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Bahhhhhh, uPSA going up : / ...
Prostate Cancer | Last Active: Mar 16 11:18am | Replies (44)Comment receiving replies
@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 : )
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@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).
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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*
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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.