PSA test: Don't do it, say angry men

There were groans in the audience, knowing nods of the head, a good number of men leaving auditorium seats in a rush to the bathroom, and wives giving a comforting rubs to their spouses' arms at each intimate revelation in the documentary they were watching, "The Second Opinion." Many of these men, guests invited by a fledgling group trying to get the word out that they think the standard screening test for prostate cancer is a bad idea, had more than a casual interest in prostate cancer. They've lived through its impossible choices and the often mutilating results of its treatment. Some of them were as sad, frustrated and angry as the men on the screen.

Now, a recommendation in the Aug. 5 Annals of Internal Medicine might give a boost to this start-up organization, Cure for Prostate Cancer Now Foundation. (Don't Google it. It doesn't have a website yet, and you'll get organizations that have the exact opposite agenda.) The U.S. Preventive Services Task Force, which in a 2002 recommendation failed to take sides for or against PSA tests for men, saying there was insufficient evidence that early detection improves health outcomes, has gotten a bit stronger.

In its 2008 recommendation, the task force comes flat-out against the test for men older than 75.

That should make Richard Ablin happy. He's the guy who discovered the protein PSA in the first place, back in 1970. The research professor at the University of Arizona Health Sciences Center has spent 38 years arguing that using PSA levels as a marker to screen for prostate cancer is a worthless endeavor, with potentially mutilating effects on men scared into following the test with surgery or radiation. "The PSA test is an absolute, total catastrophe," Ablin said after the screening.

The movie last month at the Gower Theatre at Paramount Studios showed men discussing embarrassing and humiliating consequences of treatment for prostate cancer. Some in the film talked of wearing diapers. One man hadn't had an erection in 13 years. "Being impotent for 13 years bothers me no end," he says in the movie. One man in the film, a vigorous 78-year-old when he opted for cryosurgery, in which cancer cells are killed by freezing the prostate gland, was now an 80-year-old barely able to walk, and unable to normally empty his bladder or have sex after numerous surgeries to correct damage to surrounding organs, accidentally frozen during the procedure.

And the several hundred men in the audience, some with their wives, nodded, perhaps in silent understanding. They may be among the 234,000 men diagnosed each year with prostate cancer. About 150,000 of those diagnosed move quickly to choose surgery or some form of radiation treatment. Only about 12% choose to wait it out and be medically monitored for signs of worsening, according to a story in the July 3, 2006, Los Angeles Times.

The dilemma for men diagnosed with the PSA test is that it often steers far too many men to treatment that can result in impotence and incontinence.

Unfortunately, there's no way you can see the movie. Not yet. The moviemakers and organizers of the event are just getting started in fighting back against a national movement to promote the PSA test for men over 50. They are searching for a distributor for the documentary.

Los Angeles urologist Dr. Alan Shapiro says in the movie, "The PSA test has done much more harm than good." That's because men are rushed to treatment, either surgery to remove the prostate or radiation to kill the cancer cells. Both treatments often result in a man's inability to have an erection or an orgasm and in lifelong incontinence. "Ask me what my PSA number is," Shapiro says after the screening. "I don't know. I practice what I preach." That's because the odds are high that the cancer cells discovered by the test will never do any harm. Most men will go on to live long, healthy lives and eventually die of something else.

The odds are also good that those who opt for surgery or radiation will survive and be cured of their disease. The problem is that no one knows how many of those treated never needed to be cured of anything. Their disease would not have progressed. Thousands of them will have suffered severe consequences for no good reason, but they'll never know.

Of the 232,000 men diagnosed with prostate cancer each year, the vast majority have a slow-growing kind that will never escape the prostate or cause any noticeable problem. Still, 32,000 men die each year of the disease after their cancer spread from the prostate. But testing cannot accurately sort the deadly cancers from the harmless cells.

It adds up to many men receiving emasculating therapy when medical science cannot say definitively that they need it. The documentary screening, says Shapiro, was timed to counteract all the public service announcements seen on Father's Day urging men to take the PSA test to be screened for prostate cancer.

