What No One Tells You When You’re Tested for Prostate Cancer
This year, half of all American men over 50 will be screened for prostate cancer. Few think that they have a choice. In the U.S. prostate cancer kills one out of every 34 men. Little wonder that many are quick to line up for the “PSA” test which measures levels of prostate-specific antigen in the blood. Yet doctors disagree—sometimes passionately-- as to whether widespread screening does any good. In June, the National Cancer Institute made its position clear: “The evidence is insufficient to determine whether screening for prostate cancer reduces mortality . . .. 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 U.S. Preventive Services Task Force agrees. Critics of routine testing also note that the life-changing side effects of early treatment can outweigh the benefits.
On the other side of the controversy, the American Urological Association and the American Cancer Society recommend annual PSA testing beginning at age 50 for healthy men who expect to live another ten years.
Proponents of screening observe that since PSA testing was introduced in the late 1980s, the share of cancer patients who live five years after diagnosis has risen from 75 percent to 99 percent. But mortality rates can be extraordinarily misleading. Often they merely reflect the fact that a cancer is diagnosed earlier—not that screening and treatment have slowed its progress.
Imagine twin brothers with prostate cancer who each die of the disease at age 65. One is screened and diagnosed at age 55. Alarmed, the other brother refuses testing. Thus, he doesn’t realize that he has the cancer until he begins experiencing symptoms at age 63. The first brother survives 10 years after diagnosis; the second just two years. But both die at 65.
Research suggests that early detection of prostate cancer does not necessarily add a single day to a patient’s life. If early diagnosis with a PSA test worked, one would expect that the mortality rate (or deaths per 100,000 in the population) would have plummeted as more and more men are tested and treated. 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 has caused the slide in mortalities. Multiple factors could be involved. We need controlled, randomized clinical trials, they say, before we can measure the benefits of testing. But because prostate cancer usually progress very slowly, a trial must follow patients for many years. (In 1993, the National Cancer Institute began a 23-year trial it projects will end in 2016.)
In the meantime, while the benefits of screening remain uncertain, the downside is clear: an “epidemic of diagnosis” can lead to an “epidemic of over-treatment” says Dr. H. Gilbert Welch, who has spent a decade studying screening at Dartmouth Medical School.
Thanks to widespread testing about 20% of American men will be diagnosed with prostate cancer at some point in their lives. It is, in fact, a commonplace disease: autopsies reveal that 80% of men over 80 have some malignant cells. Yet because prostate cancer moves so slowly, most die of something else without ever experiencing symptoms.
If never tested, the majority will never know that they have the disease. But once diagnosed, many will feel compelled to seek treatment. And since physicians cannot tell, with any certainty, which cancers will prove fatal, many will recommend aggressive treatment. This, Gilbert warns, is the real danger: “an epidemic of diagnosis can lead to an epidemic of treatments. Not all treatments have important benefits,” he adds, “but almost all can have harms.”
In the case of prostate cancer, the side effects of treatment can change a person’s life. If a patient chooses surgery, he faces a significant chance of becoming impotent and/or incontinent. Five years after surgery 79% of patients cannot get an erection while 27% are incontinent and still need to wear absorbent pads.
A booklet titled “Treatment Choices for Prostate Cancer” that Dartmouth-Hitchcock Medical Center’s “Shared Decision Making” program gives to patients also points out that 5% suffer severe complications like heart attack stroke, or pneumonia. (These are averages; some surgeons report better results.)
Alternatively, a patient may choose external beam radiation. Here the numbers are better: five years after treatment 64 percent are impotent and just 4% are incontinent. Two percent suffer severe complications. Other, newer types of radiation (including brachytherapy which involves placing radioactive seeds in the prostate) may reduce the possibility of side effects—it’s too soon to be sure.
There is another option: to wait, watch and hope the cancer never progresses. This strategy, originally called “watchful waiting,” is now known as “active surveillance.” (“’Watchful waiting’ sounded too much like you were waiting for a bomb to explode,” one doctor observes.)
Dr. Laurence Klotz, a surgeon at the University of Toronto has been monitoring 231 patients for more than seven years. If their cancer gets worse, he treats them. Last fall, he told Bloomberg Markets magazine that about 2/3 of his patients have not needed treatment, while just three have died of the disease. Over time, Klotz estimates, about 1.5 percent of men who could have been saved by surgery or radiation but choose active surveillance instead will succumb.
It’s a small percentage—smaller than the percentage of men who suffer severe complications such as heart attack or stroke after surgery or external beam radiation. But many men still choose aggressive treatment over the wait-and-see approach, because, they say, they don’t want to walk around feeling that there is a sword hanging over their heads. They would rather risk the side effects of treatment.
Others, like Dr. David Ransohoff, a gastroenterologist and professor of medicine at UNC Chapel Hill, decide not to have a PSA test. In “Is a PSA Test Right for You?” a video that Dartmouth-Hitchock gives patients, he explains: “If the result is negative, everyone is happy. But if it’s positive, you have to face a much more complicated series of decisions. You’re going to feel compelled to consider treatment. My own decision is that this is a slippery slope I don’t want to get on.”
“If I knew that by becoming impotent and incontinent, I could prolong my life . . .” Ransohoff continues, that would make a difference. “But we don’t know that, so the tradeoff becomes more difficult.”
On the same video, a patient who tested positive and then decided on active surveillance says: “I don’t worry too much about uncertainty—that’s off in the blue somewhere.” But looking back, he adds, “I wish I had never heard of the PSA test.”
By contrast, a 70-year-old patient who tested positive and decided on surgery is happy with his choice: “I just wanted to get it over with.”
Without question, it’s a rough decision, and for African-American men, who are at greater risk of dying of prostate cancer (or younger men who watch their PSA levels rise over time) aggressive treatment may make sense.
But there are external factors driving what Welch calls the epidemic of diagnoses—factors that have little to do with patient health. “More diagnoses mean more money for drug manufacturers, hospitals, physicians and disease advocacy groups,” he explains. “Researchers, and even the disease-based organization of the National Institutes of Health, secure their stature (and financing) by promoting the detection of ''their'' disease. Medico-legal concerns also drive the epidemic. While failing to make a diagnosis can result in lawsuits, there are no corresponding penalties for overdiagnosis.”
Finally, the uncertainty about the benefits of PSA testing raises a public policy question. Should Medicare pay to test and treat asymptomatic men?
About 2/3 of Medicare recipients are now screened, with Medicare picking up the bill. If all Medicare beneficiaries were screened annually, researchers estimate that the costs for testing and treatment could easily exceed $20 billion in five to seven years.
This is a genie that probably can’t be put back into the bottle. Too many men, and too many doctors, believe that screening saves live—even if they don’t have proof. But this only underlines how, once Medicare decides to cover a test or treatment—it becomes defacto “best practice”.
Anyone interested in the larger question of what Medicare should cover—and what patients should be told before having a PSA test—may be interested in checking out my new blog, where I discuss these issues. Please return here to comment.
