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SRT and GLeason 9 with ECE

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Posted 2/10/2015 12:40 AM (GMT 0)
I have a question (and what I think is an amazing story)
There is a lot of talk here about SRT at .2 PSA post RP, after a couple of consecutive confirming PSAS and even at less than .2 based on some recent studies posted by TA .

So, if the post Surgery path report shows G9 with ECE, WOULD ANYONE DO SRT? Or straight to HT?

The back story concerns the father of a friend of mine. He had RP 13 years ago, with G9 and ECE. Not sure if he ever got to undetectable PSA, but for most of the next 7-8 years his PSA hung around 2 (the whole number 2, not .2). With no treatment, other than him taking all kinds of supplements on his own.
I find that amazing .
Then just in the last two years or so, his PSA started to rise. No crazy numbers, but a steady rise. So he went on HT. PSA dropped, and I believe about a year ago, went off HT. Back to Dr last week, took blood draw for PSA, and was told to expect a PSA rise, and probably would have to go back on HT.

Got results today, PSA undetectable, GLEASON FREAKING 9 WITH ECE! 13 YEARS!
I'm so happy for this man, he's a good guy, and seems to be blessed.

So the question above about SRT, I may be missing something, I guess with ECE it probably makes sens to not consider SRT?
And jus an amazing story that should give hope and optimism to everyone here.
Posted 2/10/2015 12:56 AM (GMT 0)
I never considered it Prato, went straight to HT and don't regret it, always knew I would probably have to do HT. I don't think it does not mean you should not consider SRT, just not for me.

Cheers, Doig
Posted 2/10/2015 3:48 AM (GMT 0)
Doug, (or anyone) did any off your DRs recommend it? Is it a standard protocol to recommend or not recommend it wit he ECE?
Posted 2/10/2015 4:07 AM (GMT 0)
ECE could still be local, hence curable in that situation. Some would say the fact that it takes so long to progress it has higher odds to be local. SRT would still be a viable option for a cure. There is medical literature on this point.i.e. That the longer after primary treatment a recurrence occurs the better odds are that it is local. This is "common" knowledge in pca medical circles. The real crap shoot is not the disease but the treatment imbroglio. Your friends case argues against a rush to judgement on SRT. { an afterthought, released from previous statement.}
Posted 2/10/2015 4:22 AM (GMT 0)
Logos, I probably wasn't clear, I am referring to the time soon after surgery, when the PSA got to 2. At that time,I wonder if SRT shows or would have been offered as a viable option.
Posted 2/10/2015 4:52 AM (GMT 0)
No, you were clear, you mentioned, .2 or the lower levels, using TA's different studies reco's as def ignition of recurrence. In your latest post you either upgraded the latest post to 2.0 by mistake or you are changing the .2 to 2.0. In either case it could still be local, tho, arguably the higher score would decrease the odds to an X factor by some degree, so the dice will be thrown again. Are you feeling lucky?
Posted 2/10/2015 6:03 AM (GMT 0)
Prato,

I don't think you fully appreciate the typical natural history of the disease. Fifteen years from recurrence after RP to death is still below the median survival. This is why there's so much controversy about SRT - as I think I mentioned in every article - the survival advantage of SRT has not been proven yet- we need bigger and longer f/u studies. The closest we have is the study from UCSF that I wrote about recently:

Does early salvage radiation save lives?

- Allen
Posted 2/10/2015 6:11 AM (GMT 0)
Hello, i am researcher by profession and working on tuberculosis. I have read may research articles and have found research articles indicating good results by use of pomegranate juice every day. Drinking pomegranate juice if helps then giving try is not a harm. Good luck friends.

jannet
Posted 2/10/2015 12:50 PM (GMT 0)
Prato, when my first post op PSA (@12wks) came in, my surgeon (in Sweden), referred me to an RO. I cancelled the appointment. Considering my path report, which was good, other than EPE, in regards to have not being spread locally and doing some simple math ( pre and post PSA) I concluded (rightly or wrongly) that in order to have a PSA of 1.15, the surgeons would have to have missed about 1/3rd of the PSA producing cells in the local area. I found this hard to accept and felt that the Pca had already spread to distant sites. That was the main reason for no radiation, I thought HT would be a better path to take, systemic. As it turns out I was right as mets showed up on later scans, SRT would not have helped.

