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A holiday round in the mammography debate

There are times when the best-laid blogging plans of mice and men often go awry, and this isn’t always a bad thing. As the day on which so many Americans indulge in mass consumption of tryptophan-laden meat in order to give thanks approached, I had tentatively planned on doing an update on Stanislaw Burzynski, given that he appears to have slithered away from justice yet again. Then what to my wondering eyes should appear in my e-mail in box but news of a study that practically grabbed me by my collars, shook me, and demanded that I blog about it. As if to emphasize the point, suddenly e-mails started appearing by people who had seen stories about the study and, for reasons that I still can’t figure out after all these years, were interested on my take on the study. Yes, I realize that I’m a breast cancer surgeon and therefore considered an expert on the topic of the study, mammography. I also realize that I’ve written about it a few times before. Even so, it never ceases to amaze me, even after all these years, that anyone gives a rodential posterior about what I think. Then I started getting a couple of e-mails from people at work, and I knew that Burzynski had to wait or that he would be relegated to my not-so-secret other blog (I haven’t decided yet).

As is my usual habit, I’ll set the study up by citing how it’s being spun in the press. My local home town paper seems as good a place to begin as any, even though the story was reprinted from USA Today. The title of its coverage was Many women receiving unnecessary breast cancer treatment, study shows, with the article released the day before the study came out in the New England Journal of Medicine:

Up to 70,000 American women a year are treated unnecessarily for breast cancer because they were screened with mammograms, according to an analysis in today’s “New England Journal of Medicine” that’s likely to reignite a running debate over the value of cancer screening.

The study, whose results are already being challenged by other cancer experts, finds that nearly one in three breast cancer patients – or 1.3 million women over the past three decades – have been treated for tumors that, although detectable with mammograms, would never have actually threatened their lives.

The study lays bare perhaps the greatest risk of cancer screening, called “overdiagnosis,” long acknowledged by doctors and even advocates of mammograms, but unknown to most women who undergo the procedures.

That’s actually a fairly sober assessment, as was this one by the LA Times:

About a third of all tumors discovered in routine mammography screenings are unlikely to result in illness, according to a new study that says 30 years of the breast cancer exams have resulted in the overdiagnosis of 1.3 million American women.

The report, published Thursday in the New England Journal of Medicine, argues that the increase in breast cancer survival rates over the last few decades is due mostly to improved therapies and not screenings, which are intended to flag tumors when they are small and most susceptible to treatment. Instead, the widespread use of mammograms now results in the overdiagnosis of breast cancer in roughly 70,000 patients each year, needlessly exposing those women to the cost and trauma of treatment, the authors wrote.

My first thought was: Here we go again. My second thought was: Wow. The result that one in three mammographically detected breast cancers might be overdiagnosed is eerily consistent with a study published three years ago that looked at mammography screening programs from locations as varied as the United Kingdom, Canada, Australia, Sweden, and Norway, which I discussed at the time it was released. The consistency could mean either convergence on a “true” estimate of overdiagnosis, or it might mean that both studies shared a bias, incorrect assumption, or methodological flaw. If they do, I couldn’t find it, but it’s still an intriguing similarity. In any case, let’s dig in. The article is by Archie Bleyer and H. Gilbert Welch (the latter of whom has featured prominently in this blog several times before) and is entitled Effect of Three Decades of Screening Mammography on Breast-Cancer Incidence.

Overdiagnosis and overtreatment in diseases we screen for

Before I go on I feel obligated to point out, as I always do when this subject comes up, that what I am referring to here are breast cancers detected by screening mammography in asymptomatic women. I cannot emphasize this enough. This study (and most of the studies I blogged about above) do not apply to women who have detected a lump, suspicious skin change, or any other symptoms of breast cancer. For such women, as far as we’ve been able to ascertain, the likelihood of overdiagnosis is vanishingly small. These cancers will almost certainly progress. Therefore, this study and my post do not apply to these cancers. If you feel a lump in your breast, get it checked out. If it is cancer, it will not fail to progress, nor will it go away. Again, I cannot emphasize this enough.

Regular readers are, I hope, familiar with the concept of overdiagnosis. After all, both Harriet Hall and I have written a fair amount about it before; so I’ll hope those who’ve read our discussions will bear with me a moment as I review the concept for those who might not be familiar with the concept. In doing so, I’ll steal shamelessly from my previous writings, after pointing out that it four and a half years ago when I first pointed out that the relationship between early detection of cancer—any cancer—and improved survival is more complicated than most people, even most doctors (including oncologists), think.

Screening for a disease involves subjecting an asymptomatic population, the vast majority of whom don’t have the disease, to a diagnostic test in order to find the disease before it causes symptoms. This is very different from most diagnostic tests used in medicine, the vast majority of which are ordered for specific indications. Any test to be contemplated for screening thus has to meet a very stringent set of requirements. First, it must be safe. Remember, we’re subjecting asymptomatic patients to a test, and invasive tests are rarely going to be worthwhile, except under uncommon circumstances (colonoscopy screening for colon cancer comes to mind). Second, the disease being screened for must be a disease that is curable or manageable. It makes little sense to screen for a disease like amyotropic lateral sclerosis (Lou Gehrig’s disease) because there is very little that will slow its progression. The one drug that we do have, Riluzole, only slows the progression of ALS slightly. Thus, diagnosing ALS a few months or a few years before symptoms appear won’t change the ultimate outcome. A very important corollary to this principle is that acting to treat or manage a disease early, before symptoms appear, should result in a better outcome, and the authors of this study point this out. I’ve discussed the phenomenon of lead time bias in depth before; it’s a phenomenon in which earlier diagnosis only makes it seem that survival is longer because a disease was caught earlier when in reality treatment had no effect on it. The condition progresses at the same rate as it would without treatment. Lead time bias is such an important concept that I’m going to republish the diagram I last used to explain it, because in this case a picture is worth a thousand words:

Lead time bias

Then there’s this graph, from this paper, that demonstrates how screening preferentially detects less aggressive cancers (more details in my post here):

Another requirement for a screening test is that the disease being screened for must be relatively common. Screening for rare diseases is simply not practical from an economic standpoint. Economics aside, it’s bad medicine, too, because vast majority of “positive” test results will be false positives. Another way of saying this is that the specificity of the test must be such that, whatever the prevalence of the disease in the population, it does not produce too many false positives. In other words, for less common diseases the specificity and positive predictive value must be very high (i.e., a “positive” test result must have a very high probability of representing a true positive in which the patient actually does have the disease being tested for and the false negative rate can’t be too high; either that, or screeners must be prepared to do a lot of confirmatory testing for a large number of false positives). For more common diseases, a lower positive predictive value is tolerable. The test must also be sufficiently sensitive that it doesn’t produce too many false negatives. Remember, one potential drawback of a screening program is a false sense of security in patients who have been screened, a drawback that will be increased if a test misses too many patients with disease. Finally, a screening test must also be relatively inexpensive.

