Quest Labs!?!? Ugh! PSA Test .04 no < sign

ChrisR said...
Tim G.

Great to see you at 10 years. I have read a study and I can send it to you that states you could probably stop testing now. Nobody in the study with OCG6 and an undetectable PSA at 10 years developed metastatic disease or died of PCa in the following 10 years. Congrats. You will make it 20 years disease free.

Sure, Chris, please send the study to me. Thanks.

Here is the link....

https://prostatecancerinfolink.net/2011/06/23/psa-monitoring-after-prostate-cancer-surgery-how-long-is-long-enough/

Please keep in mind that these were also patients that were classified as G6 before 2005 ISUP changes to the Gleason grading system. If you were graded G6 after 2005 your chances are even better to remain BCR free. It is around 99.6% that you won't have BCR within 10 years. I was told by Epstein that G6 after 2005 is more like G5 used to be before 2005

Post Edited (ChrisR) : 8/3/2016 8:35:26 PM (GMT-6)

Thanks, Chris R, for adding the URL. (Just got back from long weekend, so just read it this morning.)

You asked some good clarifications in the Comments, not all of which were answered. And you additional comment here that the data today would be even more favorable due to ISUP changes is astute.

Quality of life for men who pursued treatments is worse over time than their counterparts who pursued AS...it starts out about the same, but it separates over time. For those low risk men who sought immediate treatment (which is a large percentage of men...perhaps 2 million men living in the US today), data which supports the eventual discontinuation of PSA testing could help their long-term QoL by cutting PSA anxiety...or at least the understanding that PSA testing is no longer needed may help reduce anxiety.

Thanks

I hate the leaking
sex is not the same
I have lost all interest in female companionships
I suffer with QOL
So, I drink a little more sometimes

Chris R, I’m not going to shift and make it about you. It’s not about you. It’s about you to you, but not about you in the context of my reply, or for others reading this thread in the future. But if you need the facts to be lined-up in the way you have envisioned them here for your own well being, then so be it…for you. I don’t have a problem with that. I am however concerned for how others—newcomers who are coming to this site to learn—might interpret some of your comments when reading these comments now or in the future. As I just said yesterday in another thread, most doctors say it’s misinformation which makes it hard for them to convince men to go onto AS. It’s often the anecdote steeped in misinformation which can be the most damaging. As JFK said, “The great enemy of truth is very often not the lie—deliberate, contrived and dishonest—but the myth—persistent, persuasive and unrealistic. Too often we hold fast to the clichés of our forebears. We subject all facts to a prefabricated set of interpretations. We enjoy the comfort of opinion without the discomfort of thought.”

People often quote the first line, but I think that last sentence is the most poignant: “We enjoy the comfort of opinion without the discomfort of thought.” So I apologize in advance if I give you any perception that I am calling you personally out on this…it’s not you the individual, it’s the generalized inaccuracies sprinkled in the middle which you have written about that I am calling out. I’m also sorry, indeed, about your poor QoL; we all who have undergone treatment for PC suffer diminished QoL…and some poor souls with low-risk PC seem to have particularly gotten the short-straw and by pure (bad) luck suffer much more significantly than others of us…often, completely unnecessarily.

So you wrote:

So, on a very strict AS program you might be able to feel somewhat secure your are probably G6, but the anxiety of not really knowing what you actually are may wear on people over the years.

But the psychological studies of low-risk men on AS versus their counterparts who sought immediate treatment shows the opposite of what you speculated. Let’s not leave misleading impressions for others to incorrectly draw from. You indicated it would get worse; studies show that over time it gets better and the gap (the differences in QoL) which was initially close between the two groups slowly widens. It got better for the men who remained on AS because they came to realize that indeed they did not need the treatment which was offered to them, they see the onerous side effects which they avoided, and they see their AS counterparts successfully moved to treatment when needed.

I’ll also call out, in complete fairness, that your statement that ”QOL is much…much…much better for untreated men” is not in alignment with the psychological study findings either. Low risk men who seek immediate treatment and those with similar cases who go initially on AS start out with about the same anxiety levels as a measure of QoL. The gap widens over time, though, and while some men on AS have eventually been described as “ebullient” as their anxiety dimishes when confidence and “patient education” builds and accumulates, it does take some time to more fully realize the satisfaction with their choice.

