What Rudy–and Most Americans–Still Don’t Understand about Prostate Cancer

Presidential candidate Rudy Giuliani recently made the mistake of trying to turn his brush with prostate cancer into a campaign issue: “I had prostate cancer, five, six years ago. My chance of surviving prostate cancer, and thank God I was cured of it, in the United States, [is] 82 percent. My chances of surviving prostate cancer in England, [is] only 44 percent under socialized medicine,” Giuliani declared.

Rudy, of course, was wrong.

Merrill Goozner has done the best job that I’ve see of cutting through to the truth of the matter. In a Nov. 2  post titled “Columnists Miss Chance to Educate on PSA Testing,” he points out that “Paul Krugman’s column in the New York Times and Eugene Robinson’s column in the Washington Post justifiably attack Rudy Giuliani’s misuse of prostate cancer stats, all but accusing him of lying.

“Krugman begs political reporters to make the Republicans’ false
attacks on Democratic health care plans as ‘socialized medicine’ as big
an issue as Clinton’s laugh or Edwards’ hair,” Goozner observes, and he
quotes Krugman explaining that the difference between survival rates in
the U.S. and the U.K. “turns out to be mainly a statistical illusion.
The details are technical, but the bottom line is that a man’s chance
of dying from prostate cancer is about the same in Britain as it is in

“That’s fine as far as it goes,” says Goozner.

But he wishes that the columnists had gone on to tell their readers that “thousands of American men are incorrectly diagnosed with prostate cancer each year.
The prostate specific antigen (PSA) test has a very high false positive
rate, identifying ‘tumors’ that will never threaten patients’ lives or
well-being. Moreover, to ‘survive’ that non-cancer, they are
subjected to needless treatments—costly operations, drugs, and/or
radiation—that leaves many of them impotent and incontinent.
[my emphasis]
Merrill is absolutely right. 

I wrote about prostate cancer when I started this blog back in August.  but since most of you were not reading HealthBeat then, let me briefly recap what I said.

First, the PSA test we use to screen for prostate cancer isn’t very
good.  The biopsy which follows (if the PSA test proves positive) is
better, but it still doesn’t tell the doctor whether this early-stage
cancer will progress.

What’s tricky about prostate cancer is that it grows very, very
slowly—so slowly that most men who have early-stage prostate cancer
will never experience symptoms. Nevertheless, until recently, men over
the age of 50 were routinely sent for PSA testing.  Indeed, two-thirds
of all men on Medicare have been screened for the disease.  And because
we do so much more testing than the U.K. we find more cancer earlier.
If testing continues at the current rate, 20% of American men will be
diagnosed with prostate cancer at some time in their lives. Yet most of
those men don’t need treatment.
Only three out of twenty will die of
the disease; the other 17 will die of something else, in most cases
long before the prostate cancer ever gives them any trouble. If they
hadn’t been tested, they wouldn’t even know they had it.

Meanwhile, men who are diagnosed have three options: surgery, some form
of radiation therapy or “watchful waiting”—which means that the
urologist doesn’t treat the cancer, but keeps an eye on it in the years
that follow, to see if it grows. Usually, it doesn’t.

Nevertheless, the majority of men choose surgery or radiation because
they feel that they must do something. The idea of watching and waiting
is just too stressful. Thus, what Dartmouth’s Dr. H. Gilbert Welch has
called an “epidemic” of diagnoses of very small cancers leads to an
“epidemic” of (sometimes harmful) treatments. In the case of prostate
cancer, as Merrill notes, the treatments can have life-changing
side-effects: namely impotence and/or incontinence. Moreover—and this
is almost unbelievable—we have no evidence that any of the treatments
for early-stage prostate cancer save lives, or even extend life by one

I’m sure Rudy wouldn’t believe me. He is convinced that his treatment
“cured” him. But the National Cancer Institute isn’t so sure. In June,
the Institute spelled out its position: “Screening tests are able to
detect prostate cancer at an early stage, but it is not clear whether
this earlier detection and consequent earlier treatment leads to any
change in the natural history and outcome of the disease."

The American Cancer Society agrees. That’s why the ACS no longer recommends PSA testing. As the Society puts it in its 2007 review of guidelines
for cancer screening, "because the current evidence about the value of
testing for early prostate cancer detection is insufficient to
recommend that average-risk men undergo regular screening,” it would be
“inappropriate” for a doctor to recommend PSA testing. Hedging its
bets, the ACS also says that it would be “inappropriate” for a
physician to discourage PSA testing. Instead, doctors should “offer”
the test to men beginning at age 50, and then discuss the “potential
benefits, limitations and harms associated with testing.”