So what is overdiagnosis? Stated simply, overdiagnosis is a term used to describe disease detected in asymptomatic individuals that would never go on to threaten the life or health of those individuals. Many people subscribe to a simplistic view of cancer in which after the initial transforming event occurs to create a cancer cell the cancer will inevitably progress over time until, if left untreated, it will kill the individual. In such a view, detecting cancer earlier is an unalloyed good because it is assumed that, if left untreated, such tiny cancers will inevitably progress. However, as I first started to point out a few years ago, this is not necessarily true. people have a lot of cancer in them that never causes a problem. For instance, it’s well known that autopsy series reported on who died at age 80 or older have consistently shown that the majority of men over 80 (60-80%) have detectable foci of prostate cancer. Yet, obviously prostate cancer didn’t kill the men in these autopsy series, and they lived long enough to die either of old age or a cause other than prostate cancer. In other words, they died with early stage cancer but not of that cancer. Similarly, thyroid cancer is pretty uncommon (although not rare) among cancers, with a prevalence of around 0.1% for clinically apparent cancer in adults between ages 50 and 70. Finnish investigators performed an autopsy study in which they sliced the thyroids at 2.5 mm intervals and found at least one papillary thyroid cancer in 36% of Finnish adults. Doing some calculations, they estimated that, if they were to decrease the width of the “slices,” at a certain point they could “find” papillary cancer in nearly 100% of people between 50-70.

The list of conditions and diseases for which screening has increased apparent incidence goes on and on far beyond cancer.

One might ask what the problem is with overdiagnosis; i.e., what’s the harm? The harm arises from the consequence of overdiagnosis, which is overtreatment. If the screen-detected condition, be it tumor or other medical condition, would never progress to harm the patient even if untreated, then “treating” that condition can only cause harm, not benefit. That’s not even counting the risks from additional followup studies that are frequently required when a screening test finds an abnormality. In the case of breast cancer, the subject of the current study, those additional tests might mean more images (and the extra radiation they involve), invasive needle biopsies, and even surgical biopsies. In the case of screening for lung cancer, biopsies are more risky than for breast cancer, given the large blood vessels in the lung and the ease with which the a pneumothorax can occur. All mass screening programs involve a tradeoff, a balancing of risks and potential benefits, and it’s not even always clear how great the benefits might be. For instance, lead time bias can lead to an overestimation of benefits of treatment and a huge apparent increase in survival even if treatments don’t have an effect on the disease. That’s why mortality rates are the appropriate metric, not five-year survival rates, when evaluating a disease for which lead time bias is a consideration. It’s also why, when we do use survival rates in cancer, in order for them to be comparable they have to be stage-adjusted.

On to the study

In order to understand Welch’s study, it is important to realize that there is a huge assumption underlying its methods. That assumption, although reasonable, is not unassailable (more on that later). Specifically, as Welch states in the very first paragraph:

There are two prerequisites for screening to reduce the rate of death from cancer.1,2 First, screening must advance the time of diagnosis of cancers that are destined to cause death. Second, early treatment of these cancers must confer some advantage over treatment at clinical presentation. Screening programs that meet the first prerequisite will have a predictable effect on the stage-specific incidence of cancer. As the time of diagnosis is advanced, more cancers will be detected at an early stage and the incidence of early-stage cancer will increase. If the time of diagnosis of cancers that will progress to a late stage is advanced, then fewer cancers will be present at a late stage and the incidence of late-stage cancer will decrease.3

In other words, a screening test that does not overdiagnose will find cancers earlier. These cancers will be successfully (or at least more successfully) treated, and thus pulled out of the pool of early stage cancers that are progressing to late stage cancers. This removal of early stage cancers from the total pool of cancer diagnoses should thus shift the stage distribution of breast cancer to earlier stages and result in an absolute decrease in the number of late stage cancers being diagnosed. In other words, as the number of cancers being detected early goes up, the number of cancers being detected at advanced stages, particularly at stage IV (which can be treated but not cured), should go down. Thus, the overall hypothesis is that, if mammography is effective, there should be an increase in the incidence of early stage cancer diagnosed and a corresponding decrease in the incidence of late stage cancer. If the diagnosis of early stage cancer increased faster than the diagnosis of late stage cancer decreased that likely represents overdiagnosis.

To test this hypothesis and try to estimate the amount of overdiagnosis going on, Welch used the Surveillance, Epidemiology, and End Results (SEER) database to examine stage–specific incidence of breast cancer over time. This database covers approximately 10% of the U.S. population. Using such a database was complicated by two issues. First, the authors had to choose a baseline, more specifically, a time period that they set as their baseline breast cancer incidence for cancers detected without mammography. For various reasons, including an underestimate in the earliest years of the SEER database in the early 1970s and because of a brief spike in breast cancer diagnoses in the wake of Betty Ford’s diagnosis, the authors chose 1976 to 1978 as this baseline. Second, there was a period from the late 1980s to early 2000s when hormone replacement therapy with mixed estrogen-progesterone combinations was popular and is widely believed to have increased the incidence of breast cancer. This time period, according to the authors, ended in 2006. To correct for this in current estimates of breast cancer incidence from 2006 to 2008, they truncated the observed incidence from 1990 to 2005 to remove “excess” cases from previous years. This part of the approach actually puzzled me a bit, because although it would result in a lower apparent incidence of breast cancer it’s not clear how it would do what the authors stated and “provide estimates that were clearly biased in favor of screening mammography — ones that would minimize the surplus diagnoses of early-stage cancer and maximize the deficit of diagnoses of late-stage cancer”; i.e., provide a “best case scenario” for screening mammography.

Another area where I quibble a bit with Welch is his assumption that the change in the incidence rate of breast cancer among women under 40 (who do not undergo screening in this country) is a valid estimate of the true incidence of breast cancer. Breast cancer in women under the age of 40 is arguably biologically different than the more “typical” breast cancer. At the very least, it tends to be more aggressive. I realize that in the SEER database there is no better surrogate for the incidence of breast cancer in an unscreened population, but the question of the biological relevance of this “control” group was pretty much glossed over in this paper.

