Bahhhhhh, uPSA going up : / ...

I think it's good to take notice and make plans. It would not surprise me if scanxiety can lead you to press the panic button faster than you might otherwise had done. I know I get it every time (my next PSA is 10 days out and I'm already feeling the scanxiety), so when there's any change at all it's a confirmation of the angst you had before the test and your nerves are already raw. I could see myself being 100% deflated if my PSA jumped by anything because then it's "whelp, on to the next chapter" and that's a depressing thought.

It's probably normal. Maybe not, but I'm going to say I'm normal 😂. It's also not totally unhealthy to think along these lines from time to time and start preparing for what may come next if things go south. You are on here a lot, as am I, post treatment and I'm here to be a positive force for those needing one but also to keep aware of treatment options and trends in case I do go to the next chapter - which I hope to God I do not.

It would be difficult for me to do so I say this very cautiously: wait for the doctors to give you insight and opinions before you jump to conclusions.

I hope everything is a nothing burger for you!

It is still very low. My first psa post surgery was < 0.02 and the second 0.04. Both, urologist and oncologist told me that this is most likely noise (I hope thst they are right). Now waiting on the results from yesterday’s test.

They may wait to suggest any treatment until there is a series of rises indicating a definitive trend. I know, it’s maddening. Sending a hug!

One example of the real-life implications is that if they do see a suspicious area on a scan, they *might* suggest a biopsy, where before they just would have scheduled a follow-up scan in a few months to monitor it. But with PSA still so low, they may stick with monitoring anyway.

That's literally all it means at this point: the risk is being annoyed by a few extra medical visits.

Thanks everybody for your kindness < 3 < 3 < 3 and for finding time in your busy lives to write all of those comforting comments and also giving me direction of what to do going forward ! < 3

Thanks also for sharing your own feelings and describing of how you deal with them < 3.

One would think that by now I "learned it all" but somehow in moments like this one's brain and thoughts just do their own dance in hazy landscape of philosophical and practical implications. Just when one thinks "I got this" there is a curve-ball thrown in "just for the fun" of it. And when it is thrown every couple of months (instead of years) it is just maddening ...

I can not express (with my limited vocabulary) of how much this amazing group of people means to me and how much help and encouragement you all provide for me in moments like those.

I try hard not to sound melodramatic but I just HAVE to say it - I do not know where I wold be without all of you. I am the one in my whole extended family who somehow was designated from very early age to be a pillar of hope and strength and provide solutions and advise for all (including my parents), so I learned to keep all of my feelings to myself and smile in moments when I scream inside. I also learned early that friends are just humans and do not like being burdened with "un-fun" things, nor anybody without cancer can even try to understand all of the nuances involved.

My husband woke up this morning with smile on his face, thanks God for that blessing, and it would be selfish for me to show distress of any kind - so I smile too, and "make plans" for late summer vacation to Sicily so he can kite-surf, even though that is improbable ( even impossible) for so many other reasons.

So yeah - YOU all are my place to go to find hope and comfort and place where I can say what I actually feel, and place where I get invaluable medical information about possible future treatments. THANKS < 3 million times, thank you.

HUGSSSSS and blessings to alllllll < 3 < 3 < 3

Well, I hope that some venting alleviated your urge to regurgitate. I will just say straight up that these usPSA tests can drive you bonkers, and that how best to read meaning into fluctuating values in the sub-0.1 world is still somewhat perplexing to me.

I had a RARP in 2015. For the next ten years, my PSA remained undetectable (< 0.1). My urologist never ordered a usPSA test. I was below 0.1, and life was good—end of story. Looking back, I wonder what kind of values the usPSA test would have revealed and how much anxiety (and puking) I would have endured watching numbers bounce around or even trend upward. I’ll never know, but what I do know that is I didn’t fret over my PSA for tens years.

In 2024, my urologist detected a small nodule in my prostate fossa during a DRE. We checked my PSA and it was still undetectable, and so no further action was taken. The plan was to test PSA again in a year.

