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New guidelines from the American Urological Association

hopeful and opt...
Posts: 1282
Joined: Apr 2009

http://m.usatoday.com/article/news/2130971

As a man with prostate cancer who has studied this a great deal, I believe that without getting a PSA test(s) that many men will not be diagnosed in a timely fashion, and as a result will be diagnosed when it is too late....many will die.
Unfortunately there is over treatment among men who have been diagnosed with low aggressive, low volume disease who as a result suffer serious side effects. In my opinion this issue needs to be addressed, not the this simple diagnostic test, although imperfect, is a great indicator to be used along with other tests to determine a need to biopsy.
Frankly I am surprised by Dr. Carter's position who I have read about, who is a surgeon and heads the Active Surveillance program with delayed treatment if necessary at Johns Hopkins.
My opinion is that this position is that it is  criminal. I am saddened by this announcement.

starr15
Posts: 31
Joined: Oct 2011

Difficult issue. We must find a better screening test.

I would not dismiss these new guidelines. These come from experts in the field who, if anything, would be biased in favor of  screening.

 

Rakendra's picture
Rakendra
Posts: 74
Joined: Apr 2013

Yeah, this is EXACTLY the kind if thinking that got me in my position of Grade 4. My PSA was going up and up.  "Oh, nevermind the test is not accurate, and in any case you will not live long enough for it to kill you.  Something else will get you first."  Well, I lived to 81 and the cancer is getting me first (but not last!!).  I fell for this line of crap.  I was so healthy that it did not seem possible I could ever have cancer.  My advice is:  constantly check the PSA and when it goes up, get the biopsy.  What to do after that is not so easy. Correct Decisions are tough to come by, there is simply no easy answers to any part of this disease. love, swami Rakendra

yankeefan
Posts: 69
Joined: Mar 2013

Not testing is akin to burying your head in the sand.... What's a little blood test every year. I can see better standards for recommending a biopsy, and additional tests like the pca-3 test. But not testing at all, makes no sense to me. The whole idea with cancer is to get it before it matastisizes and spreads who knows where. If every prostate cancer were indolent and extremely slow growing, perhaps not testing would make sense. Unfortunately, that is not the case. What do you say to those men who will die in their 50's, 60's, & 70's from "non-indolent" prostate cancer...."too bad, sucks to be you"..when they could have lived longer if the cancer had been treated as soon as possible.

beacon723's picture
beacon723
Posts: 15
Joined: Nov 2012

Without the PSA test my Cancer would not have been found, the DRE showed nothing but normal

small and smooth, ultrasound showed normal prostate, only a slowly rising PSA

led me to request a Urological consult, PSA still slowly rising, after the last Blood test

my PSA was 4.6, My Doctor said 4.5 could be a normal reading for a man my age (61 years)

But with a 4.6 my Doctor said lets do a Biopsy, Bingo Guess what we found, and the rest of the story

is as they say is history, But a history because of PSA Testing I am here to write.

For any of you who don't know my story, you are free to read my "About Me" page.

Continuous Good Health to All!

Ed

yankeefan
Posts: 69
Joined: Mar 2013

I've had psa tests for decades, fortunately until just recently, they stayed consistently low with only a slight upward trend as I aged. I'm now 68. But in the last year my psa went from about 1.9 to 3.4.

first step was a sonogram...very low risk. It was negative for cancer, but allowed my doc to see exactly how large my prostate was.

my urologist had been treating me for bph with flomax....it helped but my prostate was so large I still had urinary issues.

started doing psa more often than normal once per year. 

next psa was 4.5, another jump.

my urologist recommended a pca-3 test, (no risk involved in this test).

the pca-3 test came back positive, not 100 percent conclusive, but another indicator that there might be cancer.

at this point, he recommends a biopsy. (Still a low risk test, especially for the first one)

the biopsy shows Gleason 7 cancer. Doc recommends against watchful waiting. Says if I do nothing, I'll have a big problem in 5-10 years. Hell, i'm only 68, I don't want a big problem that soon. 

bottom Line, after discussing options, I decide on surgery. the morning after the surgery, my surgeon says he just bought me an extra 15 - 20 years. So for me, the choice a would have been, don't test & don't operate and die from prostate cancer at around 75, or live 15 years longer...that's a no brainer, for me.

btw, while I still have no erectile function and may never, even though my surgeon said he spared the nerves on one side and partially on the other side, there is some chance that will improve. (I'm only 4 weeks out, so hopefully the jury's still re ed)

Re incontinence, while I have a little leaking, primarily when I get up from sitting down, it is minimal...I wear the same pad for 3-4 days...my overall urinary functioning has actually improved. I can go much longer without urinating, the urgency is diminished, and when I go, I really go, no dribbling out and weak stream like I had before the operation.