The test gained FDA approval after Dr. Thomas Stamey published the first paper in 1987 in the New England Journal of Medicine claiming that it could be used to diagnose early prostate cancer. He's come full circle, and no longer supports the test as a screening tool, saying "The PSA era is over in the United States."

The debate isn't over. The American Cancer Society recommends PSA screening, along with a digital rectal exam, for men over age 50. But the American Medical Assn. says that PSA screening is unwarranted. Now the U.S. Preventive Services Task force says there's not enough evidence to warrant doing it, and those over 75 should not have the test.

And a new group, still website-less and in search of funding to distribute its documentary message, is joining the fight against the screening test.

-- Susan Brink

Illustration: Wes Bausmith, Los Angeles Times

Comments

[Brad Warner]

If 32,000 men die each year, don't test is not an answer. It might save money but not lives. Give me an alternative. Otherwise, let me choice for myself. If I know I have prostrate cancer, I can make up my own mind. You and every ofther person with an opinion sould support the education but not the removal of the PSA test unless you have something better to offer.

[Gary]

I am a 58 y/o male that had my Prostate Cancer indicated by a PSA. I was 55 at the time and elected to have a radical prostectomy. Because of the enlarged size of the prostate and the amount of cancer in the gland, the Urologist felt it was best to also take the other nerves, etc. He also does the robotic surgery but felt in my case this was the safest way to proceed.
The PSA test saved my life... MY wife and I felt my life for hopefully 25+ years was more important than the erection for another 5 years. In my opinion the men that are angry need to grow up or else they have a penis for a brain. And yes my wife and I had a very good sex life for 37 years but the sacrifice was worth the gain of a longer life.

[JohnMac]

I cannot understand why anyone would have treatments for prostate cancer just on the basis of PSA. My PSA has run high for years, about 6 or 7 and I have very large prostate. A few months ago it went 12 and then in next PSA was 9. My doctor said I might have biopsy but up to me. ( I am 79.) I decided to have it and he did very thorough one, a dozen or more tissue samples, and there was no sign of cancer. He said at my age even if I had prostate cancer best to ignore it since something else is going to get me first.

[richard snyder]

thanks for the nfo. I am 79 and a psa of 1.5. My urologist says that should be doubled since I am on avodart. I was unable to take Proscar. My prostate weighed 102 grams prior to avodart. It is down to 82 and any further medication doesen't seem to have any further reduction.

[A. Camisso]

I am sorry if I am missing something. I thought that a PSA test with worrisome
results would lead to a biopsy, not to a prostatectomy or other treatment.
It is my understanding that the results of a biopsy and the Gleason score
from such results if positive, would then lead to a discussion of choices of
treatment.
I have been having PSA tests annually for several years. My PSA readings
have been all over the map, going as high as 12, leading to 3 sets of biopsies
all of which have proven negative thankfully.
I am now taking Proscar and it seems to have shrunk my prostate. The usual
symptoms have diminished considerably and my PSA reading is now down to a steady 3.
My urologist refers to the results of Proscar on my BPH condition as "one more piece of the puzzle".

[Sonarman]

I'm wrestle with Prostate Cancer treatment options. At age 58, a rise in PSA from 2.1 to 3.2 in a year (50%+), triggered recommendations for ever more probing tests until a 12 needle biopsy revealed the dreaded diagnosis of Prostate Cancer (Gleasen score (3+3 = 6) and T1C tumor grade). The Urologist termed the next step "a no brainer", from his perspective a radical prostatectomy.

Avid reader that I am, I became quickly unconvinced. Consulting a leading robotic surgeon, and an esteemed radiation oncologist I became no more sold on the concept of either treatment regime. Seven months later, I am continuing a course of "watchful waiting", while pursuing a radical lifestyle change based on macrobiotic principals and diet (read Roger Mason's Zen Macrobiotics for Americans). Coincidental to that, my PSA has dropped significantly. That said, I become more and more convinced that PSA testing is seriously flawed as a reliable marker for PC. I've had one recent DRE (digital rectal exam) to be on the safe side, with good result, and will again at 6 month intervals. But doubt I'll sign up for another invasive biopsy. I dropped all of my excess weight, and am quite lean, weighing what I did at 25. I have a sense that inflamation throughout my body, including in my prostate is much reduced as result of this regime.

