The Future of Health Care Reform: Health Wonk Review Raises Some Provocative Questions:

Should the Preventive Services Task Force Depend on Congress for Funding?

Should Doctors Who Share Decision-Making Be Protected Against Lawsuits?

If Doctors Don’t Tell Patients What They Are Doing, Is This Malpractice?

Should Physicians Who Want Tort Reform Give Something in Return?

Should Nurses with PhD’s be Called “Doctor”?

These are some of the questions I thought about after reading the latest edition of Health Wonk Review, hosted by Health Affairs’ Chris Fleming. In this two-part post, I focus on just five of the best health care posts of the past two weeks. Inevitably, I have omitted some outstanding posts. I urge you to read the full round-up here.

Congress Threatens the Preventive Services Task Force

Over at The New Health Dialogue, Joe Colucci reflects on the US Preventive Services Task Force’  (USPSTF’s) recommendation that men no longer undergo PSA testing to detect prostate cancer. Colucci points to a recent New York Times Magazine piece by Shannon Brownlee, New America Foundation’s Health Policy Program Acting Director, and her partner in investigative reporting, journalist Jeanne Lenzer.

Brownlee and Lenzer reveal that the UPSTF was ready to give PSA testing a “D” rating (as in “don’t do it”) a year ago, but backed off after word leaked that if the Task Force made such a controversial recommendation, Congress might cut its funding. Kenneth Lin, the researcher who led the review of PSA testing, quit his job in protest.

The USPSTF is a panel of independent experts that evaluates the latest scientific evidence on preventive tests and treatments. It should not be vulnerable to bullying or blackmail by legislators who are lobbied by special interests. Some of these lobbyists represent patient advocates, but those who offer the biggest campaign contributions tend to be stakeholders in the multi-billion-dollar industry that profits from prostate cancer testing and treatments. Legislators are not medical researchers, and they are not physicians; they are not in a position to know whether what the lobbyists say is true.

I sympathize with patient advocates in many situations, but they, too, are not scientists. Whatever they may have been told in the past, the evidence has become clear: the risks of PSA testing outweigh the benefits. As Brownlee and Lenzer point out, “About half of men who undergo radiation or surgery will have permanent side effects like impotence and incontinence. Up to 1 in 200 men die within 30 days from complications related to the surgery.” Yet most men do not need treatment. Prostate cancer usually grows very slowly; the vast majority diagnosed with early stage prostate cancer will never experience symptoms. If they were never tested, and never treated for the disease, they would be spared the 50/50 chance of life-changing side effects.

Moreover, there is no solid evidence that when early-stage prostate cancer is discovered through PSA testing, treatments save lives. An analysis of six studies of screening involving nearly 400,000 men, published last year in the British medical journal BMJ, found no significant difference in overall mortality when screened men were compared with the control group. Philipp Dahm, a professor of urology at the University of Florida College of Medicine and lead investigator for the analysis, says the study shows that that P.S.A. screening “‘does not have a clinically important impact’ on overall mortality.”

But what if there is, in fact, even a one in 1400 chance that an individual might be saved by PSA testing? (Studies published in the NEJM suggest that if you screen 1400 men for nine years, screening would avert one death.)  And what if that one man in 1400 were your husband?

Brownlee and Lenzer note that “P.S.A. advocates are concerned that statistics play down the value of each life saved. Some also argue that the statistics will validate their view as men are followed beyond 14 years . ..”  But,  they observe, David Newman, a director of clinical research at Mount Sinai School of Medicine in Manhattan, looks at the problem differently, arguing that the controversy “boils down to  . .  . dueling narratives.” Everything depends on “the way each side frames the potential for harm from the disease compared with the collateral damage from the test and subsequent treatment.”

Newman suggests that a PSA advocate might frame the argument this way: “Imagine you are one of 100 men in a room. Seventeen of you will be diagnosed with prostate cancer, and three are destined to die from it. But nobody knows which ones. . . .  Now imagine there is a man wearing a white coat on the other side of the door. In his hand are 17 pills, one of which will save the life of one of the men with prostate cancer. You’d probably want to invite him into the room to deliver the pill, wouldn’t you?” he asks.

Newman goes on to argue that to completely convey the P.S.A. screening story, you have to extend the metaphor: “After handing out the pills, the man in the white coat randomly shoots one of the 17 men dead. Then he shoots 10 more in the groin, leaving them impotent or incontinent.