In June 2025, my PSA hit 0.11. My urologist had retired, and I was referred a new guy who didn’t have all my records initially. At first he was unconcerned, but once he saw my records and realized that a small nodule was detected the previous year, he did a 180 and referred me to a colleague in his practice that specialized in advanced PCa. Next was a PSMA PET scan and a pelvic MRI, both of which strongly indicated that the nodule was a local recurrence. I agreed with my new urologist that a biopsy seemed redundant—the evidence for a local recurrence was compelling enough. Fortunately, scans did not detect any distant mets including pelvic lymph node mets, but then my PSA was so low that the PSMA PET scan probably wouldn’t have picked up any micromets. So, some lingering, small uncertainty there.

Three months later, after opinions from two ROs and one MO, I underwent 38 sessions of IMRT to the pelvic region. Now, here is the Law and Order twist to the plot. I did my first usPSA a few days before starting RT and it came back at 0.094. Huh, below 0.1, not above. And, btw, I did a regular test at the same time, and it again came back at 0.11. Yes, different labs, different instruments/protocols, and different numbers. But if 0.1 is that magic number for “detectability", then the differences were important. If I had done the usPSA earlier that year (when I first came in at 0.11), would any alarm bells have gone off? I doubt it. No PSMA PET scan, no MRI. Just a “you’re below 0.1, see you in a year” send off. So, now the 0.094 value was causing me some anxiety that I might be jumping the gun on treatment. The preponderance of evidence was that the local recurrence was real, but my level of certainty notched down a bit. But, my urologist and RO were still solidly convinced that we should proceed with RT, and that doing so, would increase the odds of successful treatment. Despite my bit of doubt, I was still on board with their recommendations. We moved forward with radiation, and I just embraced that fact that I had this small lingering doubt about my recurrence, brought on by the usPSA test.

While undergoing the IMRT, I asked my RO what she thought of slight variations in usPSA, and whether doubling time even applied in the same manner with values above 0.1. Was a change from, say, 0.042 to 0.051 significant? Was a doubling time of 3 months from 0.020 to 0.040 meaningful in terms of cancer aggressiveness? Her response was “no” unless there was a sustained upward trend, and even then she would not take further action unless PSA hit at least 0.1. Basically, she said that usPSA values commonly bounce around, even for someone like me who had a prostatectomy. She also, said that she didn’t put much stock in doubling times of usPSA values that remained under 0.1. Now, this is all just one RO's opinion, but I think it reflects the fact that different docs may well approach usPSA values differently.

Three months post-RT, my usPSA was 0.086. Marginally better than 0.094 going in, but both my RO and urologist were quite happy with that number. Good chance that it will keep dropping, but if it stays below 0.1, whatever the exact value, then I will consider that a reprieve until the next quarterly test. But, that’s the rationale me. The emotional me misses the “you’re PSA is undetectable (below 0.1)”, see you next time” world. That world is gone.

I’m still coming to terms with the usPSA world, and may well be doing that until the end of my days. Tripping over my cat, falling down the stairs and breaking my neck is probably an exponentially bigger risk factor in my life than a 0.002 rise in my PSA. But tell that to my brain at 3am on a restless night.

So, the moral of this longwinded tale is that yes, usPSA anxiety and vexation is a real thing. Vent away.

And I hope and pray that your husband’s numbers stay below 0.1.

@melvinw
Thank you so much Melvin for finding time to write this comprehensive report about your particular case and about your personal thoughts and emotional turmoil that your journey entailed. < 3
I am going to save your summery in my special file where I keep papers with interesting cases and relevant scientific studies.

It gives me some comfort to know that even with very low PSA PSMA scan can sometimes clearly pickup the signal. It is also comforting to know that your doctor thinks that uPSA doubling time does not have the same implications as does a regular and detectable PSA. I found that very same information in some studies done on uPSA levels and their usefulness in predicting BCR for post RP patients.