Annual PSA testing helped ID the presence of PC in me. It has led me to take action, but to pursue the road less traveled. Knowledge of the presence of PC is one thing. Deciding what to do or not to do about it is the real dilemma.

[Patrick Dooley]

I'm in the middle of deciding what to do. I'm 59 and the doctors found a very small amount of cancer after doing a biopsy because my PSA was 7.2. 32,000 is a small number compared to millions of people that die each year and I get the idea that the tests reduce that number even in my case. I was going to wait and see. Now I'm more concerned that the biopsy might have help spread the dam thing.

Peace

[Steven Walker]

Mr. Camisso is of course correct. An elevated PSA reading is the beginning of a process of diagnosis and consultation, not an indicator that surgey or radiation should automatically follow. All oncologists know, or should know, that PSA is not a 100 percent definitive biomarker for prostate cancer, nor should it lead immediately to a decision for treatment. The idea that a chronological age can be used as a cutoff for deciding whether a man should be screened for prostate cancer is beyond stupid. It is a subjective, nonsensical, statistical artifact based on an imperfect analysis of population-based data that is helpful to no individual patient.

The decision to get a PSA test, and what to do with the results, should be left to the patient and his doctor. The question, quite clearly, isn't whether the test can save and extend lives (it can and often does), but rather one of physician education and a clear and rational discussion of potential risk versus potential benefit between a patient and his doctor, followed by a decision on what to do about the result - which could and sometimes should be nothing more than keeping an eye on it.

These same arguments have been made against breast self exams and mammograms to allow early diagnosis of breast cancer, by the same types of blinder-wearing physician statisticans. Thankfully, their misguided advice was not adopted. Now, almost exclusively because of early detection from self-exams and mammograms, breast cancer cure rates are way, way up, but only for those whose disease is caught early. Metastatic breast cancer remains highly lethal. Ask those women (the ones who are still alive) if they wished they had somehow caught their cancer early enough to survive it. But you can't ask most of them, because they are dead.

Good doctors know how to advise unhealthy 75 year old men (or any other age for that matter) with co-morbidities more likely to kill them than their emerging prostate cancer, but what should they say to a 75 year old that runs marathons and is in the physical condition of a man 20 years younger, that they shouldn't have the test because they are 75, or 76?

Any medical advice produced by physician statisticians (and that is where this nonsense came from) should be taken with a ton of salt, and often it should simply be ignored.

All men should talk to their doctors and decide for themselves whether they want the PSA test. That decision certainly should not be left to a panel of narrow-minded physician-statisticians who know nothing about you and never will, and it certainly should not be tied to a chronological age.

When considering the wisdom of this post, ask yourself - when was the last time you opened the yellow pages looking for a statistician to help you with anything? Likely, never. There is a reason for that.

[Daniel J. Goldstone]

I was diagnoised May 2005 of advanced prostate cancer , with a PSA 23.5 and a Gleason of 7, all 12 cores of the biopsy had cancer, 2 up to 75%. I chose short form hormone therapy, 3 month only and radiation. Nine months after my treatment my cancer was back. I discovered a holistic recipe that has lowered my PSA 6 consecutive blood tests over a 20 month period. Today my PSA is lower than it was in January 2006, right after treatment. I wrote a book about my expierences and my holistic approach. The name of the book is Advanced Prostate Cancer and ME. According to WEB MD there is no cure for advanced prostate cancer. Therefore it was a logical choice to think outside the box. Today my numbers are PSA 0.55, Testosterine 576

[GHS]

The problem with a PSA test is that an elevated PSA leads to a Biopsy. Once the Biopsy results are pronounced "positive" for Cancer you are swept up in a ongoing wave of "cure" scenarios. The question of whether or not this cancer will ever kill me is rarely addressed. A lot of people will never question their doctors and rush into an unnessary treatment regime sometimes leaving the patient damaged. This is the point. Not whether or not to have a PSA test. More people need to learn to question their doctors and investigate for themselves different treatment options. There is no question that the PSA test has led to overtreatment. However, each patient needs to take responsiblilty for making his or her own decisions based on information they can easily obtain from a lot of different sources. The point is, educate yourself. Then make your OWN decision.

