Shocked at Post Op Pathology Report

So I did confirm with the Uro office that the PSA is .40 (nine weeks out). I'm trying to get an appoint with the surgeon sooner than the currently scheduled appoint for the end of this month. I did have Positive Margins and the surgeon said my prostate was hard to get to. I had already scheduled an appoint with the RO at Mayo Clinic for this week to discuss my case. I feel like I need to get started with radiation and possibly joint ADT as soon as possible with a Persistent PSA score that high.

My Best Doctors case report post-op told me to watch closely for rising PSA given my adverse pathology but I'm sure they'd be surprised my first PSA was .40. I had completely stopped finasteride use after the surgery. Finasteride (Propecia for hair loss) suppresses the PSA but I don't believe that should factor in given I shouldn't have any PSA.

gary was it recommended to you to keep watching for a rising number?

AZ Guy....if you tell me what you learned at the Mayo Clinic, I'll share with you what I learned at the National Cancer Institute.

I will post a full report tomorrow.

scar....if you post your email address in your profile I'll get you more data. Where do you live, what insurance do you have, what specialists are you seeing now, your latest PSA reading, your last Gleason score, your husband did have surgery IIRC...all this data in your signature would assist greatly in sending you more focused information.

The best way to get a referral to a clinical trial at the NIH is through your physician.

An Endorectal coil 3T mpMRI exam, locally if possible, will help determine if there is a remaining tumor in the prostate cavity. Only four months after surgery and I have such a tumor, it's significant, at 2.6cm.

Getting Axumin PET scan is also a good idea. It's an FDA-approved, Medicare-covered CT PET scan that can show early detection of recurrent prostate cancer after surgery or radiation.

Hopefully AZ guy will come back and share what MAYO is doing for his persistent PSA.

Post Edited (garyi) : 11/11/2017 1:16:10 AM (GMT-7)

Gary, I added my email address. Thank you for your help.

Post Edited (scar1919) : 11/11/2017 8:00:02 PM (GMT-7)

scar1919-

The purpose of the PET scan is to rule out distant metastases as the cause for the persistent PSA. It also sometimes detects cancer in pelvic LNs. Once you can rule out distant mets, he can go ahead and have salvage radiation with greater confidence that it will be curative. If they see involvement in any of the pelvic LNs, he could have radiation to both the prostate bed and the pelvic LN area. If there are distant mets, radiation will only do harm with no benefit, and it would be better to start ADT immediately.

The humerus would be a very unusual place for a first bone met. i've never heard of a full-body MRI (only a pelvic CT or MRI) being used, except in conjunction with a PET scan. I don't really understand what they hope to learn from that - sounds like a recipe for needless anxiety, imho, not to mention the cost of it and the amount of time in the machine.

He can get the best PSMA PET scan (called DCFPyL) for free from NIH. It's better than Axumin too. I have found that the folks at NIH are happy to talk to patients directly. Just call Contact: Yolanda McKinney, R.N. (301) 443-6913 ymckinney@mail.nih.gov

Here are the trial details:
/clinicaltrials.gov/ct2/show/NCT03181867

Try Peter Choyke - he's the principal investigator for the trial.

pchoyke@nih.gov

301-402-8409

Gary, so it looks like the criteria to be eligible for the scan is psa >.02, if you don't have high risk pathology?

So that leads to a decision, does one hit it early? Or does one wait for .2 in hopes of avoiding useless SRT should the source of PSA be distant micrnets, thus taking the risk that by the time it does hit .2, it actually has metastasized.

I know that doesn't apply to persistent PSA but to others who have been undetectable, then become low detectable that is unstable.

Is this a correct interpretation of the discussion?

1. The criteria to be eligible for this scan is that the PSA greater than or equal to 0.2 ng/mL (after surgery).
2. The metastasis incidence rate is 15% among men treated with SRT at PSA levels of 0.2 to 0.5 ng/mL.

So this scan could identify those 15% and then giving them ADT instead of SRT. You must be very sure that the scan result is correct to say no to SRT.

Tall Allen said...

Pratoman said...
So that leads to a decision, does one hit it early? Or does one wait for .2 in hopes of avoiding useless SRT should the source of PSA be distant micrnets, thus taking the risk that by the time it does hit .2, it actually has metastasized.

