G9 update. Slow but steady progression.

Well... 0.20 could be worse.

Plan is still to do a PMSA scan somewhere around 0.5. Hopefully at least a year away.

I read posts pretty well every day now but rarely comment anymore. You never know, there might be some great breakthrough.

Hello, TooYoung4This ----

I always follow your posts, and your post reminds us all that we have many readers who visit here frequently, from far and wide.

Appreciative of your update --- and thankful your PSA is still in those lower decimal ranges.

From your update, I can tell you are remaining vigilant --- and you have a proactive plan in place.

Dr. Kwon, at Mayo Clinic, has taught me the paramount importance of staying vigilant. I usually visit him twice a year, to update various scans, which are then immediately shared with my local oncologist.

Dr. Kwon famously exclaims, "Imaging, imaging, IMAGING!" --- in terms of staying on top of one's medical case.

I check in with my local oncologist, who co-manages my case with Dr. Kwon.
He goes through my lab work each time, with a fine-toothed comb. Together, I feel they comprise my medical DREAM TEAM.

It sounds like you have a PLAN OF ACTION, whenever it is warranted!

Meanwhile, keep living life OUT LOUD and to the fullest, like you have been!

Keeping in touch, from across the miles ----we're brothers, one & all, here!

CYCLONE - # Iowa State University
.

Im 10 years out this month.. I can't seem to update my profile stats but my psa up to 4.9 this July, Axumin and CT showed 2 lung nodules, bronchoscopy in August confirmed prostate mets. I have no symptoms, started enzalutamide 1 day ago, getting in the que for Provenge. Interestingly I was castrate level testosterone since Firmagon and radiation, last doses in 2012. T is currently 3. Im gonna look into available trials in Seattle. My original oncologist retired early 2020 and it took almost 18 months of no care/monitoring to get to todays point. No one would even call me back, the 4th office/Doc finally did after pulling many strings, and I work in healthcare/surgery daily with cancer patients. Beyond frustrating and I can only imagine the hurtles patients without connections must face.
That said, I see several exciting promising treatments in trials now! I believe G9 will be controllable

I have been in the G9 club for 6 years now. Did surgery, radiation and hit non detectable for 6 months, then a slow rise from that point onward. Last year at the 6-month PSA tests, PSA started to climb faster. I decided to stop with the URO and through this forum, found Dr. Sartor at Tulane. 1st PSA in January for Dr. Sartor hit the 0.20 mark and he ordered monthly tests. Now Dr. Sartor has me going in for PSA every other month and August test was still at 0.20. Dr. Sartor has same game plan for me, PMSA at around 0.5 and go with radiation. Like you, I am hoping my PSA will hold steady for as long as possible. I feel fortunate to have done as well as I have and hope for the best for all of us. I am with you, there might be some great breakthrough

Another G9 update...

Sept 21 was .20
PSA now 0.15 seems to have gone down a bit.
I honestly wasn't really expecting that but will take it!

Cyclone,
I'm pretty low key... a slight grin, a sigh of relief... that's about it. No cartwheels or dancing in the street until we find a cure for all of us.

Another update:
June 14th 2022 PSA 0.19

Anyone have any insight?
I'll take the slow progression over a rapid increase but how normal is this?

No wizard here (by a long shot), but let's remember that (1) the right-most digit of any test result has the most uncertainty, (2) tooyoung4this's recent 0.19 is still below the 0.20 earlier result, and (3) it can take quite a few data points to compensate for the fluctuations we often see, especially if any upward or downward trend is very gradual. IMO, these fluctuations can be grouped into those (a) related to our physiological ups and downs in PSA, whatever arc this span, hourly? weekly? monthly?; (b) intrinsic variability of the test method (repeated tests of the same sample can vary); and (c) variability due to testing parameters, such as equipment calibration, sample preparation, perhaps reagent prep, etc. Finally, judging by my own PSA results, some values seem to plain outliers, since there is a sudden jump upwards and then back down (lab error?, a convergence of these variability factors all in the same direction on a particular day?)

With regard to (b), an independent study found that the Roche assay that Labcorp uses, when testing a known target PSA concentration of 0.010 twenty times, had a standard deviation of 0.001, so if we take 2 S.D. (which is usually what's done to capture about 98% of everyday samples), we get a variability of +/- 0.002 for repeated tests of PSAs around 0.010. I don't know what one S.D is for a 2-decimal test, but I would not be surprised if it were, say, 0.005 or perhaps even 0.01.

During the first two years or so post-op, I was concerned about my PSA results with the 3-decimal Labcorp test until I grasped the extent of the fluctuations. I know my uros had a hard time knowing when to ask me for a biopsy because my PSA pre-diagnosis tended to fluctuate while, overall, still trend upward slowly because of my BPH (and in the end probably my PCa as well) . Perhaps my post-op, minute amounts of PSA also vary a bit more than other men (?)-- in other words, maybe some men have results that fluctuate more than others. We know that some anatomical structures left behind after a RP (e.g., the urethra, Cowper's glands) produce tiny amounts of PSA; perhaps with age the total volume of these tissues changes slightly, which might account at least in part for some variability.

Djin

As we know, the the "official" PSA definition of BCR is 0.2 and rising, but Johns Hopkins docs originally proposed 0.4, because some men have a rise that then plateaus. The consensus is that the later, BCR occurs and the slower the rise, the better the prognosis.

I would even wager that you won't reach 0.5, and even if you do, it may be at an age when it's not a pressing matter or could be treated with ADT alone. The time from BCR to clinical recurrence is 3-8 years, with the average around 5, if I remember correctly. Many men with BCR do not go on to clinical recurrence (detectable lesions), but younger men generally treat BCR out of caution).

PSMA scans are changing the picture, and I, too, may wait beyond 0.2 should my PSA increase.

Djin

Post Edited (DjinTonic) : 6/17/2022 9:45:28 AM (GMT-6)

Glad to hear from you!

I'm always thankful when my test results indicate stability, and I can tell you are relieved to hear that you are registering in that decimal range.

When I was first diagnosed, with my PSA skyrocketing up over 100, I never dreamed I would have a PSA in the decimal range, ever again.

You have shared an affirming story of long-term SURVIVORSHIP, over the course of years.

Newly diagnosed fellows visit here seeking HOPE & your story helps keep that beacon lit for others!

Here's to a great NEW YEAR ahead!

With my best ~
CYCLONE ~ # Iowa State University

Cyclone... always good to hear from you and I appreciate your positivity. I don't post often but drop by to read daily. Your positive posts do a lot more than you realize.

Djin... you are correct... no adverse findings. Staging was pT2a

Cyclone,
I was waiting for my March blood work before responding. Yes, being dx'd at 42 made me a definite outlier. I've gone through a number of doctors over the past ~12 years and a couple still keep in contact with occasional phone call or email even though they've moved on to other things. Being the same age as some of them gave me an inside personal track. Lol.

Happy to say psa results are 0.25. So staying the course for now.
Anyone have any thoughts as to what's happening? And what the "official " doubling time would be?

I read posts here almost every day. Always looking for signs of hope!