Newman pauses. “Now would you open that door?” He argues that “the only way to measure any screening test or treatment accurately is to examine overall mortality. That means researchers must look not just at the number of deaths from the disease but also at the number of deaths caused by treatment.” When they do that, they are likely to agree with Dahm that “P.S.A. screening does not have a clinically important impact on overall mortality.”

As I reported in 2010,  when Richard J. Albin, the scientist who discovered the Prostate Specific Antigen (the protein that would be used as a marker for prostate cancer, a.k.a. PSA) stepped forward to publicly label the PSA test a “profit-driven public health disaster,” what had once been seen a medical controversy began to look like a money-driven scandal.

The USPSTF, Like FASB, Needs Protection

The USPSTF must be protected from politics. On that score, I would compare it to The Financial Accounting Standards Board (FASB), the organization responsible for establishing standards of financial accounting that govern the preparation of financial reports by publicly-traded companies. Until 2002, FASB’s funding rested to a considerable degree upon donations by the accounting industry and other constituencies. These contributions were voluntary, and this gave accounting firms some leverage over FASB. In 2002, Congress decided to bolster the group’s independence by ordering public companies to pay set fees to FASB.

This mandatory contribution system is meant to shield FASB from meddling by those who might promise to contribute more — or threaten to contribute less –unless the Board bows to their wishes. If truth be told, FASB still is not completely immune to outside influences: it is subject to oversight by the Securities and Exchange Commission, and this can lead to pressure. But FASB does not depend on funding from Congress, and this, I think, is crucial.

To be truly independent, USPTF, too, needs mandatory funding from outside sources. Perhaps the department of Health and Human Services could assess a fee on drug-makers, medical equipment makers and others who profit from preventive tests and treatments, requiring them to help fund USPSTF’s work. After all, the research done by the Task Force helps them by revealing which procedures are most effective, and could aid them in making their products more valuable.

Going forward, the Task Force’s counsel will become increasingly important. Under the Patient Protection and Affordable Care Act (PPACA), USPSTF’s research will determine what preventive care should be considered “essential,” and afforded first-dollar coverage by all insurers, without co-pays or deductibles. These are among the most important decisions that will be made in the years ahead. This is why integrity of the Task Force’s decisions must be protected.

Finally, someone should invite Kenneth Lin to come back to UPSTF–if he is still interested in the job. Lin has been vindicated, and we need more men and women with his courage in government.

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“Nothing about Me without Me”:  If Doctors Don’t Share Information With Patients About Tests and Treatments, Is This Malpractice?

In a post titled “The Doctor Decided I’d Have a PSA Test without Consulting Me,” Gary Schwitzer takes a look at PSA Testing from the patient’s perspective on his invaluable Health News Review Blog. There, Schwitzer posts a compelling video of a man who describes his regrets about his PSA test, and the treatment that followed. The video comes courtesy of the Foundation for Informed Medical Decision Making.

This patient never had a chance to decide whether or not he wanted a PSA test. Back in 1997, his primary care doctor just went ahead and ordered it, along with a group of tests. At the time, this was not uncommon, and some physicians do this to this day.

After his doctor ordered the test, 47-year-old Tim Glynn’s life began to slide, with some speed, directly downhill. The next week, his doctor announced the results of the test: Glynn’s PSA levels were elevated; he should have a biopsy as soon as possible. Glynn followed doctor’s orders, but after the biopsy, Schwitzer reports, “the self-described country lawyer . . . walked into a bar in the middle of the afternoon and ordered a martini.”

Within a few weeks, Glynn’s urologist told him that the biopsy showed prostate cancer. He should have his prostate removed immediately. At that point, Schwitzer explains, Glynn “chose to do some homework first. One of  Glynn’s clients happened to be Richard Albin the scientist.”  Yes, the very same Richard Albin who discovered the prostate specific antigen (PSA) in 1985 and, in 2010 denounced the PSA test. Even in 1997, when he talked to Glynn, Albin had doubts as to whether PSA tests should lead directly to treatment.

Albin explained that because prostate cancers usually grow slowly. the majority of men who are diagnosed with early-stage prostate cancer, die “with” the cancer but not “from” it. If they had never been tested, they would never know they had cancer. This is why, for some years, many doctors have recommended that if asymptomatic men are diagnosed, they don’t need to rush to treatment. Instead, they may want to follow a protocol called “active surveillance”– keeping an eye on PSA levels to make sure that the cancer is not progressing. They don’t need to proceed to potentially harmful treatments unless either new symptoms or rising PSA levels suggest that something should be done.