The first “money” figure is Figure 1, which shows the incidence of early and late stage cancer over time:

There are two things to note here. First, as I’ve discussed before on multiple occasions, the apparent incidence of early stage breast cancer skyrocketed after the introduction of mass mammography screening programs in the late 1970s and early 1980s and has only leveled off in the last six or seven years. Second, the incidence of cancers diagnosed at late stage did decrease, but not by a lot. The authors state:

The large increase in cases of early-stage cancer (from 112 to 234 cancers per 100,000 women — an absolute increase of 122 cancers per 100,000) reflects both detection of more cases of localized disease and the advent of the detection of DCIS (which was virtually not detected before mammography was available). The smaller decrease in cases of late-stage cancer (from 102 to 94 cases per 100,000 women — an absolute decrease of 8 cases per 100,000 women) largely reflects detection of fewer cases of regional disease. If a constant underlying disease burden is assumed, only 8 of the 122 additional early diagnoses were destined to progress to advanced disease, implying a detection of 114 excess cases per 100,000 women. Table 1 also shows the estimated number of women affected by these changes (after removal of the transient excess cases associated with hormone-replacement therapy). These estimates are shown in terms of both the surplus in diagnoses of early-stage breast cancers and the reduction in diagnoses of late-stage breast cancers — again, under the assumption of a constant underlying disease burden.

I’ve discussed how mammography has increased the apparent incidence of DCIS before. Ironically enough, I did it in the context of refuting a common antivaccine trope that “increased detection” and increased awareness couldn’t possibly result in an increase in the number of autism diagnoses. The observation that increased screening for virtually any condition can and does reliable result in the detection of preclinical disease and an increase in incidence is perhaps nowhere better shown that for the case of mammography and DCIS.

The second “money figure” (in this case, “money table”) from the paper is Table 2, which looks at the excess estimation of breast cancers by screening mammography based on four assumptions a base case (constant “underlying” incidence of breast cancer); best guess (breast cancer incidence rising at 0.25% per year, as estimated from the rate of increase of breast cancer incidence in women under 40); an extreme assumption (breast cancer incidence increasing 0.5% per year, twice that of the “best guess”) and a “very extreme assumption” (0.5% per year increase in breast cancer incidence plus using the highest estimate of baseline incidence of late stage disease). Here’s the table:

The authors point out that, regardless of the method they used to calculate it, their estimate of the number of women overdiagnosed with breast cancer over the the last 30 years was at least 1 million, and the proportion of cancers that were overdiagnosed were 31%, 26%, and 22% in the best guess, extreme, and very extreme estimates, respectively.

Although Welch’s estimate is consistent with a growing literature that is consistent with a rate of overdiagnosis for screen-detected breast cancers of over 20%, there are still problems with it. Most of these problems derive from using SEER data. For one thing, SEER is often slow to incorporate new clinical and scientific findings. For example, a few years ago I wanted estimates of the number of patients in our SEER catchment area who are HER2-positive. I couldn’t get it, because at the time SEER hadn’t yet incorporated HER2 status into its database, even though it had been used as a prognostic marker for several years before. SEER does now incorporate HER2, but the point is simply that it’s often behind the times because it’s a big database and decisions regarding how to change in response to evidence and new clinical findings often come slowly.

Another issue is how stage definitions change over the years. However, perhaps one thing that I might have expected someone like Welch to consider but that he apparently did not (at least not if his discussion is any indication) is the issue of stage migration. Welch defines his stages thusly:

The four stages in this system are the following: in situ disease; localized disease, defined as invasive cancer that is confined to the organ of disease origin; regional disease, defined as disease that extends outside of and adjacent to or contiguous with the organ of disease origin (in breast cancer, most regional disease indicates nodal involvement, not direct extension9); and distant disease, defined as metastasis to organs that are not adjacent to the organ of disease origin. We restricted in situ cancers to ductal carcinoma in situ (DCIS), specifically excluding lobular carcinoma in situ, as done in other studies.10 We defined early-stage cancer as DCIS or localized disease, and late-stage cancer as regional or distant disease.

Fair enough, as far as it goes. However, when one looks at breast cancer over 30 years, one can’t help but note that how we detect node-positive disease (i.e., regional disease) has changed. In fact, the new standard of care, known as sentinel lymph node biopsy, can detect lymph nodes with much smaller tumor burdens, particularly when immunohistochemical stains are used, which could mean that over the last decade or so we could be seeing stage migration, largely as a result of detecting smaller metastases. Stage migration is a phenomenon that occurs when more sophisticated imaging studies or more aggressive surgery leads to the detection of tumor spread that wouldn’t have been noted in an identical patient using previously used tests. What in essence happens is that technology results in a migration of patients from one stage to another. This is not an insignificant consideration. One study suggested that the stage migration rate was as high as one in four; i.e., 40% of patients having “positive” axillary lymph nodes with SLN biopsy compared to 30% having positive nodes using axillary dissection. Another study reported similar results. How this would affect Welch’s analysis is hard to tell, and correcting for it is probably not possible using the SEER database, particularly given that the extent of “up-staging” is not fully known yet. Be that as it may, an increase in the apparent incidence of patients with positive lymph nodes would increase the apparent incidence of advanced disease and decrease any decline in the incidence of advanced disease. How large this effect is, I don’t know, but it would suggest that the rate of overdiagnosis is lower than what Welch estimates. How much lower, or whether stage migration is even a significant factor, I don’t know, but I wish that Welch had at least mentioned it.

The bottom line

This latest study by Bleyer and Welch is not, as I’m sure some proponents of “alternative” therapies and “alternative” means of diagnosing breast cancer, such as thermography, will try to argue, evidence that mammography doesn’t work or that it doesn’t save lives. It does. Randomized controlled trials have demonstrated that. However, those trials are old, and it’s not infrequent that “real world” applications of medical tests and treatments will be less effective than demonstrated in RCTs. There is also the “decline effect” to contend with, and I sometimes wonder whether the re-evaluation of mammography that is going on right now is simply one more example of a test not being as good as RCTs originally suggested. On the other hand, there are studies (for instance, this one) that strongly suggest mammography’s value in saving lives, even in younger women (aged 40-49), for whom there is the most controversy regarding mammographic screening.