Call it a gut feeling, lucky guess, whatever, my un-scientific determination seems to have saved me some un-needed radiation, in my case. I think a G9 (person) has a different mindset than a G6/7, at least I do from what I've read here. I have focused on control rather than cure since recieving my path report, I knew I had EPE and PNI along with a lot of 4's and 5's, good combination for mets so again, the systemic approach.

My surgeon had told me the night before surgery, the trigger would be 0.03 for follow up treatment (SRT), when it comes back 50 times higher than the trigger it sort of made up my mind that mets were present. Anyway, for what it's worth that was my (logic).

Cheers, Doug
Posted 2/10/2015 2:25 PM (GMT 0)
Got it, thanks Doug.

What I am realizing is that ECE doesn't necessarily mean the PSA is coming from somewhere more distant than the Prostate bed. Thanks Logos.
Also, to clarify, I mentioned .2 as the trigger often referred to here as BCR. The whole number 2 was referred to as my friends PSA after RP.

Allen, thanks for referring me back to the article. I re read it, but will go back and re read it again, since I read it on the treadmill. But from what I am seeing, reading, and hearing, it seems like a rise in PSA to a BCR level, after primary treatment, may or may not call for SRT, its a pretty subjective call and every situation is different.
Still, I wonder why my friend, 13 years ago, when his PSA was up after surgery, was not referred to an RO, and got no treatment.
I find that strange.
Posted 2/10/2015 2:45 PM (GMT 0)
Reread your initial post and see the 2.0 after 7-8 years. Still SRT would be a viable option for a cure,but possibly less so, tho Im really not so sure on that,i.e. the less so. Odds are it is still local, but then again it could be local as well as systemic. Edumacated rolls of dice are needed.
Posted 2/10/2015 2:47 PM (GMT 0)
Prato,

"What I am realizing is that ECE doesn't necessarily mean the PSA is coming from somewhere more distant than the Prostate bed."

I think that's too simple, there are other factors to consider. Pre surgery PSA, post surgery PSA, PSADT, positive margins, SVI gleason grades etc. I guess your statement is true but a bit vague or ambiguous.

Cheers, Doug
Posted 2/10/2015 2:47 PM (GMT 0)
I agree Jannet on your conclusion.
Posted 2/10/2015 3:48 PM (GMT 0)
All this proves that If I find myself in a possible BCR I shoodnt try to be my own Dr. Or anyone else's for that matter.
Posted 2/10/2015 3:55 PM (GMT 0)
Yep! The bright side is your stats combined with a low BCR PSA (IF there was one), would make your decision easier, I would imagine.

Don't twist this thread to your situation Prato, it really doesn't fit.

Cheers, Doug
Posted 2/10/2015 4:48 PM (GMT 0)

Pratoman said...
Still, I wonder why my friend, 13 years ago, when his PSA was up after surgery, was not referred to an RO, and got no treatment.

To me, that was the biggest disservice done to your friend. Many urologists just know nothing about all this stuff, but may think they do, which makes them dangerous. My contention is that a patient has to be his own advocate.

When the urological/peri-surgical problems from the surgery no longer require the surgeon's expertise, his job is done, imho. If there was aggressive pathology and the PSA>0.03, or if the PSA seems to be rising quickly, or if the PSA never became undetectable, it's time to visit an RO, imho. One may decide not to have early salvage radiation, but one owes himself the advantage of having that option to consider. If one decides not to have salvage radiation in spite of those indicators, then the doctor to see is an MO, imho. It really falls to the patient to find the right doctor, and to make the critical decisions.

- Allen
Posted 2/10/2015 6:02 PM (GMT 0)

Pratoman said...
Doug, (or anyone) did any off your DRs recommend it? Is it a standard protocol to recommend or not recommend it wit he ECE?

I do worry sometimes seeing the info often posted here. My surgeon may not be Walsh, only good friends with Walsh and a bit of a Guru himself. He has authored/edited books on the subjects of PC in general as well as robotic surgery, has published many, many PC and bladder Ca related articles easily found on PubMed. Etc, Etc, ad infinitum. I was referred to him, though 4 hours away, for an "unbiased opinion" if such a thing is really possible. Referred by my guy who is a local URO surgeon( I used to do anesthesia for him among many others), but who only does opens and did not refer me to one of his partners who do robotic bit have only done a few hundred. This guy has done thousands of opens plus thousands of robotics. He is the dept. chairman of one of the higher volume university PC treatment centers in the country. When I went to see my ENT doc for my chronic nosebleeds and told him I had just had RRP by this guy, he tells me this is who he sent his dad to, because he knew how esteemed his reputation was. So he is at least somewhat highly esteemed like some of the other rock stars are, at least somewhere in that class.