Yet not every man feels able to “watch and wait.” When a patient hears the word “cancer,” he is likely to feel a sword hanging over his head. The fact that this particular cancer usually progresses at a snail’s pace just doesn’t register. This is one reason why the USPSTF suggests that many patients would be better off if they never had a  PSA test. (What is needed is a test that could distinguish between slow-growing and aggressive cancers.)

But Glynn was lucky. After talking to Albin, he understood. He believed that he had the information he needed, and decided to put off surgery. Nevertheless, Schwitzer reports, “Kerri Glynn, Tim’s wife of 39 years was terrified by her husband’s decision. In her mind, it was better to be safe than sorry, and safe meant being treated immediately.’” In the video, Glynn says, “She was a wreck. She was scared witless.”

Glynn’s colleagues also were concerned about his decision to forgo treatment. ‘My business partner was clearly very anxious and my assistant asked if she should look for a new job,” Glynn recalls. “And there was this fear that if this became public knowledge, there would be clients who wouldn’t want to deal with us because they wouldn’t want to engage a lawyer who would be dead the next day.”  Everyone around Glynn seemed to be descending into hysteria.

Let me be clear: “cancer” is a dreadful disease. But the media has helped fuel an irrational response to the very word, while simultaneously reinforcing our desperate belief that all cancers can be cured, if they are just diagnosed early enough. In fact, not all cancers are alike. Not all patients benefit from early detection. Some cancers will be fatal, whenever they are found. Other cancers will never bother a great many patients, even if they are never diagnosed. Some 70 percent of men who live into their 80s will die with prostate cancer, but unless they are tested, most won’t know that they are carrying the disease. Congestive heart failure, a stroke, Alzheimer’s, or another disease will seal their fate. Moreover, as Brownlee and Lenzer note, “only a tiny fraction of prostate cancers ever cause symptoms, much less death.”  Yet when most Americans hear the word “cancer,” they panic and feel that something must be done. Now. Goddamit, I’m an American.

If truth be told, pausing to consider options, odds, risks and benefits usually is the sanest response. If the cancer is not curable, a patient needs to consider what he would like to do with the time he has left. Some will elect to pursue chemotherapy, hoping to lengthen their lives by weeks, months, perhaps a year or more — though at a certain point, the quality of a cancer patient’s life is likely to deteriorate.

As oncologist Dr. Peter Eisenberg, Medical Director at California Cancer Care, explains, others will decide to take the vacation they have always dreamed of, to spend more time with loved ones –to pursue life rather than fleeing death. Let me emphasize that there are no correct answers to how one should face death. Choosing how we want to die may well be the most personal decision any of us ever make.  Some of us want to fight death to the end. Others decide to accept their mortality. What is crucial is that each of us has a chance to make the choice.

Regret — What Some Men Never Tell Their Doctors

Ultimately, Glynn decided to undergo surgery. In the video, he explains: “When you see the people around you falling apart, you sort of have to get treated for them, so you can back to a normal life.”  Glynn had done an admirable job of staying calm, but he could no longer withstand the pressure.

He had his prostate removed. “Fourteen years later,” Schwitzer observes, “he still takes drugs for impotence. It would be more than a year following surgery before he had the energy to play a set of tennis again. ‘The toll that this took on energy and physicality was like being aged five years,’” Glynn confides.

Glynn regrets  his decision, but many patients who have been treated for early-stage prostate cancer and now are suffering permanent side effects ignore the statistics, and insist that the treatment saved their lives. This is completely understandable: regret is an extraordinarily painful emotion.

Yet Darryl Mitteldorf, executive director of Malecare, a cancer-patient support group says that many men do acknowledge that they wish that they had never been tested and treated–even if they never tell their physician:  Schwitzer quotes him: “’We have men come in very upset, week after week, telling us what they’re not telling their doctors.’  One-third of men who are given a P.S.A. tests were never asked if they wanted one,” Schwitzer adds. “Of men who are asked, more than half say their doctor failed to mention possible side effects that result from treatment.”