So in my case, I think I was wise to test, biopsy, and operate. Obviously, if some men choose not to test, that's their option. It's kinda  like an abortion, if you don't want one, don't get one.

personally, I think the risks associated with a biopsy are greatly exaggerated. Sure there are some, but they usually go up when your talking many repeat biopsies. The risks from just one, while not zero, are low.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Yankeefan,

While many of us prostate cancer survivors feel that the PSA test played a role in our long term survival I think you've over-simplified the issues and in the process have trivialized the whole point of the new recommendations.  The process your urologist took you through is a textbook approach on how to do it right.  Monitior it for years, develop a sense of when the trend is changing, look for causes that might be something other than prostate cancer and if perchance a biopsy is required and comes up positive then you take appropriate treatment courses appropriate for the total condition.

Unfortunately in America many men, myself included, did not get such an experience.  In my own case, a single PSA reading above 4.0 triggered my GP to refer me to a urologist who immediately recommended a biopsy that resulted in a single core out of a 12-core sample being positive with less than 15% invovlement and a Gleason Score of 3+3.

Like most men starting this journey I had no real knowledge of prostate cancer, only a vague idea of even where the prostate was located, and could barely spell PSA.  I knew nothing of doubling times, PSA velocity, all the things that can cause PSA to fluctuate, or anything else about the process.  My urologist recommended immediate surgery, indicating that they could "cure me" and "get it out."  At that point, thankfully, common sense kicked in and I began doing a ton of research.  Unfortuntately, I think many men today simply follow the doctor's recommendations and in most cases for low risk levels of prostate cancer that means a RP.

I liked both my GP and the urologist who diagnosed me.  They are both well-educated, caring, and thoughtful men.  But frankly, I think I now probably know more about prostaste cancer than my GP and surgery, in my opinion, is overkill for low risk prostate cancer.  It does keep urologists well heeled though.

I do believe that men over 50 should have their PSA tested in conjunction with a routine physical that includes a DRE.  If the PSA is elevated above an established baseline the GP should make inquiries about sex the night before, investigate possible BPH or a UTI, and retake the PSA.  If it's still elevated try a six-week Cipro course to see if there might be a UTI that is causing the elevated reading or maybe prostatitis.  If it is still high and continuing to rise then, and only then, consider a biopsy.

For men over 60, there is about a 25% chance that ANY prostate biopsy will show at least one core as postive for prostate cancer.  Biopsies are money-makers for a urology practice.  Each one nets about $5K for 30 minutes work.  And most of those who do test positive will go on and have the recommended surgery to the tune of about $30K on average.  

When the doctor comes in afterward and pats you on the shoulder and humbly proclaims that he just gave you 15-20 additional years we somehow feel grateful.  In many, many cases this is all a scam and the real end result is thousands upon thousands of unnecessary surgeries that skyrocket our national health care costs and leave thousands of men incontinent and impotent each year.  Just read back through several months of postings on this forum to get a sense of how widespread this problem is.

The average lifespan for any newly diagnosed prostate cancer patient is 15 years if untreated.  Your doctor didn't give you anything you wouldn't have had if you had done nothing.  I do hope your surgery prolongs your life and that you do not suffer permanent impotence and that your post surgical incontinence is temporary.  I hope the very act of surgery did not inadvertently spread your cancer and that your future PSA readings remain undetectable and you do not have to move on to hormone therapy and radiation. I realize that a Gleason 7 is more urgent than a Gleason 6, but even with  Gleason 7 there are several other options besides surgery and your friendly urologist should have set you up with consults with different disciplines.  I realize you can't rewind it now, but men just starting this journey still have choices and many of those choices give them their 15-20 years with a much reduced chance of lessened quality of life due to the side effects of surgery.

The problem with the PSA test is not the test -- you and I agree on that point.  The problem in my opinion is what the doctors do with the data and how they present it to their patients that is the problem.  If each urologist followed path your doctor did we probably would not be having the PSA controversy today.  

The PSA test is a terrible predictor of cancer.  Statistically it is only accurate to 50%.  With a single reading your doctors might as well have you flip a coin to see if you should have a biopsy.  Taken within the context of a PSA baseline, calculated PSA velocities and doubling times and with an understanding of all the things that can cause PSA to flucuate it is a valuable tool in the fight against prostate cancer.

The risks associated with a trans-rectal biopsy are not trivial.  Statistics show that about 3% of men having these biopsies get sepsis and require hospitalization.  Hundres of men die each year from the results of this procedure.  Surgery carries its own risks and despite what any doctor may say an RP, robotic or otherwise, is major surgery and men die from it each year.  

In any event, it is not kinda like an abortion at all.  I'm afraid I don't see that analogy at all.

