Having trouble seeking any treatment

Well, you could stay on AS until something changes. It might be next year, or 5 years from now, or never. If you think your psyche could handle it.

Or, you pull the trigger, roll the dice, or whatever your preferred metaphor. In the end, it's all about opinion and "SWAGs" (Scientific wild assed guesses) anyway. Even a post surgical pathology report is an opinion.

Want certainty? Not going to happen. Heck all any of us have is today anyway. Make the most of it and enjoy it. The sun is shining, the birds are singing, and the mud is thick out there. Spring is springing.

island time

Your numbers look pretty good to me, AS seems a logical choice if YOU are comfortable with it.
Just curious about the survival numbers in your post, 1 in 50 lives saved?? That would be a 98% failure rate? The annual death rate is currently running at about 12 1/2% of the number diagnosed or as I prefer to view it, a 87 1/2% success rate.

Island,
I think I know you, and I think you will constantly be second guessing yourself, on AS (which is exactly what you are doing) and you will live with constant anxiety (which you are also doing now.

Never heard that,stat that you quote your doctor on. Assuming it's correct, I would then ask the follow up question: out of the remaining 48 lives (or 14 at your age) whose lives it doesn't save, in how many of those men does it add 5?or 10 years or more of good quality of life to their mortality?

@Tudpock, i think Islandis referring to his PCP, not his urologist.

I don't know where he's getting those numbers. (But Mark Scholz uses the same numbers in his pursuit for less treatment)

Halbert..you are correct in your interpretations.

Woodpecker...12.5% of diagnosis results in death. That leaves 87.5% "success rate". This is feel good information, but does it really go to the heart, scientifically speaking, as to the efficacy of treatment? The doc says "no". (And I'm not finding any numbers that says it does either)

Shaba. I agree with your answer to my second "delimna". Semantics. BCR is technically speaking not a recurrence. It just means you were never cured in the first place. "Cure has nothing to do with it other than an aim of treatment". Cancer treatments aim is to cure (at least "cure" in this thread is topic. The question I'm asking is "Why shoot for a cure if the odds of it helping to extend life is so slim...Given the length of time one will live with the side effects of said treatment?"

Pratoman...I'm hearing ya on the AS thing. No, I'm not cut out for it because, according to "doc", no one is. They all last a while, but most jump ship, mostly due to the drag on the psyche. He says human beings are not wired to live with a known killer inside of them, no matter how small the odds of that happening, if they do not have to. If there's an alternative. Your other question is a valid one if I understand it correctly. IE..QOL...How does this figure in? That's the real thing. My question is..."where's the evidence that surgery/radiation delays the on set on a lessor quality of life?"

The point of all of this is "no" I don't want to have treatment but "yes" um going to BECAUSE of psychological factors that are not based on any rational facts or statistics that I've been able to find.

In other words, it's for all intents and purposes...a costly placebo.

How depressing!! Lol.

Post Edited (island time) : 3/22/2015 9:03:50 AM (GMT-6)

I don't think it's true what your doctor said that no one is cut out for AS...there's are long-term AS folks here that seem content with it. That said, you may not be cut out for it and if so that's very understandable. AS wasn't an option for me, but if it had been I believe I would have pursued it. No way to know for sure--perhaps I couldn't have lived with the uncertainty. But I think I'm living pretty well with my post-treatment uncertainty right now.

BTW, do you consider yourself on AS right now, or is your 3/15 reference to AS mean that you're just in a holding pattern while you decide on what treatment to have?

So if it's 49 surgeries to save one life, that's odds of 49-to-1, which is a probability of 1/50 that a life was saved (because 50 total surgeries were performed), which means that 98% of the PC's were non-killers and 2% were killers.

Just futzing with the numbers, nothing more.

###
Edit: The above numbers are wrong. The odds are 48-to-1 instead of 49-to-1, which would make the probability 1/49 that a life was saved instead of 1/50. The 49 surgeries INCLUDE the life saved.