If only Glynn’s doctor had told him he was thinking of ordering a PSA test, and given Glynn the information he needed to decide whether he wanted to open that particular Pandora’s box. Today, I hope that most doctors are telling patients that the USPSTF recommends against routine PSA testing, even if the physician disagrees. He might then go on to explain why he would recommend the test for that particular patient, as long as he makes it very clear that if the patient is treated, the 50/50 odds of serious side effects greatly outweigh the chances that any individual patient’s cancer will progress rapidly enough to harm him.

Finally, while reading Glynn’s story, I couldn’t help but wonder: should a doctor who does something to a patient without telling him be liable for a lawsuit if the treatment winds up having an adverse effect on his health?  I doubt that ordering a PSA test without informing the patient constitutes legal grounds for a malpractice suit.  Though, now that the USPSTF has warned against routine PSA testing, this might change.

Let me be clear: I am not calling for more malpractice suits. As I have said in the past, our way of dealing with malpractice is both terribly expensive and cruel for everyone involved. But I am hoping that more patients will be advised about the pros and cons of various tests and treatments.

Perhaps, as part of reform, the Centers for Medicare and Medicaid (CMS) will decide to no longer pay for routine PSA testing. Or, CMS might require a $20 co-pay. If patients were told that they had to shell out $20 for this test, but didn’t have to pay for other routine tests, many might well ask why. This would open up a conversation about the downside to PSA testing. In the end, I agree with those who say that “patient-centered” health care reform means “Nothing about Me, Without Me.”

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Should “Shared Decision-Making” Be Listed As An “Essential Benefit?” Should It Protect Doctors from Lawsuits?

The Patient Protection Affordable Care Act (PPACA) opens the door to reimbursing doctors and decision-making coaches for the time required to spell out the pros and cons of an elective procedure, and how the odds of risk and benefit might apply to a particular patient  This is a not a 10-minute conversation.

“Shared decision making” is a formal process that has been developed at a number of hospitals around the country. As I explained when I first began writing HealthBeat, Dartmouth-Hitchcock in Lebanon, New Hampshire led the way in 1999 when it opened a Center for Shared Decision Making where physicians and nurses trained as “decision-making coaches” and  learned to use various “decision-making aids” to help patients weigh their options. (See their website here). These aids include pamphlets that spell out the risks and benefits of elective procedures such as hip replacements, knee replacements, or PSA testing as well as videos featuring patients who describe how they went about making the decision—and whether they are happy with the outcome.

Patients take these “decision-making aids” home, and often view the videos more than once, with their families. When a patient returns to his doctor’s office either the doctor or a coach asks questions to test whether the patient fully understand benefits, risks and odds. Some use a roulette wheel to explain “odds.” If the patient seems confused, the coach explains further until, as one coach told me—“Suddenly, the patient’s face clears—and you know they understand.”

At that point, the doctor or nurse who is trained in shared decisionmaking begins to ask the patient questions about his own preferences, fears and priorities. Are there certain side effects that he dreads? Is he concerned that he will lose his job if rehab takes several months? Is he a risk-taker? How does he feel about uncertainty? Is the breast cancer patient’s first priority to try to preserve her breast by choosing a lumpectomy, or would she prefer to erase any uncertainty, and “get it over with” by having a mastectomy? The treatment that might be “right” for one patient will not be right for another.

Here the patient becomes an active participant in the decision-making process. In the past, we talked about patients giving “informed consent” before any elective procedure.  At the decision-making center, patients make an “informed choice” that takes their own values and temperaments into account.

Yet four years later after I began writing about shared decision making, Medicare does not reimburse for this invaluable service. Skeptics point out that the process is time-consuming. Granted, the cost of reimbursing for the provider’s time–not to mention the videos and pamphlets–cannot be ignored. We are trying to keep a lid on health care spending. Should all insurers be required to cover shared decision making as an essential benefit? Can Medicare afford it?

In truth, research suggests that shared decision making might well more than pay for itself. “Experiments with informing patients facing surgical decisions find that, on average, informed patients tend to opt for less surgery” than patients “who don’t go through the process,” note the authors of a piece that appeared in Health Affairs in April. This means that, at least in the case of surgery, more-informed patients may lean toward more “conservative treatment options that cost less.”

As health care reform becomes a reality, I hope the Department of Health and Human services will consider listing “shared decision-making” as an “essential benefit” that all insurers must cover when a patient is considering hip or knee replacement; surgery for localized low back pain; most treatments for early-stage prostate cancer; and certain end-of-life treatments for cancer patients. No one could call this “rationing”: an informed patient would be making the final decision.

