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PSA Test Not Needed?? CNN posted today

SeattleJ
Posts: 32
Joined: Mar 2011

(CNN) -- The U.S. Preventive Services Task Force, the group that told women in their 40s that they don't need mammograms, will soon recommend that men not get screened for prostate cancer, according to a source privy to the task force deliberations.

The task force is set to recommend a "D" rating for prostate specific antigen, or PSA, testing. Such a rating means "there is moderate or high certainty that the service has no net benefit or that the harms outweigh the benefits," according to the group's website. The task force is set to propose this recommendation Tuesday, and then allow for a comment period before issuing a final recommendation.

According to a draft copy of a report scheduled to be released Monday, a review of studies shows screening with the PSA blood test results in "small or no reduction" in prostate cancer deaths.

The report adds that PSA testing is "associated with harms related to subsequent evaluation and treatments."

The PSA test can help determine if a man has prostate cancer. It is sometimes accompanied by a digital rectal exam.

Swingshiftworker
Posts: 658
Joined: Mar 2010

Just heard this on NBC new. Here's a link to the CNN article and a video about it:

http://www.cnn.com/2011/10/06/health/prostate-screening

Not sure what to make of this recommendation but I imagine that most doctors will ignore it, just as they have the recommendation against supposedly "needless" mammograms.

After reading the article and listening to the video, the problem doesn't seem to be getting the test -- that's pretty much harmless. The problem is acting on the test and the biopsy by getting treatment -- mostly surgery by inference -- when you don't know for sure whether you've got a high risk cancer that really requires treatment or not.

As it stands now, we are treating all men if there's a positive biopsy and as a result many men suffer the negative consequences of surgery (mainly incontinence and ED) when it wasn't even necessary. On the other hand, the few men w/high risk cancer are saved making the negative effects of surgery less consequential.

This really goes to my point -- which I've made repeatedly -- that surgery is NOT an appropriate treatment for early stage PCa. If men did not immediately opt for surgery but chose a less risky method of treatment -- like CyberKnife or Proton Beam Therapy -- at the outset, we'd substantially reduce the incidence of incontinence and ED suffered by men diagnosed with PCa and would still probably cure most of these men of the cancer w/o surgery.

Those men who have a higher risk cancer and are not cured by the initial treatment can be treated again by means of surgery (if warranted) or follow-up radiation and/or hormone therapy.

Of course, this means that a lot of urologist/surgeons will be out of a job. So, it's not likely to happen but IMHO this is an obvious way to solve the "problem.'

hopeful and opt...
Posts: 1363
Joined: Apr 2009

I basically agree with Swing, that there is overtreatment by many who have a positive biopsy, when Active Surveillance with Delayed treatment is appropriate. I believe that most, are willing to have "Active Treatment" with potentially very negative side effects instead closely monitoring the disease within an Active Surveillance program in low risk patients where the likelihood of non progression is 70 percent(with no side effects), and the other 30 percent are still treatable with for the most part, the same Active Treatment option as would have first been chosen.

I also believe as Swing, that some of the side effects of surgery can be horrible; additionally, I also believe, which Swing does not mention, that other active methods also are very invasive, i.e.all forms of radiation....I believe that while the skin may look fine on the outside, the tissue is still radiated and and is destroyed, maybe even more invasive than surgery. Major negative effect are seen down the road, not up front.

There are other methods such as Cryo (freezing) basically a salvage therapy which causes ed in 100 percent of cases; hormones which have side effects that in a major way negatvely affect quality of life.

In summary I believe that many who are diagnosed for low risk prostate cancer feel that they need to do something, which is invasive to get rid of the cancer, and do not consider an Active Surveilance protocol which I believe is more appropriate. I have seen this attitude time an time again on this board and in person.

nowrest
Posts: 51
Joined: May 2011

So we get rid of the PSA test. Then how do you detest cancer? I realize of course that the test is unreliable but what else is there?

dakotarunner's picture
dakotarunner
Posts: 96
Joined: Feb 2004

I agree with no PSA test, how do we detect cancer? Do we wait until other problems show up? Maybe the test is not the greatest option available, but when it is the only option other than a DRE, it sounds like a winner to me. Many men do not mind giving a little blood for a test, but when the Doctor slips the glove and says bend over, they are gone.

I guess what you don't know can't hurt you, until it is too late. At least in won't bother the panel who came up with this. Hang in there fellas, and use your best judgement.

SeattleJ
Posts: 32
Joined: Mar 2011

To my mind, the problem isn't the test. It is clear that the PSA test gives both false positives & negatives and isn't terribly reliable. That's why so much research is being done to find a replacement. It's really only accurate for post-treatment PSA. However, the problems of over-treatment aren't caused by the screening test. They are often caused by men finding out they have a low grade,low volume cancer and demanding treatment. It's hard for many men to accept the idea that "no treatment now" is the best course of action. They want the cancer out or killed. There are also medical professionals that want to aggressively treat every cancer they find. However, you don't solve this by not screening men or by giving out the message that screening tests have no value. If we stop screening, we will miss those cancers (like mine) that are aggressive and dangerous.

I'm sensitive to this subject because this same group recommended cutting back on mammograms. As my wife is a breast cancer survivor (early stage found by mammogram) and I'm a prostate cancer survivor, this "guidance" hits too close to home.

John

mrspjd
Posts: 693
Joined: Apr 2010

Well said, John. Excellent post and I agree 110%.

