My PSA climbed 02, .04, .07 .15 .21 had a RP 2 yrs ago PSMA negative ?

Hello - sorry to read of the questionable PSA values. I have two questions/thoughts:

1. Please tell us about the details of your post-surgical pathology report. Did you have "Extraprostatic Extenstion" (EPE) indicating that the tumor had broken through the membranous capsule of the prostate and had begun to spread elsewhere? Did you therefore have "Surgical Margins" indicating that cancerous tissue was likely left in your body? Did you have one or both seminal vesicles and/or lymph node(s) invaded by the cancer? I assume that both seminal vesicles and both vas deferens were removed with the prostate, since you don't need them without a prostate...correct? Did you have any other pathology like Cribriform glands? If the answer to any/all of those is "no", then you're likely better off than if you "do" have any of those in your pathology report.
2. Ask your RO if they offer Proton Beam Therapy instead of traditional Radiation Therapy. In my first and only consult with an RO because I am a pT3b type cancer (left seminal vesicle invaded but no tumor or nodules), he was very candid and forthcoming saying that "if" I ever need to have Radiation Therapy, it will very likely result in lifelong urinary incontinence. That is what got me searching for alternatives. Right now, Proton Beam Therapy is the newer and better form of radiation-type therapy, and here is why: Traditional Radiation Therapy is focused on the prostate "bed", but there is no control of the radiation: it passes "through" the target area and radiates surrounding/underlying tissue that is not intended to receive radiation. It is a severe limitation of this form of therapy, and there is a low chance...but still a chance...that you will develop bladder/urethral, rectal, or other cancer later on...the 'ole "the cure is worse than the disease" syndrome. When I say "low chance", I mean 1-5%, per my RO. But you still have a near 100% probability of lifelong urinary incontinence...diapers and pads, and embarrassment/hassle for the rest of your life. However...Proton Beam Therapy focuses and directs its form of radiation to the targeted area, but the Proton Beam does NOT "go through" and radiate any underlying or surrounding tissue. The consequential/related outcomes are FAR better than with Radiation Therapy. The challenge is, any cancer center or hospital would say that they are thrilled to have a Radiation Therapy department and instrument, but most do not have a Proton Beam instrument, even though it has been available now for a couple of decades. Such equipment is usually at/near $1,000,000 "plus". It has to be budgeted and weighed for necessity vs all of the other needed equipment and instruments throughout the hospital, so the Cancer Program has to "wait their turn" to get it. It also likely requires additional special space and construction "somewhere" in the hospital Cancer or Imaging department. Don't let that hinder you though. Find a facility that offers it, even if it is a couple hours drive away. Investigate if your health plan will cover the Proton Beam Therapy treatment (some, all, or none). Right now, my own 400 "+" bed, major urban hospital has a fairly new cancer center, but they only have traditional radiation therapy. I would have to go "out of plan" to get Proton beam Therapy, if/when I am told I will need "radiation therapy." There are four other facilities around me that do have it. I have already made my decision that I will absolutely NOT spend the rest of my life with urinary incontinence. A lifetime supply of diapers might equate to the cost of however many Proton Beam Therapy sessions I would need. It will likely cost more, but I would find a way to make it happen. Good luck to you, and please offer us all the info in my questions above, so we know the bigger picture.

@heavyphil
It's the 0 that throws me. I am not familiar with ultra sensitive tests. I have the traditional PSA as had radiation not RP. They use below >1 for undetectable and don't list numbers below that at least at Mayo Jacksonville unless you have the ultra sensitive test.

So he had the ultra sensitive test.

@heavyphil Thanks for your comments. Originally my Gleason score was 3+ 4.
I’m the patient who mention PSA climbed slowly and realize the numbers are low.
.02 .04 .07 .15 .21 then then back a fraction to .18
Trying to understand the numbers and what is Happening.. thus went to surgeon who performed RP robotically 2 years ago
He saw my #’s creep up
and asked me to visit his modality clinic.
Instead went to my RO for consultation and compared 2 pathology reports almost 2 yrs apart.
2nd report from PMSA was thoroughly discused
and like 2 yrs ago the RO was in favor of active surveillance and wait and see next PSA in 90 days for another follow up
Appreciate everyone that chimed in and it’s concerning but not alarming. Please comment
How do you feel about my experience, many thanks !

Met with RO

@charlotte1216 I cannot comment on what your RO has planned; he’s an expert at this while I am like you: trying to understand.
But I don’t think a second PSMA will show anything; that has been demonstrated over and over. The PSA values are simply too low. You can wait, if you like, until they reach 2 or 3 snd that may show something; that’s up to you.
Your PSA results really DO tell the true story: something is producing PSA and unless your surgeon can tell you that he left a large area of ‘normal’ prostatic tissue behind in order to nerve spare, that PSA is being produced by malignant cells.
That fallback in PSA from 0.21 to 0.18 is common; mine did the same thing. It will probably go up again in 3 mos.
Phil

@jeffmarc As a patient of Mayo that just scored a .1 post RALP this Dr. Kwon talk scares me. Is this the general approach of Mayo or just the one doctor.

@dhasper
Dr. Heath, who is an oncologist at Mayo Rochester is one of the best oncologist for prostate cancer in the country. Going to her would be really great for somebody, She can give you the best treatment advice.

As I mentioned Dr. Kwon Has been working with other doctors and not been alone in making decisions. With this kind of treatment anything beyond the normal treatment for a urologist is really great for the patient. The complaint expressed at ancan.org was due to his under treating some patients that came in and asked for ancan.org help when other doctors were not involved. It does seem there’s been a change in treatment practices.

I had a similar experience. I went 2 years after RP with < .02 than it started to rise. My Gleason was 3 4. The pathology showed pt3a and two margins could not determine margins. There was cribform, EPE and the 4 was 40%. The pathologist made it a group three. It went to .15 PSA over the next year and a decipher test was done which was .92. I had 2 psma/pet scan one before and one after being placed on adt. I have been told by two different medical facilities that I should go through radiation treatment. As other people have said if i have a chance to kill it off, i want to do it because it is very aggressive at .92. I have only been on Orgovyx for two months and it messes with my mind emotionally and stress/anxiety (other issues than the cancer) which I do not like so hopefully after radiation I will be able to stop, they originally told me 6 months but for some reason the prescription was for 11 refills.

@jeffmarc Thanks very much Jeff that is extremely valuable feedback.

@pamperme That is a very high Decipher score and you’ll probably be on ADT for a full year because of that.
But don’t get bummed; if it’s messing with your head, it’s a real chemical side effect. The blues - and frank clinical depression need to be treated chemically with either anti-anxiety drugs or mood elevators.
Don’t make the mistake of trying to ‘man up’ or ‘tough it out’ since SE’s usually get worse the longer you’re on ADT.
Talk to your RO and get a referral or an RX; this is not uncommon and they’ve seen it all before. Best,
Phil

@heavyphil I have been trying to “man it up” because normally I can work through things but it seems difficult. I think I may have to get something, thanks for the comment. I was afraid it might be a year. At first they told me just radiation. When the decipher came back they added adt.