And what has he recommended to me? When my spirits fell after he gave me the path report with the positive foci margin and +SV, and I asked him what was next, he said "nothing". Later at the post op visits, his opinion was to wait for the sustained >.2. Then consider the pros and cons of other treatment. He also says the longer I stay below .1 (they don't even do the ultra-sensitive, though my local doc tests me and I have had a couple of <.01s), the more likely it is that it is local plus the longer I am able to wait before other treatments andthe more I can recover from surgery, the less likely my additional SEs would be.

So, I remain undecided. I chose this guy based on his pretty high reputation, and this is what he thinks. Is he just completely wrong, or maybe crazy? I'm sure some big authorities would say so. Should I have already been zapped and de-hormone-ized? I simply do not know. Although I do know I don't want the rest of it unless I absolutely for sure must have it. In the meantime, I will keep watch for that > .03 and think about it a lot harder at that time.

But, great to read about the guy in the OP! "He had RP 13 years ago, with G9 and ECE. Not sure if he ever got to undetectable PSA, but for most of the next 7-8 years his PSA hung around 2 (the whole number 2, not .2). With no treatment, other than him taking all kinds of supplements on his own.
I find that amazing .
Then just in the last two years or so, his PSA started to rise. No crazy numbers, but a steady rise. So he went on HT. PSA dropped, and I believe about a year ago, went off HT. Back to Dr last week, took blood draw for PSA, and was told to expect a PSA rise, and probably would have to go back on HT.

Got results today, PSA undetectable, GLEASON FREAKING 9 WITH ECE! 13 YEARS! "

Probably a rarity, but WhooHooo!
Posted 2/10/2015 7:33 PM (GMT 0)
Prato,
I guess I also fit your profile, G9 with ECE.

My 3 month Post surgery PSA was < 0.1 and my JH surgeon was happy with that but suggested a consult with an RO. He was all for adjuvant radiation, preferably within 4 - 5 months of surgery. No HT though. I spent a long time trying to find studies that would tell me whether this was a good idea but could not find anything definitive. If one has positive margins then ART is definitely recommended but for my situation it was inconclusive. After it seems like months of worrying about it (and after I got a sensitive PSA test result of 0.08) I decided to do it. So far so good, the immediate side effects were not too bad and I am only slightly worse off in terms of ED than before the radiation.

Best,
Tom
Posted 2/11/2015 12:33 AM (GMT 0)

Shaba.Doug said...
Yep! The bright side is your stats combined with a low BCR PSA (IF there was one), would make your decision easier, I would imagine.

Don't twist this thread to your situation Prato, it really doesn't fit.

Cheers, Doug

Doug, just to clarify,,I didn't mean in any way to relate this to my own situation, although I admit I think often about what might happen if I had a BCR.
My reason for starting this thread was to 1. Understand if my friends father should have had SRT , (I was curious) and to put out another pretty good story about G9, where he was symptom free for quite some time, and still is, with now undetectable PSA
Posted 2/11/2015 12:42 AM (GMT 0)
What was interesting about the case I mention in the original post, is that the guy did a lot of research on diet and supplements, and after RP he was viceiferous in pursuing that avenue, completely changing his diet and taking an assortment of supplements daily. I can't help but wonder about that. Goes to one f the other recent threads I suppose.

Allen, I agree, it would have been beneficial for him to have been given the choices.
Posted 2/11/2015 2:26 AM (GMT 0)
Prato, I should have put LOL after the twist comment but I thought you knew me well enough by now! LOL

Cheers, Doug
Posted 2/11/2015 2:32 AM (GMT 0)
Sorry Doug my bad. As I get closer to my first post op PSA a week from tomorrow, my sense of humor gets worse and worse confused
Posted 2/11/2015 3:39 AM (GMT 0)
Irony…..Your friends story is an interesting counterpoint to the underlying thread within the thread. Which is really that the fear of death from Pca will, in most cases, override the fear of any and all side effects, if there is a sliver of hope from a study, a sharp and articulate researcher and Pca advocate.{TA} or that such and such treatment will,….just take it away... make it like it was prediagnosis…help me please… Im afraid… Physician, heal your own damm self... apologies to the originator for paraphrasing his statement. But when in the 21st century speak 21st century speak…. no shame … only words…….. like gifts , its the thought emanating the symbol that counts. Just saying…tee hee!
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