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!
PSA 10.9 ~112013
Bx on 112013 at age 64 yrs 11 months, with 5 of 12 pos with one G9(5+4), 1 PNI, T2B.
RALP with lymph nodes at Vanderbilt 021914. (nodes clear, but SV+, still G9 but down graded to 4+5, cut wide, but 1 tiny foci right at the edge of margin ) Pros. 106.7 gms!
Foley out 030314
PSA <.1 on 4/7
PSA <.01 on 6/11 + 8/20/14
Post Edited (BillyBob@388) : 2/10/2015 11:07:17 AM (GMT-7)