Admittedly, the patient who suffers from prostate cancer faces some
tough choices. We don’t know for sure that the treatments we have don’t
help—but we don’t have any solid evidence that they do.  Skeptics point
out that if early detection and treatment saved lives, one would expect
that the mortality rate (or deaths per 100,000 in the population) would
have plummeted in the twenty years since the PSA test was developed.
But the number of men who die of prostate cancer has fallen by only a
modest amount.

Moreover, researchers are not certain that PSA testing and subsequent
treatment has caused the slide; multiple factors could be involved. We
need controlled, randomized clinical trials, they say, before we can
measure the benefits of any of the treatments. But because prostate
cancer usually moves so slowly, a trial must follow patients for
decades. In 1993, the National Cancer Institute began a 23-year trial
that it projects will end in 2016.

In the meantime, Merrill Goozner suggests that “Americans need to hear
the message that many aspects of our vaunted ‘best health care system
in the world’ are wasteful when not downright harmful.” He wishes that
columnists in the mainstream media like Krugman and Robinson would help
spread the word, proposing “a column that begins by begging readers to
bear with [the columnist] as he explains the technical reasons” why
five-year survival rates in the U.S. are not significantly better than
five-year-survival rates in the U.K. (In the U.S., if a man is tested
every year beginning at age 50, the cancer might be discovered at 62.
If he died of the cancer at 70, he would have survived more than five
years. If the same individual lived in the U.K., the cancer might not
be caught until he was 67; if he died at 70 he would not have survived
five years. But either way, he would be dead at 70).

Goozner goes on to suggest that the columnist could then make the
argument against consumer-driven care, by “using the ‘complexity’ of
this one example to show why forcing ‘consumers’ to understand all this
on every medical situation they may face is a completely unrealistic
approach to holding down health care costs. What we need is an unbiased
comparative effectiveness institute…to generate these analyses, and
then pay primary care doctors enough money to help their patients
understand these choices.

“Instead,” Goozner reminds us, “what we have is fee-for-service
medicine where the specialist doctors who operate, chemically castrate
and radiate make the big bucks; many men needlessly suffer; and our
health care outcomes in terms of survival are no better than Great
Britain, where they spend 41 percent of what we do on health.”

16 thoughts on “What Rudy–and Most Americans–Still Don’t Understand about Prostate Cancer

  1. Gregory D. Pawelski e-mailed me with the comment on Prostate cancer– mm
    Prostate cancer is a black hole. The problem is PSA (prostate specific antigen) testing.
    Yes, prostate cancer is common. Wouldn’t surprise me one bit to learn I have a few prostate cancer cells lurking within me.
    Would I get a radical prostatectomy were this diagnosed? No. Would I get radiotherapy? Probably not.
    This is interesting, the prostate gland is unnecessary for life and is generally removed or destroyed with radiation therapy in patients with prostate cancer. This effectively deals with the localized prostate cancer, although the risk of serious side effects from therapy remains a big problem.
    Prostate-specific proteins are not required for cancer cells to engage in malignant behavior. Prostate-specific proteins evolved to carry out functions important to the sexual reproduction of the human body. To cancer cells, prostate-specific proteins are unnecessary baggage.
    PSA testing is a bonanza for urologists. Lots more prostate cancer gets diagnosed. They get to do lots more radical prostatectomies. Urologists are adamant about recommending procedures that they themselves do.
    The well-known phenomenon of “lead bias” may account for why a lot of earlier diagnoses provide misleadingly improved statistics, and are not really related either to treatment or to diagnosis. Prostate cancer is the best example of this. Breast cancer may be another example.
    Improvements in overall survival for all patients are owing largely to a marked trend for earlier diagnosis and surgical technique. Even this doesn’t mean that many more patients are being cured. If you diagnose someone earlier in the course of disease, of course they’ll live long from the time of diagnosis. This is wha’t known as “lead bias.”
    I am a believer in the efficacy of some types of screening procedures, like colonoscopies. Many adenomatous polyps have been found and removed during this procedure. By not having those polyps removed, it is very likely that one would have developed colon cancer along the way.
    However, I refuse to have a PSA done on a screening basis, because I’m not convinced of the value of radical prostatectomy and because numerous men happily coexist with prostate cancer and die of something else, like old age.
    Many men with prostate cancer will never have symptoms or illness from their disease. Prostate cancer is an unpredictable, stochastic, evolutionary process. It is unknowable if early-stage prostate cancer will progress and cause clinical disease in a given patient.
    I would want to see results of a prospective, randomized trial showing actual survival advantages (as well as a comparison of the cost in terms of treatment associated morbidity) before subjecting myself to the test and the possibility of then getting directed to biopsies and then getting directed to radical prostatectomy without any clear indication that this was in my advantage.
    There is an interesting clinical trial proposal for a minimally-invasive treatment for the “cure” of localized early-stage prostate cancer that would avoid the serious side effects of all current treatment approaches.
    Inject into the prostate gland a set of drugs that permanently prevent all the prostate cells from dividing. The drugs would not kill the cells. The drugs would not cause extensive damage to the prostate gland. But any cancer cells would be prevented from ever dividing, and new prostate cancer cells would be prevented from ever evolving.
    As an added bonus, the treatment would likely prevent benign prostatic hypertrophy, a condition that affects older men and causes difficulties in passing urine. The proposed approach would be no more invasive than having needle biopsies of the prostate gland. Hopefull, we shall see.