Be that as it may, the Bleyer and Welch study is simply more evidence that the balance of risks and harms from mammography is far more complex than perhaps we have appreciated before. It’s very hard for people, even physicians, to accept that not all cancers need to be treated, and the simplicity of messaging needed to promote a public health initiative like mammography can sometimes lead advocacy groups astray from a strictly scientific standpoint. One has only to look at the reactions of some doctors to see this. For instance:

The study was roundly criticized by radiologists who specialize in breast imaging, who questioned its methodology and the suggestion that some cancer-like growths should be ignored.

“It’s kind of unbelievable that they’re telling us we’re finding too many early-stage cancers,” said Dr. Stamatia Destounis, a breast imager in Rochester, N.Y. “Isn’t that the point?”

And:

“This is simply malicious nonsense,” said Dr. Daniel Kopans, a senior breast imager at Massachusetts General Hospital in Boston. “It is time to stop blaming mammography screening for over-diagnosis and over-treatment in an effort to deny women access to screening.”

Dr. Kopan, I’m afraid, is completely wrong. This study is not “malicious nonsense.” It has weaknesses and might well overestimate the rate of overdiagnosis, but overdiagnosis is a real phenomenon. Only someone utterly ignorant of basic cancer biology or (as I suspect) protecting his turf would say something so nonsensical (word choice intentional). We’ve seen him say these sorts of things before, most prominently in response to the USPSTF guidelines proposed three years ago when he made dire warnings that large number of women will die because of them and said of the members of the task force, “I hate to say it, it’s an ego thing. These people are willing to let women die based on the fact that they don’t think there’s a benefit.”

As I said, it’s hard for many physicians to accept that not all cancer necessarily needs treatment. Certainly this is likely to be true for ductal carcinoma in situ (DCIS), which consists of cancerous cells that have not yet invaded through the basement membrane of the ducts. Unfortunately, this is the predominant form of breast cancer that is detected by mammography. Indeed, the authors even point out that their method didn’t allow them to disentangle the incidence of DCIS from that of invasive breast cancer, thanks to the way that the SEER database is set up. The problem, of course, is that we don’t know how to predict which cancers will progress and which cancers will not.

Finally, for all the confusion this study causes, there is one spot of good news, and that’s the observation that much of the decline in breast cancer mortality over the last 20 years—yes, contrary to what you might have heard, breast cancer mortality has actually been steadily decreasing—is likely due to improvements in treatment. The authors point this out:

Whereas the decrease in the rate of death from breast cancer was 28% among women 40 years of age or older, the concurrent rate decrease was 42% among women younger than 40 years of age.6 In other words, there was a larger relative reduction in mortality among women who were not exposed to screening mammography than among those who were exposed. We are left to conclude, as others have,17,18 that the good news in breast cancer — decreasing mortality — must largely be the result of improved treatment, not screening. Ironically, improvements in treatment tend to deteriorate the benefit of screening. As treatment of clinically detected disease (detected by means other than screening) improves, the benefit of screening diminishes. For example, since pneumonia can be treated successfully, no one would suggest that we screen for pneumonia.

Ironically, it might be that one of the reasons that the mammography wars are heating up again, with concerns of overdiagnosis and overtreatment beginning to call the benefits of mammography into question might be that mammography is a victim of the success of breast cancer treatment. The multidisciplinary combination of surgery, chemotherapy and targeted therapies, and radiation oncology has made breast cancer treatment, even for relatively advanced cases, far more effective than it was 30 years ago. It might be that treatments for breast cancer have improved so much over the last couple of decades that the role of mammography will inevitably decline. Maybe.

There is, however, a lot more that needs to be done before we can conclude that; right now reports of the death of mammography are very premature. To me, what is most important in breast cancer screening right now is to develop reliable predictive tests that tell us which mammographically detected breast cancers an be safely observed and which ones are likely to threaten women’s lives. We are currently at a point where imaging technology has outpaced our understanding of breast cancer biology, or, as Dr. Welch put it, “Our ability to detect things is far ahead of our wisdom of knowing what they really mean.” Until our understanding of biology catches up, the dilemma of overdiagnosis will continue to complicate decisions based on breast cancer screening.

Posted in: Cancer, Public Health

Leave a Comment (70) ↓

70 thoughts on “A holiday round in the mammography debate

  1. cervantes says:

    The responses by Destounis and Kopans are truly disturbing, but unfortunately represent an all-too-common phenomenon in the medical profession. Recall when lumbar surgeons successfully got congress to eliminate the predecessor agency to AHRQ because they found that their bread and butter procedure was worthless. Many physicians put their incomes ahead of their patients’ welfare when it comes to assessing findings of efficacy. Cardiac stenting is another good example, and there are plenty of others.

    There really needs to be a profound change in the culture of medicine. Doing more stuff is not better, even though the way we’ve set things up for now, it’s more lucrative.

  2. UncleHoot says:

    Please correct me if I’m wrong (and I very well may be), but I have always believed that over-diagnosis also included misdiagnoses and false positives. Some diseases/disorders become “fashionable,” and as awareness increases, sometimes over-diagnoses increase as well. ADHD comes to mind.

  3. Harriet Hall says:

    Are there any data on the value of mammography for screening asymptomatic women who have multiple risk factors for breast cancer compared to those who have none?

  4. cervantes says:

    Dr. Hall, I think that would be very difficult to do because cancer registries or other large data sets such as claims data don’t include the necessary info. As I presume you know, the important risk factors for breast cancer (other than the BRCA mutations) are family history, not having children, very heavy drinking, and obesity, also estrogen therapy. Other than family history and estrogen, these aren’t very strong predictors. You’d need a data set that allowed you to compare screened and unscreened women, follow them for 20 years or so, and also had all that info. Just doesn’t seem feasible.

    You could do an analysis that tried to adjust the PPV of screening for different underlying risk levels, it would require a lot of assumptions and I’m not sure how useful it would be. Women with mothers or sisters who have had breast cancer would presumably be more inclined to get screening, just as a qualitative statement. Also childless women.

    UncleHoot, lesions found on mammography are confirmed by biopsy before further action is taken. That’s a cost of screening, although a relatively minor one compared to surgery and other treatment for lesions that never would have been clinically important. The latter is basically the definition of overdiagnosis from mammography, you aren’t going to get a significant number of false positives per se after the confirmatory testing that is routinely done.