Re the statement in a previous post by another member that “…this means that a lot of urologist/surgeons will be out of a job,” with regard to PCa treatments alone, I might add that it won’t just be the uro surgeons with a lighter case load---radiation oncologists, especially those working in the field of SBRT aka CyberKnife, will be at risk of losing much of their PCa business, since the majority of their PCa biz currently focuses on marketing to and treating men dx’d with low-risk PCa.

In regard to the report that the USPSTF may be recommending the elimination of PSA tests for men, here’s a novel idea (tongue in cheek, of course): I propose a new clinical study. The study group would consist of the men and women on the USPSTF advisory committee. (Yes, I know, I have a sick mind and that the study is flawed.) The men will not be allowed to have PSA testing (ever), and the females will not receive any diagnostic or yearly preventative mammograms. Each member of this study group will be followed until an end point. Upon the death of each study participant, an autopsy would be performed to determine cause of death. It will be interesting to determine the rates of occurrence and death from PCa and BCa in these men and women, respectively.

If even a few could have been saved by early detection, cancer education and treatment, then I’d be willing to bet their families would be very vocal supporters of early detection practices/testing along with a mandatory proactive education program on the potential impacts (pros and cons) of add'l diagnostic tests as well as all viable treatments, including active surveillance, for those who fit the low risk profile.

Swingshiftworker
Posts: 658
Joined: Mar 2010

If the reason for the recommendation is to reduce the number of needless surgeries occasioned by indiscriminate PSA testing resulting in large numbers of men suffering incontinence and ED as a result, I do not think that radiation services like CK or PBT (and other alternative treatment methods like HIFU) would necessarily decline in the treatment of early stage PCa, because they can be marketed as a viable alternative to surgery which will NOT have as great a likelihood of causing incontinence and/or ED but still kill the cancer even if they're not sure whether the cancer requires treatment or not.

Beau2
Posts: 246
Joined: Sep 2010

Hey Swing,

I agree that the recommendation is to cut back on treatment (primarily surgery, brachy, radiation, etc.). Since CK and PBT are used primarily on low risk patients, I would have to agree with mrsjpd that CK and PBT would feel a hit. Or are you proposeing the CK and PBT docs will morph into high risk PCa specialists?

hopeful and opt...
Posts: 1363
Joined: Apr 2009

if neessary, I feel that I am fortunate to be a position where I can can be monitored, and active treatment can be done if it progresses.

If I was not diagnosed, as many men will not be now, the disease can progress without being monitored, causing very negative consequences.

I do believe that the PSA gives some inication that a biopsy may be needed.

I also believe that there is a lot of overtreatment when a positve biopsy is found resulting from patient fears, ignorance and a need to do something. Additionally many docs are self serving. If this were not so there would be no discussion about the PSA test.

Swingshiftworker
Posts: 658
Joined: Mar 2010

My thinking is that if ONLY CK, PBT or other less potentially damaging treatments are used to treat early stage PCa, the incidence of problems w/incontinence and ED will drop dramatically.

I believe that higher risk PCa could be treated by these methods now and the only reason they are not used for that purpose is a policy decision by the physicians/companies involved which I believe is motivated to enhance their "cure rates" in order to gain endorsement by medical providers and insurance companies for broader use. Remember, CK and PBT are still considered "experimental" treatments by some medical insurers and they still need to prove to that these methods are not "experimental."

I believe that some people are considering using CK w/higher risk patients on a trial basis but I see no reason why it couldn't work, especially if it's used like (IMRT is currently applied) in conjunction w/hormone therapy for higher risk patients. Some men like Larry chose surgery only because he was refused treatment by PBT (or other methods) because their policy was to treat only men w/Gleason 6 and a PSA less than 10. Their success rate might drop if they treated Gleason 7 or 8 men but it doesn't mean they wouldn't have any success w/such patients; just less than they would and have been achieving w/Gleaon 6 (which would be contrary to their current need to "prove" the efficacy of their treatment method).

However, if this were to happen, I believe the use of CK & PBT (and HIFU, if it ever gets past it's "experimental" reputation) would rise at the expense of surgery, which (to my mind) would be a very good thing and would certainly result in a much lower incidence of incontinence, ED and other problems known to be caused ONLY by surgery without lowering the overall "cure" rate.

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

John,

I completely agree with comments you made in another post that the problem isn't the PSA test in and of itself. I don't think the problem lies with the patients either...as most lay patients have no real idea at the time they're first informed about their scores what the implications actually mean. In my mind, the big problem with the PSA test is what the diagnosing physician does with the information and how it's presented to the anxious man sitting in his office.

I think my case if fairly typical. A routine physical indicated that my PSA was 4.3 and my GP told me I needed to have it checked out by a urologist. Anxiety starts to build at this point. A few week later after a brief DRE with no abnormalities, the urologist strongly recommended a biopsy "to rule out cancer." Well shoot, who isn't going to go along with that recommendation? So back again in a few weeks and have the biopsy. A few weeks afterward I get the news..."unfortunately, we found cancer...but the good news is that we got it early and we can take it out and fix this problem for good." Now the anxiety is really building. I liked the urologist, I liked his staff, his office was convenient, he was recommeneded by my GP who I admire and respect. He had great credentials. Why not just do what he says? But wait, there's more: Run over to X-ray and get a bone scan to make sure the cancer hasn't spread. Of course at this point you're not thinking too clearly and of course you want a bone scan and how quick can I get there? Nowhere in this process did anyone tell me that the bone scan with the pathology I had wasn't going to find anything. Nobody told me the pathology might well be an indication of indolent cancer. Instead, while in a very vulnerable mental state, I was pushed toward surgery and the sooner the better. "We can get it all."

I think a lot (if not most men) in this situation get sucked into the system and end up getting over treated and may well indeed end up with complications much worse than their original cancer ever would have given.