UPDATE, AUGUST 29: In the August 29 issue of the Journal, Cancer, the American Cancer Society Society changed its recommendation about prostate cancer,, saying that “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, the ACS recommendations emphasize shared-decision making.” The ACS goes on to say that PSA testing should be “offered” to men beginning at age 50, but not “recommended” to them. Instead doctors should discuss the “potential benefits, limitations and harms associated with testing” and then let the patient decide. (See what I say above and on my blog about Dartmouth’s shared decision-making program. This is, as I indicate on my blog, the best solution, given what we now know. ) Finally, in the August 29 issue of Cancer, the ACS says that its prostate cancer advisory committee considers it “inappropriate” for doctors either to “recommend” PSA testing or to “discourage PSA esting.” In other words, the ACS seems to acknowledging that we just don’t know whether early detection and treatment does any good
Maggie, you left out one of the vital steps in the prostate cancer detection process. Once you get a positive PSA test result, the next step is a biopsy. That is a painful process where tiny biopsy specimens, as many as a dozen are taken from the prostate. Then those are biopsied and the results evaluated and a rating, called the Gleason score is determined. That score is what drives the decision about what to do next.
In my family, my daughter's father in law, step father in law and father all had positive PSA's at about the same time. The step father in law had a Gleason score of 8, which is bad, and underwent external radiation therapy. About a year later he died from the cancer. Her father in law had a Gleason score of 6, much better, and he underwent surgery. Now, 6 months later he is doing fine. My score was 7, but for only one of the dozen biopsy specimens. I underwent external radiation therapy last summer and am now doing fine.
I don't regret my decision on what treatment to go for at all. Maybe I would be doing at least as well without the treatment, but just a slight progression in the cancer would have moved my Gleason score to 8 and I could also be much worse off now.
There are side effects to the radiation therapy, primarily the long, long period of recovering normal energy levels, but to me that is a worthwhile price to pay.
Hoppy in Sacramento
August 27, 2007 2:07 PM | Reply | Permalink
I went with a somewhat aggressive treatment (hormone blockade for one year, Iodine 131 implants, and external beam radiation) after a PSA of 15 led to a biopsy, and a Gleason of 3+4 = 7, staging of 1B-C (slight bump on surface but no evidence of escaping the capsule, many poorly differentiated cancerous cells in all four quadrants biopsied). Surgery actually seemed like an iffier proposition, given the possibility of capsule escape not close enough to zero. I was 54 years old.
I was really upset that my Kaiser physician had not ordered a PSA earlier. I believe that the 'ignorance is bliss' option should be a choice, not something imposed on one by ones physician. I preferred to know and deal with the side effects (not severe but quite noticeable for a while). I hated the energy loss during the hormone blockade, but now feel more energy than ever.
I am uncomfortable with the way this article words the information given. It could give the impression that testing is simply unnecessary, or that the diagnosis and decision-making process is simply too scary for most men, both conclusions I reject. That is not the fault of the author; I blame instead the urologists who handle the psychology of those stages ineptly.
My urologist, the head of the department, "fired" me because my wife and I asked so many questions. I was relieved to have the opportunity to leave Kaiser and go with another HMO, just so I would have more choices, even though my new urologist was more dismissive; this is because I could choose my own treatment options, without bureaucratic roadblocks.
I wish this story looked more at the broader context of health care as it happens in the US. It would help focus attention where it needs to go, rather than pose a "bliss vs terror" false choice. Again, not the author's fault; we don't seem to have a good framework for that sort of discussion yet in the US.
August 27, 2007 3:23 PM | Reply | Permalink
PSA is a notoriously unreliable biomarker.
A more reliable biomarker may be available as early as next year for detecting cancer and another later that may be able to differentiate very aggressive prostate cancers from relatively slow-growing tumors and even benign tumors.
Best, Terry
August 27, 2007 3:34 PM | Reply | Permalink
This is part of a large number of questions in life where one is forced to make choices with incomplete information. In the health area there have been similar discussions over mammograms.
It's somewhat off topic, but we are faced with similar situations in foreign affairs (what are the intentions of country X?), climate change and economic policy (should the Fed raise interest rates?).
The human race hasn't come up with a good way to handle uncertainty. There are mathematical models, but to often they are ignored in favor of emotionalism. Maybe we need some behaviorists included in policy making. It is well known, for example, that people tend to over estimate the chances of extremely rare things happening (like being killed by a terrorist) and under estimate more likely events (like being killed by an automobile).
--- Policies not Politics
Daily Landscape
August 27, 2007 3:54 PM | Reply | Permalink
To the best of my knowledge and experience, PSA testing is only a trigger leading to a biopsy, which is far more definitive.
Unlike Nils O, above, Kaiser worked out extremely well for me. They let me decide my course of treatment, giving me adequate information so I could make an intelligent decision. I had other problems that made surgery a bad choice for me, even though that was what I initially decided on. My urologist carefully discussed it with me, then made sure I didn't just defer to his judgement, but made a considered judgement of my own. Then the Radiologist repeated the same procedure, making me address all of the issues and arrive at a decision on my own. I could not have been more pleased.
Hoppy in Sacramento
August 27, 2007 5:25 PM | Reply | Permalink
Hoppy, nils_os and Terry--
First, Hoppy --you're absolutely right a high PSA reading is usually followed by a biopsy and Gleason score. (I just tend to avoid going into too much medical detail on these posts. . People who have been diagnosed with prostate cancer know about the biopsy and Gleeson; those who haven't may not be interested in the detail.)
And it sounds as if you did what was right for you--you have no regrets. That is really the point of my post: because we're not sure what is the "right choice," for everyone, it's extremely important that the patient's own experience (you had known someone who died of prostate cancer), priorities, preferences and situation (your high Gleason score) should play a major role in the decision-making process. Finally, I'm glad you're well!
nil_o--- I agree with virtually everything you're saying. I definitely don't think that "testing is simply unnecessary, or that the diagnosis and decision-making process is simply too scary for most men."
But I do think that it is an individual decision --and that men should be fully informed about the pros and cons, and then given a choice. I think you were very wise to leave a doctor who hadn't talked to you at all about PSA testing (not to mention the risks and benefits) so that you could decide.
Patients who are "fired" by their doctors because they ask too many questions about a potentially fatal disease are lucky. They need a new doctor.
In terms of the broader context of healthcare in the U.S., I suspect you would find my post (today on this topic on my own blog much more satisfying. See http://www.healthbeatblog.org/
Terry-- Yes, the PSA test is far from perfect. It has been described as an overly large net with too many holes. On the one hand, it diagnoses too many patients with prostate cancer who, in fact, don't have it (false positives) and at the same time, misses patients who do (fallse negatives).
August 27, 2007 5:26 PM | Reply | Permalink
No , no and again no. It is indefensible to
frighten people away from this procedure which at the very least produces information and which arguably(at least by me) could save their lives .Having undergone this at least three ,probably more , times there was only one time worth evaluating against that criterion .
During the exploratory session , lying on my side with my ass available for
the camera I heard the urologist call in his
(astonishingly beautiful) technician for -I assumed- a medical reason .
Slightly embarrasing , but get over it.
The lights were down to facilitate the screening.
"Stop that" said the a.b.t.
"I told you , take your hand off my knee".
None of which could be desribed as a "painful process" except for the a.b.t.
Or possibly for my former urologist's accountant
August 27, 2007 6:49 PM | Reply | Permalink
Maggie, I just want to compliment you on this elegant explanation:
Imagine twin brothers with prostate cancer who each die of the disease at age 65. One is screened and diagnosed at age 55. Alarmed, the other brother refuses testing. Thus, he doesn’t realize that he has the cancer until he begins experiencing symptoms at age 63. The first brother survives 10 years after diagnosis; the second just two years. But both die at 65.
