Low but slowly rising PSA - next steps

As has been documented here, at 2 years post RALP, PSA Went from <.02 to .02, and 5 months later, to .033.(diff lab).

I know it's way too early to take action on treatment, and I'm told that it's possible that it could level off and stay low for many years without treatment. But, I dunno, after two rises, I feel the need to be proactive. Maybe my way of feeling some control.

So I contacted the office of Dr Zelefsky a few weeks back, and after much effort, got him all my records, including the surgical pathology slides. They called today and gave me an appointment for July 6th.

I have two goals.
1. Be in their system, so that if the time comes that I do require treatment, I don't hve to start getting him records and then waiting for the appointment. I can hit the ground running

2. I am really interested in Zelefsky's take on my situation. I just don't get how, with the Fairly good pathology after surgery, combined with a low risk Decipher score AND a low risk result on my Surgeons own proprietary genomic testing, I could be recurring. But I know this is a strange disease.

I'm not even sure what questions to ask him. But I;l get that all written down before I see him. I'll get another PSA done before the visit. Then I'll be interested in his thoughts.

Before I had surgery, in doing my due diligence, I met Zelefsky's colleague, who is chief RO of the 2 MSKCC Long Island locations. I liked him. Lot, and may even decide Togo back to him. Besides which it would be more convenient. But knowing Zelefsky's reputation, I just want to at least do a consult.

Not sure there's a question here, I'm just putting this out there, makes me feel better to put it down in writing.

Sounds like a great plan to me.
Do let us know what the doc says

Hal, I thought he might even say, no need for an appointment at this time. I was almost disappointed.
But I agree he will probably say not time to do anything (I'd be shocked if he said do something now, especially with the low Decipher score.)
Of course, I'm sure he'll be sending my surgical slides to MSKCC pathology for a second look, so who knows what that will bring.
Ugh, why did I make this appointment again?

halbert said...
Pratoman, I don't see anything unreasonable with what you're doing. Laying groundwork is always a good idea. It will be good to bounce your concerns, and your history off Dr. Zelefsky. The question, sir, is going to be this: what if (and I suspect it will be likely), he tells you to go home and quit worrying about it? Or "get another PSA in SIX months and come see me then"?

That's going to be the real key. I'm all for gathering information and consulting the experts. Letting go of what I think it all means is the harder part.

Not a thing wrong with being proactive, the military would call that situational awareness. My lab PSA reports have always been stated as <0.1 which is undetectable. This is both at MD Anderson and the VA system. Maybe they don't see the value of those super sensitive PSA tests, not sure about that.

Your signature is missing, did you have any positive nodes?

John, nine nodes taken, all negative, negative margins, sv and ECE.
Margin was positive intra operatively, which led to further resection and final negative margin. That's what is concerning me.

Not flipping out here, not even obsessing, just thinking about it, probably a little more than I should.

Nothing wrong with being prepared but try not to obsess about it. Tough I know...

Hi Bluebird. I actually asked his assistant when we made the appointment, if he might want to do a PSA, can I do it before seeing him at labcorp, both so he can have the latest results when we meet, and so I\it would be a valid comparison to the last test that was done at labcorp. She is sending me a scrip to do that.

But I'm also thinking maybe when I see him if I'm going to be under his care going forward, maybe I also ask for a restest at MSKCC so I wE can correlate the results. I doubt Medicare would pay for the two tests so close together, but I don't care.

Hope things are going well on your end.

Prat: I have nothing to add to the experience and wisdom that has been sent your way. What I want to do is thank you for the plan you put forth for others to see and learn from.

I've never met him, but I suspect he will be driven by what you want. I agree with you that, given your good pathology and Decipher scores and low and slow uPSA, there is no need to act quickly. MSK has more clinical trials going on than just about anyone - I'd want to hear about what may be coming up (both results from ongoing ones and new ones they are considering).

Logo, G7(3+4) not G6

Allen, good point, I had not thought of asking about recent trials, but I guess that's a major reason for going to. Place or person like MSKCC/Zelefsky. Also, want to know about advanced imaging techniques they might have Villegas, when and if my PSA gets a little higher.