ACS to make major shift in cancer screening guidance


According to an article by Gina Kolata in the New York Times today, the American Cancer Society is working on a major revision of its guidelines on cancer screening — not just for prostate cancer but for many forms of cancer.

Our attitudes to cancer screening have been based, historically, on the idea that cancers were “deadly” by the time they were discovered. And in the 1950 and 1960s that tended to be true. The idea that all cancers are “deadly” led to the idea that if we could identify them before they became “deadly,” then we could eliminate the cancer and cure the patient. However, there were always two fallacies in that idea. The first was that all cancers really are deadly. The second was that all cancers, if found early, are curable.

Mass, population-based “screening” for cancers such as breast, colon, cervical, and prostate cancer became popular as appropriate (but not necessarily highly accurate) tests became available to monitor men and women for these disorders (mammography, colonoscopy, Pap smears, and PSA testing), and every relevant physician group supported such testing because not only did it seem to make sense, it also seemed to work — in a previously unscreened population. Furthermore, such screening — at least in America — came with an economic benefit to selected groups of specialized physicians who carried out the relevant tests: radiologists (mammography), gastroenterologists (colonoscopy), gynecologists (Pap testing), and urologists (PSA testing). In addition, a broad range of patient advocacy organizations ardently supported such mass screening programs because — for survivors — if your cancer was caught early then everyone else’s should be too.

It is time for us to take a step back and look at the whole issue of cancer screening with unblinkered eyes. We need to put aside our personal biases and opinions and look at the very best data we have through the very best spectacles we can afford. And we also need to know this … the data we have is not good enough. The largely  epidemiological data on which the premise of screening has historically been based is filled with assumptions and presumptions. The screening trials done to date are flawed, and have been filled with patients who either didn’t follow the protocols (clearly the case in the prostate cancer data from the PLCO trial published this year) or were used to justify screening of categories of men and women who weren’t enrolled in the trials at all.

The “New” Prostate Cancer InfoLink encourages the American Cancer Society to develop and issue new guidance about cancer screening. It also encourages every specialist physician group to look really hard at its own cancer screening guidance documents and determine whether they have been developed exclusively in the best interests of patients. Whatever the American Cancer Society comes up with is going to be met with a storm of protest from a thousand other interest groups — but it is time for us as a society to rethink our mindset about cancer screening and put some very real priorities in place:

  • The fundamental objective of testing an individual for risk of any cancer should be to document the presence of a potentially clinically significant cancer, so that the patient and his or her doctor may take mutually agreed actions.
  • In the majority of cases, mass, population-based cancer screening programs do not lead to a reduction in mortality.
  • Well-defined risk factors can and should be used to identify individuals to high risk for certain types of cancer, and those individuals should be carefully monitored for the presence of that form of cancer.
  • Early treatment for some forms of cancer come with significant clinical and psychological side effects that can profoundly affect the patient and his or her family (think double mastectomy and radical prostatectomy).
  • A major investment is needed in better diagnostic and prognostic tests that can better identify patients with forms of cancer that really need aggressive treatment.
  • Every patient should understand the risks and benefits of any cancer test, and should be very carefully advised about the consequences of a positive test result before being given the test in question.

The “New” Prostate Cancer InfoLink expects to receive a lot of “flak” about this particular commentary, but we are adamant about the need for a whole new attitude to cancer screening — an attitude that is based fundamentally on the very best interests of the patient with clinically significant cancer that needs to be found and on the very best interests of consumers in whom it may well be possible to identify cancer cells but who need to know that this form of cancer is of little clinical relevance to their lives.

7 Responses

  1. American Cancer Society mission statement: The American Cancer Society is the nationwide, community-based, voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service.

    We all know that patients make decisions, sometimes poor ones, when they hear they have cancer — mostly because they don’t understand that not all cancer is lethal. Since the public’s lack of knowledge of this [is crucial] I question who the ACS is providing education to. Perhaps an addition to the mission statement is in order … Instead of teach, don’t screen?

    Common sense tells us that both indolent and aggressive cancers should be monitored at the very least. A step away from screening will lead to less indolent cancer detection, and more advanced cancer detection. That fact I am certain will come out …

  2. And just to add to the confusion, the ACS has today issued the following statement from Otis W. Brawley, MD, Chief Medical Officer, American Cancer Society in Response to New York Times Article on Cancer Screening:

    MAIN HEADING:

    American Cancer Society Stands by Its Screening Guidelines; Women Encouraged to Continue Getting Mammograms

    TEXT:

    Atlanta – October 21, 2009 – “Today’s New York Times article ‘In Shift, Cancer Society Has Concerns on Screening’ indicates that the American Cancer Society is changing its guidance on cancer screening to emphasize the risk of overtreatment from screening for breast, prostate, and other cancers.