I have never seen this topic expressed in a more reader-friendly way. These issues are so hard to understand, and anything about cancer causes such fear that people tend to look at 10-year survival as opposed to a lower one without looking at the way they are presented. Thanks for doing it so simply and well!
May I humbly suggest that on another day, you approach the topic of "brave and heroic" battles with cancer that significantly reduce the quality of life for those who only have a few months anyway? Sometimes it is best to realize that you will have a better few months without the nausea and anemia from the medications, and that your life will not be longer just because you suffered more.
Thanks for another great post!
Jan
August 27, 2007 7:03 PM | Reply | Permalink
Many medical procedures are somewhat painful. Any surgery, for example, involves some pain. An injection can be painful, and IV insertion can be painful, etc. But, if you have not actually had a prostate biopsy I don't think you can accurately say it is not a painful procedure. Of course if a reason for having another one were to come up I would do it again, just as I accept other painful medical procedures. I think part of being an adult is accepting that not all things that are good for you are pleasant experiences.
Hoppy in Sacramento
August 27, 2007 8:19 PM | Reply | Permalink
You never heard of painkillers?
I say that only partly in jest. I would love to hear more from Richardson regarding New Mexico's medical marijuana law. Richardson didn't just sign the law but actively promotes his contribution.
A wonderful neighbor took many years to die from non-Hodgkins lymphoma (NHL), the fastest increasing cancer of them all according to some statistics.
One of his sons once gave Don a joint to ease the nausea. Don got some blessed relief that once but refused ever to puff on a joint again. Don was sticky about obeying the law even when it hurt bad.
Sumner Burstein, inventor of ajulemic acid, was a very angry man the last time I talked to him. Ajulemic acid is a synthetic form of marijuana without the psychotropic effects. Professor Burstein's drug with its aging patents will likely now never reach market to help cancer patients overcome the nausea of chemotherapy, to increase appetite, to treat longtime sufferers from neuropathic pain, to help MS patients with their shaking, to inhibit blindness from glaucoma with a power far greater than is possible with maryjane itself.
The claimed reason for not pursuing R&D was difficulty in manufacture.
I suspect the claim was completely specious. Rather in fact the reason for not prosecuting the patent was unofficial resistance from the fine folk at FDA looking over their shoulder at the drug warriors in Gonzales' Justice Department.
Pain can kill as surely as surely as cancer itself.
Good to have drugs to help lessen the excruciating pain that many suffer in their last waking moments on earth.
Some would rather people suffer. Maybe they think it helps build character and prepares dying patients for the mythical next world.
Best, Terry
August 27, 2007 9:05 PM | Reply | Permalink
To be clear , I have had at least 3 . The first two , by the urologist with the a.b.t , consisted of a six slightly painful snips- like a pinch. The third by the urologist to whom I transferred , consisted of 12 not in the least painful snips.
My impression is that the PSA level is an extraordinarily unreliable indicator but that a sudden change in the PSA is a serious sign.
About ten years ago the immensely rich founder and ceo of Intel- Andrew Grove , I think ,- wrote an article in Fortune describing the options he investigated in his thorough search for the best treatment . Anyone who is trying to make a treatment decision should google that article. Not necessarily to accept Grove's
conclusion-altho I was convinced- but as
a description and evaluation of the alternatives
August 28, 2007 4:38 AM | Reply | Permalink
.
sPh
August 28, 2007 6:43 AM | Reply | Permalink
To a man over 50, (me) this article is depressing. :-)
August 28, 2007 6:48 AM | Reply | Permalink
Excellent suggestion.
Excellent observation.
August 28, 2007 6:51 AM | Reply | Permalink
Good post, of course, and good luck with the blog. I do wish to step back, though, to the big picture of kinds of procedures. While we naturally will wish to scrutinize payments and coverage on specific procedures, in an evidence-based way, we also want to set priorities in health care generally to encourage the class of procedures that amount to testing and other preventative care that can be handled in the office of the primary care physician.
So this may be an exception, but it's one the experts can administer, and there's also concern for rules regarding health-care systems and economic rewards for the system that, well, the politicians will administer. Meanwhile, one can ask whether the most radical procedure following a certain test is most financially rewarded at present, who's not covered, and so on.
John
http://www.haberarts.com/
August 28, 2007 7:44 AM | Reply | Permalink
John w1141, , rdf, CvilleDem, sphealey--
Johnw141--I'm curious as to why you find this post depressing. Perhaps it's because we just don't know as much about prostate cancer as we wish we did. On the other hand, it strikes me as liberating to know that you don't Have to go for PSA testing unless you want to --and that if you're diagnosed you don't Have to pursue an aggressive, painful treatment unless you choose to. (By contrast, if you're diagnosed with breat cancer your only choices are biopsy followed by radiation or mastectomy. There is no "watchful waiting. I wish there were.)
I think the fact that the National Cancer Institute says that there is no scientific evidence that early detection and treatment saves lives or even slows the progress of the disease is important. (Too many people think that if you just detect cancer early enough, you'll be spared.--which leads to blaming people who die of cancer because they weren't careful enough about going for testing. In fact, early detection and treatment helps with some cancers, but doesn't help with others.)
Of course the Urologists Association and the American Cancer Society disagree with the National Cancer Institute about prostate cancer.. But one needs to keep in mind that urologists make a great deal of money screening for and treating prostate cancer. Moreover, even if they are not (subconsciously) influenced by the financial incentives, it is very discouraging for an urologist (or any other doctor) to realize that a treatment that you've been using for years may not be doing any good. As for the American Cancer Society, even they now say that "no one recommends routine PSA screening of men over 50 who don't have symptoms of prostate cancer."
rdf--you're entirely right that this is a decision that men must make with imperfect information. It's hard to accept the fact that medicine is still an infant science; there are so many cases where we just don't know what the "right answer" is. This is, in part, because many people in the heatlh care industry (including some doctors) have resisted running trials to test whether treatments really are effective. As one doctor from Duke University said to me when I was writing Money-Driven Medicine: "If you're making a pile of money doing something, why would you want to test it to see if it really works?" He was only half-kidding.
spphealey--This is part of what Andy Grove complains about in his article in Fortune. Information about prostate cancer treatments hasn't been synthesized because, instead of collaborating, researchers tend to compete, with each team trying to prove that its treatment is the best. So researchers resist head-to-head comparisons of treatments--particularly when profits are involved.
As a result, at this point, men must decide whether to be screened and whether to pursue agressive treatment based on a) whether they are willing to gamble that even if they are part of the 20% of American men who are diagnosed with prostate cancer, they won't be part of the 3% who actually die of it , but instead will be part of the 17% who are never bothered by it ; b) whether they believe that "watchful waiting" will catch the cancer if it does progress and ;c) whether they believe that early treatment will do any good in stopping or slowing the disease.
Ultimately, the choice turns on one's own temperament (how much of a gambler are you) values (will you feel guilty if you don't do something to try to stop the cancer) and priorities (how important is your sex life to you? do you feel you could handle it if you became incontinent?). Surprisingly, the article published in Bloomberg Markets (a Blooomberg publication) last year offers the best in-depth, even-handed description of how this is, in the end, a personal choice. (Just click on the reference to Bloomberg Markets in my post for free access)
Also if you click on my blog (at the end of the post) you'll find a post about prostate cancer where I go into more detail about Dartmouth's "shared decision-making" program--which seems to me the best approach at this time.