  2. There are many problems with prostate cancer diagnosis with PSA as outlined above. However, it is clear that since PSA testing has been used prostate cancers in general have been diagnosed earlier and fewer patients are dying of the disease.
    This does not obviate the fact that many people have cancers that are inherently benign and never progress. We just don’t know how to identify those patients. So using the broad brush all are treated in our system as if they will have the bad disease. The motivation for this is complex and includes patient choice–who wants to leave a cancer untreated?; physician greed; malpractice pressures–and don’t underestimate this one; etc.
    Interestingly there is a similar situation in breast cancer where mammorgraphy has many false positives and many of the insitu carcinomas that are treated with lumpectomy and radiation are inherently benign with little risk of progression. The same problem exists in this disease that we just don’t know who will progress and thus treat all as if it were an invasive cancer.
    In any case I certainly agree that Giuliani has no clue about prostate cancer statistics and of course believes that whatever he did and was advised to do saved his life. Most patients have the same reaction.

  3. Gregory and Cycledoc–
    Essentially I agree with both of you.
    Cycledoc–though I have to say that the reduction in mortalities since widespread screening is not that impressive. It is true that 5-year survival rates have improved, but as I explain in the post, if you’re diagnosed earlier you’re more likely to survive 5 years.
    But I entirely agree with your main point: because we don’t know which cancers are benign, patients are treated with a “broad brush.”
    And I completely agree that some doctors treat because they are afraid of malpractice suits. (Though the state of WAshington recently passed legislation saying that if doctors went through the “shared decison-making” process with a patient they would be protected against lawsuits. See my post on “Shared Decison-Making”–it’s the last post on the list in the left margin–or go to October archives by scrolling down on the left)
    What I don’t understand is why so many men feel that they must treat the cancer–and why doctors can’t persuade them that “watchful waiting” would be a more sensible response.
    Certainly, if I were diagnosed with breast cancer, and told that chances were 17 out of 20 that this woulld never bother me, I would jump at the chance to just go in for regular check-ups rather than going through radiation or surgery.
    Maybe this is a difference between men and women??
    It is very interesting that the prostate is not necessary for life. (In this, it is like the tonsil, which also became the target of widespread unncessary treatment.)
    And, as you say, from the point of view of cancer cells, prostate-specific proteins are unnecessary baggage.
    Unfortunately, as you point out, prostate cancer testing and treatment is a “bonanza” for urologists. This is the only professional group that now recommends PSA testing (unlike the ACS and NCI).
    The new treatment you describe sounds interesting . . . Is it in trials?
    And you are right about mammograms. Though they do save lives, the reduced risk is much less than most of us would think . . . Of course if you happen to be that one woman who is saved . . .
    On the other hand, Pap smears for cervical cancer have turned it into a rare disease.

