeon my Decipher should have come out in the 0.5-.06 range; it was off the charts! So I hit my PCa with the kitchen sink! Find out if you are in the opposite condition, your GS is, for example, a 4+4 but your Genomic cell type comes back low at 0.15-.20; that may help you better tailor the aggressiveness of treatment accordingly.
Focus on your erectile function now and make good decisions going forward...some choices you will make are fine, support a cure and will prolong your life, but once you achieve that victory options for ED are fewer and you cant back up...so take a good look holistically at all three aspects of QOL for your recovery; cure, incontinence and ED! I focused on them in the order I typed them out and that was wrong...you need to focus on all three at the same time, even though right now ED is the farthest thing from your mind...it wont be sooner than you think. Here is my woulda-coulda-shoulda list of stuff I will do in my next life, if I get PCa again...not funny I know, but I put this stuff down in the hope that, if one item helps someone, then my efforts were not wasted...
Finally, PSMA PET will work very well at your PSA levels...I would get a scan as soon as you can...high PSA will make both sensitivity and specificity very high...
In my case PSA 5 weeks after prostatectomy was <0.01 ng/ml, versus 14.2 ng/ml 3 months before RP. I do not recall for certain what was said about the reasoning for performing the PSA test at that time, but my impression was that it was intended to indicate whether adjuvant treatment would be called for, considering that the pathology report contained some adverse indications. The result did provide short-term reassurance.
I feel extremely fortunate to now be sweating out the PSA results every 6 months, which have remained <0.014 ng/ml 4.5 years following RP.
Best wishes for the best possible outcome for you!
While I would be surprised if the physician who ordered the test could explain his logic, there is literature to support early PSA monitoring with unclean margins after radical prostatectomy. In fact when I was still doing Hand Surgery in the VA system the urology clinic ran in the same clinic area. While I new many of the urologists I got to know one particularly well after my diagnosis in 2018. Even though I was not a surgical candidate over periodic lunches we discussed many aspects of prostate cancer care over the next three years prior to my retirement from the system in 2021. The individual was and is a well established and published prostate cancer researcher and he would advocated early and frequent PSA monitoring following surgery where there was known residual disease. He felt it helped guide future treatment selection and also was somewhat predictive of the future course of the disease. I have attached one study that was pretty easy to find that supports early monitoring.
PSMA scan should be valid to exclude metastatic disease outside the pelvis. That would be the only thing to counter going rot salvage RT to the Prostate bed and full pelvic LN fields as soon as the timing of healing permits. The urologist and your chosen radiation oncologist can decide on that. You might want to consider waiting until the start of the SRT to begin adjuvant ADT as testosterone may help the healing process. Good luck
The half-life and metabolic clearance rate of PSA have been determined from studies of patients undergoing radical prostatectomy. Stamey et al found the half-life to be 2.2 ± 0.8 days, [7] whereas Oesterling et al determined it to be 3.2 ± 0.1 days. [18] Because of the relatively long half-life of PSA, a minimum of 2-3 weeks is required for the serum PSA to reach its nadir after radical prostatectomy, at which point it should be undetectable.
Therefore it should be even more likely that the PSA would reach its nadir at 6 weeks after RP and if surgery was successful then a nadir of undetectable should be the outcome.
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Our numbers were very similar to yours, pre RP. I feel in my heart that the cancer has just been spreading all these weeks prior to surgery and this RP has just provided false temporary hope. I sincerely wish you the best with your treatments, I hope it is all going OK for you. It was kind of you to take the time to share your story for the betterment of others. Take care.
My first post. Rising PSA After Surgery. 
Low PSA (Less than 2 ng/ml) but high Gleason (9) cancer which spread to liver
Will any kind of PSA test show levels higher than 1420
Post Radiation PSA Questions 
Post treatment post ADT time to PSMA test