Cville Dem-- Thanks --and sometime I will write about how too many patients are encouraged to "put up a fight" when they might spend their final months with family , travellling--doing whatever they have always wanted to do. Of course, in some cases, a determined patient can beat death. But in other cases, doctors and even family make a patiient feel that he Must keep fighting ('you're not a quitter are you?) when it's not what he really wants to do. That's why we need pallilative care specialists, to help patients sort out their own preferences and desires.
August 28, 2007 8:21 AM | Reply | Permalink
I also learned a lot from my experience with a close relative who was never once told the truth about her condition - that she was terminally ill. She suffered through several months of treatment, and during that time the doctors limited her access to pain killers to avoid her becoming addicted to them.
Medical treatment is indeed in its infancy in many regards.
Hoppy in Sacramento
August 28, 2007 8:50 AM | Reply | Permalink
A rather extraordinary statement in a published scientific paper it seems to me. Perhaps one should worry about that as a red flag to bias by the author. Whatever.
The PubMed reference here does not provide an abstract and I don't have the paper on which it is based.
I would only note that a joint venture recently initiated to commercialize the intellectual property expects a blood test will be developed so that a biopsy will be obviated.
Some men might find that a blood test and more accurate diagnosis without surgery might be somewhat more desirable.
My wife looks forward to the day when a blood or urine test will replace a mammogram. Bet the handful of men with breast cancer would be even more appreciative.
I surely sympathize with those decrying the overuse of screening tests, especially when accuracy is very much in question.
My wife's closest friend was recently diagnosed with metastasized breast cancer. Year after year her mammograms missed detecting the growing cancer. She found the lump herself.
Doesn't mean mammograms are worthless.
Does mean they could be improved and better interpreted.
And just maybe they too will shortly become obsolete.
Best, Terry
August 28, 2007 11:15 AM | Reply | Permalink
I try not to write about myself, but I think in this case the following tale may be instructive.
My doctor put we on a medication for a condition that was loosely related to that for which it had been approved (and for which there was clinical data). It appears to be working so far. So I asked him what would happen to the information that it may also help people like me. Basically he said that nothing will happen with the information. It will go into the anecdotal store of information that he and his partners draw upon, but that's all.
I imagine there are vast amounts of such field data, but there is no mechanism to capture it. This works both in the positive and negative direction. On the negative side it helps explain why drugs such as Vioxx can remain on the market for so long.
It is not necessary to do double blind studies to extract useful information from a mass of uncontrolled data. There are plenty of statistical tools available. What seems to be missing is any coordination.
--- Policies not Politics
Daily Landscape
August 28, 2007 12:01 PM | Reply | Permalink
I have looked madly for the source for your statistic that 1 out of 34 men die of prostate cancer. Where did you get it?
How many men die of prostate cancer rather than with prostate cancer? It is fairly common for men and women to die with some form of cancer, not of it. After all, the leading causes of death are heart attacks and strokes.
August 28, 2007 12:08 PM | Reply | Permalink
You're missing a very important point here regarding averages.
Average people don't get tested for prostate cancer, make decisions about treatment, and live or die.
Real people do.
Me. My dad. Frank Zappa.
My dad was tested early. He had the seeds treatment, and is doing fine.
Frank Zappa didn't test early. He died.
It's all very well to talk about averages. But if you happen to be the guy who is in that unfortunate percentile where early testing WOULD have detected your cancer, but you didn't do it in order to not put an undue burden on the health care system or because you didn't want to have to make hard choices, and suddenly you're looking at an advanced tumor and a death sentence - suddenly those 'averages' seem pretty damn academic.
Because average people don't die younger than they have to - real people do. Maybe somebody you know and love.
August 28, 2007 12:26 PM | Reply | Permalink
rdf, jhaber and terry--
RDF-You're right about the lack of co-ordination. In other countries (which have not turned healthcare into a for-profit enterprise) there is much more co-ordination and sharing of information. (the way academics share--or at least used to share--discoveries). Unfortunately, a for-profit system fosters competition, not collaboration.
At the same time, observational data is probably never going to be as good as long-term randomized clinical trials. First of all, you have to have a lot of data on very similar patients. (Otherwise, there are too many factors that might make your new medication seem to be effective.) But of course there are cases when you can't do blind trials. And so we must do our best to organize and consolidate other data in ways that can be useful.
Terry--I agree that the PSA test is probably on its way out. Anyone who looks at the research realizes that it is a not-very-accurate test which leads to unnecessary biopsies and unnecessary treatments. I think this is why even the American Cancer Society now says that "no one recommends sending asymptomatic patients for routine PSA testing." A few years ago many primary care physicians did routinely send men to a urologist for PSA tests as soon as he turned 50.
But the problem is that even if a new better test comes to market, it's not at all clear that we have treatments that will slow the progress of the disease. If we don't, what is the point of being tested? So that you can walk around knowing that in 10 or 20 years, you may die of prostate cancer (if something else doesn't get you first) ?? Of course we need to continue to work on effective treatments, but because it is such a slow-growing cancer it takes a couple of decades to know whether a treatment is really saving lives . . .It's a very tough nut to crack.
jhaber-- I don't think we want politicians administering rules about what Medicare should cover based on effectiveness--or cost-effectiveness. Hillary Clinton (and other presidential candidates) have indicated that we need independent panels of doctors (and other scientists and perhaps medical ethicists) who have no financial interest in the outcome doing "comparative effectiveness" research and making these decisions. They need to be independent and not dependent on Congress (the way FASB, which sets up accounting rules is--at least to a large degree.)
August 28, 2007 12:27 PM | Reply | Permalink
But all cancers are not the same and its seems particularly true of prostate cancers.
If you can distinguish the very aggressive prostate cancers from those that are very slow growing and even non-malignant tumors, then the doctor and patient can decide whether to do a prostatectomy for instance.
Can it be done? Lots of folks think so. Here is one.
About 15% of men experience prostate specific antigen recurrence after radical prostatectomy. A DNA methylation based molecular test could provide important information to predict which patients are most likely to experience recurrence.
I wouldn't bet a nickel on that particular group FWIW. Not sure of the value of the test even, in this particular instance. (If the cancer is almost sure to recur, should it even be done?)
But there are others for which there may be more use if for no other reason than to avoid a biopsy.
BTW I have used the SEER statistical data base here in the past for checking on U.S. statistics on various cancers. It is not a whole bunch of fun and surely has limitations but I am wondering if you find it very badly flawed?
Best, Terry
August 28, 2007 1:03 PM | Reply | Permalink
I tell ya, I'm one of the men who swear by the PSA test. My prostate felt fine to my doctor's probbing finger, but my PSA kept rising continuously.
Three biopsies later -- 34 samples of my prostate -- they found a Gleason 6 tumor hidden in the shadows far back from the doctor's finger.
I was "cured" five years ago and now blog about my experiences.
Yes, the biopsy hurts.
The link to my Cancer Connection blog is http://www.nubella.com/content/blogsection/108/8050.
Please share with me on my blog your thoughts about dealing with prostate cancer. I'm eager to hear from you.
Steve
August 28, 2007 1:04 PM | Reply | Permalink
"I don't think we want politicians administering rules about what Medicare should cover based on effectiveness." Er, um, Maggie, than why the post in the first place? That is, my point is that you're micromanaging when there are bigger priorities to set.