  4. 1. Statements that prostate cancer “grows very, very slowly” assume that prostate cancer comes in only one “flavor” when there is ample evidence that there are in fact many varieties of prostate cancer, some of which are anything but slow growing. Dr. Donald Coffee (a prostate cancer researcher) claimed in an address that he had seen 4 distinct prostate cancer cell variants in *one* (1) biopsy core. He further stated that at that time (2000) there were about 27 identified prostate cancer strains and he personally would not be surprised if that number doubled over the years.
    2. The allegation that the PSA test is so flawed as to be useless in screening for prostate cancer ignores that the test is really only a flag alerting competent doctors to seek the reason behind the elevated PSA. The process then would be a thorough differential diagnosis in the hands of competent doctor. Unfortunately, there are too many doctors looking for quick answers and swift action, resulting in sometimes inappropriate treatments. One might even suspect that there is a monetary motivation in play.
    3. The prostate cancer cell types range from those that express PSA copiously to those that barely express PSA at all. There are acknowledged cases of men diagnosed and dead within one or two years that never have a PSA result that reaches 3. Generally such cases are in young men (under 40) from families with multiple prostate cancer cases.
    4. Claiming that the prostate cancer specific mortality rate has declined only “a modest amount”in the 20 years since the advent of the PSA test ignores the SEER mortality findings. From the 1991 mortality rate of 39.3 per 100,000 to the 2004 mortality rate of 25.4 per 100,000 is a decline of 35.4% — hardly the insignificant reduction claimed. Even some of the long time naysayers are now grudgingly saying that perhaps the screening, early detection, and improved treatments are behind this dramatic reduction of the US prostate cancer specific mortality rate.
    The flaw in the screening and diagnosis of prostate cancer, IMO, lies with lazy and less than competent and knowledgeable doctors not the lack of good testing the find and define the prostate cancer threat.

  5. Yes, there are many varieties of prostate cancer. Primary tumors are highly heterogeneous that each cell within it is likely to have a unique genomic signature.
    The problem with the PSA test is that although it does detect prostate cancer through a fairly simple and routine blood test, it nonetheless is not particularly specific for prostate cancer.
    That means that it frequently picks up other prostate conditions such as benign, or non-cancerous, enlargement of the gland, and lead to unnecessary biopsies and even treatment with all its attendant risks of impotence and incontinence, for a cancer that might have grown so slowly that it didn’t need immediate attention.
    Sometimes, screening tests may pick up minute tumors that would not progress and might even go away if left alone (pseudodisease). Patients may be alarmed and exposed, perhaps needlessly, to the risks of treatment. There are microscopic cancers that will never cause us problems. Pseudodisease is most common in prostate and breast cancer, and is an issue for kidney cancer, melanoma and lung cancer. When cancer is looked for early, a wide net is cast for both real and pseudodisease.
    Another issue with the PSA test is what is normal and what is abnormal in terms of the PSA level in the blood. We used to say that a PSA value on the blood test that was less than 4 was OK. More recent research suggests that even lower levels can be associated with prostate cancer. When assessing a “normal” PSA, the doctor should be considering the age of the patient and the change in the PSA value over time (PSA velocity).
    If a young man, someone in their 40s or early 50s, has a PSA of 2, that may be abnormal, while a PSA slightly over 4 in an 80 year old man may not be of much concern. Or, if a man has a PSA of 0.7 one year and 2.0 the next year, his doctor should have heightened concern that prostate cancer may be present, and the man should be further evaluated, even though the PSA value is less than the “normal” 4.0 cutoff point.
    Earlier in the year, an article in an issue of Urology, reported information about a prostate cancer protein found in the blood called EPCA-2. The researchers at Johns Hopkins demonstrated that this new marker appears to be more sensitive and specific in detecting prostate cancer compared to the PSA test. It supposidly is more accurate in diagnosing prostate cancer, and also distinguishes whether it is in an early stage or more advanced stage.
    Could this new test help to detect those men who actually have prostate cancer, as opposed to doing further investigations and evaluations on men who don’t have prostate cancer? Like the clinical trial proposal for a minimally-invasive treatment, hopefully, we shall see.

  6. Been out of town for a few days, so forgive me for getting to this late. Thanks for using my posting to lead off this discussion, which I found enlightening and useful. I think it proves my point that a discerning columnist making a few quick phone calls could a) easily understand the issues; and b) distill it down in a way that the public can easily understand. What we have now, though, is all us experts knowing the details, a public that lives in the dark, and many urologists ignoring the guidelines.