Too much over-thinking a simple concept, sorry.

Post Edited (onthefence) : 3/23/2015 10:17:45 AM (GMT-6)

I know a few who have been on AS 5+ years. One over 8 years now. I also know a few who wish they had stayed or tried AS instead of living with lower quality of lives post treatment. There are a few who are hard wired and can't handle AS but most who educate themselves or l like many here who have lived in a PCa world a length of time are looking more and more favorably to it. In addition as time goes by it's becoming more evident that PCa is vastly over treated. The biggest opposition to AS I've noticed over the years are those who have recently been treated by radical surgery. That stays consistent.

Personally I see little difference in the anxiety of those on AS awaiting their latest PSA and those who wait after radical treatments. In addition there are no do overs you live with what ever effects post treatment that occur. In AS you also have the benefit of time moving on and better and less invasive treatments like mine being made available. I do admit if I was diagnosed now I would choose AS, but back in 2007 many people thought it was surgery or nothing. Even brachytherapy was looked down on and many thought when I chose TFT I had a death wish. Just to put in perspective how medical not emotional views have changed on this. Of course PCa is just not one disease the most aggressive strains of course require action. But for the majority of low to intermediate risk the truth is that you will die with Pca but not of it.

When I was first diagnosed I was semi-crazed as I worked through everything to decide on a treatment option. And you're right, I did feel better when I made a treatment decision. That said, I would say that a conscious decision for AS *is* a treatment decision. I do not believe AS is any less of a treatment than surgery or radiation.

Since we can't control the inherent uncertainty in all of this, I think it comes down to what treatment works best for us for psychological and/or emotional reasons. (Well, at least for those whose diagnosis doesn't limit their choices, which would be the case for you.) Again, I think this refers to AS just as much as surgery or radiation.

This is hard stuff. And you're right "crap on this crap."

Thanks ziggy. Good post and helpful. Thanks.

John T said...
If you look at AS as a diagnostic tool rather than a life long strategy it may help in your thinking. You need not commit to AS for life...

I keep forgetting about this part. Lol.




Dr. Smith is a surgeon. He cuts out prostates. He outta know why he's doing what he does for a living. He ought to know how much good it does for him to be doing what he's doing. And he ought to know whether he's "just trying" and "hopefully it helps" vs. "I know I'm helping...and here's the evidence"

He may very well say..."I help 1 out 50 I operate on. And that's good enough reason to do it for me." That's fair. I just need the info. That's all.

:)
:/

Well, island, the best way would be to design a true double-blind study, where the researchers alone determined who would have surgery and who wouldn't...and the gleason scores, PSA's, biopsy results, and everything else was held in confidence by the research team for 20 years or so.

Which, needless to say, won't be a happening deal.

The other choice would be to limit surgery or radiation only to those scoring G8 or above. G7 or G6, regardless of age or other risk factors, would automatically go on AS until they progress to G8.

I don't think most of us would find that acceptable either.

For me, until they figure out a diagnostic tool that can confidently predict which G6 tumors are true non-invasive G6, then the current trends will continue. And, no, I'm not doubting my decision. It's turned out well for me, and now all I have to do is the semi-annual blood draw.

Island time, I'm actually a lot like you. What I found, however, was that the feeling of relief came the day I made the definitive decision. It got more solid when I called to get on the schedule. And, walking from the parking garage to the surgery check in desk was actually an easy walk. No stress at all.

Yeah.

If you don't know you don't know. If we don't know we don't know. If no one knows then know one knows.

But, what it does mean is that everyone who's treating prostate cancer is doing it without knowing just how much good they are doing. Seems an odd reason for choosing a profession. But, I guess what they HAVE to know is that it isn't doing any harm. Lol

I suspect it's an acceptance thing that comes from having made a decision. I just want to know that, if that's what I'm basing a decision on, then that's what I'm basing a decision on.