John
http://www.haberarts.com/
August 28, 2007 6:07 PM | Reply | Permalink
I find it pretty shocking that so little is known about how to treat this very common cancer. In the past when it was discovered you just had it "taken out" the whole prostate and lived with the very negative side effects of the surgery. I've seen many men endure this. From the information cited here it appears many would have been better off simply letting the disease follow it's course and not do anything until the cancer begins to really start getting aggressive. I guess the question is why don't they know more and what are they doing to find out?
August 28, 2007 9:43 PM | Reply | Permalink
"incomplete information"
I subscribe to more than one health newsletter, and therefore I receive a lot of junk mail advertising healthcare products. It is hard to know who(m) to trust. I have to rely on my instincts, just as I do when reading pundits on public affairs.
I like to see at least two people who appear somewhat trustworthy recommend any healthcare procedure before I commit to it.
There are people who review the scientific literature as a whole, or at least claim to do so, although they sometimes have a financial interest in convincing people to follow their advice.
Some of this advice actually does work. Tea tree oil actually can cure toe-nail fungus infections,if you are willing to be very, very patient. Certain supplements actually do help with indigestion better than antiacids. Policosanol really has been good for my chloresterol. There are other things that actually work.
Low-sodium V8 juice seasoned with No-Salt actually does help my blood pressure, because of the potassium. Whether or not adding a few drops of extra-virgin olive oil and heating the V8 juice in the microwave actually helps with lycopene absorption, and whether or not that actually helps ward off prostate cancer, I do not know. Whether or not seasoning the V8 juice with turmeric actually helps fight off low-level systemic inflammation, I do not know. But it tastes delicious. The idea is going around that inflammation is at the root of all sorts of medical problems, and, so far as I know, drinking tomato soup does no harm.
How much of this is superstition? I really don't know.
The advice that I have been reading about prostate cancer is very similar to what Maggie is saying, in some respects. I think it is fair to say that my newsletters are not as negative about the efficacy of conventional treatments, although they do emphasize the downside. My newsletters do not go after the cancer surgeons the way they go after the heart surgeons, probably because they do not have much to offer in the way of alternatives. To go a bit further, however, without actually giving anyone specific advice, what I am hearing is that living well is not only the best revenge, it is also something that ought to be considered as part of a comprehensive cancer treatment and prevention program.
August 29, 2007 6:26 AM | Reply | Permalink
.
sPh
August 29, 2007 6:46 AM | Reply | Permalink
Jhc, Carol, Victor, Biff sphealey, oleeb and everyone else:
I plan to respond to individual comments soon. But first, I just wanted to point out this news (which I heard about on the evening news last night. I then looked up the article quoting the American CAncer Society this morning) :
August 29: IN the August 29 issue of the Journal, Cancer, the American Cancer Society changed its position, saying that "Because the current evidence about the value of early testing for prostate cancer insufficient to recommend that average-risk men undergo regular screening, the ACS recommendations emphasie shared decision-making. (See what I wrote above and on my blog about Dartmouth's shared decision-making program.) The ACS goes on to say that PSA testing should be "offered" to men over age 50 but not "recommended.." and that the doctor should have a full discussion with the patient a bout the "potential benefits, limitations and harms of screening." The ACS concludes that it woudl be "inappropriate" for a doctor either to "recommend" screening or to "discourage screening." He should leave it up to the patient. IN other words, the ACS seems to be acknowleding that we just don't know whether screening does any good.
August 29, 2007 9:22 AM | Reply | Permalink
Thanks for that reference.
Here's my response: I have technical training and experience, including statistical process control, Bayesian statistics, and failure analysis. My doctor is technically knowledgeable, personable, interactive, and willing to talk things over with patients even even though the health plan codes don't pay him for the time [1].
And I couldn't begin to make a decision like that on my own, or necessarily even with guidance and advice. How the heck is the Average Joe with no technical or mathematical training supposed to even make sense of that non-recommendation much less make his own decision?
sPh
[1] I did, until he left practice for a salaried academic job last month. Now I have the health centre's "new internist of the month" until I can find someone permanent. At least I had one doctor for 3 years; at my last plan/medical center I saw my assigned doctor _once_ in 5 years.
August 29, 2007 9:29 AM | Reply | Permalink
Another significant issue suggested by this post is this: To what extent should the larger community support the choice of an individual patient to incur the cost of a diagnostic procedure that is of doubtful value in improving the outcome?
In other words, should you pay for my PSA test (my dr orders one every year or two, in part because I have pressed him) when a negative test (mine are always
As the cost of health care as we know it eats up a consistently greater share of the national income each year, Medicare needs to impose some of the budget restrictions on the drug companies, and perhaps tests that do not lead to effective treatments should be discouraged. This could be done by Medicare's not paying for routine screening PSAs when there are no symptoms, or by imposing a high co-pay.
I do not have any strong opinions about including the cost of screening PSAs as a Medicare benefit. But the cost-benefit of various medical procedures and tests will have to play a big role if the US is to get "more bang" for its health care bucks.
August 29, 2007 9:33 AM | Reply | Permalink
Unfortunately, it's usually not as clear cut as your example in the world of modern medicine, not for cancer, and not for virtually any other malady. Those that actually have such a clear cut choice are the lucky ones. It's rarely so black and white. I've known two people who were lucky enough to have that black and whiteness and chose the hospice route. But I also spent a lot of time in the I.C.U. the first months of this year with a family member, and learned that there were many many many more complicated situations.
The steps one is offered are virtually always incremental, doctors are usually on the goal of making someone feel better, not saving their life. There are few heroic life/death struggles going on. Instead people are chosing complicated treatments to see if they can have a little better quality of life while still being alive. For those with chronic, they are often going downhill, and It's a serious of small battles, not a war against death, to get back to a previous stage of being better, not "cured."
An example is kidney dialysis. It used to be controversial, in the manner of artificially prolonging someone's life, someone that should be dead. Now there's like a couple hundred thousand getting it on Medicare/Medicaid. (Cavaet: that's estimate from memory, just for rhetorical purposes.) It's not high quality of life. You go 3 times a week, 4 hours a spell, it makes you queasy & light-headed. The diet required is horrible, it bans a lot of people's favorite healthy, fresh foods. A lot of the patients are diabetic, too, and have all kinds of other work to do monitoring their health and frequently end up hospital inpatients for spells. Yet many find their life still quite enjoyable. Everyone on dialysis has had a death sentence in the foreseeable future already given to them unless they can have a transplant, and they chose to do it.
For most, the other choice is fast, miserable death. But is it? One can't be sure. Art Buchwald, the columnist, refused dialysis, went into hospice, kept living to the astonishment of all his expensive doctors, got kicked out of hospice, lasted more than a year until he died.
It's just not that easy with today's medicine.
August 29, 2007 9:47 AM | Reply | Permalink
Not one person who reads this is going to believe me, but it is true nonetheless.
Let me quote from an article entitled "The New Era in Cancer Research" by Harold Varmus, perhaps the leading proponent of medical research in the US today. "Despite large federal and industrial investments in cancer research and a wealth of discoveries about the genetic, biochemical, and functional changes in cancer cells ..... the age-adjusted mortality rate for cancer is about the same in the 21st century as it was 50 years ago" Science 26 May 2006: Vol. 312, pp. 1162 - 1165.
TRANSLATION: There is no cure for prostate cancer or any other kind of cancer (childhood cancers excepted IMHO). There has been NO improvement in cancer treatment since 1950. Rather there have been enormous strides in the detection of early (non-threatening) cancers, and elaborate treatments for "curing" these early cancers, with no change in the overall death rate.