  7. Rick and Greg–
    Thanks for your comments.
    First on whether PSA testing reduces mortality:
    As you no doubt know, there is no evidence that PSA testing reduces the likelihood of dying of prostate cancer. While mortalities have gone down in recent years (after going up sharply), this is in part (very likely in large part) because we are diagnosing so many more men of those minute turmos that Greg talks about
    Those who are diagnosed through PSA testing are more likely to be suffering from “pseudodiseases”–i.e. a disease that does not progres and will never harm them. So they are less likely to die and this means that a smaller percentage of those labeled “prostate cancer patients” die.But all you have really done is increased the pool of “prostate cancer patients.”
    At tjhis point, literature is pretty clear that any connection between PSA testing, subsequent treatment and reduced mortality is “tentative at best.”
    On the various types of prostate cancer– yes, I know that there are different “flavors” of prostaste cancer, but they do usually grow very, very slowly. That’s what men need to know when deciding whether or not to pursue “watchful waiting.”
    The fact that “There are acknowledged cases of men diagnosed and dead within one or two years that never have a PSA result that reaches 3,” is useful only if you have information about how to detect and slow those cancers. Otherwise this is one of those statements that adds to the general fear of cancer without doing any good. In addition,those cases are, as you know, extremely rare.
    The PSA test is not a very good test for the reasons Greg discusses. It has been described as a net that is too large (so it captures many false positives) with holes in it (so it lets false negatives slip through.)
    This is why the US Preventive Services Task Force along with the American College of Physicians, the American Academy of Family Physicians, the National Cancer Institute and the American Cancer Society do not recommend PSA screening.
    Unfortunately, even very “competent” doctors are not able to tell whether a patient’s prostate cancer will progress. It is more likely to progress if the patient is African-American or if he has close relative who has died of prostate cancer. That’s about all we know.
    To blame “lazy or incompetent” doctors for either overtreatment or needless prostate cancer deaths suggests that you have a method for picking out fatal cancers. . .
    I do think that the financial incentive may encourage overtreatment, but I also think that many patients are in a rush to be “cured.”

  8. I have read with interest the blog on PCa and find most of what has been written as warmed over opinion and some of it inaccurate.
    As a survivor and Vice President of the National Alliance of State Prostate Cancer Coalitions, I (we) take the position that while testing for PSA is not perfect, it is a first step in determining the existence of prostate cancer.
    To say that urologists may benefit financially from use of the test is ingenuous. The same can be said of all medical tests as well. And while there is some truth to saying that testing is done to avoid lawsuits, that does not undermine their value. More importantly, while these explanations may be valid, they do not obviate nor should they be used as an excuse for not testing.
    Good medicine cannot be left to medical professionals. The patient not only has a role but more importantly, a responsibility for his care. He needs to do some due diligence before any treatment, irrespective of the disease, is undertaken. A knowledgeable patient/consumer should be a medical axiom.
    Beating up on PSA testing is a diversion. It is, quite simply – with all its flaws – a first step in the diagnostic chain. Focus on it alone, pro of con, is misleading. Biopsies, tomographies and other tools are available to verify PCA existence and virulence.
    As a mentor to men who have been told they have PCa and a board member of the Prostate Cancer Support Association of New Mexico, I (we) try to get to men before they are treated to help them through the process that may lead to treatment since this is a scary and pretty complicated venture. Overcoming the rush to decision is often our biggest hurdle.
    Much is made of the notion that PCa is slow-growing. While in some cases it is. in others it takes a life within a matter of months. To harp on its being slow-growing is to further lull men into putting off further diagnostic verification, a bromide akin to “it’s and old man’s disease” and “you’ll die of something else.” Maybe, maybe not. But medicine does not rely on maybes; it relies on available science and facts.
    Incidentally, PCa rarely displays any overt symptoms and when it does, it has usually progressed to an advanced stage. That’s what makes it so insidious.
    I would point out that there are more than three treatment options (surgery, radiation and “watchful waiting) open to men. What’s missing here are chemicals which have been effective in delaying and in some cases halting the advance of PCa.
    I would urge anyone who has witnessed the consequence of metastasis of PCA and the painfully ugly death which results rethink some of the information put out on this blog.
    The National Alliance believes that men who have a family history of PCa should be first tested at age 35, otherwise at age 40, this to establish a baseline. If the test is positive, then additional tests should be undertaken before treatment is initiated.
    The National Alliance does not agree with NCI, ACS and CDC although we expect ACS to take another look at its current position. In our view, they have failed to prove their case for later testing because you can’t prove a negative with a negative, and that’s what their research suggests.
    Understand. the National Alliance is the only patient driven PCa advocacy organization in the nation. We are joined now by USTOO!, a non-advocacy, patient driven organization which encompasses hundreds of local PCa support groups throughout the Nation and which now urges adoption of the National Alliance’s guidelines.
    It is true that we need better statistics but as patients, we can’t wait around for statistical niceties. No need to rush to treatment but sooner is better than later. Just listen to any patient who is in the final stages of PCa because of a late diagnosis.
    And yes, there is a better assay in the offing than the PSA and the national Alliance recommends its use. But for the first line of defense, the PSA is an affordable starting point, an easy preliminary screening tool.
    Lets not drum up any more excuses for men to avoid – or neglect – their health care. They already have more than enough.

