Surgery, plus a decade

Surgery was ten years ago this month. Wow, time goes by fast!

All my stats are in my profile and in the posts I’ve made over time. But, to summarize, Gl 3+4=7, one 3mm margin that Epstein rated as 3=3=6. Went five years undetectable on uPSA, then five years of slowly rising uPSA. Doubling time roughly two years, depending on what time range you choose to use for calculations.

SEs since surgery:

Urinary: had very slow stream prior to surgery, now that’s fixed! In first year after surgery, had about three instances when I woke during night with quarter size spot on underwear. Since then, things are very good with a few kegels here and there. Sometimes in last couple years, lifting weights (esp. deadlifts) will lose one drop. Need to do the kegels more regularly.

Sexual: had a number of years under T supplements (T gels, then T shots). That, plus pretty intense yoga, aerobics, and weights, finally got me to the point where I could go off the T stuff and handle things myself. Now, I maintain T in 500’s at age 72, w/o T supplements. Generic viagra (sildenafil) works pretty well now. And, having also been on escitalopram (generic Lexapro) six months, I can honestly say, mirabile dictu (Latin, “remarkable to say”), I can go as long and as hard as I ever could, perhaps better. However, some threads here have discussed marital situations, post-menopause and with partner declining interest. And so with me, I often have to take my newly found superpowers, stuff them back in my superman tights, and call it a day (or “call it a night”). Sigh. Just Mother Nature’s way of having her little jokes, I guess.


Future treatment:

Have been watching my uPSAs pretty closely. My uro, who did my surgery and whom I still see annually, says wait until .4 or greater, locate hot spots on scans, and treat them, rather than a shotgun approach now. OTOH, I did apply last fall for a national clinical trial, the purpose of which was to follow men approaching BCR and following them further, to see how the new scans can help guys determine treatment course. Found out they had run out of money to pay for the scans, but the docs said if I wanted to pay the clinical rate of the series of GA68 scans, at $3100 a pop, they “might get me in”. Uh, thanks, I politely declined. I'm not wealthy.

I have been watching my uPSA closely as I wanted good lead time should my uPSA "make a run for it" and turn up sharply. But I have been slacking off recently and will continue to lengthen the time between tests. Just need frequent enough to catch a sharp uptick and allow time to get hooked up with a major institution. Closest big ones are about 250-500 miles.

my uPSA history:

https://imgur.com/pmnoxkr


So I am left to decide what to do as time goes by. And try to figure out if I going to die of something else before clinical PCa symptoms, if any, cause me problems. Will keep you posted!


Thanks to all for ten years of helpful posts. Much appreciated.


Robert

It’s always amazing to me how surgeons and RO’s disagree on when to treat with salvage.
Like your uro, my surgeon advised me to wait until PSA hit .2, then scan and if nothing showed, wait till .4.
And at the same time, two highly regarded ROs both advised me to treat early, at .08.

Bobbiesan, congrats on 10 years, hope your PSA just stabilizes and does nothing for the next 10

So,
if I'm reading things right you haven't had SRT.

The availability of the newer scans is clearly mixing things up a bit these days. A PSA of 0.2 or even 0.4 seems pretty low for even the best scans to find every micromet that might be in your nodes.

For me, I might be most comfortable with SRT and possibly 6 months of ADT.

HI there, belated congratulations on passing your ten-year anniversary!

I'm less far along, but looking around to see what the future might hold for me.

Had my RP June 2020 and was fortunate to get down-staged when they looked at the resected prostate. No cancer in nodes or seminal vesicles, no positive margins, 3+4, maybe 30% 4, tumor maybe 5% of the prostate but was present on both sides.

PSA was undetectable until Sept 2022, when the Beckman DXI machine my doc uses came back with a barely detectable value of 0.01 (which is their lower limit of detection).

Once my doc starting testing me only every 6 months, I have been going to Labcorp every 3 months, with an undetectable uPSA of <0.006 each time -- including a test in October 2022 (a month after the DXI value of 0.01).

I know you can't compare numbers between the different assays, at least in a quantitative way. Just wanted a second independent reading.

But just today I got a value of 0.03 from the Beckman DXI machine, just 3 months after the 0.01 number from the same machine. Not reasssuring, and a bit surprising since I went over two years undetectable by both assays.

I'm assuming there is some error in both assays and it does seem likely that I don't actually have a PSADT of less than three months. But I am going to go back to Labcorp to get another reading from their Roche machine. And my doc will re-measure in 6 weeks on the Beckman DXI machine. Will try to be patient!

I am however wondering what people's thoughts are on differences between assays when the numbers are low (0.01 to 0.1).

Thanks for any thoughts.