    “While the advantages of screening for some cancers have been overstated, there are advantages, especially in the case of breast, colon and cervical cancers. Mammography is effective – mammograms work and women should continue get them. Seven clinical trials tell us that screening with mammography and clinical breast exam do reduce risk of breast cancer death. This test is beneficial in that it saves lives, but it is not perfect. It can miss cancers that need treatment, and in some cases finds disease that does not need treatment. Understanding these limitations will help researchers develop better screening tests. The American Cancer Society stands by its recommendation that women age 40 and over should receive annual mammography, and women at high risk should talk with their doctors about when screening should begin based on their family history.

    “The bottom line is that mammography has helped avert deaths from breast cancer, and we can make more progress against the disease if more women age 40 and older get an annual mammogram.

    “Since 1997 the American Cancer Society has recommended that men talk to their doctor and make an informed decision about whether or not prostate cancer early detection testing is right for them. This recommendation also still stands.

    “Cancer is a very complex and complicated disease. The American Cancer Society makes evidence-based cancer screening recommendations, and strives to provide clear messages about cancer screening to patients and doctors. Our guidelines are constantly under review to evaluate them as new evidence becomes available. Simple messages are not always possible, and over-simplifying them can in fact do a disservice to the very people we serve.”

    The American Cancer Society combines an unyielding passion with nearly a century of experience to save lives and end suffering from cancer. As a global grassroots force of more than three million volunteers, we fight for every birthday threatened by every cancer in every community. We save lives by helping people stay well by preventing cancer or detecting it early; helping people get well by being there for them during and after a cancer diagnosis; by finding cures through investment in groundbreaking discovery; and by fighting back by rallying lawmakers to pass laws to defeat cancer and by rallying communities worldwide to join the fight. As the nation’s largest non-governmental investor in cancer research, contributing about $3.4 billion, we turn what we know about cancer into what we do. As a result, more than 11 million people in America who have had cancer and countless more who have avoided it will be celebrating birthdays this year. To learn more about us or to get help, call us anytime, day or night, at 1-800-227-2345 or visit.

  3. I think what bothers me most is the way the two cancers are seen so differently but are in fact very similar. I would be much happier if they were treated the same way by ACS et al.

    Gee … maybe the letter above is a political response? Wonder how many calls and emails ACS got today from breast advocates and how many calls and emails they got from prostate advocates?

  4. The FACT is that there is NO reliable way to determine, with any certainty, which prostate sancers (PCa) will remain indolent and which are to progress to life-threatening status. If such technology and expertise were available, PCa would not subject newly diagnosed patients to the treatment quandary in which they find themselves.

    There should be little doubt, to any logical mind, that the introduction of the PSA blood test and the substantial increase in aggressive treatment due to the widely acknowledged transition in presenting diagnosis, from predominantly “ADVANCED” cases in the pre-PSA era to equally statistically predominate “EARLY STAGE” disease today has saved many lives from PCa death.

    In the PRE-PSA era (the very late 1980s backward) roughly 3 of every 4 men diagnosed, were found to have advanced disease and 65% of those already exhibited metastases. Today, enjoying the benefit of the PSA era (essentially the 1990’s forward), which according to the NCI division of the NIH, has advanced PCa detection by 7 to 9 years, the exact statistical reversal now exists, with over 3 of every 4 men diagnosed exhibiting EARLY STAGE disease.

    During roughly this same time period (the PSA era), the number of deaths directly attributable to PCa has DECLINED by approximately 40%. This is true, in spite of the steady expansion in the size of the age groups composing the risk pool of those most likely to acquire the disease. These are raw figures, not subject to the risk of manipulation that can sometimes taint “adjusted” data.

    What then is the likely reason for this rather dramatic decline in PCa mortality? Has there been any dramatic new discovery in treatment that has substantially extended the expected individual or collective survival rate? NO!

    The logical answer, and in my opinion reasonably supported by the limited statistical data available, is that the acknowledged advance in diagnosing PCa at a curable stage and the resulting increase in the application of aggressive treatment has been the likely cause of the most substantial mortality decline of any cancer, in the last 20 years.