  9. Merill and Jan– thanks for responding.
    Merill wrote: “What we have now, though, is all us experts knowing the details, a public that lives in the dark, and many urologists ignoring the guidelines.”
    That pretty much sums it up.
    I would add only that I think the mainstream press may be reluctant to tell the full story because men who have been diagnosed with early-stage prostate cancer, were treated, and suffered side effects really don’t want to hear that it’s very likely they didn’t need treatment.
    It’s completely understandable that patients would feel that way. But the media still needs to warn men who haven’t been treated that, for many, “watchful waiting” could be a safer alternative.
    I agree with you about the importance of patients being involved in decisions about treatment for prostate cancer. Have you read my post on this blog about shared decision-making? There, you will find that we are on the same page.
    As to whether prostate cancer progresses slowly and whether it’s better to treat “sooner”–I was puzzled by your posituon on these points.
    Then I did a little Googling and discovered that the group that you say your group is assoicated with–Us Too!–is funded, in part, by drug-makers.
    As Us Too’s President and CEO disclosed in Dec. of 2002 at a FDA hearing: “As a matter of disclosure we do, in fact, get funding from a number of sources. One of them is AstraZeneca ”
    When patient advocacy groups take money from drug companies selling treatments, that muddies the waters and undermines the credibility fo the advocacy group.
    You offer no evidence for your opinions about how quickly or slowly prostate cancer advnances, or why early teatment is “better.”
    Finally,your comment slides from “early stage prostate cancer” to later-stage cancer as if these were the same diseases. What I am saying applies to early-stage prostrate cancer.
    If someone is experiencing symptoms and is in the later stage of the disease, treatment may or may not help, but it iscertainly understanble why a patient would want to go for it.

  10. I would like to tell a “reader’s digest” version of a PSA story from residency. My residency tried very hard to teach us EBM, we learned early that there was no evidence to support regular PSA testing, and we learned of shared decision making. One of my fellow residents recieved an email from a friend who had graduated with the same philosophy and had practiced shared decision making with a particular patient who decided against the PSA, three years later the patient transferred care, got a doc who did the PSA was diagnosed with metastatic prostate cancer. This fine young doc was sued, because the law suit is run by his insurance company they settled out of court and he has a record. (for non docs, it is the first thing every job or ins co asks you when you start “have you ever been named in or lost a med liab law suit?”)
    This particular doc abbandoned EBM to follow community standards. My class mate brought the story around to the local urologists, all of whom swore they would testify against us in such a case, at this point, my classmate also abandoned EBM for community standards.
    What is a doctor to do?

  11. Dr.Matt– The good news is that there is exactly one successful lawsuit in this country where the doctor took the patient through shared decision-making, the patient decided against PSA testing and later wound up with prostate cancer.
    This case made all of the law reviews because the decision was seen as so irrational.
    In the meantime, the state of Washington has passed legislation which says that if doctors go through the process of shared decision making (there are guidelines) for the process) the doctors’ exposure in the case of malpractice suits will be greatly reduced. (In other words, it will be very difficult to sue them.)
    It’s likely that other states will follow Washington’s example.

  12. Patients seek the advice of health care professionals regarding their treatment options and protocols. This can be complicated when there is a range of treatments with differing interpretations of the best outcome. Add to it, the failure to ensure that patients have adequate comprehension of treatment options and complications often result in negative treatment outcomes. Cases where the treatment causes more harm than the disease generally lead to debates of whether observation without intervention would have been the optimal course.
    It is the patient’s right to complete information and transparency with their medical care that is the standard of good health care practice. Patients expect to be approached with open communication, care, respect, and understanding of their health and welfare. While this may be challenging for many health care professionals, patients need to become empowered and are demanding their right to full disclosure of their medical condition and the related treatment options.
    Health care professionals need to educate patients about the patient-friendly resources designed to inform them about their condition and treatment. In other words, patients need to be educated on how to assume some responsibility for their own health care. These health and educational resources provide comprehensive and pertinent information to expand patient knowledge as well as guide in selecting treatment plans. To do less whould undermine standard of good health care practice.