Oh yes, tell me about “3 o’clock” trail of thoughts : ( , for me it is 4:30 (maybe because I go to sleep at 1 am) and unfortunately "regurgitation urge" did not go away so far, ha ha, but again, my gag reflex is extremely strong and doctors usually attempt only once to put that wooden tongue depressor in my mouth and than profusely apologize for the next 10 min. My face must be a spectacle of agony in those brief 10 seconds of examination. I wish I could see myself and/or make a meme of my face, I would probably have some decent monetary gain out of all that nonsense . My husband jokes that he is my “Wegovy”, because now I have no appetite and I feel nauseous all the time lol. I guess, loosing some weight is not such a bad proposition ; ).

I appreciate your kindness and willingness to hear me out < 3 and I am wishing you uPSA as low as 0.006 in very near future : )))!

PS: I forgot to ask, would you be so kind and tell me if you still remember what was your post operative pathology report saying (gleason, margins, EPE , etc). Thanks so much in advance : )

@melvinw Exactly!! I just spoke to my RO at Sloan after my recent PSA of < 0.05. After he congratulated me I asked why they didn’t do ultra sensitive tests.
He laughed and said why would they? Anything below 0.05 is clinically meaningless and subject to error; even so, they can’t see anything on a scan so how would they treat it?
Now I understand that my situation is different since I had SRT and Surf’s hubby is in a possible adjuvant situation so there are different concerns.
You initiated treatment at 0.11 but usually it is started at 0.2. That palpable lump was probably the key finding more than the PSA, as you’ve pointed out.
Either way, all PSA tests suck and sometimes I wish our results were more like 👍👎…as if that would provoke less anxiety??🤯

@heavyphil Hey, happy for you to see that < 0.05 value! You said it all in fewer words than I did. And yes, the palpable lump that lit up on the PSMA PET scan was the key finding in my case.

@surftohealth88

Glad to share my post RP pathology. I keep it handy. Btw, my highest PSA prior to the RARP was 5.2. My PSA had been rising for several years with an extremely linear velocity (see attached plot).
---
AJCC Pathologic Stage: pT2c pN0 pM
Adenocarcinoma, acinar type
Gleason 3 + 4
6% of prostate involved by tumor
No EPE
No seminal vesicle invasion
No lympathic/vascular invasion
Perineural invasion: present

*Positive margin on right apex*

Right dominant tumor with minimal left side involvement.

*Prolaris Score 1.7 with 53% probability of BCR in ten years*
——

Despite my 3+4 Gleason score, the positive margin and Prolaris Score were concerning for recurrence. Post-RP, I did quarterly PSA testing for two years, then semi-annual testing for three years, then annual testing for five years. Always had a DRE with each PSA test.

The good news in all this is that my recurrence came ten years later, and when it did, my PSA was barely over the limit of detection (0.1).

I will add that on the PSMA PET scan from last June, the palpable nodule in my fossa had an SUVmax of 13.3. I agree with my urologist and RO that PSA is a much more robust biomarker with decades of science backing it up than any reading of uptake intensity on a PSMA PET scan. The scan provided strong evidence that the nodule is indeed a cancerous lesion/local recurrence. The PSA scores are more telling of the aggressiveness of the cancer.

And yes, despite my sub 0.5 PSA, the PSMA PET scan detected the recurrence. And insurance did provide coverage.

Back in 2014, when I was first diagnosed with PCa, I recall telling my wife and friends, “It’s all just a numbers game with probability tables until you hear the words, “You have cancer”. Then, the numbers are still the numbers, but your emotional reality changes.”

As a career scientist, I tend to stayed focused on what hard data are telling me (and what they aren’t telling me), but the data are only part of the reality of living with cancer. Your post was a powerful reminder of that. Thanks for sharing and bringing that fuller reality to the forefront of my consciousness. I am sure that I am not the only nudged by your post.

Hope the nausea has settled today.