    A semantic question of importance, however, is whether DCIS should even be called “cancer.”

  5. Steve says:

    @ cervantes
    “The responses by Destounis and Kopans are truly disturbing, but unfortunately represent an all-too-common phenomenon in the medical profession. Recall when lumbar surgeons successfully got congress to eliminate the predecessor agency to AHRQ because they found that their bread and butter procedure was worthless. Many physicians put their incomes ahead of their patients’ welfare when it comes to assessing findings of efficacy. Cardiac stenting is another good example, and there are plenty of others.”

    I think you are painting with a fairly broad brush here. Not to be pedantic but the AHRQ dispute with lumbar surgeons was a complicated issue that you have greatly over simplified.
    http://archive.ahrq.gov/clinic/epcsums/stenosum.htm
    I included the link to the actual review. There is no doubt that a vocal minority did in fact try to fight the initiatives that required medication and therapy before surgical treatment. In my opinion that recommendation was spot on. I see no evidence in recommendations for all surgeries to be eliminated for lumbar stenosis, or a “bread and butter procedure” was worthless. I am not a physician or surgeon however I work with them regularly and I can easily make the same reverse broad statement that many physicians put their incomes behind the patient’s welfare when it comes to assessing findings of efficacy. I know little about the recommendation for cardiac stents. Given the rest of the paragraph I’m suspicious about that part of your statement as well.

    The Statement “The responses by Destounis and Kopans are truly disturbing”, I agree with completely. After that you kind of lose me.
    I also think this is a wonderful post thank you Dan.

  6. cervantes says:

    Sorry, Steve, I don’t take your point. Lumbar surgeons rejected empirical findings and lobbied congress to defund the agency, which it did, because the findings threatened their incomes. That is not in dispute. It is historically accurate.

    The issue with stents is very well known and widely covered. They are not indicated in uncomplicated angina, but surgeons continue to implant them, even telling patients that they prevent MI, which is false. They may be indicated after MI.

    I don’t accuse all physicians of putting their incomes ahead of patient welfare, just some of them — e.g. Destounis and Kopans.

  7. Narad says:

    This latest study by Bleyer and Welch is not, as I’m sure some proponents of “alternative” therapies and “alternative” means of diagnosing breast cancer, such as thermography, will try to argue, evidence that mammography doesn’t work or that it doesn’t save lives.

    Everyone’s favorite chrome-domed homeopath will have none of such subtlety.

  8. cervantes says:

    Steve, check this out. This refers to the Agency for Health Care Policy and Research, AHRQ’s predecessor. Yes, this really happened, in

    “But when the AHCPR’s panel concluded that there was little evidence to support surgery as a first-line treatment for low back pain, and that doctors and patients would be wise to try nonsurgical interventions first, back surgeons went wild. They knew that once the AHCPR’s guidelines were published, Medicare might limit reimbursement for various back surgeries to patients who were enrolled in a controlled clinical trial designed to test the efficacy of the procedure. If the study showed that a surgery was no better than nonsurgical remedies, or only about as good, there was a chance that Medicare would stop reimbursing for it. If Medicare made a back surgery provisional, private insurers were likely to follow.

    Sensing a threat to their livelihoods, many surgeons bombarded Congress with letters contending that the agency’s panel was biased. One doctor, Neil Kahanovitz, founded the Center for Patient Advocacy, a nonprofit that orchestrated a sustained lobbying campaign against the entire agency. A company that manufactures pedicle screws (devices that are sometimes used during spinal fusion) sought a court injunction to prevent publication of the guidelines. The North American Spine Society, the main professional group for back surgeons, launched an assault on the methods used by the AHCPR experts, charging that the agency had wasted taxpayer dollars on the study.

    Their arguments found a sympathetic ear in Newt Gingrich’s newly elected Republican majority in the House. The back surgeons’ anger at the AHCPR’s efforts to discipline medical practice resonated with the Republican fervor for reducing government, and with the party’s ideological antipathy for federal interference in what they imagined as a free market. The agency’s name soon appeared on a House Budget Committee “hit list” of 140 federal programs targeted for elimination. (The list also included the congressional Office of Technology Assessment, which evaluated the effectiveness of medical technology.) The Republicans saw the AHCPR as a wasteful government agency, and in 1995 the House voted to eliminate its funding, calling it the “Agency for High Cost Publications and Research.” . . .

    The back panel’s guidelines were published in 1994, but they were ignored by many surgeons who were perhaps emboldened by the Republican smack-down of the AHCPR. Last year, we spent more than $16 billion on back surgeries, and, in the past decade, surgeons have been performing spinal fusions at a furious rate, even though there still has never been a rigorous, independently funded clinical trial showing that going under the knife is superior to cheaper, less invasive remedies.”

    Just so you know. I really do know what I’m talking about.

  9. hokie98 says:

    Just curious, what are your thoughts on “baseline” mammograms for 35-39 year olds? I’m 36 and had my annual exam a couple of weeks ago where my OB/Gyn recommended I get a ‘baseline’ before I turn 40. I hadn’t done enough research to question her more during my visit, but I can’t find where any major groups recommend a baseline. I don’t want to ignore my doctors orders, but I am just trying to gather more information before I decide to schedule a mammogram that is potentially pointless.

  10. David Gorski says:

    In my practice, unless you are at an increased risk of breast cancer due to family history or a gene mutation or other reasons, there is no reason to get a mammogram before age 40 unless you develop a lump or other suspicious symptoms in your breast(s). Your mammogram at age 40 is your baseline mammogram.

  11. Janet says:

    I’m taking this with me to my next mammo. I skipped the one they wanted to do six months after the (unnecessary, I now believe) biopsy I had. They really have tried to scare me–or worse, paint me as an altie loon when I tried to bring up this type of data (from yours and others musings which you link to here). I got a very earnest, “don’t listen to anyone but us” delivered in a voice which would have been appropriate for a ten year old. I had zero confidence in the radiologist who ordered the biopsy and they used scare type tactics for that as well.

    I am more than willing to have my annual mammo and have never made a fuss. I am willing to have a biopsy if there is a good reason (a bit more than, “there might possibly, just maybe, be something we have no clue about other than a vague idea that there might possibly be a chance that that little bit there in the corner might possibly be something we aren’t entirely sure of”) and I am willing to do precisely as I am told if I need treatment, but I no longer have blind faith in all this, especially in a radiologist who appeared for 30 seconds, gave little to no information, and disappeared, leaving me to the “care” of the pink ribbon idiots. I don’t need coddling, just up-to-date policies.