But wouldn’t insurers object? Not necessarily. Inevitably, if patients are given a chance to fully consider the pros and cons of an elective procedure , some will decide against it. From an insurers’ point of view, it is likely that the savings will offset the costs .

That said,  make no mistake: the goal of shared-decision making is not to save money. Coaches are trained, not to lead patients, but to follow them. As Floyd J. Fowler Jr. and his co-authors make clear in “Informing And Involving Patients To Improve The Quality Of Medical Decisions:”  “Whatever choices patients make, a core principle of shared decision making is that  the value of benefits and risks should be determined by those who have to live with them.”

     How Reform Paves the Way for Promoting Shared Decision Making

The ground-breaking Patient Protection and Affordable Care Act (PPACA ) passed in 2010 creates a new Center for Medicare and Medicaid Innovation, which is designed to evaluate paying for innovations that might reducing costs while maintaining or improving quality.  One of the models to be tested by the Center is “Shared Decision Making.”

But, as Fowler et. al. note: “those concerned about patient-centered medicine should pay even more attention to a provision shared decision-making program was authorized, but not appropriated, under section 3506 of the Affordable Care Act. Specifically, the legislation establishes a program at the Department of Health and Human Services for the development, testing, certification, and promotion of patient decision aids to help patients, caregivers, and physicians incorporate patients’ preferences and values into medical care plans. Working to ensure that funding is appropriated for this program would greatly advance the quality of decisions.”

As health care reform moves us away from fee-for-service payments, it will be easier to incorporate shared decision-making into our health care system notes Matt Handley, associate medical director of quality and informatics for Group Health Cooperative (GHC), a  highly-rated Seattle-based health plan and provider.

For the past several years, GHC has used shared decision making in six areas: hip and knee osteoarthritis; coronary artery disease; benign prostatic hyperplasia and prostate cancer; uterine fibroids and abnormal uterine bleeding; breast cancer treatment; and back care.  Handley explains that one of the reasons GHC’s shared decision making initiative has been successful is because there is no payment-related resistance from a group practice with salaried physicians on staff: “We do not face the same challenges that most delivery systems do when physicians are worried about loss of income.”

Others suggest that shared decision-making might become a prerequisite for becoming a “medical home”– and receiving the bonuses that come with that designation.  Down the road, reformers or CMS might also consider incorporating the standards for shared decision making into the definition of an “accountable care organization.”

Shared Decision-Making Could Protect Physicians Against Lawsuits

Finally, Fowler and his colleagues point out, shared-decision-making could provide “safe harbor” protection against malpractice suits for physicians willing to engage in the process. Lawmakers in Washington State, for example, have recognized that traditional approaches to informed patient consent are not adequate in terms of incorporating patients’ feedback into medical decisions, and in 2007 the state passed a law that promotes shared decision making using approved decision aids. “The law also recognizes shared decision making with decision aids as a high standard of informed consent,” Fowler et.al. observe. “This standard provides a higher level of legal protection against malpractice in those specialties when shared decision making is involved.” Other states are considering similar legislation.

In part 2 of this post, I will consider the final two questions that the latest edition of the Health Wonk Review raises:

Should Physicians Who Want Tort Reform Give Something in Return? Should Nurses with PhD’s be Called “Doctor”?

 

16 thoughts on “The Future of Health Care Reform: Health Wonk Review Raises Some Provocative Questions:

  1. Protecting the USPSTF…hmmm..protecting a death squad when it comes to PSA. I guess I’m one of the “1 in 1400” as my PSA tested for Aggressive PC. Oops…guess we forgot to mention that PC can also have an aggressive form, which metasticises quickly.
    But why would a death squad care…we are just a just a statistic.Are you sure we don’t need protection from the USPSTF..as in you have it backwards.

  2. In an opinion piece in the New York Times, Richard Ablin, PhD, research professor of pathology, who discovered PSA in 1970, said “Using this test to screen for prostate cancer in the general population has been a hugely expensive public health disaster. “Drug companies continue peddling the tests, and advocacy groups push prostate cancer awareness by encouraging men to get screened,” he wrote. “The medical community must confront reality and stop the inappropriate use of PSA screening,” he stated. “Doing so would save billions of dollars and rescue millions of men from unnecessary, debilitating treatment.” Sometimes, while a life may be saved, a life may be taken. I have experienced for the second time in my life, the issue. It does happen, but no one emphasizes that point. I will.