The death rate for some cancers decreases, for others it increases. These changes are usually pretty moderate and we don't really understand the reasons for them. In some (few) cases the evidence that a specific therapy is effective is so strong, it is hard to doubt it. And yet, the death rate for cancer as a whole has not improved.
I have overwhelming respect for Varmus for writing those words. He is an honest man. Of course he believes that we are now finally on the verge of real progress in cancer treatment, the "New Era," and I do hope he is correct.
August 29, 2007 11:21 AM | Reply | Permalink
And why is the PSA test on its way out, when mammograms aren't? Because PSA is relatively inexpensive to begin with, and abandoning it will mean only abandoning a few reagents and lines of software code. Mammograms, on the other hand, represent very expensive and specialized machinery, which is why mainstream "women's" cancer organizations are so heavily funded by the likes of Siemens et al. Abandoning the technology would mean hospitals would have a piece of equipment worth several million dollars sitting unused. Also, reading mammograms requires the input of a radiologist, which again makes them highly profitable.
I recently had a false positive mammogram. Fortunately, malignancy was ruled out with a diagnostic mammogram. However, the occasion to read up on breast cancer detection and treatment was enlightening, to say the least. Statistically, *every* woman who has regular mammograms will have at least one false positive. Many of these proceed to biopsy before being ruled benign.
As for treatments beyond surgery, or whether DCIS should be treated at all, I'm not a doctor and not qualified to comment. But suffice it to say that with the state of medical technology what it is, I will not have another mammogram. In fact, a large percentage of women who've had a false positive never have another mammogram. And if I should ever find a lump that is biopsied malignant, I will have surgery and no other treatment.
Certainly one can point to individuals whose lives have been saved in a meaningful way by radiation and chemotherapy. But from a personal standpoint - not the standpoint of a family member who wishes their kinsperson to live at any cost, but the standpoint of the person who may have to undergo the treatment - the choice is clear. One can undergo surgery and no other treatment, and still have a small chance of dying from the cancer. Or one can undergo the full battery of treatment, with all its horrific side effects, and have a reduced chance of dying from the cancer, but a much increased chance of dying from the treatment (permanent heart, lung and circulatory damage). The chance of death from the cancer is so small to begin with that it's worth taking that risk.
August 29, 2007 11:38 AM | Reply | Permalink
Marcf,
Am I correct that it was you rather Varmus who excepted "childhood cancers?"
As often happens, the devil is in the details. About half of childhood leukemias are cured today. A diagnosis was a certain death sentence when I once passed a Room of Doom.
Parents brought their doomed children to that horrible room hoping for a miracle. Some could sit there all day and be told to return the next day if they liked when the doctor might be able to see them.
A doctor told me, "We are going to cure those cancers." He and the others did so.
Where are those statistics now?
Younger and younger women get breast cancer today. The breast cancers in younger women are more aggressive and tend to be more likely the result of environmental causes rather than genetic. Everything being equal, level statistics on mortality of breast cancer would seem to indicate progress in treatment.
I would personally be inclined to agree with Varmus that poisoning, burning, cutting and starving tumors hasn't been a huge success but I believe it is clearly wrong to say there has been no progress and most certainly not true of palliative care.
Unlike the case with our War on Iraqis, I believe the War on Cancer is quite winnable but most difficult indeed.
I am very saddened by some who would discourage such a war.
I note that Varmus is not one of those and I am grateful to people like marcf for bringing things into sharp focus.
JMO.
Best, Terry
August 29, 2007 12:05 PM | Reply | Permalink
About 50% I think.
Seems like a high risk to me.
BTW there is an automated method of reading mammograms that might increase the discovery of tumors but also increase false positives. Good idea? Your call. MRI's I understand would greatly increase the readability of mammograms and not cause cancer themselves but there the cost is a factor that militates against it.
Best, Terry
August 29, 2007 12:14 PM | Reply | Permalink
Carol, Biff, hard-headed liberal, victor, jhaber, sphealey, oleeb, Terry
Carol-- "one out of 34" is just another way of saying that 3% of American men will die of prostate cancer. (3% is that statistic that is most often cited.)
Oleeb-- We don't know more about prostate cancer because, first of all, we don't know what causes it . . In general, cancer is a very tough disease. Nixon declared a "war on cancer" roughly 50 years ago and we are still far from winning it. This is, in part, because we're not going about it the best way (too much competition, not enough collaboration) but it's also because there are limits to our scientific understanding--at least in this millenium. We will never figure out how to cure everything. Which is simply a way of saying that we will all die of something IN 2004 Clifton Leaf wrote an excellent article in Fortune titled "Why we're Losing the War on Cancer" which you can find by Googling his name, cancer and Fortune.
Biff, I can see why you would be a fan of the PSA test--and I am glad that you are as you say, "cured." And I also uderstand why you put cured in quotation marks. One can never be certain that they are cured of prostate cancer, or whehther it would have killed them if they hadn't been treated. But clearly your cancer seems to have disappared, and I take it that the side effects of treatment were either minimal or acceptable. Perhaps, in the interests of full disclosure I should add that my husband was diagnosed with prostate cancer a number of years ago after a PSA and biopsy with a relatively high Gleason score. His doctor recommended the "seeding"version of radiation treatment. My husband opted for watchful waiting instead,.Since then nothing has happened and his PSA has actually come down and is now below 4.
Will the cancer ever bother him? "Probably not ,"his doctor says, but who knows? If he had been treated, would he have been one of the many who become impotent and/or incontinent? He has no way of knowing. But he wasn't willing to talke that risk while knowing that out of every20 men diagnosed with prostate cancer (after biopsy) only 3 die of it while 17 died of something else and by and large, are never bothered by the cancer. He liked those odds better than the much higher odds that he would become impotent if treated. But he's a risk-taker, and he's also not a person who worries about the future unless he can do something about it,. He pretty much lives in the moment.
Victor- .You're absolutely right that if you were one of Dr., Klotz' patients (the doctor who I describe in the post who recommends "watchful waiting") and you turned out to be one of the tiny percentage of his patients (1 1/2 percent of all of his patients) who died because the cancer did progress adn watchful waiting didn't catch it, you probably wouldn't care what happened to the average patient. But the fact is, you also wouldn't know whether treatment would have saved you if watchful waiting had caught the cancer. . .
Of course no one is the "average patient" but the reason patients need to understand the odds is so they can decide which odds they like better. My husband preferred the risk that he would be one of the 1 1/2 percent that lose the watchful waiting game rather than risking that he would be one of the 65 out of 100 who become impotent after radiation.
sphealy--you raise an important question: how can the average joe weigh the statistics in the face of so much uncertainty. This is where "shared decision making programs" are so useful. In the program at Dartmouth , patients are given a pamphlet describing risks and benefits and a video of patients discussing why they decided to have treatment, be tested or not. Patients take both home, watch the video with their families, often more than once. Then they go back to the doctor who asks them questions to see if they understand the risks and benefits. If they don't, he keeps trying different way s of explaining until they do. One doctor at UCLA uses a roulette wheel. And of course it's easy to explain odds to anyone who has ever played the horses. Surprsingly , most patients eventually understand--and accept the fact that there is no "right answer" We just don't know which cancers will become aggressive.