In my opinion, what should have happened is this. The GP tells me the PSA is "above normal" but, oh by the way, there really is a lot of conflicting opinion on what "normal is." Before we go to the urologist, lets rule out prostititus, a low grade urinary tract infection, or BPH. GPs ought to be able to do this easily. He should explain that things like sex before a blood draw, a lot of bicycle riding, taking Advil, and several other things can cause a temporary spike in PSA. Go home, be celibate, quit taking Advil, avoid the bike for a few days, and come back in a week and let's do another PSA test. In the meantime, let's test your urine for UTI. And, oh by the way, let's calculate your PSA Doubling Time, PSA velocity, and PSA density.

If, after doing these simple additional checks which every GP ought to be well informed about and capable of performing, the PSA is still elevated and PSA density is above 0.1 and the doubling time is troublesome, and he has ruled out a UTI then maybe it might be a good idea to consult with a urologist.

The urologist should rule out prostititus through a 6-8 week anti-biotic regimen before he suggests a biopsy to further determine what is going on.

Patients should understand the pros and cons of biopsies, the risk of infection, and the fact that a negative biopsy doesn't necessarily mean you are free of cancer...but only that the less than 1% of the prostate tissue sample didn't have any abnormal cells.

If cancer is then detected, patients should be counseled by independent oncologists, radiologists, and surgeons who are not financially connected with the diagnosing doctors. Second opinions on the biopsy should be obtained.

Prostate cancer patients need an ombusdman to oversee this process and ensure that the men and their spouses or significant others get an informed and balanced perspective of the pros and cons of each treatment method, what the side effects might be, and what short and long term risks are involved.

If we had a process similar to this we would probably save billions of dollars in over treatment costs to our health care system and improve the quality of life for men suffering from PCa.

Many posters recognize that the PSA test may have saved their life just as many women were treated for breast cancer after a timely mammogram enabled them to get treatment before it was too late.

The other thing about PSA testing that tends to be overshadowed in these reports is that after treatment, whether by radiation or surgery or some other means, the ONLY way to monitor the success of the treatment is to regularly monitor the PSA for the rest of your life.

I say keep the PSA test. Change the way we handle the information it provides.

K

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Excellent post as always Kongo.
My diagnosis followed closely to what you described with a few exceptions.
I did take the anti-biotic regimen between my psa tests. PSA still climbed. Then I was sent from family doc to the urologist who did the needle biopsy. After the phone call telling me I have cancer and to bring my wife in...He spent close to 1.5 hours discussing ALL treatment options in detail with us as a couple. He is a surgeon but did not push me one way or the other. He did tell me to perform my research and he would support me in what ever path I picked. He did caution that with my Gleason 7 I needed to do something in his opinion within one year. About one month before my Davinci surgery I Stayed away from the bike, sex, etc...had another PSA test on my own at a 'health fair' and the PSA had climbed again.

I have a family history of prostate cancer. I was only 54. Post biopsy confirmed that I indeed needed something done since I did have a positive margin.

So many though just take what the doctor states and do not take the time for their own research.

This urologist still performs my PSA testing for me for my followups.

I agree keep the PSA Test...better education though is needed on handling the information.

lewvino

jerrylh
Posts: 5
Joined: Oct 2011

This organization is reliable and accurate. It has been continuously misreported that it recommended against breast cancer screening in women under 50. It was misreported again in the New York Times again today. Please do what no one seems to want to do. Go to the website and look at the recommendations http://www.uspreventiveservicestaskforce.org/uspstf/uspsbrca.htm

Their recommendation against the use of screening PSA's is absolutely correct.

hopeful111
Posts: 13
Joined: Nov 2010

In the context of above reply and "Change the way we handle the information it provides.", some comments:

am so confused and discouraged by this recommendation; I realize its not meant to be a textbook on pca
but leaves out the finer points about should anyone get any treatment at all and what evidence (ie gleason, etc)
might relate to actually getting treatment, as opposed to not doing anything at all even if they have taken a psa
and its high or high velocity, etc.

I realize some books and articles explain about this, but its not always easy reading and I don't know how many Drs do explain it at
any level, ie if you have such and such a gleason score, and/or
such and such results from bone scans, etc -- that certain treatments
should be done, otherwise surveillance. I guess this is just another
example that until things change with the info provided us, that its up to us to discover it as best we can.

But right now, am sort of doubting/wondering if all that info about
gleason, bone scans, etc are valid also as to decision making -- just
as its mentioned that often recommendations for the treatment
itself is given with profit in mind and not really needed in dr. opinion.

Rather depressing to be thinking in these terms but while disagree
with panel recommendation itself, seems like have read many times
before about treatments that were not needed or for which side
effects not explained in enough depth.

also confused about mention of "healthy men" not getting psa - most folks I think who did/do have pca had no other
evidence of it before psa led to biopsy/treatment/etc - as is mentioned
in several posts in this thread.

am well aware of the profit motive for many drs and their practice orgs for the surgery, radiation to be done, as well as for the adt to be done and promoted by drug cos even if not needed.

but aware also of the desire of ins cos to save costs/payments, which would happen if no treatments done or done a lot
less - and from some comments elsewhere have stated that this was partly
or all behind the panel's recommendation, and that panel recommendations
effect coverage/benefits of ins cos or medicare and can thus lead to reducting those benefits even if a person wanted those treatments
and their dr agreed.