    By the way, I have a stent–now I’m wondering about that as well! I did not have MI, but I did have an “almost completely blocked LDA” according to ultrasound. No problems since and the angina stopped immediately. I was led to believe that I was a moment away from the MI.

    I know this blog is notabout medical advice per se, but if it is to help the non-professional make good decisions, will someone please tell me if I am either too trusting or not trusting enough of some of my doctors? :-)

  12. David Gorski says:

    I would just like to reiterate that a BIRADS category 4 mammogram (suspicious) or higher requires biopsy, as I discussed in the comments of another post:

    http://www.sciencebasedmedicine.org/index.php/true-informed-consent-is-elusive/#comment-105067

    I’m just too tired right now to explain again what the BIRADS classification system is and what the various BIRADS categories mean. :-)

  13. marilynmann says:

    @Janet Stenting can save lives in patients having a heart attack, but there is no convincing evidence that stents save lives in stable coronary disease.

    However, there are certain high risk characteristics (e.g., >50% stenosis of left main coronary artery) of stable coronary disease in which bypass surgery may have a mortality benefit.

    There is a new guideline on stable coronary disease — you may want to take a look at it. Here’s a summary:

    http://cardiobrief.org/2012/11/19/comprehensive-guidelines-for-stable-ischemic-heart-disease-released/

    Here’s the guideline: http://content.onlinejacc.org/article.aspx?articleid=1391404

    If you don’t have access, email me at mannm at comcast.net and I will send you the pdf.

  14. pmoran says:

    Janet: I skipped the one they wanted to do six months after the (unnecessary, I now believe) biopsy I had. They really have tried to scare me–or worse, paint me as an altie loon when I tried to bring up this type of data (from yours and others musings which you link to here).
    ———————
    I know this blog is notabout medical advice per se, but if it is to help the non-professional make good decisions, will someone please tell me if I am either too trusting or not trusting enough of some of my doctors?

    Your doctors may be poor communicators, and resentful of too much patient questioning, but I think you may be worrying unnecessarily.

    It is most unlikely that your doctors are influenced by anything other than not wanting to miss an invasive breast cancer. I am not aware of anything presented here that might lead you to doubt that or to question their advice.

    The overtreatment question will not be resolved until we have some way of distinguishing progressive from non-progressive cancer. For the present they look exactly alike and no doctor will be prepared to take any risks. The stakes are too high.

    Having close knowledge of your personal clinical details and radiological findings thoroughly trumps any statistical data you may find here or elsewhere.

  15. marilynmann says:

    @Janet Also, do you mean LAD (left anterior descending)?

  16. Amalthea says:

    @Janet
    I’m not a medical practitioner of any sort but, annual mammo?
    Even with my maternal grandmother having had two different types of breast cancer separated by a couple of years (the second one being terminal) doctors never suggested I get annual ones. They did suggest I start getting mammos every two years. The last time I had one (last year) the radiologist believed that even every two years was unnecessary since my grandmother didn’t get diagnosed with caner until her mid 60s, and my mother is now older than her mother lived to be and has shown no sign of cancer.
    It sounds as if one of us (if not both) has (have) been getting poor advise.

  17. ConspicuousCarl says:

    One has only to look at the reactions of some doctors to see this. For instance:[....]

    Doctors Destounis and Kopans are evaluating medical information with the same mental level as I employ when trolling youtube videos. I am tempted to conclude either that they are over-employed, or that I ought to be giving people medical advice for a fee (“ur cat is probly eating teh newspapr bcuz u have aidz.”). But Bayes says I shouldn’t draw such conclusions based only on one day’s data, so maybe neither of those statements is true.

    Screening for a disease involves subjecting an asymptomatic population, the vast majority of whom don’t have the disease, to a diagnostic test in order to find the disease before it causes symptoms.

    Not sure if I mentioned this before, but this reminds me of the problem with rating the accuracy of lie detectors. You screen 100 employees, one of them being a spy. 90 were correctly identified as honest, while the other 10, including the spy, were marked as liars. You could say that 91% of the readings were correct. Or you could say that 100% of spies were caught by the screening process. But if you have a “lie” reading, the sad fact is that there is only a 10% chance that it is correct. And to make it worse, in reality a lot of spies actually aren’t caught by the screening which means your brutal attempts to catch all spies at any cost doesn’t even work.

    It looks like mammograms are (thankfully) better than lie detectors, but the principle is still a problem.

    For instance, it’s well known that autopsy series reported on who died at age 80 or older have consistently shown that the majority of men over 80 (60-80%) have detectable foci of prostate cancer. Yet, obviously prostate cancer didn’t kill the men in these autopsy series, and they lived long enough to die either of old age or a cause other than prostate cancer.

    This fact being another hole in the CAM tendency to think of “healthy” as being some attainable pristine absence of anything bad. No, it looks like our bodies are slopped up meat machines which work just well enough to get most of us through life.

  18. David Gorski says:

    Not sure if I mentioned this before, but this reminds me of the problem with rating the accuracy of lie detectors. You screen 100 employees, one of them being a spy. 90 were correctly identified as honest, while the other 10, including the spy, were marked as liars. You could say that 91% of the readings were correct. Or you could say that 100% of spies were caught by the screening process. But if you have a “lie” reading, the sad fact is that there is only a 10% chance that it is correct. And to make it worse, in reality a lot of spies actually aren’t caught by the screening which means your brutal attempts to catch all spies at any cost doesn’t even work.

    You’re talking about the positive predictive value of a test, which is the probability that a person with a positive test result has the disease or will get the disease being tested for.

  19. BillyJoe says:

    Cervantes,

    My understanding regarding lumbar spinal surgery is that it is a reasonable option only after three to six months of constant unrelieved using non-surgical treatments. And even then the purpose is to relieve the associated leg pain, not the actual back pain.

    My understanding regarding coronary artery stenting it that it is reasonable only in the setting to acute myocardial infarction to limit the amount of damage to the heart muscle. Specifically, it is not indicated in the treatment of angina.

    Does that accord with your understanding about these issues?
    (My brother suffered an acute disc prolapse moving his pool table but, fortunately, he recovered without surgery; my sister had an acute myocardial infarction at the age of forty and had a coronary artery stent in that setting.)