Then the doctor talk to the paitent about his own priorities and values. What does he most fear? Which risk would he rather take? Age often has a lot to do with the answer
Jhaber: by focusing on prostate cancer as one area where Medicare might be wasting money I'm not really trying to micro-manage healthcare. I'm just using prostate screening as an example of how we need to set priorities about effectiveness and cost-effectiveness based on medical evidence. I may have written more clearly about this in the post on my blog. Also see my response today on THCB to Brian Klepper's post.
Hard-headed Liberal-- Yes, given what the American Cancer Society is now saying, perhaps Medicare should impose higher co-pays on prostate screening--or at least insist that doctors verify that patients have gone through the whole shared decision-making process before being screened.
Terry--I agree--If doctors could tell which tumors will gecome aggressive screening would make a lot more sense.
August 29, 2007 12:25 PM | Reply | Permalink
Whether reliable or not - I have a friend who hadn't seen a doctor in years. His wife insisted he go for a checkup and get screened for prostate cancer. No history of it in his family, but she insisted. So he went.
His PSA was very high. Sure enough, a biopsy showed he had prostate cancer. He was LUCKY. They got it at a fairly early stage.
He's doing well (6 years later). He changed his lifestyle, diet and attitude about life. He retired early (he was a junior high school teacher). If he had taken the attitude of "Why get tested?" he would have done none of these things.
When liberals talk about percentages in matters life and death we had better not forget - as our conservative counterparts so often do - that real people and real lives are in those percentages.
August 29, 2007 1:53 PM | Reply | Permalink
"Am I correct that it was you rather Varmus who excepted "childhood cancers?""
Me. From the little I know, childhood cancers (and leukemia) are indeed a big success story. However, these are only a very small part of the overall cancer statistics and make a very small impact on the overall death rate.
My personal view is that childhood cancer is indeed a "disease" that has potential cures. Whereas adult cancer is some sort of natural homeostatic process that is part of normal life, and so it cannot be "cured." I understand what Varmus says is that we are finally understanding cancer well enough to be able to fine-tune engineer treatments for cancer, soon, and after that the death rates will fall significantly.
But what do I know. I'm not a Doctor and I hated Biology in school.
August 29, 2007 3:01 PM | Reply | Permalink
I don't see it in any way as a conservative/liberal issue. Does John Edwards not have a particular interest in one particular cancer victim?
Don't we all have stories of defeat, suffering and victory against an ancient, merciless enemy?
The CEO of a biotech developing an artificial heart (well, kinda) proudly told me of his meeting with Hillary and her astute questioning. He told me of making some notes on a card for Bill as requested that Bill then stuck in his pocket. I naturally asked if the pocket was over Bill's heart with his little black book. :-)
Louise Slaughter, the Democratic Representative for the district, seemed to talk regularly about getting a $1M grant for that "heart" though Hillary seemed to have a little to do with it. Lately there was another grant of some kind that Hillary brags on. Or maybe it is the same one.
It would be no different probably if it was Republicans representing the area.
For those who are interested, the device is a plastic cup that can be inserted in minutes underneath the heart by any surgeon. The LVAD's are far more expensive, take hours to implant by a skilled cardiac surgeon and almost always lead to an early death from stroke. The cup long ago saved the life of a teenage girl. The girl is now grown, married and has a daughter of her own. During that time the cup sat on a shelf gathering dust as there were more important things to do.
The money from the government grants are not of great importance actually but the support is. Beats killing people.
As you know heart attacks kill more people than cancer.
Hillary particularly has talked about moving the slugs at the FDA (my words, of course) to start approving drugs. The abominable noman lives at the FDA. Yes is the wrong answer. Some of us think Hillary is a conservative but I think she speaks for many of us liberals in this instance.
Best, Terry
August 29, 2007 3:57 PM | Reply | Permalink
That becomes less true every day.
I don't have time to find more current stats, but this should suffice to make the point:
Not only that, but my own recent anecdotal experiences and research surrounding that tell me that a lot of elderly get "heart failure" put as the primary on their death certificate when the reason they had heart failure was because they were at the end states of being treated for something else. (Or weren't getting that something else treated at all.) The classic 1950's mid-life heart attack is simply becoming rarer all the time, it's mainly because of the drugs, of course, and not our diets. But a ton more people do exercise these days--back in the old days a gym was something guys like Rocky went to.
Edit to add: must say that my anecdotals also give me the idea that strokes and other clot dangers might be the numero uno consideration with the elderly, as opposed to heart attack, seems sometimes like everyone on Medicare is on blood thinners.
August 30, 2007 8:25 AM | Reply | Permalink
A heart attack (myocardial infarction) is usually due to a clot or other mechanical blockage of one or more coronary arteries, which supply blood to the heart muscle. Related syndromes, such as angina, are due to reversible spasm or partial blockage of coronary arteries.
Unless there are specific contraindications such as allergies, asthma, and bleeding disorders, low-dose aspirin is generally advisable at least starting in middle age. Other anti-clotting/"blood thinner"/antiplatelet aggregation drugs may be appropriate in addition to, or instead of, aspirin, but these increase risk of bleeding.
--
Howard
*equal opportunity offense to both extremes*
"Those who cannot remember the past are condemned to repeat it" [George Santayana]
August 30, 2007 8:37 AM | Reply | Permalink
In other words it's true. :-)
We elderly folks who screw up your statistics by dying of heart disease seem to like living more than younger folks. As life ebbs away we tend to treasure it more.
If a prostate cancer patient dies from a heart attack as the result of the pain created when the cancer metastasized to his back, what did the man die from?
I would say he died from pain but that would never go on a death certificate.
You have a point undoubtedly though not necessarily a valid conclusion.
The heart disease patient, a teenage girl, whose life was saved by a heart machine was ill from a bacterial infection. She walked out of the hospital 3 or 4 days later because the device kept her heart beating.
Incidentally it is projected the device will be available in the Common Market countries of Europe long before it is available here. Once again America would do the work, provide the funding and benefit Europeans most. America has a big heart.
Best, Terry
August 30, 2007 8:55 AM | Reply | Permalink
yes, of course, and apologies for any inaccuracies from the sloppy, quick post on the topics involved.
I believe you yourself, Howard, are onea those "no longer dead from a heart attack" stats, aren't you?
:-)
August 30, 2007 8:56 AM | Reply | Permalink
BevD, Not Again, Terry, Marcf, Art Appraisor
BevD--Your friend was indeed lucky--assuming that he would have been one of the 15% of men diagnosed with prostate cancer who die of it. On the other hand, if he would have turned out to be one of the 85% who don't die of it (and usually experience no symptoms) then he was less lucky, especially if he experienced any of the side effects of treatment. . . There's just no way of knowing whether his cancer would have progressed. His Gleason score doesn't tell us that.
Terry and Not Again--actually Not AGain is right when she says "the chances of dying of breast cancer is so small to begin with . . . " An American woman's chances of dying of breast cancer is, if I remember correctly, roughly 3% (It varies by age, and I don't have the numbers in front of me, but that's roughy right.) Having annual mammograms reduces her chances of dying of breast cancer by one-third (not one-half) bringing her chances of dying of breast cancer down to 2%. Not a huge reduction, but significant if you happen to be that one women out of 100 who was saved because you had regular mammograms.
On the other hand, two women out of 100 go dutifully for their mammograms--and still die of breast cancer. How can that be? Often the tumors that prove fatal are very fast-growing tumors--they can pop up and spread during the 12 months between mammograms. This is why women who know how to perform a manual exam may be safer then women who simply rely on mammograms.
