Gleason 6 Recurrence

As a data point, I had RRP surgery done last August at Mass General in Boston. After 3 biopsies with 52 total cores taken while on AS for 5 years only ever finding G6, my pathology from surgery showed an upgrade to G7(3+4). I wanted to know how much was pattern 4 vs 3 but Mass General doesn’t provide that so had slides re read at John Hopkins. They had it as 90% Pattern 3 and 10% pattern 4 but did show EPE+ whereas Mass General had it EPE- Both showed negative margins. So in looking for more info, I ended up with a different read from 2nd opinion on pathology.

Btw, Mass General still having me do the standard PSA test not the uPSA. My first test at 3 months came back at <0.1 which they call undetectable.

waiting for decipher test results and pathology re-review. Anybody have an idea as to how long Decipher post-RP test takes to come in?

Thank you all.

Prato:

My sense is that he is not sure what is happening...wants to get more info with re-read of pathology (my idea) and Decipher (his idea). Offered me a 3 month follow-up, a referral to a RO or a Decipher. We settled on getting the re-read and Decipher and seeing him in a month (or as soon as results are in).

He doesn't want me to jump too fast, but he believes it will still keep climbing, albeit slowly...

disheartening...

Dear hogo2000,
I agree with Prato!
No doubt there is a trend, but even with this trend your numbers are still below detection level in many labs. I know for a fact that < 0,05 is the cutoff is still used by many labs in USA and Europe, so for them you still will be undetectable and no one will see a trend ... not much data about what to do in such cases, either...especially with your very benign pathology. Even if your Gleason would be upgraded ( I hope not! say from 3+3 to 3+4, if tumor was removed without positive margins it will likely not change much)...
I am not an expert, but trying to help you to have some peace of mind ...

Thanks Chris

Actually saw doc at Brigham and Womens. Pathology was confirmed G6 after re-cut and re-read.

Decipher didn't come in because insurance wouldn't pay for it. Have to look into the why's and hows...Dr. Kibel didn't think I should pay out of pocket as it wouldn't change whether to have radiation or not. I wouldn't wait forever if it were low-risk and if it were high-risk, I wouldn't wait more than another test.

He was very positive. Said let's test in a couple of months. Doesn't think anyone would/should have SRT until .1 with my pathology. He thought there was likely some BPH and some cancer cells still in area producing PSA.

But...we agreed that one more rise will earn me a visit to a RO (my suggestion not his). He is very good at his craft and extremely good at patient management...as this disease causes much anxiety.

Like most on here I do not have a great deal of knowledge regarding Prostate cancer. I can add my personal experience.

I also realize that I am more fortunate than may and I am very grateful for that.

I had a robotic prostate surgery at Princess Margaret Hospital in Toronto on September 28, 2010. My pre operation PSA was 5.07 and my biopsy grade was 6.

Post surgery my gleason score was upgraded to 7, 3 + 4

My PSA was undetectable every year (under .05) until September 2017, almost 7 years later when my PSA was .06 My doctor was not concerned but wanted to do a re test a month later. I had the retest 6 weeks later in October and again it was .06

My doctor Neil Fleshner who is the head of urology at Princess Margaret told me he was convinced that this was just noise and not to be concerned.

I went to South America for the winter and tried to put it out of my mind, I studied Spanish and forced myself to not think of the PSA for the most part, realizing that it is what it is and worrying about it would not change it. Of course I had my moments but for the most part not often.

I just returned to Toronto last night and went to Princess Margaret Hospital for my PSA test this morning. I got my results online this afternoon and I was very surprised it is under <.05

So in almost 7 months it has gone from .06 to < .05 Of course I am very pleased, I have no idea what is going on having read that pretty much everyone who has a PSA of over .03 has a recurrence.

I am dealing with this that the .06 was noise, and it is certainly going in the right direction.

I am sharing this to show others that it can happen and if I was at <.02 and my PSA went to .02 I personally wouldn't bat an eye.

I wish every one here all the best in health and the best of luck. Any comments on my situation from the knowledgeable folks on here would be appreciated.

Cheers.

That's an interesting question Gary, I read recently of a guy who pulled the trigger on radiation at .03 four years after surgery. I know there are studies to suggest that is the trigger point. In the end it is a personal choice, we all think of life and treatment differently depending on age, gleason score, pathology, quality of life etc.

