TJ123 said...
Billy, your theory that the previous lab understated your true PSA level is as good as any. But at the aggressive grade 4+5 and SV+ your .06 is a real success story. One aspect in your favor is that the PC hadn't extended through the capsule, as mine did. You have every reason to remain positive. Stable is good. After 5 years it would seem that if there was aggressive PC left behind it would have already reared it's ugly head and forced you into secondary treatment. I wonder how many others (%) who experienced similar adverse pathology as yourself have remained BCR free? Have you ever researched that using the nomograms? If so, what did you find? I'm curious.
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Bill: TJ, another very interesting responce! I hesitated to search for those nomos, as I wasn't sure I wanted to know. But with the MSKC nomogram for predicting BCR and death post RP, based on filling in the applicable numbers for NOW- after I have already done surprisingly well for 5 years I suppose, I have a 77% chance of making it to 7 years, and 56% to 10 years, without BCR. Also, an 81% chance of surviving PC for 15 years. But I think you ( and I ) want to know how much of an outlier I might be, or what my odds were at the beginning. I remember my surgeon told me I was no better than 50/50 for BCR and further treatment, and I think he meant within a couple of years. So I went back and left all my numbers the same except I changed "# of months BCR free to 6 months from 60, as though I was just getting started. And that gave quite (!) different numbers, 52% odds of BCR free at 2 years(almost what my surgeon, Joseph Smith of Vanderbilt, told me ). 5 year odds 27%, 7 yr 20% and 10 year 15%. Remarkably, the 15 year odds of cancer survival were the same at 81%.
So, based on that nomo, I have definitely been very blessed so far, even after finding out I have probably been .06, or at least well above .01, for longer than I thought I was.
https://www.mskcc.org/nomograms/prostate/post_op......................................................................................
TJ: "My labs are hard to figure out. As I mentioned, the Siemen's Advia Centaur method has been my normal test since the start. Same lab. The original .04 was drawn about
2 mo and a week after RALP. That might have been a little early (not all the accumulated PSA had left my body). 3 months later it measured undetectable <.01. So there's a reasonable explanation for the drop. Then it started to slowly rise to .02 then fall to .01 then rise to .03 then fall to .01 again. No idea why. My only theories are the inexactness of the test itself or perhaps a little benign tissue that's dying. Then the wildcard is the Labcorp labs that both had me at <.006. Who the hell knows?"
Bill: Well said, who the hell knows, I feel the same. From .02 for a year and then 3 months later .06, and no change in over a year since then. Even with a new lab. I have no idea.
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TJ: "There was another poster (his moniker escapes me) who had a similar situation as mine. His ultrasensitive Siemen's labs indicated a small but detectable level of PSA. He paid out of pocket to get tested at Labcorp and I believe one other popular blood testing site. Both showed undetectable levels. "
Bill: I think I remember his results, as well as yours.
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TJ: "I don't think they've scientifically mastered the ultrasensitive PSA testing at this point. The numbers themselves aren't quite as important as the trend. Naturally, the trend is what I look for. And it appears that both of us are in decent shape all things considered.
My doctors ask me if I take supplements. I do. Resveratrol, Vit D (4-5000 IU), Cayenne, fish oil. It's a mixed reaction. Most support the fish oil (for heart and triglyceride reduction), go along with the Vit D (yet at lower dosing), but question the Resveratrol and Cayenne. Interestingly, most ask "How much do you pay for that stuff?" When I tell them about
$15 a month they just shrug their shoulders."
Bill: Now that's funny, docs worrying about
the cost of supplements! ;) Then again, insurance often covers most of the horrendous cost of our drugs, so it might be if we take a lot of supplements they could cost us more that we actually have to pay for drugs. Then again, we do have to pay for the insurance that covers the drugs, so it still cost us way more, one way or another. I take plenty of supplements for sure, but I have also been blessed in the prescript
ion drug department, especially for a 70 year old cancer patient. No prescript
ion meds. That is blessed!..............................................................................................................................................................................
TJ: "But I also take prescript
ion Metformin for T2D and Atorvastatin to control stenosis. There is literature that seems to indicate both MIGHT help slow progression of PC - but I don't know how strong that data is or whether it has helped me. But I'll continue to stay the course as long as I stay off the SRT table. "
Bill: Ah yes, Metformin! I take Berberine in hopes it will have some of the over all health benefits of Metformin.
Metformin improves(reduce) insulin resistance and thus the amount of insulin in the blood. You might have read stuff from me many times over the years touting the probable benefits of lowering the levels of blood insulin for fighting PC and a huge number of other health issues. Hey, maybe it is helping you with with things other than your T2D? Who knows?
Post Edited (BillyBob@388) : 4/12/2019 8:30:44 PM (GMT-6)