    It is easy to talk broad statistics and draw conclusions based on collective numbers but that does not address the crux of the diagnostic dilemma: WHICH individual patient’s malignancy is going remain indolent and WHICH individual patient’s cancer is going to advance? Is there some over-treatment in individual cases? Undoubtedly, just as there is under-treatment in some individual cases. But, what is the alternative? Do away with the most successful warning marker in the history of cancer? Wait until there are clinical symptoms and return to the dismal statistical results of the past?

    You, Schwitzer and others who WRITE about this disease, rather than personally live it, are great at stating the obvious. “We need to have better diagnostic tests.” Of course we do but we don’t have them now, and to discourage the use of what we do have, because it is not perfect is to me, irresponsible. If we only tested men with a family history of PCa, we would miss the majority of PCa tumors that are found to exist today. I don’t favor mass screening, mainly because we don’t yet know what to do with the results, but I heartily endorse the screening of individual patients, interested in their health, who are seeing physicians. In my opinion, instead of encouraging that time be spent explaining the ins and outs of the PSA debate before ordering a PSA test, that same time would be far better spent educating patients about the true significance of their PSA results.

    It very easy to state the problems, to attack the weaknesses in present system, to bandy about the obvious, but it is much more difficult to provide true solutions. Until something better is proven to perform better at as reasonable a cost, get your PSA. Once you have the results, THEN you can decide its significance and what action, IF ANY, you wish to take for follow-up. Without having taken it, you know NOTHING. To NOT have a PSA test because you MAY have to make a difficult decision, based upon the results, is not only unwise, but cowardly. By having a baseline PSA at 40 years of age, while the potential effect of significant benign prostate hyperplasia (BPH) is low, you have the best chance of establishing a “normal” PSA, for YOU. Such information could help immensely in that decision-making process. It is not enough to keep stating where we want to go, we need to create a map and outline the specific route(s) to get there.

    How does my PSA compare to other men in my age group? Dr. Catalona at Northwestern did a study that detected the following median PSA levels (50% above/50% below), for the following age groups: men in their 40s = 0.7 ng/ml; men in their 50s = 0.9 ng/ml; men in their 60s = 1.3 ng/ml; men in their 70s = 1.7 ng/ml. These represent typical levels of PSA found in these groups and are NOT absolutes, but they do provide some ROUGH guidelines as to what could be considered to be somewhat “normal” for these age groups. The basis for the making of informed decisions can be enhanced by knowing such data, if it is used in proper perspective.

    It is about time you quit hiding behind the broad moniker of “The New Prostate Cancer InfoLink thinks”, as if the statements were the collective work of some broader spectrum, when in most instances they are an expression of your personal thoughts and opinions. There is nothing wrong with this, EXCEPT such opinion pieces should be attributed to the author, whose name ought to appear. Isn’t it also time to drop the “new” from the identification, you no longer are “new”. Let’s quit the handwringing, quit talking only in broad generalities and try to offer some specific solutions that contain the “how” to do it, rather than just stating “why”, in your opinion, things need to change.

    More contemplation and less pontification would be a welcome and productive change! – John@newPCa.org. (aka) az4peaks

    John E. Holliday, FACMPE

  5. I just wrote the note below to Dr. Len Lichtenfeld on his ACS blog.

    “I am concerned because there appears to be a double standard in the way ACS views prostate cancer vs breast cancer. I wish they would look at them and treat them with parity. As a woman I want good clear communication about breast cancer risks and potential harms so I can make good personal decisions but at the same time as a prostate cancer advocate it is necessary for men to have information at a similar level. Recommendations should be similar for both cancers with education about the risks and benefits prior to screening and then if there is a diagnosis there should be additional discussion with details that lead to as much of a differential diagnosis as possible. ACS has the responsibility to educate the public that not all cancers are killers and to educate the physicians about how to make a differential diagnosis. In the prostate cancer world what we hear too often is that prostate cancer is slow growing and that men will die with it rather than from it. The article in JAMA highlights that fact. The problem is that we still have 28,000 men dying a difficult death from prostate cancer each year, almost the number of women who died from breast cancer. When I began as a prostate cancer advocate 10 years ago the number of people who died of each cancer was similar. Since we began PSA screening the number of yearly deaths has dropped significantly more quickly than for breast cancer. I just wish that both cancers would be held to the same standards. Unfortunately the prostate cancer community does not have the legions of advocates that breast cancer does. As the JAMA article points out the cancers are very similar and should get similar focus from the ACS. Unfortunately I do not see similar focus from the ACS. I sometimes wonder if things would be different if men were better advocates?”