But what about those who are “weeded out” of the AS programs (typically when their Gleason score rises). They, too, are successes of the program because they sought treatment when treatment was needed. While they have successfully deferred treatment and enjoyed perhaps years of extended QoL, they also benefit from the continuous and rapid improvements which are taking place everyday in the medical and technical aspects of treatments. In the words of Dr. Ian Thompson, ”If you have a choice of a dollar today or a dollar 10 years from now, take the dollar today. But if you have a choice of a curative treatment for prostate cancer today or a curative treatment for prostate cancer 10 years from now, choose it 10 years from now.” But the important question is whether these men fare any worse than those who seek immediate treatment, and the data shows that they do not. This is important to understand: there is a small percentage of men initially diagnosed as low-risk who go onto AS who will eventually die of PC, but it is the same percent as those counterparts who sought immediate treatment. AS is not, and should not, be held up to a higher standard than that…it is not a “cure.”

Again, I’m sorry for the QoL issues you have shared here with us. And I hope low-risk men who may read this in the future can use your personal QoL experiences as a supplement to their own data-gathering to make the best possible decisions for themselves. We can all rally around this…paying it forward by presenting meaningful information to others who will in the future experience the “discomfort of thought” necessary to make data-driven decisions for themselves.

JackH, 

I appreciate your lengthy reply and I always invite rational discussion on topics.  Hope I did not come off as wanting a pitty party.  I am fully aware how lucky I am in regards to PCA and how many would trade places with me. 

My main point being that the argument of QOL from treatment vs. non-treatment is a mote point.  It should not even be on a discussion on the table.  However, my view is that once you hear the word "cancer" some people are not cut out for living on AS no matter what the data shows.  It's why the recent argument has been made to stop calling G6 cancer.  I am the type of person that would not have been able to take the stress. I have to be 100% convinced about evidence before I put much faith in it.  That being said I am the type of person that would not have been able to put the 30% or so risk of being misclassified out of my mind.  Even regardless of what the Dr. would have told me.  I would have needed 30-40 years worth of studies from multiple instituions that verified the AS claim.   That information was not availible when I was diagnosed 8 years ago.  There were hardly any studies beyond 15 years at the time that I could find.  The psychological toll on someone like me would have been way too much over the years on AS and I would have suffered a loss of QOL no matter what I decided to do.  If I were 65 and not 43 when diagnosed with 2 young kids, it might have been a different situation.  The age makes a huge difference.  My mindset at 43 was what was my best shot at a cure and not what is the best thing to do to keep me alive long enough to die of something else because I was old anyway.  The studies for AS were not as complete as they are now and there was not even the info. about G6 that there is now.   The shock of the diagnosis to me was terrifying.  I remember telling my urologist I wanted my prostate out and I did not care if I had to wear a diaper the rest of my life. 

My point is that a cancer diagnoses no matter what you choose affects your QOL.

Everyone responds differently the information they are given and we all make decisions we are comfortable with.  I completely recommend AS to older men and would never argue with anyone, even younger who choose the route.  If you have the stomach for it, I would put off the surgery as long as you can. The stats. are in your favor.  I'm just the type of person that needs my stats. to be 100% :) 

One more note about AS.  Consider the men with G6 who choose treatment.  Approx. 30% are upgraded at the time of surgery.  So, conversely had all these men, and I say men because I'm pretty sure women don't get PCA...choosen AS 30% have a higher grade cancer and don't know it.  So, some of these men who's higher grade cancer is never found due to sampling errors do just as well as the low grade men.  There is a substantial minority of men on AS who harbor higher grade cancer for years that never does anything. 

halbert said...
All any of us can do is answer three questions: What happened, What I did about it, How it is today. Beyond that, telling someone else what to do beyond "do your own research and settle the questions for yourself" is presumptuous to a high degree.

You are entitled to your opinion. I recognize and respect it as your opinion. But it is not my opinion.

If all you have to offer is what happened, what you did, and how it is today for you...then yes, it is what it is, and that's what you've got to offer.

I have more to offer, and am completely able to do so without "telling someone else what to do," as you say, typically by sharing important and relevant data and outcomes relating to populations of men rather than single anecdotes.

I encourage men to make their own decisions based on data rather than emotions, and encourage that they recognize that extra effort may be required because of the flood of emotion accompanying a "cancer" diagnosis. Favorable-risk men also have the advantage of TIME...time to learn and educate themselves so that they can made an informed, smart decision...and they often don't initially realize that they have such abundant TIME.


To your comment...

halbert said...
To me, 100% of the responsibility for the overtreatment of the PSA era lies in the hands of the treating physicians.

...you should consider the wise comments of Dr Scholz posted by NKinney. I will couple this with the concept of patient education I mentioned above...empowered patients consistently score higher on studies about treatment satisfaction/regret. The 2 paragraphs of Dr Scholz's quote tell us exactly why. Twenty years ago, your statement was probably true; today, it's seen as naïve.