==> thus having gone thru treatment recently (adt, imrt) and now waiting for the first 3 mo psa result and dr visit,
and having read what I thought was a lot in books, msg boards, etc -- am just totally confused by all of this
now and asking myself did I do the right thing or the wrong thing in getting treatment or in getting psa at all, and seeing all my side effects of the adt and imrt, which i know is not unique to just me, does not help (i was gleason 7(4+3) in 4 cores of 12 - 90% in each of those, gleason 3+3 in a bit of some others.

sorry if writing a bit incoherently here but this recommendation really has me confused (though aware that this recommendation
and referred to studies are not new nor is this controversy but so much more visible and in my face now)

hopeful111

KathyLQ
Posts: 78
Joined: Dec 2010

Hi everyone, I am a woman, age 59
I got breast cancer last year, chose a mastectomy with doctor's recommendation and have gone through 6 surgeries for reconstruction (so don't talk to me about "associated harms", I've lived them!), LOL!

I assume you all are familiar with the Mortality rates for Prostate Cancer? They're here if you want them : http://ratecalc.cancer.gov/ratecalc//new.html

My point... do nothing.. and men will die! If I had done nothing with my breast cancer, my life expectancy would have been shortened quite a bit. I consider myself lucky because the pathology of my breast found no additional cancer cells, and none were in the lymph nodes.

So where is the recommendation on WHEN to take out the prostate to prevent likely death from the cancer progressing???

My boyfriend is 71, he has had a prostate biopsy, and yes there is cancer. He is planning surgery. He's very healthy, could live another 20 years. So what would he do under the new recommendation?... wait until he is 85, then realize he really needed the surgery and suffer major "associated harms" from surgery then? Or take a chance that he'll sail through surgery better at this age?

Anyone want to comment?

jerrylh
Posts: 5
Joined: Oct 2011

Hi Kathy

First of all regards your boyfriend, no he would wait until he is 85 and never need anything done for his prostate cancer. Be aware that at age 85 95% of ALL men have prostate cancer and that 100% of all males age 90 have prostate cancer. Remember that only 2.5 to 3.0% of men with prostate cancer will die from their disease. And that death rate is the same even in countries where there is no screening. Remember, Kathy, these are recommendations for healthy males, not for males with blood in their urine for example.

The reaction of most of the readers here is not surprising. in the 1950s and 1960s everyone was getting screening chest x-rays to detect early lung cancer. The studies revealed that we were not saving lives, but the screening continued for another 10 years until it finally died out.

Jerry

KathyLQ
Posts: 78
Joined: Dec 2010

I asked my boyfriend for more specifics. He is 71, he has a Gleason Score of 7, and one biopsy core was 15%, and and 2nd biopsy core was 5%. At this current time, he is leaning towards the robotic surgery. BF is very active, not overweight, walks 5 miles regularly, rides a bike 5-10 miles regularly. Has relatives that have lived into their 90's.

I found this article at the Prostate Cancer Research Institute interesting: http://www.prostate-cancer.org/pcricms/node/165. Titled: "The Gleason Score: A Significant Biologic Manifestation of Prostate Cancer Aggressiveness On Biopsy"

It mentions a DNA analysis, called "DNA ploidy". Is this being done?

Comments?

guards
Posts: 72
Joined: Aug 2010

Kathy have him consider this seriously. I played golf. rode my bike, traveled about 15000 miles a yr on my motor cycle, and had sex with my wife, Thank to treatment and incontinance it all went away. You don't play golf while your pissing your depends. You can't ride a even a recumbent bike unless you can change pads somewhere on the bike path because its like a pump and fills them fast, You cant even make iit through a trip shopping at the grocery store with your wife unless they have a restroom handy so you can change,
So likey will be a very dramitic change somewhere down the road . If some one had explained the survival rate and conquences of treatment on a understandable form ? Would I have chosen differently knowing what I know today YOU BETCHA, 10-15 YEARS of a real life versus the $%^%%#$@ And the life I currently have. Ill take my shot at 80 and a normal life.

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

Jerry,

Are you a prostate cancer survivor? If so, how were you diagnosed? Most men, in my opinion, are grateful for the information the PSA test provided. They may well be unhappy with the results of their treatment but I am sure most men want to know if their PSA test even remotely suggests something abnormal. PSA can also highlight other potential problems other than PCa.

Most of us realize that the incidence of prostate cancer increases with age but I believe you statement that ALL men who are 85 or older is an exaggeration.

The task force study provides interesting information but it seems to be throwing the baby out with the bathwater. Many men, myself included, were otherwise "healthy" when their PSA test signal led a problem. Many younger men are being diagnosed with more aggressive forms of PCa and have higher Gleason scores. Without the PSA test they could well be losing many years of life expectancy without early intervention.

Mrspjd has suggested concerned survivors register their concerns with the task force. I think it's a good idea.

K

jerrylh
Posts: 5
Joined: Oct 2011

Hi Kongo

I am 69 and I have always told my doctor NOT to order a PSA.

Remember. These guidelines are for ASYMPTOMATIC males. If you wait until, let's say you have blood in your urine, and then get a work up for prostate cancer, your odds of survival are the same as if you had had a PSA and an earlier diagnosis. Please try to understand, NO ONE IS SAYING DON'T TREAT PROSTATE CANCER. What is being said is to wait until you have symptoms. Your survival is not decreased by waiting for symptoms. BTW, it is the same for lung cancer.

LOOK, I know it sounds intuitive that PSA screening would save lives. I know that it is counter-intuitive that waiting for symptoms won't affect survival. However, there has never been a double blind study that showed an improvement in all cause mortality with PSA screening in ASYMPTOMATIC MALES. There have now been 4 studies that failed to show improvement in all-cause mortality. The last two were Swedish studies. Sweden has a socialized medical system, so they were able to randomize patients to screening PSA or no screening PSA. In the end, there was no different in all cause mortality.