  3. In response to Hoyt’s use of the “death squad” comparison above: Hoyt, no one will refuse you as many PSA tests as you would like. You may have to pay a small sum for them, but it’s entirely your decision. Please try to be more careful in your use of inflammatory and inaccurate language. You are not a child.

  4. jm, Greg, Hoyt
    jm–
    Many thanks for your comment. On this blog, we do try to avoid hysteria and phrases like “death squad.” It’s a blog for grown-ups.
    But often, it’s best if other readers explain this.
    And you are, of course, entirely right. No one is “banning” PSA tests. But they’re not likely to get first-dollar coverage — the patient will have to pay a small co-pay.
    Greg- Good to hear from you.
    I must be tired tonight; I’m not quite understanding what you are saying.
    Are you saying that on two occasions, you knew someone who had a PSA test, followed by treatment, who then died as a result of complications from treatment?
    Or are you saying that you have known two people who died of prostate cancer and were never tested?
    Hoyt–
    Please see jm’s comment and my reply.

  5. Maggie,
    I think Greg means the former and not the latter. Or at least, that’s how I read it.
    I welcome the USPSTF’s findings, unlike Hoyt. The story of Tim Glynn really resonates with me.
    My father was tested for prostate cancer twice.
    The first time he went through this, we all went through quite a bit of anxiety, and were relieved to hear there was no cancer.
    The second time, Mom and Dad elected not to tell either me or my brother about the elevated PSA or the mapping until after it was over and the results came back.
    I was quite upset. I felt I had the right to be involved in this process, even though I lived 3000 miles away at the time, and even though my parents are intelligent, well educated adults perfectly capable and well within their rights to run their own lives. I moved back to the East Coast because of this; I didn’t want to be so far away if/when something happened.
    Looking back now, I can see how I was out of line to think this way.
    Additionally, Dad suffered a complication of his diabetes as a consequence of his mapping; not from the procedure itself but from the circumstances surrounding the events of the day.
    His urologist kept getting called to ICU to deal with a critically ill patient, and postponed the procedure more than once to deal with this. Dad had to be NPO (nothing by mouth), and had of course skipped his meds.
    The procedure was delayed a third time by a pregnant woman who convinced a healthcare worker who knew her to bump her ultrasound up so she could get to a baby shower on time . . pushing Dad’s procedure back. The urologist was livid of course, but the damage was done.
    Dad had a severe hypoglycemic event in the car as he and Mom prepared to leave the hospital. It was all she could do to get a candy bar and some juice into him, and some time before he was able to safely drive home. We’re just lucky the event occurred before the car was actually in motion.
    Things like this illustrate the point Glynn is trying to make when it comes to family pressures. When someone comes down with a life threatening illness, it does not just affect one person (the patient). It affects the whole extended family and circles of friends and colleagues who genuinely care about this person and want the best for them. Human beings don’t live in a vacuum. The decisions we make or don’t make affect others.
    Once you open Pandora’s Box you can never, ever get the evils of man back into it.

  6. “What is needed is a test that could distinguish between slow-growing and aggressive cancers.”
    Isn’t that what the Gleason score is supposed to determine? The narrative about Mr. Glynn doesn’t indicate what his Gleason score was or if he even had the test. Even Memorial Sloan Kettering, despite its culture of aggressive treatment, now has hundreds of people in its now 11 year old prostate cancer watchful waiting program. Of that population, only about 25% have progressed to treatment and NONE have died from prostate cancer as of late last year.

  7. Maggie
    One died as a result of complications from the PSA test, the other died from the overreliance of the CA125 test.
    My brother-in-law developed myelodysplastic syndrome (MDS), a hematologic maligancy that is closely related to leukemia, from treatment with IMRT (radiation pellets). This kind of concentrated treatment can cause this.
    Ironically, Dr. Herman Kattlove, a retired medical oncologist and former medical editor for the American Cancer Society, where he helped develop much of the information about specific cancers that is possted on their website, pointed out on a June posting on his private cancer blog about radiation being a causal factor in this disease.
    He asked the question: Is MDS cancer? He thinks it is and so do most cancer specialists. It just acts differently, but the end result – incurable – is just the same. Treatment-related MDS or secondary MDS is often more severe and difficult to treat than de novo MDS (unkown changes to the bone marrow). A year after he had treatment, he developed MDS. He lasted about six months.
    It does happen, but no one emphasizes that point. An indolent cancer was diagnosed, patient was scared into treatment and died as a result of that treatment (a slow, agganizing death).
    Another relative was scared into treating his prostate cancer, after the PSA test, with the da Vinci surgical procedure. Within months, he began having urinary incontinence. It was hard enough to get that information out of him, he would absolutely not talk about any impotence.