  20. BillyJoe says:

    …sorry, I forgot to reload and missed all the responses after Cervantes to which my post referred.
    Unknown to me, my questions were already answered. :)

  21. Janet says:

    @marilynmann

    Thank you for the links. I will see if I have access and let you know.

    Also, yes on LAD (I think–it’s been 12 years).

    @pmoran

    Yes, you are right, of course and I am aware that over treatment is unavoidable at this point. It just takes on a more ominous feeling when it is me who is getting the over treatment. I think my problem with the docs is more related to the new trend of what I call the Pink Ribbon Brigade–it’s worse than the old paternalism.

    @Dr. Gorski

    Yes, I did mention that I have read your other posts on this (but not all the comments perhaps) but I should have reread before commenting, I suppose. I will do so now.(Pause) No one said anything about BIRADS of any number–just a vague “blur” and they didn’t want to “take any chances”. It would have helped a great deal had they used this scale to explain! I just remembered that I had one “retake” prior to the biopsy, but again, no discussion. I know I should be grateful for the concern, and I can’t really figure out why I am not. Perhaps I’m getting too cranky in my dotage. :-(

    @Amalthea

    Gosh, I don’t know what to say. I have had annual mammos since age 40 (now over 60). Perhaps you are younger? I just checked and this is the recommendation of the American Cancer Society. No family history for me, and I am considered very low risk.

    Thanks very much to everyone who responded–it is more than I got from the clinic.

  22. rork says:

    pmoran:
    1) “The overtreatment question will not be resolved until we have some way of distinguishing progressive from non-progressive cancer.” That sounds a bit like you think that alteration of the screening schedule has no effect on overtreatment. People repeat phrases like this for this and other cancers, and it sounds like an excuse to not consider improvement of current practice by actually collecting better data and analyzing it.
    2) “Having close knowledge of your personal clinical details and radiological findings thoroughly trumps any statistical data you may find here or elsewhere.” Turning prior + data into a posterior is best done by actually using a model, data, and a calculation. This sentence sounds too much like wild-west make-it-up decision making is being advocated over statistical decision theory.
    I’m not saying that was the intended message in either case.

  23. Janet says:

    @marilynmann

    f. When angina does not respond to medications, patients may decide with their medical team, to undergo a procedure to improve circulation to the heart. This can be accomplished either with surgery (coronary artery bypass grafting) or with a catheter (PCI – percutaneous coronary intervention). The choice should be based upon the clinical characteristics of the patient and the results of testing including cardiac catherization. Both surgery and PCI are relatively safe and effective in eliminating chest pain BUT surgery improves survival only in a relatively small group of patients with very severe blockages of the left main coronary artery or several arteries, while PCI has not been conclusively shown to improve survival in any group of patients.

    ——–

    I think I was in the “BUT” group. Since I was supposedly going to have a heart attack at any moment, didn’t the stent improve my survival?

    I should add that at the time I was 49 years old, that early onset heart disease plagues my family, that I had no lifestyle risk except being moderately overweight (now corrected) and ran three miles/day plus lots of cycling (which is how I came to see the doctor due to increasing chest pain and shortness of breath) and was told it was my asthma for months until I made an actual scene! At this point I had an EEG and a stress test, both of which I passed easily! After another scene (having just read an article about women and often-ignored symptoms) I was sent to the cardiologist where I passed another stress test and was then (reluctantly) given the ultrasound–which immediately alarmed everyone present. The next day I got the stent. Perhaps this experience explains why I tend to skepticism with some of the docs?

    Following the stent, I was put on aspirin, statin and continued to manage BP. The happy news is that when I finally lost the weight some years later (after nearly acquiring diabetes) the numbers all mostly stabilized and my HDL finally came up to the normal range!. I still take BP meds but much lower dose, and still take aspirin and small dose of statin to keep me below 100–but blood sugar is normal and no metformin. Let’s hear it for LOSING two pounds over the turkey holiday! All hail portion control and kale/beet salad.

  24. pmoran says:

    Rork: “The overtreatment question will not be resolved until we have some way of distinguishing progressive from non-progressive cancer.” That sounds a bit like you think that alteration of the screening schedule has no effect on overtreatment.

    How would that work? I am not sure how “alteration of the screening schedule” using any presently available knowledge could improve the overtreatment problem, without compromising areas where screening does save lives.

    Now that screening is a such deeply entrenched element in our overall approach to breast cancer and associated with substantial reductions in overall breast cancer mortality (despite increasing incidence) it would be unwise to make major changes yet.

    I suspect this problem will be largely overcome when we have the knowledge and the technology to select out those cancers that will be cured by a simple excision-biopsy. Most women would prefer to be rid of ANY suspect lesion if it can be done so simply, rather than go onto the stressful program of surveillance that would be otherwise indicated with a presumed non-progressive cancer.

    So the short-term objective should be the avoidance of more extensive surgery, radiotherapy and chemotherapy wherever they can be known to be not needed. .

    “Having close knowledge of your personal clinical details and radiological findings thoroughly trumps any statistical data you may find here or elsewhere.” Turning prior + data into a posterior is best done by actually using a model, data, and a calculation. This sentence sounds too much like wild-west make-it-up decision making is being advocated over statistical decision theory.
    I’m not saying that was the intended message in either case.

    This was the core of my dispute with Harriet regarding her informed consent piece..

    What is the question i.e. the practical purpose that you have in mind? If it is to assess the cost-effectiveness and procedural quality of, say, a breast screening clinic, then certainly you will be wanting to have pooled statistics.

    But I unrepentently suggest that if a patient says “what are the chances of my biopsy finding cancer”, then you will take out the films and put them up on the viewer. They, along with other clinical features, will tell us whether there is a 5% or 98% chance of cancer, or “it could go either way”. Pooled statistics can tell us nothing unless they refer to a population of identical patients.

  25. Harriet Hall says:

    “But I unrepentently suggest that if a patient says “what are the chances of my biopsy finding cancer”…”

    And I unrepentantly repeat that your real-life example is not pertinent to the question in the study. The doctors in the study should have been able to answer the more general question given the numbers supplied about prevalence, sensitivity and specificity. And I must question how accurately you could answer the patient in your example, since you are considering “other clinical features” for which no good reliable data exist.