  13. Gregory–
    I agree completely.
    I’ve written about the formal process of “shared-decision-making” complete with excellent videos and pamphlets that has been developed at Dartmouth here–http://dartmed.dartmouth.edu/fall07/html/choice.php
    You might find it of interest ..

  14. Indeed, the Dartmouth article is excellent! When I read the section on “reducing overtreatment,” I was reminded of chemotherapy being a “zero-sum game.”
    The concept of chemotherapy being a zero sum game in certain situations is very intriguing (e.g. metastatic breast cancer, platinum resistant ovarian cancer). You can push response rates higher with more intensive therapy, but you don’t improve survival for the group as a whole. So every month of life you gain on one patient is a month lost in other patients.
    The problem is that ineffective, aggressive chemotherapy can diminish not just the quality of life but also the quantity of life. Organ toxicity. Sepsis. Bleeding. Immunosuppression. Mutagenesis in genetically unstable tumor to more aggressive phenotypes. Perhaps mood lowering, with resultant changes in cytokines, such as IL-6. So the real challenge is to kill tumor, while avoiding as much of the above as possible. It seems obvious, but that’s not the paradigm being used. I can empathize with Dr. Eisenberg.
    The paradigm used is treatment to dose limiting effect. But the goal shouldn’t necessarily be maximum tumor kill (in situations where it’s just not possible to kill all of it). Tumor kill is probably a steep rise to steady plateau. But survival is probably like an inverted “U” curve. You want to pick the right drugs and give them in such a way as to avoid the downslope of the inverted “U.”
    There appears to be a number of patients who have had long-term survival after high dose therapy, but there are a number of patients whose tumors are responsive to chemotherapy who have had long-term remissions from standard dose chemotherapy, as well as a number who show no difference in survival when treated with standard-dose or high-dose chemotherapy.
    Does chemotherapy shorten survival of some patients, while prolonging the survival of others? You do help some patients, but for every patient helped, there’s another one you may hurt.
    You may want to reserve aggressive therapy for those patients who will derive more benefit than harm, while identifying the most promising treatment regimens for everyone. In patients with tumors very resistant to cytotoxic chemotherapy, the most promising treatments may be angiogenesis inhibitors, growth factor inhibitors, or more integrative medicine approaches.
    More emphasis should be put on matching treatment to the patient (personalized medicine), through the use of individualized pre-testing, having more respect for minimal partial response or stable disease, when it can be achieved through use of the least toxic and mutagenic drug regimens, and reserve the use of higher dose therapy or aggressive combination chemotherapy to those patients with tumor biologies most amenable to attack and destroy by these aggressive treatments.
    Patients would certainly have a better chance of success had their cancer been chemo-sensitive rather than chemo-resistant, where it is more apparent that chemotherapy improves the survival of patients, and where identifying the most effective chemotherapy would be more likely to improve survival above that achieved with “best guess” empiric chemotherapy.

  15. You say this cancer “grows very, very slowly” but this is only true for nonagressive cases. When the PSA takes a quick, accelerating rise, then we know that the “slow growth” characteristic of most cases is no longer true; and you will never catch these cases in time if you are not taking PSA tests.

  16. Nils–
    Two problems– first, you are ignoring the downside of PSA tests.
    When people are told that they have prostate cancer, many want to do something immediately–which leads to treatments that can leave them either incontinent or impotent.
    And the vast majority of those people would never have experienced any symptoms of prostate cancer–they would have died of somethig else before the prostate cancer caught up with them.
    Seoncdly, we have No Concrete Evidence than any of the current treatments for prostate cancer save lives or even lenghten life by one day.
    It’s possible that they do some good, but since this is usually such a slow-growing cancer we need very long studies to find out, and such studies have not yet been completed.
    What we do know is that patients who are diagnosed and decided to choose “watchful watiing” over treatment appear to do as well as people who choose treatment. . . .
    This is why the American Cancer Soceity and NCS no longer recommend routine PSA testing