Thanks,

Jerry

Beau2
Posts: 246
Joined: Sep 2010

Hey Seattle,

Good point, "The report adds that PSA testing is "associated with harms related to subsequent evaluation and treatments."

It really seems that the Task Force is trying to kill off a cheap and easy test because it is related to other evaluations (biopsies) and treatments (radiation, surgery) that may be harmful and are costly.

Why not go after the big ticket item (treatments) and say guys with a low risk PCa get no treatment .... I'm guessing its because currently there is no way of being even 90% sure a guy has low risk PCa (short of removing the prostate and doing a complete biopsy). This is why low risk PCa patients on AS continue to get their PSAs done ... they are not sure if they have a low risk PCa.

Its easier to recommend no PSA; therefore no biopsy; therefore no treatment. Its just a bunch of old guys anyhow.

VascodaGama's picture
VascodaGama
Posts: 1594
Joined: Nov 2010

The problem is not in the PSA but the interpretation and judgements that follow its findings. Physicians are not prepared to interpret accurately the tests’ meaning. Treatments are still primitive and guessing and do not address the cancer itself igniting thoughts like the “get rid of it”.
Reliable Institutions also fall in the trap and produce “Guidelines” which are antiquated to the occasion. Updates must be based on past experiences of many years and that turns the whole aspects of the prostate cancer ambiguous.

Prevention programs for cancer should be obligatory as must as are the vaccines we all take at young age.

Regards to all
VGama

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

Hey, Vasco

What type of obligatory cancer prevention program would you suggest?

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

Hey, Vasco

What type of obligatory cancer prevention program would you suggest?

mrspjd
Posts: 693
Joined: Apr 2010

All,

If you’re concerned about the USPSTF’s draft report recommendations against PSA based screening for PCa and would like to learn how to make your comments heard, please read the “Call to Action” thread: http://csn.cancer.org/node/228042

P.S. Apparently, the "Call to Action" thread has been flagged by a CSN member. If the thread is removed, I encourage you to please visit the "Us Too" PCa website:

www.ustoo.org

Read the "Advocacy Alert" info on the left side of the Us Too home page to learn how you can make your comments heard by the USPSTF beginning Tuesday, October 11, 2011, and running through November 8, 2011. Thanks.

hopeful and opt...
Posts: 1363
Joined: Apr 2009

I hope that others will do the same

To make it easy, here is a sample cover letter

Here is information about the new guidelines that are being proposed about PSA testing. You will find this informative.

The below reference is taken from a site that I frequent provided by the American Cancer . www.csn.cancer.org

This site is very informative to those of you who are interested in gaining knowledge about prostate cancer.

Please feel free to comment to this action committee starting on Tuesday.

Here is the thread http://csn.cancer.org/node/228042

mrspjd
Posts: 693
Joined: Apr 2010

The "Call to Action" thread: http://csn.cancer.org/node/228042 has been UNFLAGGED by CSN and remains posted! I assume this means that the thread will stay up even if flagged again. Thanks to CSN admin for keeping the thread on the board.

Appreciate your support and help in getting the word out on this important issue.

Again, MANY THANKS to CSN!

gottalottodo
Posts: 8
Joined: Oct 2010

As usual, VGama, you are right on, However, there are so many confounding variables in this chain!
I want to start with basic statistics. Make a 2x2 grid. To the left side of the grid, write cancer and under it no cancer. on the top write test positive over column 1 and test neg over column 2. so first box, starting in upper left is cancer and test positive [good; called true positive]. next, top right is cancer and test negative [bad, because cancer can grow undetected, called false negative]. Second line, lower left box no cancer and test positive [false positive - bad because workup and treatment not needed]. Last box, lower right is no cancer, test negative [true negative; good because nothing is indicated]. life would be good if after testing thousands, only true positives and true negatives exist. But that's not true of PSA. More alarming is that true positive doesn't necessarily mean that you go for it, as in the case above of breast cancer. You all have elegantly discussed the many other factors involved. each of us i believe have to interpret the findings from his own point of view. mine, for instance, is kind of sad [for me]. i had had years of PSAs done, starting soon after age 58 in 1997. they were normal but in retrospect slowly climbing to about 3.4 by 2002. I missed having a PSA done in July 2003 [usual time for annual physical]. I went directly to urologist in Feb 2004 because of frequency and nocturia, expecting to get prosgar for BPH. My PSA was 417, repeat 422. I had biopsies [8 of 10 positive and Gleason 7]. I wonder would PSA have been 8 months earlier??
I don't know if it would have indicated a tumor then treatable for cure. But i sure wish my internist and i hadn't forgotten to get a PSA when i was 'supposed to.' Now i'm a general surgeon and i remember Mike DeBakey, the famous heart surgeon from Texas. He was on the cover of Time and the quote was, "if they can operate, you're lucky." Of course, there were no other modalities of treatment then, long before angioplasty. Rephrase it as, "if they can kill it all" and we get to many of comments in this string and the dilemmas.

IMHO, the problem is simple. That concept is clearly too simplistic as the variation in prostate cancers preclude any sort of guidelines or decision tree based on hard data. so we want certainty when it just can't be there. We don't know enough. we do know people are working hard to find ways to distinguish among the good, the bad and the ugly cancers. Compared to esophageal cancer and pancreatic cancer we have it good. look up the pancreatic cancer survivor statistics. In the last 40 years, the % of survivors after surgery has risen from around 5% when i was a resident in the late 60s to perhaps 40% in series from Johns Hopkins and Mass General. But the NUMBER of survivors is about the same. they have multimodality screening devices that can now identify those cancers that can't be cures and so surgery is not offered. The improvement in diagnosis has decreased the number of patients who had no chance but it only be discovered at surgery.