  8. Barry, Greg, Panacea,
    Barry–
    A Gleason scores don’t tell us whether the cancer will progress or not.
    We just don’t have a reliable way to test for prostate cancer that tells us anything about how agressive the cancer is. In other words, we have no tets that give patients any useful info about what to do.
    Probably 99 percent of average risk patients diagnosed with early stage prostate cancer should be in “watchful waiting” programs. Their odds of never being harmed by the diesease are much greater than the chances that they would be hurt by any type of treatment. .. (And we have no evidence that any of the available treatments actually save lives, though some are extremely expensive.)
    Bottom line: Today,if a patient had never been tested, he never would have had to endure the stress of worrying about having cancer. Stress also kills.
    This is why the Task Force decided (along with many doctors in recent years) that routine screening for prostate cancer just isn’t helpful.
    Finally, keep in mind that there is no evidence that any of the treatments that we now have for prostate cancer reduce mortalities.
    Greg–
    Thank you very much for the clarification. I thought that was what you meant (see my reply to Pancea).
    As you say, when patients are “scared into treatment” the results can be as bad, or worse, then ddying of cancer. (Worse, n part, because they think they are being cured, and are put through unncessary pain, while being “protected” from the knowledge that they have a fatal disease, and the stages of denial, grief etc. that utlimately can lead to peace, and acceptance of death.
    Panacea–
    Yes, that is what I thought Greg meant. But I wanted him to make it clearer, so that everyone would understand what he was saying.
    (You are a long-time HealthBeat reader, as is Greg, and so you and I know him well enough to guess what he meant. But new readers might not.)
    Panace, I am very sorry about your father. What you say about the impact on the whole family rings true. You are lucky to have grown up in a famiy where people are that clsoe.
    Btw,I think it was loving of you to move back to the East Coast when you realized your Dad might be in trouble. At the same time, I understand what you are saying about hindsight. I realize how parents and adult children can go too far in trying to protect each other.

  9. Maggie,
    You need to check your facts in regard to Gleason scores and prognosis. You are wrong on this. Please correct your statement.

  10. Tony,
    I did double-check, as you requested.
    I’m afraid you are mistaken.
    In theory, a high Gleason score correlates very roughly with how aggressive prostate cancer may be but in fact, as the WAll Street Journal explains:
    “Most Gleason scores fall in the middle; and some men with low Gleason scores have cancer that spreads quickly, while some with high scores don’t'”
    Then there is this from the medical journal Radiology:
    “Our ability to predict biologic aggressiveness of tumors is still based on the histologic appearance of prostate cancer as assessed with the Gleason grading system, which has substantial limitations.”

  11. Maggie,
    From the ‘AJCC Cancer Staging Manual Handbook’ turn to page 531.
    “Recent studies have demonstrated that the Gleason score provides extremely important information about prognosis”. “In an analysis, conducted by the Radiation Therapy Oncolocy Group (RTOG), of nearly 1500 men treated on prospective randomized trials, Gleason score was the single most important predictor of death from prostate cancer.
    This staging manual is used across the US. You would find a wealth of informatin in the book and it doesn’t cost much.

  12. Tony–
    There has been a lot of misinformation out there about prostate cancer– and many people haave been making money on that misinformation.
    Meanwhile, even doctors have been mis-led by the misinformation.
    The Preventive Services Task Force has no axe to grind. No one writing for the Journal Radiology will make money by warning that the Gleason score has serious limitations.
    The fact is that in many cases, men with a high Gleason score have not seen their cancer spread while men with a low Gleason score have.
    This is why the Preventive Services task force no longer recommends the PSA test followed by a biopsy to check the Gleason score.

  13. Maggie,
    I don’t believe the American Joint Committee on Cancer (AJCC) has an axe to grind nor do they make money off prostate biopsies or PSA tests. Check the NCCN Guidelines for prostate cancer. The fact is the Gleason score is a major prognostic factor.