[Tom Pincu]

I'm 74 and have checkups every 6 months. I'm ok and clear as of this writing.
I have friends who have undergone removal of their prostates when cancer was detected and confined to their prostates and suffered no ill effects. The success of the operation depends on the skill of the urologist who does the work. It pays to look around for a highly experienced surgeon with a high success rate.

[Rebecca Cody]

It is my understanding from other reading that the problem with the PSA is that it is unreliable as a predictor of cancer. That is why those who originally promoted it have changed their minds.

While Proscar and Avodart lower DHT, which is a procarcinogen, what the drug ads don't tell you is that they also lower the balancing natural anticacrinogen even further. So, while they seem to help at first, they set the stage for prostate cancer down the road.

The only real answers to prostate cancer have to do with diet and lifestyle changes and working with a doctor who understands how to balance male hormones using bioidentical hormome therapies instead of prescription drugs. All this is well documented in respected medical journals.

[DCB]

As a recently diagnosed 60 year old based on slightly elevated PSA followed by positive biopsy, I will probably opt for treatment but am somewhat wishing I never had a PSA test. The statistical evidence is clear - close to 25 men treated needlessly to save 1 life. Lifetime detection is approaching 20% and mortality stays close to 3%. Some aggressive cancers even when caught early still progress, so the mortality rate will probably not decline much in the future. Suggested lowering of the PSA threshold to 2.5 will detect even more cancers. In the absence of definitive criteria to discriminate between aggressive and indolent cancers, the PSA/subsequent biopsies border on irresponsible procedures. Information is not without consequences - either good or bad. The question raised by this group and film is whether the negatives outweight the positives, and whether men should know more before they agree to the test. I think a somewhat similar future situation may arise with respect to genetic testing. If risks are identified, then what? Getting back to my opening statement, I will probably choose treatment because now I know I have cancer. Otherwise I may have found out I had cancer later in life due to DRE or other symptoms, and my odds for survival may have been less, but I would have been taking a chance on not being in the 3% rather than not being in the 20%.

[harry]

I am 63 year old who just received his annual PSA results. My PSA has risen from 1.59 last year to 2.13 this year. I am worried to death. My doctor's office called in the lab results on Friday and the message said in part, "your PSA is normal, but the doctor suggests you might want to call your urologist to discuss the increase." My baseline PSA was .60 13 years ago and has not always risen at a steady pace. There have been several years when it increased as much as .35 in a year, but declined the following year. This is the largest one year increase.

I am going in tomorrow for my physical with my internist and to discuss next steps. I will try to get appointment with my urologist ASAP. I assume he will do another DRE and try to determine if there may be other reasons for the increase. He will probably put me on antibiotics and have me return for another PSA in 4-6 weeks. I have been dreading this day, which I knew would come sooner or later, ever since I began having the PSA test. Before PSA tests were so common, men had to wait for symptoms or the DRE suggested followup. Now many of us know much earlier that something is wrong, we just don't know what. Part of me wishes that I had never started the PSA testing. On the other hand, my father who is 87 now would probably not be here if he had not insisted 12 years ago that his doctor give him a PSA test. His DRE was fine, the doctor said, but my dad insisted. His PSA was 26 and he had cancer. Fortunately, his was localized and his PSA has been zero since the operation. He has had leakage problems since the operation and still must wear a kotex in his underwear. I never asked him about his sex life after the operation. He was 75, so maybe it didn't matter that much to him.

I hope that if it turns out that I have cancer and it is low grade and probably not too agressive that I will not rush to have it cut out. That I will watch and wait by having PSA tests every 3 months and a biopsy every year if necessary to avoid the collateral damage as long as possible.