What we, as advocates for prostate cancer patients, have to worry about has already been mentioned in this string and i repeat for the sake of emphasis. the news stories will not have the correct information. no one takes time to go back to the original sources. other media reporters on TV or individuals who act as authorities will quote [or rather further mis-quote] the original findings and they may be believed by people who then will do the wrong thing. then the disease will not be picked up too early and too often as it is now, leading to the bad outcomes of overtreatment. they will be like me. never had a chance for a cure. believe me, i was shocked when my urologist looked up from the lab report of 417 and told me that the level was usually associated with cancer beyond the prostate or stage 4 disease. The good news is that Lupron took care of me for 7 years. Casodex and DES bought me almost a year so i could get Provenge and now just started Zytiga.

I admire the depth of information that so many of you display in your comments. too bad new patients can't automatically be referred to this website after an 'abnormal' PSA. Here they could find people who had the time and wanted to explain the variables. Keep up the good work.

mrspjd
Posts: 693
Joined: Apr 2010

The USPSTF has posted their draft report on their website here:
http://www.uspreventiveservicestaskforce.org/uspstf12/prostate/draftrecprostate.htm

The Task Force will be accepting comments on this draft recommendation statement beginning on Tuesday, October 11, 2011, and running through November 8, 2011.

Everyone is encouraged to post their comments (pro or con) beginning Tuesday, October 11th at this website:
http://www.uspreventiveservicestaskforce.org/tfcomment.htm

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

Thanks for the superb post, gotta. I'm sure we all appreciate your informed perspective. Wishing you continued success in your battle.

K

hunter49
Posts: 204
Joined: Oct 2011

My PSA in August was 4.1 up from 2.54 in 4/09. I could have ewaited instead I went for a biopsy right away and one out of 15 was posative with 95% and a gleason of 3+4. Had I waited 6 months who knows. All scans were clear. One of my best friends is an oncologist who works on reasearch for PC and pancreatic.. They are doing some real cutting edge stuff aat Hopkins. His simple reply is the reason we are having success with vaccines with prostate as a opposed to pancreatic is early detection. A psa is not a diagnosis but a warning light. As a former naval fighter pilot you relied on indicator lights to avoid disaster. Like a pilot, doctors need to be trained as to what the indicator light is warning, process the information and react. However, if the light indicated fire you move quickly. If it was a back up gauge or electronics you watch it. A high PSA or one doubling in a year indicates fire so react. After you assertain it is cancer then fully research your options and move. Cancer does not wait for you to come and get it.

hunter49
Posts: 204
Joined: Oct 2011

My PSA in August was 4.1 up from 2.54 in 4/09. I could have ewaited instead I went for a biopsy right away and one out of 15 was posative with 95% and a gleason of 3+4. Had I waited 6 months who knows. All scans were clear. One of my best friends is an oncologist who works on reasearch for PC and pancreatic.. They are doing some real cutting edge stuff aat Hopkins. His simple reply is the reason we are having success with vaccines with prostate as a opposed to pancreatic is early detection. A psa is not a diagnosis but a warning light. As a former naval fighter pilot you relied on indicator lights to avoid disaster. Like a pilot, doctors need to be trained as to what the indicator light is warning, process the information and react. However, if the light indicated fire you move quickly. If it was a back up gauge or electronics you watch it. A high PSA or one doubling in a year indicates fire so react. After you assertain it is cancer then fully research your options and move. Cancer does not wait for you to come and get it.

hunter49
Posts: 204
Joined: Oct 2011

My PSA in August was 4.1 up from 2.54 in 4/09. I could have ewaited instead I went for a biopsy right away and one out of 15 was posative with 95% and a gleason of 3+4. Had I waited 6 months who knows. All scans were clear. One of my best friends is an oncologist who works on reasearch for PC and pancreatic.. They are doing some real cutting edge stuff aat Hopkins. His simple reply is the reason we are having success with vaccines with prostate as a opposed to pancreatic is early detection. A psa is not a diagnosis but a warning light. As a former naval fighter pilot you relied on indicator lights to avoid disaster. Like a pilot, doctors need to be trained as to what the indicator light is warning, process the information and react. However, if the light indicated fire you move quickly. If it was a back up gauge or electronics you watch it. A high PSA or one doubling in a year indicates fire so react. After you assertain it is cancer then fully research your options and move. Cancer does not wait for you to come and get it.

jerrylh
Posts: 5
Joined: Oct 2011

Kongo
new
Hi Kongo

I am 69 and I have always told my doctor NOT to order a PSA.

Remember. These guidelines are for ASYMPTOMATIC males. If you wait until, let's say you have blood in your urine, and then get a work up for prostate cancer, your odds of survival are the same as if you had had a PSA and an earlier diagnosis. Please try to understand, NO ONE IS SAYING DON'T TREAT PROSTATE CANCER. What is being said is to wait until you have symptoms. Your survival is not decreased by waiting for symptoms. BTW, it is the same for lung cancer.

LOOK, I know it sounds intuitive that PSA screening would save lives. I know that it is counter-intuitive that waiting for symptoms won't affect survival. However, there has never been a double blind study that showed an improvement in all cause mortality with PSA screening in ASYMPTOMATIC MALES. There have now been 4 studies that failed to show improvement in all-cause mortality. The last two were Swedish studies. Sweden has a socialized medical system, so they were able to randomize patients to screening PSA or no screening PSA. In the end, there was no different in all cause mortality.