  14. Tony–
    My last comment: The AJCC is in the business of “staging cancer” (which means predicting if it will spread and how quickly.)
    It is not in their interest to say “we can’t stage Prostate cancer” or that attempts at staging are riddled with uncertainty.
    But here is what scientists who are looking at medical evidence say about Gleason scores tell us: “Although the Gleason score is the standard grading system, studies have found problems with interobserver variability of this score. Aggregating scores into the 3 categories of well, moderate, and poor differentiation improves reliability. Another problem is the agreement between Gleason scores based on biopsy specimens and scores based on larger amounts of tumor on surgical pathology specimens. One study found 74% agreement within a Gleason score of ± 1 between prostatectomy and biopsy specimens. The number of specimens overgraded and undergraded was similar.”
    If an asymptomatic man is told he has a Gleason score of 8, and on that basis, goes ahead with surgery, there is a 1 in 200 chance that he will die of complications from that surgery.
    The odds that a man experiencing no symptoms will die of prostate cancer are much,much lower.
    IF he undergoes radiation treatment the odds that he will wind up impotent or incontinent are much, much higher than the odds that he will die of prostate cancer.
    But once he is told his Gleason score and told that according to the AJCC “this is the single most important predictor” —( and is not told that Gleason scores are not terribly reliable, have serious “limitations” and in many cases the Gleason score “overgrades” the cancer) the patient who is told his Gleason score is high is likely to feel that he must go ahead with treatment. Psychologically, it is very difficult for many men to choose “watchful waiting”– even though the medical evidence says that this is the prudent course.
    The is why even the American Cancer Society no longer recommends routine PSA testing and biopsy (to discover Gleason score.)
    Instead the ACS says that ta physician should describe the risks of PSA testing– as well as possible benefits– going through all of the medical evidence with the patient in a process called “shared decision-making”— and then let the patient decide.
    But the doctor should not recommend the PSA test (and the biopsy that follows.)
    For the ACS to say this is remarkable– especially given the pressure on the ACS, from those who profit from prostate cancer treatment, to continue recommend routine testing.

  15. In response to the use of Hoyt of “death squads” above comparison: Hoyt, nobody will deny that the PSA test, as much as you want may have to pay a small sum for them, but. it is entirely your decision. Please try to be more careful in the use of inflammatory language and inaccurate. Not a child.

  16. I disagree with your conclusion that the evidence is clear that the risks of PSA screening outweigh the benefits. I think the scientific evidence is more consistent with a C rating (screening should be based on individual circumstances and values).
    What are my arguments?
    1. The existing studies have insufficient sample size to tell whether PSA screening affects overall mortality. Even the meta-analysis is too small a sample size. With an overall mortality rate of 10%, you would need an infeasible sample size of millions of participants to detect a screening effect, given likely mortality effects of screening.
    2. In the European study, the point estimates for overall mortality are consistent with the estimated reduction in prostate cancer mortality being fully reflected in a reduction in overall mortality. However, as the sample size is too small, the confidence interval is too wide to make definitive statements.
    3. Given that the reduction in prostate cancer mortality in the European study includes deaths due to prostate cancer surgery and biopsy, it is difficult to see what would be the overall mortality offsets to the reduction in prostate cancer mortality.
    4. If the screening effect of reducing deaths by one person in over 1000 screened is too small to detect on overall mortality (although detectable in reduced prostate cancer mortality), is it too small to offer net benefits? No, because the main benefits and costs of screening are the benefits and costs of treatment. So the key number is not the “number needed to screen” to reduce one prostate cancer death, but the “number needed to treat”.
    5. The average result in the European study was an NNT of 48, or a 2% reduced risk of death per treatment. But this is as of an average follow-up of 9 years after the screening experiment began. It is clear that the mortality reduction grows over time. After 12 years, the NNT is 18 treated to reduce one death, which translates into treatment reduces the probability of death by over 5% as of 12 years after screening was begun.
    6. So the relative risks are this: does it make sense to treat prostate cancer detected via screening if the treatment reduces the risk of death by 5% after 12 years vs. a 30 to 50% risk of serious side-effects? I do not think that is a clear-cut choice. I think some men would choose to be treated, and other men would not.
    7. Therefore, men should be informed before agreeing to screening of the relative risks of treatment for death vs. side-effects. The optimal choice varies with your family history, and your personal values.