Meanwhile, mammograms do have risks. First, there is as notagain points out a high risk of a "falsepostiive" which can cause great anxiety, and can lead to unnecessary biospies. Secondly, as screening tests become more refined there is the danger of finding a very small cancer that never would have grown--this leads to unncessary treatments.
I'm not recommending against mammograms, just pointing out that the benefits of getting regular mammograms are much less than conventional wisdom suggests (just a 1% reduction in your chances of dying of breast cancer) and there are risks.
Why does the conventional wisdom hold that mammograms drastically reduce your chances of dying? Let's face it, breast cancer has become a big business. People are making billions on mammograms, MRIs, biopsies and treatments. When there is that much money involved, there is usually a lot of hype.
But at least (in contrast to treatments for prostate cancer) we do know that treatments for breast cancer can save lives--particularly mastectomy, assuming it hasn't spread.
Marcf-- Yes, I agree Varmus is brave to speak out. And he is right. You are also right, I think, in saying that we have made real progress with childhood cancers and lukemia. I have read that this is because we have been much more successful in getting children suffering from cancer into randomized clinical trials (where some get the medicaiton being tested and some get a placebo.) These randomized clinical trials are the gold standard for determining what is and what isn't effective. But sometimes it is hard to get adult patients to sign up for them. They're afraid they will get the placebo. (Though in fact, even in stage 3 trials, they are often better off getting the placebo.)
Anyway, it has been easier to get children into the trials. Obviously the kids themselves don't object, and their parents seem willing to enroll them in trials if only to help move forward in curing the disease---even if their child isn't saved. It's intersting that the parents of children dying of cancer seem more generous in this regard--more willing to look at the common good--than adults dying of cancer. Perhaps this is because childhood cancer is so tragic that it brings out the best in us. No one wants to think of anyone's child dying of cancer.
Art Appraisor-- You are right, of course, much end-of-life care involves trying to make the patient comfortable rather than representing a heroic (and futile) attempt to save a life. But most patients would be much better off receiving that end-of-life care in a palliative care unit or in a hospice rather than in an ICU. An ICU is really a terrible place to die, no matter how kind the staff. Moving to a palliative care unit or a hospice means that the family and the patient are acknowleding that the patient is in the process of dying, though no one knows exactly when. (Patients are often quicker to accept this fact than family.) But in a palliative care unit he/she can still receive treatment as well as pain-killers, so it doesn't mean "giving up" entirely.
August 30, 2007 8:59 AM | Reply | Permalink
Ms. Mahar,
Just wanted to mention how much I appreciate you returning to the comments section (more than once!) and posting thoughtful replies to serious points. Such a practice greatly improves this site IMHO.
sPh
August 30, 2007 9:02 AM | Reply | Permalink
Your response on the mammogram issue was especially appreciated because I noted that you gave a 5 to the original comment and I wondered why. (It's on the mind cause it takes 4 damn months to get an appointment here in NYC for the baseline mammogram the gyn wants, I ended up having to cancel twice. :-))
Many of us really are going off-topic on your post and your being so attentive to those off-topic flights is above and beyond the call of duty. I was thinking it must be boring for you to hear the same stuff over and over given that you have been so heavily into these issues for years, but then I also thought, well mebbe doing that here is a good way for her to firm up her presentations.
:-)
August 30, 2007 9:10 AM | Reply | Permalink
After bypass surgery, I did like calling people and apologizing for missing their meeting, but that I was dead at the time.
*sigh* I'm less worried about your quick post than direct-to-consumer advertising I see about "acute coronary syndrome" and "ask your doctor about [antiplatelet aggregation drug]". Acute coronary syndrome is, in many respects, a catchall term for chest pain, of cardiac origin, that is still being diagnosed.
The non-aspirin drug most commonly advertised is quite useful, in properly selected patients. The decision to prescribe it, however, is going to depend on a number of studies and patient history that aren't accessible to most laymen. To me, this is the worst of DTC advertising: flogging a drug that has potential dangers (as well as real benefits), and for which the indications are technical. I can't see the ads improving healthcare, but, instead, wasting time in patient-physician encounters that could be better used in lifestyle counseling.
--
Howard
*equal opportunity offense to both extremes*
"Those who cannot remember the past are condemned to repeat it" [George Santayana]
August 30, 2007 9:12 AM | Reply | Permalink
Thanks, Maggie. I do understand that 3% equates about 1 out of 34. I was really asking if it is correct that 3% of all men die OF prostate cancer rather than with it (see your own discussion of the presence of non-malignant breast tumors). As people age, they have an increased chance of acquiring these non-malignant tumors, and many people die with them, rather than because of them. They may be found to have the cancer afterwards, or close to the time they die, and this may be confounding the statistics.
At any rate, thanks for your replies, and the comments on this column are very good too.
August 30, 2007 1:42 PM | Reply | Permalink
Carol--
I'm sorry, I didn't mean to imply that you wouldn't know that 1 out of 34 equaled 3%--I just assumed that you were Googling "1 out of 34" and that's why you weren't finding it. . . .
To answer your question--yes, 3% of all American men die Of prostate cancer--many more die With it, but in most cases, they have never felt symptoms. This all makes it a very tricky disease: it kills many men, and for many, many others, it proves harmless.
Finally, --thank you, I too think that the comments on this thread (and on this blog) are very good. That's why I like posting here. I enjoy responding to the people who comment,and over time, getting to know them a bit.
August 30, 2007 5:19 PM | Reply | Permalink
This posting seems to me to be seriously misleading.
At age 54 my PSA number had a big jump. The number wasn't high, but the jump was. The urologist did an ultrasound viewing which showed suspicious spots in the prostate gland. Biopsy of those spots had cancer in 5 out of 6, with a Gleason score of 7 (3+4), just entering the aggressive stage. Dr. Hackenslash removed the prostate with the cancer still within the capsule of the gland, but right at the edge. I feel that the diagnosis and removal was at the right time. My subsequent yearly PSA tests are undetectable. I'll continue to have the tests because no one knows if there's cancer still circulating and looking for a place to alight and begin growing again.
One nurse that assisted me told the story of her father. He had no testing and did nothing until he saw blood in his urine. His prostate cancer had spread to other organs. His life was saved, but he has severe aftereffects.
I strongly support PSA testing with ultrasound screening if indicated and biopsies if recommended. Yes, the ultrasound and biopsy can be very unpleasant. Dying early is worse.
August 31, 2007 9:29 AM | Reply | Permalink
ArtA:
Regarding:
Unfortunately, it's usually not as clear cut as your example in the world of modern medicine, not for cancer, and not for virtually any other malady. Those that actually have such a clear cut choice are the lucky ones. It's rarely so black and white. I've known two people who were lucky enough to have that black and whiteness and chose the hospice route. But I also spent a lot of time in the I.C.U. the first months of this year with a family member, and learned that there were many many many more complicated situations.
That is why I asked Maggie to consider a post on the subject. I never intended to imply that it was simple or clear cut.
Jan
September 6, 2007 12:04 PM | Reply | Permalink
Look at it this way -- you've avoided death by motorcycle jump, while drunk, over a beach volleyball net while being hugged by your screaming passenger. That happens to very few people over 50.
--
Howard
*equal opportunity offense to both extremes*
"Those who cannot remember the past are condemned to repeat it" [George Santayana]
September 6, 2007 12:12 PM | Reply | Permalink