Thanks,

Jerry

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

Jerry,

I appreciate your perspective. I just don't happen to agree with it. I do pretty much agree with Dr. Albin, the researcher who discovered the PSA test we use today that the PSA test has been greatly abused by the medical community and has likely led to a tremendous amount of over treatment in the United States. I believe Dr. Albin’s position is that it’s the way this information is handled, not the test itself, which is the problem here. I share the opinion that the problem is not with the test itself...it's how the results of the test have been used (either deliberately or with all the best intentions) to scare men ignorant of the nuances of prostate cancer into getting treatment that often leads to a much worse quality of life than cancer may have produced.

An individual PSA score is just a number. A single data point. But when several PSA scores are recorded over several years a very different perspective of testing PSA emerges. With several tests we can calculate a PSA doubling time that can give an indication that prostate cancer may be growing. It can be used to calculate PSA velocity and, when used with an accurate reading of the prostate volume, PSA can be used to determine the PSA density within the prostate. There are several studies that show the value of using PSADT, PSA velocity, and PSA density to determine the relative threat of prostate cancer. The task force chose not to address these issues and I wonder if the reason was because it didn't jive with the committee's draft conclusion.

While most prostate cancers are slow growing strains, there are a few of the twenty odd PCa variants that are very aggressive. Since PSA can't suggest whether or not you are harboring one of these more virulent types I would imagine that most men would want the opportunity to treat it as early as possible while there is a reasonable chance it is contained within the prostate gland. We all know that the higher Gleason scores have a much higher risk of seeing the cancer move beyond the prostate and settle in some other organ. We also know that once prostate cancer moves beyond the prostate it tends to grow faster than before.

From your post it seems that you have not had to personally deal with the decisions about what to do with a prostate diagnosis. I certainly hope that you never do. But those of us who have had to deal with it are, for the most part I suspect, grateful to have at least been given the opportunity to make choices about what to do. Whether we make the most appropriate choices for our diagnosis is another matter entirely and I think you would agree with me that men should proceed with prostate cancer treatment options very, very carefully and be fully informed about what they're signing up for. This is why I suggested in an earlier post that an ombudsman belongs in the process without ties to the insurance community or diagnosing physicians that could help steer the newly diagnosed patient through their options.

I certainly respect your decision to avoid ordering a PSA test when you have routine blood work drawn but frankly, I don't understand why you would forego the potentially valuable information a well documented history of PSA testing could provide you and your medical team when making a decision should you ever have prostate cancer. It is always your choice to avoid a biopsy or further investigative testing and you seem well versed in the issues surrounding testing. So why not have the test done?

If I had been half as smart about PSA when it popped above 4.0 20 months ago as I am today, I would have handled it entirely differently. Whether or not I would have ended up making the same treatment choices I did is something I will never know. As it is I chose an approach (CyberKnife) to minimize quality of life issues and treat an early-detected prostate cancer with a favorable pathology after much research and consultation with many specialists. Having the PSA history I did was a major factor in helping me frame the actual threat of prostate cancer given the information that was available to me at the time.

Many men with very advanced prostate cancer have no symptoms, as you know. If we waited until symptoms to do a PSA test, I do believe that many more men would die before their time.

I understand that a major crux of your position is that in large population studies there is no difference in all cause mortality between those who were treated early and those that waited until they were symptomatic. That is a strong argument if we were only making decisions based on the large population studies cited by the task force or had a health care system that was focused solely on the bottom line. But despite what the studies chosen by the task force show, I recall reading other studies that indicated that men who followed watchful waiting after low threat diagnosis had a higher prostate specific mortality than those who chose RP. If your argument about it not making any difference were correct, then I would think that these numbers would be the same. (See http://www.nejm.org/doi/full/10.1056/NEJMoa043739 from the New England Journal of Medicine) Another study from Sweden showed similar statistics (http://jnci.oxfordjournals.org/content/100/16/1144.short). I am not aware of any studies that compare long term all source mortality with the newer forms of radiation such as CyberKnife or IMRT. I don’t think it’s been long enough.

My impression when I reviewed the task force data, and please correct me if I’ve missed something, that they chose studies that supported their draft conclusion and chose to ignore studies that suggested a decreased all source mortality rate through early stage action triggered, presumably, by a PSA test.

Certainly this is an important debate although I do understand why men who feel that their lives have been saved by a simple PSA test would be emotional about it. I do appreciate your perspective, but I remain convinced that there’s nothing wrong with the PSA test…it’s how we handle the information. And I do hope that someday soon we find a better way of diagnosing prostate cancer and the relative threat to our health than the way we do it today.

As mrspjd suggested, those who feel strongly one way or the other should take the opportunity to respond directly to the task force in th appropriate forum.

Best,

K

jerrylh
Posts: 5
Joined: Oct 2011

Hi Kongo

I appreciate you perceptive comments. A couple of clarifications. There are four major studies. The USPSTF didn't ignore anything. Two of the four studies did show a decrease in deaths due to prostate cancer. For example the widely respected European study showed a decrease in the death rate due to prostate cancer of 28%. The reaction to that is to say, "hey screening works." That is until you look closely at the numbers.
The death rate for prostate cancer is 2.5-3.0% That means that for every 1000 patients with prostate cancer 25-30 will die of their disease. A 28% decrease means that approximately 7 patients of 1000 with prostate cancer will be saved. Now comes the rub. The death rate for prostatectomy is 0.5 to 1.0% or about 7.5 patient will die from the surgery. What you have to look at "all cause mortality" not death due to prostate cancer.

