G7->G9, Now the RO visit

Had my appt with my RO yesterday for about an hour. Basically discussed my medical history since my pre-RALP visit with him. I am writing what I heard vs. what he probably said in its entirety but I listen a lot better now than I did in the pre-op conversations with the doctors when my mind was shattered and bring my updated list with me to cover all my concerns.

He said nothing was surprising although the increased G7->G9 from Epstein was not the best news. He said tertiary Grade 5 was listed in the original post-op biopsy so that was a concern of his in general with either report. He said Grade 5 is the bad stuff and any of it has to be considered in treatment options in his opinion.

Similar to my urologist, he indicated that ART at 3-6 mos post-op vs. SRT+HT at a later time were my options although he emphasized that ART has proven to be more effective against recurrence than SRT in most recent studies. He felt with my one small positive margin and non-detectable PSA at this point, the ART would be the better choice for my situation and HT would be for another day if needed. He said the "do nothing" option is always on the table but the odds of recurrence with G9 and pos margin are not very reassuring, (see MSK charts, etc.)

I asked about other options since they can provide all radiation options or send to Mayo, and he said that standard radiation would be best and no other options would be better for ART. I asked him about other scans, MRI or PET, and he said that PSA is actually the most sensitive indicator of recurrence long before anything else would find something. Since mine is non-detectable at this point, it would just be a waste of time and money. In fact, he said those sensitive scans done too early just tend to turn up other things that may not have anything to do with anything (false positives) and takes you away from the problem at hand.

I am pretty much convinced that ART is the way to go in April at 5 mos post-op. I know some have indicated that it might be better to wait but with G9 it is probably best not take chances. I like the idea of skipping HT at this time also since recent threads here have show a wide range of treatment effects that are not very enjoyable. RT has it set of possible SE also but the odds of not getting them seem to be a little better.

Any thoughts? Am I thinking correctly about everything? I don't see the point of going to Mayo for an opinion at this point to be told the same thing (my RO came from Mayo). Any comments pro or con would be appreciated as I have some time to make decisions. Thanks for reading this.

Well thought out plan. Go for it.

Hi Mumbo,
You and I have about the same signature. I'm also a G-9 Grade 5. I had the RALP, ART plus a 6 month Lupron and 6 months of Casodex. My doc's wanted me to get it going within 6 months and wanted me to be on the ADT while doing radiation. All the doc's I saw first thing out of their mouth was "You know how bad this is, right?" Made my decision pretty easy to make.
Sounds like you are on the right track.
Hang tough, you got this,
Noggin

Mambo, I agree with the others, seems like you’ve thought this through in a sensible and methodical way, so go with your gut.
My one question would be, with G9 and tertiary 5 , why no ADT. Maybe it’s because you have no detectable PSA. I’m sure there’s a reason, it just surprised me.

The impression I got while my doctors were treating my GS9 was that the way treatments are selected for higher-risk cases is different than for less dire cases. With Gleason 7 disease you can treat conservatively, selecting only those treatment modes you are fairly sure you need. With Gleason 9, on the other hand, you just plan to throw everything at it -- surgery, radiation, hormones, chemo, flying monkeys with flamethrowers... the works -- then you can reluctantly cross out the stuff you are absolutely certain you don't need.

I was a little surprised to see that your RO isn't talking about any ADT along with your ART. But it's been a while since I was run through the mill and things might have changed. So I read up a bit on recent research. From what I could find the results were sort-of all over the map but there seemed to be less benefit to adding ADT to radiation for lower-risk cases and also less benefit with adding ADT to early salvage/ART.

So, I dunno. But good luck. I know what that change from Gleason 7 to Gleason 9 does to your head.

You'll be fine.

Hi Mumbo,
As you can see from my signature, you and I have a similar fate. I started ADT about 6 months after my RALP, and then radiation 2 months later.
My RO had the same opinion as yours with regard to the G9 and the "5". Get it done sooner than later with both ADT and radiation.
Please keep us posted.

Thanks for comments, helps me focus.

Prato - I asked RO about ADT with ART and I don't totally remember the answer. Seems he said something about recent stats not showing a benefit to ADT with ART for high risk Gleason done in the 3-6 mos post-op period in my situation. Whereas, SRT is a different animal due to time delay and the stats were more clear there to the benefit. I think I will check with him next week just to clarify but what he said at the time made sense and that answer did not disappoint me

TJ - Agreed, I called the pathologist at Johns Hopkins who did my evaluation and asked that exact question since I was disappointed obviously. He said that regular pathologists do lots of tumor classifications thus they may average the score over a larger area which is how it is done for other cancers. JH does lots of prostate biopsies which Epstein oversees and they focus on the critical condition for diagnosis which was the higher score. He would not say that the other pathologist was wrong but just evaluated it differently. I can see where the difference between 4+3+5 vs 4+5+3 could be subject to interpretation if the 5/3 concentration varies across the tumor section or is close. I don't like it but this is not the first time results have changed so it must be more common than one would expect. I would be interested to see what would happen if Mayo or MSK sent their slides to JH for a second opinion. My guess is they would not always agree either.

Peter - That sounds consistent with what I have read also. Sometimes what seems obvious is not when it comes to this stuff after more studies are done. My RO is pretty up on things and came from Mayo so I have no reason to doubt his current knowledge. I will double check though. Yeah, the upgrade crushed me for a couple of days after I got the call. I bounce back quicker now than last Aug/Sept.

InTheShop - Those flying monkeys have visited my butt a few times during this ordeal.

Capt - I am going to double check the ADT part as suggested.

Sky - Hi again, your thinking is where I was at and what I expected but if recent studies are not bearing that out for my condition, it would be overkill for no good reason. I asked and he was pretty clear about it, I just don't remember the full explanation clearly now.

Thanks again everyone.

Prato - The only way to evaluate this properly would be to pass a set of slides to a bunch of path labs and collect the independent reports. JH usually always has a copy of the original path report when they do their work and I assume MSK is similar. It is very common to do "round robin" testing when to trying to get the repeatability of an engineering test method established between labs. If the variance is high then the test method has to be tweaked until everyone can get close to the same answer. I think the pathology is a little more subjective (than say a PSA test which seems to have a fair amount of variance between labs and equipment) thus probably more variance in pathology depending on training and experience is to be expected.

To All - The RO's nurse got back to me and indicated that he said with my high risk profile and non-detectable PSA, recent studies have indicated that there is little benefit observed adding ADT to ART. He said they will test my PSA again before proceeding with ART and if it is detectable, they will switch to a ADT + SRT protocol thus a different schedule. He said he could always do it if I really wanted to.

OT Item - I tried the pasting the signature in from a Word document and it still cuts it off for me (see below). Is there a trick to this? It truncates the paragraph after I paste it in my preferences also.