Best,

K

 

 

 

 

Rakendra's picture
Rakendra
Posts: 74
Joined: Apr 2013

Wow, Kongo, and you other guys, what a great post this has turned out for me, and I wish every man could read this!!!!  It is SO difficult to get a handle on this diesease and SO difficult to ever get answers that allow the average punter to make wise decisions, but this post is one of the very best I have ever seen.  And, Kongo, you deserve Kudos for your always detailed and well thought out posts.  Thank you, you have helped me a lot.  I now go to THREE uros and one Onc., and always get unsimilar opinions.  I have also learned that any analysis by any Pathologist needs at least two opinions.  It is not possible to know the RIGHT decision to make with Pca, but it is possible to know what the best GUESS might be.  love, swami Rakendra

yankeefan
Posts: 69
Joined: Mar 2013

Kongo

The subject of my post to which you responded was “there is no simple answer”…so I think we are in violent agreement on that point; notwithstanding, I offer the following comments to your last post:

men should not have their psa tested and the results followed and interpreted by their GP. The PSA is a urological test, it should be done by your urologist, which you should see at least annually, for a psa and a dre, assuming no other problems. 

You say prostate cancer isn’t simple, but then you generalize with statistics that try to make it appear to be just that. Nobody’s suggesting that you should take the same steps if you have an indolent cancer as opposed to a more aggressive one. That is probably the most egregious over simplification you make. Not everyone with an aggressive prostate cancer is going to live “another 15 years,” as you suggest, if they just ignore it and do nothing; and will most likely not have a pleasant end of life, no matter what the length. You are doing a disservice to men with aggressive prostate cancer that is still operable, by telling them they can live another 15 years by doing nothing. Even if that were true, which it isn’t, tell that to a 45 year old with gleason 7…oh, “don’t worry, you won’t die to you’re 60.”

-       

It should be clear to anyone who’s spent any time at all on this site that there is no such thing as an “average case of prostate cancer,” and my cancer with gleason 7 isn’t going to behave like someone else’s that is indolent. You simply can not make prostate cancer decisions based on averages; if you do you’re setting yourself up for a big disappointment.

-       

You make it sound like every man must blindly follow his doctor’s advice; rather, everyone must accept responsibility for his own choices. This is difficult as we are at a disadvantage vis a vis doctors; they know so much more than the “average” patient…there I go making generalities….men must realize that prostate cancer is complicated and go to the most competent urologist they can find, even if that means traveling.

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If my biopsy had been gleason 6, or better, my urologist would likely not have recommended immediate action. As it was, mine wasn’t indolent, it was gleason 7, and he said he couldn’t recommend doing nothing…but it was strictly up to me; and yes he did go over the other alternatives and gave me names of at least 4 other urologists to talk to. Btw, I didn’t have my surgery with my urologist, but rather went to another city to have a consult and ultimately had the surgery there.

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I’m not interested in rewinding anything. My urinary functioning now is significantly better than it was prior to surgery, and while it may be possible that the “act of surgery” spread my cancer, each urologist I spoke to told me that if I did nothing it would definitely spread, and I’d have a big problem in approx. 5 years. Were these guys scamming me…as you suggest, I don’t think so.

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No one knows how long they’re going to live, hell, we could both get run over by a truck tomorrow.

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Bottom line, I believe in having the best information available in order to make health related decisions. If you don’t test, you never get to that point. We agree that the psa by itself isn’t a “go” or “no go” test; but it is an important indicator, particularly when evaluated by an expert urologist over time; and in combination with other tests; hence the recommendation that men get their urological tests done at their urologist’s office, not by a GP.

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We agree that there are risks to any procedure, but most of them are slight and even if present are usually manageable, getting sepsis from a biopsy, for example.

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As I have posted before, the single biggest factor on how well a radical prostatectomy is going to go is the skill of the surgeon. That means each patient needs to do his homework and go to the best surgeon he can.

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I could have chosen radiation or perhaps hormone therapy, but after hearing the possible side effects of those options, I decided on surgery. Perhaps radiation would have worked just as well, some things we’ll never know. As you know, there are potential unpleasant side effects with radiation just as there are with surgery.

-       

Hopefully 20 years from now the state of the art in prostate cancer will be significantly better. I certainly hope so. But we all live in the present and we need to make the best decisions possible….now. My view is the more information you have the better the chance you make the right decision at the right time.

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Re the analogy to abortion; many people, particularly those in high risk situations, choose to have certain tests done to determine very early on whether their baby has significant risks for genetic birth defects. Some of those who have the test and for which the test is positive may choose to abort. Without the test they would never have known the risks. Perhaps the analogy is a poor one. My point is that tests provide information, information that allows an informed decision. The test doesn’t make the decision for you, it just allows you to make a more informed choice. If you never get the information, you never get to the point where an informed decision is possible. All analogies are imperfect, so forgive me if that one doesn’t appear relevant to you.

All the best…..

 

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