[confused]

First off, I can't believe in this day and age there isn't a more clear cut way of diagnosing prostate cancer. What are they doing with all the cancer research monies? My husband and I are going through this same mess. He had a PSA reading of 5.29, recently and last, and 3 more within a 2 month period prior, that were still 5. something. (I do have the paperwork, just didn't get it out, the readings are so close.) His free PSA is 25. The urologist wants to go immediately to biopsey but my husband told him he had to have some time. He builds houses and needs to finish the one he is on and is also not sure he wants to go this route with all the info. out there. He also said he wished he had never had the first PSA. He is worried that if he lets them do, what sounds like butchering, to us that it would not really be necessary, but also worries about ignoring something called cancer, if it indeed turns out that way. As some on here have stated, once it is found, they are going to want to treat it, one way or the other, and it may not be necessary. He is 57 by the way and has never, until now, had a PSA. He is also slightly over weight and we do eat a high fat diet, which I have read can cause the high PSA reading. (The diet not the overweight necessarily. ) We are normally healthy people who do not go to doctors unecessarily. In fact they scare us. So many people we know were doing better before they were put on 15 medications, then after. His DRE was fine and the Dr. said his prostate did not feel swollen, he has taken the antibiotics, but his results were all in the same neighborhood. Right now he is looking at having another PSA in 3 months, getting a second opinion at the same time. Mainly because the Dr. we used is not on our 'preferred' list with the insurance co., which is another matter entirely. Being self-employed, it has a high deductible and will probably put us in the poor house. Needless to say, if we didn't have any insurance at all, if we knew it was 'do or die', we would do, but......We have also discussed haveing the prostate removed to try to 'be done with it' if cancer is there, as someone else on here said, because nature will takes its course before too much longer anyway. I would rather have him alive, but I also know it is a hard thing for a man to do. I know you guys can't really help us make a decision, I just wanted to add our frustration to the list. Thanks for the site! Any comments will be greatly appreciated.

[confused]

I don't see my comments posted yet, but, I need to add that my husbands testosterone level was low and his platelet count was a 'little' high, 140 - 440 being the preferance range, his was 451. Looks like the testosterone level should directly affect the PSA.

[Luigi]

A voice from Europe.
My father was "diagnosed" with prostate cancer at the age of 73. They made a rectal exam because he complained about symptoms from BPH. We never saw the biopsy results. His friends (professors from the faculty of medicine of a nearby city) told him he should be immediately treated or he would die. He had orchiectomy, radiation and antiandrogen cure for 15 years. To make it short: he is now 98, nice age obviously, but he has been living as a eunuch of imperial China for all this time, his character has become a disaster, crying like a teen-ager girl (sorry for the comparison) all the time for any reason, whether happiness or sorrow. He has definitely been overtreated and this has had a devastating effect on us all.
I am now 52 and a couple of weeks ago my doctor suggested making a PSA test. I have refused. I will NOT try to detect prostate cancer on myself. I will NOT undergo such devastating therapies. It is MY body and MY life. If it is my destiny I prefer to die young and not live a facsimile of life.

[Alan MacKenzie]

Comment from Australia.
My PSA Dec. 5th was 133. That's right the decimal place has not been omitted My PSA is one hundred and thirty three. I have had no medication since April this year and I refuse to start up again.
I believe I have no cancer cells. My first encounter was in 1995 a biopsy said prostate cancer was evident which subsequently led to radiation treatment.
My PSA stayed so called 'normal' for 7 years then in 2002 I was diagnosed with Colon Cancer and my PSA had risen to 13. The ascending colon was removed and I was told that the Prostate cancer was terminal.
In 2004 I was told I would not live past 2007. During this period I used watchful waiting ie I took medication to lower the PSA then regained normality for a few months then returned to medication when needed.
My quality of life since April this year without medication has been so wonderful there is no way I will entertain the thought of medication.
Even with a PSA of 133 I feel so happy and healthy.
My next PSA test will happen early February 2009 out of interest sake only.
I shall return.
I would like to prove that PSA tests are meaningless.
Macca from Aus.