Personally I would not consider it at any time under .1 unless it was a very short time after surgery or your PSA never hit zero after surgery. As I said, each to his own.

My first post rp psa was <0.1. That is as lowest detectable that lab has. My URO was pleased with that. For my most recent PSA tests used a lab that had a lower detection floor. I wanted to see in the .001 range. My recent PSA is 0.05. I don't think it is even worry time till I gets to .1 or above., and treatment time at >.2. As reading here any result of < 0.09 can have noise. Good luck but I think you have solid worry free numbers so far.

I guess your age has something to do with the aggressive ADT +SRT plan and also waiting till 0.1 considering you are a G6. Looos like a perfect plan.

hogo2000 said...
Had a consult today at Dana Farber with Dr. Nguyen. Liked him a lot. So that part is done. He is not sure I am having a recurrence.

hogo2000,

It would help me if you could clarify this. Did the doc discuss with you, if it is not a recurrence, then what is going on instead?

Reason I ask is, the doctors I talk to, and some others I read about, when talking possible recurrence, often bring to mind the following scene from Close Encounters between Roy (Indiana lineman who has had UFO hover over his truck) and his wife:

Roy: Ronnie, all I wanna do is, is, is know what's goin' on.
Ronnie: But nothin's going on. It's just one of those things.
Roy: Which things? Which things?
Ronnie: I don't want to hear about this anymore.

Maybe it's just me...

Many thanks,
Robert

I think you should consider approaching tis in exactly the same way that a man with a GS 6 approaches active surveillance..

The most likely scenario is that there was a tiny bit of GS 6 left behind. Most of the time, GS 6 never progresses to anything more than that. It is probably something that you can safely watch for a lifetime and never need to treat. Here's an article about that:

/pcnrv.blogspot.com/2017/11/myth-gleason-6-never-progresses.html

The main difference is that you can't biopsy to track progression. But you can monitor PSA, and maybe take an mpMRI every few years. If your PSA rises above 0.2, one of the new PET scans may be able to locate the site of failure.

There was a randomized clinical trial (RTOG 9601) of SRT with or without adjuvant ADT. They reported: "those patients most likely to benefit from the addition of AAT included men with adverse prognostic features—namely, those with Gleason scores ranging from 7 to 10, entry PSA values of 0.7 to 4.0 ng/mL, or positive surgical margins. In contrast, little difference emerged between RT plus AAT versus RT alone in those with a Gleason score of 2 to 6, an entry PSA level less than 0.7 ng/mL, or negative surgical margins."

/gucasym.org/daily-news/rtog-9601-supports-adding-ht-rt-salvage-therapy-following-radical-prostatectomy

So you are NOT in a category that would benefit from adjuvant ADT.

Paul Nguyen had published a small retrospective study with somewhat conflicting findings. When I asked him about the conflict...

Paul Nguyen said...
Dear Allen, Great question.You are right. Our study was a small retrospective study while the rtog 96-01 was a large randomized phase iii and so our finding was not concordant with the randomized trial and I would trust the randomized data more. However it is not necessarily the case that we can definitively say that patients with negative margins do not benefit. I would say that if a patient had high risk Gleason 8,9, or 10 and had T3 Disease and a rising Psa I would still give adt even if the margins were negative

I know Howard Sandler (principal investigator of RTOG 9601) does not give adjuvant ADT with SRT unless PSA=0.5 (ROs will have different thresholds for adjuvant ADT).

But it looks like, whichever way you cut it, you would not be a candidate for adjuvant ADT at a PSA of 0.1, according to your own doctor.

I was a 3+4, but had a similar reading...

I was nervous when I had a reading at .02 with my Primary Care Physician early this year.

USMD, the surgical team in Arlington TX that performed the prostectomy, did another PSA this month. It was .01. I admit I was worried about it. My wife thought I would be ok.

Follow the docs orders, but try to not worry yourself too much where it hampers your everyday life.

Take care!

Eric

Had a consult with Dr. Irving Kaplan at Beth Israel today. He suggested starting SRT now...or at latest at next increase.

No ADT. No whole pelvic radiation. just prostate bed. 68.4 GY. thought the increase was real, but curable. Very nice guy. Nguyen wants to wait if/until .1 but with 6 mos ADT.

My sense is to wait for another increase, certainly not start now.