About a year ago, Dr. Ablin wrote an extensive editorial in the New York Times decrying PSA screening. He called it the great prostate mistake. http://www.nytimes.com/2010/03/10/opinion/10Ablin.html. It makes for interesting reading. Let me know what you think

Regards,

Jerry

VascodaGama's picture
VascodaGama
Posts: 1594
Joined: Nov 2010

Gottalottodo

I am very happy for seeing your post and would like to thank you for sharing your story.
Your experiences as a survivor and as a professional physician of many years in practice are impressive. I have nothing to add with regards to the theme of this thread. As you commented PSA is not a baton to judge “trues” and “falses” in complete symphony with other elements. It falls short to the expectations that many of us put on it.

I am not a physician but an avid student since being diagnosed in 2000. I have participated in cancer conferences as a patient and have exchanged opinions with doctors in regards to PCa. My researches have given me the understanding I need for being positive along my survival.

In your PCa case, the trend of the results you got during the five years of tests should have raised a flag to your real status, back in 2002. I doubt that the aggressiveness of our cancers would increase in a span of two years without a cause. Cancer in my opinion maintains its “basics” and replicates as far as our system “allows it”. The behaviourism of indolent slow-grow to active fast-grow is due to alterations influencing those “basics”. Moments of stress, anxiety, body biorhythm or event treatment interventions can cause variations in our “defences” and lead to sudden “explosions” of activity in cells. You may have had something that can be related to the moment causing that sudden explosion represented in the fast increase of antigens from 4 to 400.

Each ones cancer behaves differently in regards to influences one is subjected to, and that leads to similarities but not to equalities. I relate my case to STRESS.
Nevertheless, earlier and timely prevention programs should set a series of instructions to avoid those moments of “forgottenness” or “lost chances in cure”, and they should be informative and clear about what each precautious item represents. “Certainty” would be closer and would serve you guys (surgeons) with a better “tool” in the decision of a timely intervention.

I sympathise with your expression that our cancer is qualified in the group of the “good” ones, in spite of being not that good for you. My own qualification of treatments is in a sequential scale as; the Manageable, the Treatable and the Controllable. Those should be included in the prevention programs.

I would appreciate if you could give us the chronology of your PSAs while on treatment (since 2004).

Thanks for the post and good luck in your continuous journey.

VGama

Swingshiftworker
Posts: 658
Joined: Mar 2010

Thanks for bringing up that point!

I don't think it's ever been discussed here before.

My focus (as a prospective patient who chose CK instead) has always been on the primary side effects following the survival of surgery -- mainly ED and incontinence (temporary and permanent) -- but also on the lesser but extreme possibility of worst things, such as hemorrhaging, infections and/or malpractice related injuries to the rectum and bladder.

I never really focused on the possibility of DEATH following surgery but it's an obvious risk that exists and is just another reason why (as remote as the risk may be) men should, if at all possible, avoid letting anyone cut them open to take the prostate out unless ABSOLUTELY necessary.

ProfWagstaff's picture
ProfWagstaff
Posts: 98
Joined: Jun 2010

I was one of those guys who NEVER went to a doctor. My motto was, "If there's not a bone poking through skin, I don't need a doctor." My younger brother was diagnosed with PCa and his urologist told him to get me screened. After several months of nagging, I went for a screening just to shut him up and prove that I was fine. PSA was 20.4 and I was at stage T2c with no symptoms. If I had followed the recommendation and not gone for a check, it may not have been detected until too late. I might have been terminal by now instead of having been treated and have an undetectable PSA again. The recommendation is short-sighted and will likely sacrifice many good men.

VascodaGama's picture
VascodaGama
Posts: 1594
Joined: Nov 2010

A powerful comment by Dr. Charles Myers in regards to the latest US Preventive Services Task Force’s (USPSTF) draft recommendation on prostate cancer screening (PSA). He recalls times of Vietnam when returning soldiers were treated badly.

Bulls**t are his pragmatic words to the panellists.

I am glad to know that he pairs with us on the matter, as a patient and doctor.

Here is the video;
http://askdrmyers.wordpress.com/?mkt_tok=3RkMMJWWfF9wsRonuqXJZKXonjHpfsXx6OosT%2Frn28M3109ad%2BrmPBy%2B2IYGWoEnZ9mMBAQZC81x0gNLDuGBeYZP6OBQ

VG

barry2468
Posts: 9
Joined: Jan 2012

I ignored my psa reading in 2000 and continued on my merry way for 10 years getting a check every 2 years or so. In that time my psa rose slowly from 4.2 to 10.7. Not to worry my dr said, this is normal for your age ( then 73). Then in 2010 (November) it struck me. Pain in the lumbar area, lower ribs on the right side, lower spine. I had another psa in December (after taking pain killers in the meantime for the sometimes acute pain) and in 10 months my psa had shot up to 116. By taking notice of my trusty dr's I now had agressive prostate cancer. Who said that psa's are useless and sometimes negative. In my case they were giving me a warning which was ignored (with the help of my trusty dr's). My life expectancy has considerably reduced because of this and I have my trusty dr's to thank for it. They are not my trusty dr's anymore needless to say. I would recommend to anyone NEVER ignore the psa readings and change dr's if they don't agree with you. Barry

bdhilton
Posts: 759
Joined: Jan 2010

Contrary to What Dr. Virginia A. Moyer, the pediatrician who chaired the USPSTF panel has said in the popular media.....

http://malecare.org/william-j-catalona-md-comments-on-the-u-s-preventive-services-task-force-uspstf-recommendation-against-prostate-specific-antigen-psa-based-screening-for-prostate-cancer/

Best to all-B

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