  6. In my current National Prostate Cancer Awareness Tour since this past June, I’ve encouraged men to get an annual PSA and DRE exam. I still argue for this even after reading and hearing the American Cancer Society’s new or not-so-new position about refraining from PSA exams.

    As author of a book, Conquer Prostate Cancer (conquerprostatecancer.com), I was privileged to have a lengthy personal conversation with the ACS’s Chief Medical Officer, whose thoughts cited both in the New York Times and two days ago on ABC Evening News, began the current firestorm of actions and reactions on the part of countless patients, survivors, and doctors — as well as women, since he tied prostate and breast cancer screening together.

    In response to his personal comments to me 3 months ago — which he publicly reiterated these past few days, I told him that ignorance is not bliss, and that every man has the right to know what’s going on inside his own body. So does every woman who is a man’s significant other, have a right to know what’s going on inside his body, as well as her own vis a vis annual mammograms. In my view It’s only then that a man, in discussion with his spouse/partner and doctor, can and should determine if he’s likely to need a biopsy, which I believe will be the case in most instances where his PSA has gone up a point or more in a year.

    In my view the problem is not whether men need a PSA exam or a biopsy. Rather the question becomes what treatment option he needs to choose, whether it be active surveillance, some form of radiotherapy, or a prostatectomy, and perhaps some subsequent treatment like salvage radiotherapy or hormone therapy — all of which are far more aggressive than watchful waiting.

    It seems to me that the main problem is not “PSA, yes or no” or “Biopsy, yes or no.” The real issue is that our science is flawed. We are now only on the brink of discovering which cancers are likely to become more aggressive … requiring corresponding aggressive treatment, and which are not and therefore only require active monitoring.

    The second scientific disconnect right now is that biopsies themselves are random “samplings” — whether a doctor uses six, eight, 10, 12, or more core tissue samples to identify if the prostate has a tumor. Trust me I know, since 2 years before my prostatectomy there was no evidence of prostate cancer in an earlier biopsy, and then in January 2007 another biopsy suddenly revealed the presence of a tumor, which proved to be contained in the prostate with bone and CAT scans.

    We also have to take into account the human factor. Is a man going to become nerve-wracked wondering if he has cancer that will compromise his health and might even kill him — if he’s among the 80% of those newly diagnosed with early prostate cancer. OR is a man going to be less anxious in the absence of a test, because he assumes he’s in good health due to the absence of any symptoms of prostate cancer? We have to allow every man — again in conjunction with his doctor and a full understanding of the risks and benefits of each treatment option, to decide for himself whether or not to do any form of screening and subsequent tests. It’s up to the patient to make that decision, in conjunction with his significant other.

    Ultimately this should not be a decision made by his doctor alone and certainly not by the public healthcare system or by a private, voluntary organization with its conflicting guidelines, to wit, the American Cancer Society, based in large measure on flawed and incomplete data.

    For all this, I would argue that the basic premise of Dr. Arnon Krongrad’s comments which we’re responding to here, is correct. (Though it’s stated in the plural under the rubric of the “New” Prostate Cancer Info Link of which he is founder and implied “editor-in-chief”.) That premise is that doctors have to be far more detailed in their explanation of the pros and cons of any action taken to determine if a man has prostate cancer, and a doctor needs to be far more detailed and BALANCED in depicting the risks and benefits of any of the many treatment options a man can take when a tumor is diagnosed.

    Above all doctors need to work in partnership with their patients to spell everything out and to offer comprehensive assessments verbally and in writing.In addition patients need to be as proactive as possible by reading recommended, current literature by doctors and “expert” prostate cancer patients like myself and others, before rushing to judgment.

    After all the one thing we can agree on is that prostate cancer is slow-growing. So taking your time to determine what’s in the best interest of each particular patient is a common denominator we can and should all agree upon.

  7. Good — now I can stop being outraged that the guidelines weren’t revised when the screening studies first came out.

    I wonder how long it will take for this to make a difference in what happens in the doctor’s office? The truth about prostate cancer remains too hard to explain during a 15- or even a 30-minute office visit.

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