I assume you meant that there is no real question, and that no sane person would do that. It would be a self-fulfilling prophecy to wait until distant mets are detectable.

Nobody said i was sane.

But regarding your post, thats my point. Lets say my PSA, currently at .03, rises to 04, then .05, then .06. then .09 Time to hit it, right? I'm pretty sure Zelefsky would say yes, even at .06, based on my meeting with him. But i would hate to go through SRT, only to find out the cancer was elsewhere. At this point, no approved scan is going to detect anything. Maybe this new scan would. (or maybe i'm mistaken). And if it did it would allow me to avoid unnecessary SRT. But as you said, if i waited till .2, it could turn out that it was in the prostate bed, which we'd never know for sure, but now its out and about, its become a self fulfilling prophecy.

So its a quandry. It's something Gary and I have discussed. I really dont want SRT. If PSA continues to rise, and i have a way to know its in the prostate bed , i'm all in. But what a sh!tty thing to have if it wasn't going to do anything anyway except maybe give you strictures and bowel problems.

My point is, other than someone who was never detectable to begin with, why would anyone sign up for that trial if it meant they had to wait until .2

Post Edited (Pratoman) : 11/12/2017 3:55:19 PM (GMT-7)

Tall Allen said...
No sane person is going to wait for PSA to rise just so he can be eligible for the trial. The trial is for men who are already at a PSA over 0.2 after prostatectomy. Some have persistent PSA, like Garyi; others just waited too long. Fortunately, we know that distant mets at low PSAs are unusual (as Gemlin pointed out), and the prostate bed is usually a wide enough field for salvage radiation. In my mind, the biggest potential benefit of the PSMA PET is to identify whether the pelvic LNs should be included in the radiation field; but with very low PSAs, the likelihood of finding cancer there is limited.

There really is no quandary if your goal is cure. We know from 3 major RCTs that the wait-and-see attitude is inferior. Can you be 100% certain without an advanced PET scan? - no, and not even with one. If you want to know the odds your recurrent PC is curable with SRT, the best you can do is use a nomogram. Admittedly, the stats in the nomogram won't have much basis of men with your exact specs:

/pcnrv.blogspot.com/2016/08/probability-of-remaining-recurrence.html

according to this nomogram.....G7 PSM+ SV- EPE-

no ADT......delaying radiation for PSA to rise from .05 to .2 results in a negligible difference in cure rates. (even waiting as long as PSA of .5 only results in a single digit percent difference in cure rate)

with ADT....one can with until 1.0 (or even higher) and get the same results.

Am I reading this wrong?

scar....thanks for all the info, there is lots of PET scan data here:

http://downloads.hindawi.com/journals/bmri/2014/827265.pdf

AZ Guy....thanks. From all I've read, MAYO is suggesting the correct treatment for you. No surprise there.

Allen....just thanks, thanks, thanks!

Prato....we're talking persistent PSA. Check your very low PSA again

Post Edited (garyi) : 11/13/2017 5:39:03 AM (GMT-7)

This points to a difficulty in using "8-yr metastasis-free survival" as a surrogate endpoint. It's a problem I have with Decipher as well. Because of long lead times in the PSA era, PC is usually treated very early in its progression history. That means an intermediate risk patient, even if left completely untreated, will probably not develop detectable metastases within 10 years of his initial diagnosis.

We saw this in a recent active surveillance analysis of intermediate risk men from Sunnybrook. They observed them for twice as long - 15 years - and found that metastasis-free survival was 84% for those diagnosed with GS 3+4, and only 63% for those diagnosed with GS 4+3. (Even GS 3+3 has been found to progress in half the cases if given long enough.) I would guess that the debulking of the RP slowed detectable progression even further. And in all of these studies, "detectable metastases" means detectable with a bone scan, and not with PET/CT. Bone scans require larger tumors for detectability. The presence of systemic micrometastases, which renders the cancer incurable, undoubtedly begins much earlier.

So, if life expectancy is only 10 years, GS 7's who have a recurrence may not need further treatment, but the average age at RP is about 60. If life expectancy is greater than 10 years, I think there is a lot of risk in delaying SRT, based on what we know now.