  26. pmoran says:

    Harriet:And I unrepentantly repeat that your real-life example is not pertinent to the question in the study

    Exactly right. However I suggest that the statisticians, being statisticians and not clinicians, wrongly thought that their question was relevant to the real life question that a patient with a unique set of clinical and radiological features might pose. Whereas the principles they were trying to get across just don’t apply to individuals within a widely variant population.

    They could have chosen to ask the exact same question but using a test that IS either positive or negative, where data regarding prevalence, specificity etc are indeed useful in assessing the signicance of a positive test. Why did they not do this? Perhaps it does no harm to conference-running statisticans’ ambitions if they can make clinicians look more foolish than they truly are.

    Other “clinical features” might include whether a palpable lump is present and the features of that lump. Do you truly think we need to seek help from statisticians to confirm that skin tethering over a lump very strongly suggests cancer, or that high mobility within the breast is against it?

  27. Harriet Hall says:

    I have reconsidered. I think the question about “positive” mammograms was a very reasonable one. The terms “positive mammogram” and “false positives” are commonly used in studies. For instance this one http://www.ncbi.nlm.nih.gov/pubmed/9709290 says that there are 15-40 times as many false positives as true positives. Searching PubMed for “positive mammogram” yielded 777 clinical studies and 96 systematic reviews. Despite the current use of BIRAD classifications, a 2011 Cochrane review found it useful to say that of 2000 women screened, 200 will have psychological distress from false positives. http://www.ncbi.nlm.nih.gov/pubmed/21249649. While far from a precise term, the term “positive mammogram” is widely accepted and understood by both doctors and patients.

    As a patient, I was reassured to read the average statistics of 9% true positives and to know that my risk was even less than that average. Admittedly, I would have been even more reassured with statistics more pertinent to my individual case and based on BIRAD.

    All of this quibbling is really irrelevant to the point that doctors are not doing as good a job as they should of understanding the data and informing patients.

  28. BillyJoe says:

    Janet,

    ” I have had annual mammos since age 40 (now over 60)”

    Interesting.
    In Australia, the recommendation is every two years and, in the UK, every three years.
    Also hasn’t the recommnendation in your country changed recently to biannual mammograms bringing it in line with Australia’s evidence based recommnendation?

    ” I was sent to the cardiologist where I passed another stress test and was then (reluctantly) given the ultrasound–which immediately alarmed everyone present. The next day I got the stent. ”

    What alarmed everyone about your ultrasound?
    (Or did you mean coronary angiogram perhaps?)

  29. mousethatroared says:

    Janet “I should add that at the time I was 49 years old, that early onset heart disease plagues my family, that I had no lifestyle risk except being moderately overweight (now corrected) and ran three miles/day plus lots of cycling (which is how I came to see the doctor due to increasing chest pain and shortness of breath) and was told it was my asthma for months until I made an actual scene! At this point I had an EEG and a stress test, both of which I passed easily! After another scene (having just read an article about women and often-ignored symptoms) I was sent to the cardiologist where I passed another stress test and was then (reluctantly) given the ultrasound–which immediately alarmed everyone present. The next day I got the stent. Perhaps this experience explains why I tend to skepticism with some of the docs?”

    Amen to that! When you are healthy it’s great to trust your docs when they say everything is fine in spite of your symptoms. But sometimes it turns out you were not so healthy.

    If you are a patient, how do you know if a doctor is just blowing you off or they really have done all the tests that are reasonable for that situation? I try to look at the medical information available to my skill level and determine if the doctors have done the tests that are recommended for particular symptoms or to reach a particular diagnoses. But this leaves me in the position of second guessing a professional with far more expertise than myself.

    But, in my experience, most of my doctor’s have not done the recommended follow-up tests that I find in the literature before “ruling out” a particular condition.

  30. rork says:

    pmoran: if you have a decision theory that you think is not statistical, avoid gambling with it (see “incoherence”).

    “[little] could improve the overtreatment problem, without compromising areas where screening does save lives”
    Sounds like we shouldn’t try to reduce screening to reduce overtreatment if even one life is lost due to undertreatment. Surely you don’t want that. If 2 year intervals was the standard for colonoscopy, we’d never be able to push it to 5, since that might be compromising. Compromising is key.

    Not about pmoran, who I certainly do not wish to lump with average doctors in the study I talk about next:
    NCI cancer bulletin today is about screening. http://www.cancer.gov/ncicancerbulletin/112712. Several good articles, but on page 4 they interview an author of PMID 22393129, which had some shocking results about doctors understanding of the issues, and it also discusses with graphics about several biases (lead-time, length-bias) often reviewed here by Gorski and others. It made news earlier this year in my world, and perhaps here too.
    “the majority of primary care physicians did not know which screening statistics provide reliable evidence on whether screening works,” Dr. Schwartz and her colleagues wrote. “They were more likely to recommend a screening test supported by irrelevant evidence…than one supported by the relevant evidence: reduction in cancer mortality with screening.”
    I think “irrelevant evidence” in her sentence is a bit of overstatement – she means showing longer survival after treatment for example. Not sure I’d call that irrelevant, since if it’s not true, we’d be worried. “possibly misleading” might be better.

    BillyJoe: “The USPSTF recommends biennial screening mammography for women aged 50 to 74 years” (late 2009).
    What folks actually do, I know less about.

  31. Scott says:

    If you are a patient, how do you know if a doctor is just blowing you off or they really have done all the tests that are reasonable for that situation? I try to look at the medical information available to my skill level and determine if the doctors have done the tests that are recommended for particular symptoms or to reach a particular diagnoses. But this leaves me in the position of second guessing a professional with far more expertise than myself.

    It’s kind of trite, but things become trite because they’re true – you get a second opinion. It’s certainly reasonable to question the extent to which it’s appropriate for a layperson to second-guess an expert, but obtaining a second expert opinion does not suffer from that problem.

  32. mousethatroared says:

    Sorry – off topic

    Scott – Yes, getting a second opinion is a good idea when possible. But it’s not always helpful. I got a second opinion from a Reproductive Endocrinologist. The problem was that the only other RE that was covered by my HMO was the other doctor’s partner. The second seemed very uncomfortable with questioning his partners decisions and offered a treatment plan almost identical to the first. They both declined to test my thyroid at the time, even though I reported symptoms of thyroid disease. A couple of weeks later, I received a strongly worded letter from the first doctor dismissing my concerns.

    Five month later I was diagnosed with autoimmune thyroid disease with inflammation of the thyroid, nodules and anti-thyroid antibodies by a regular endocrinologist. As an aside, just from my reading of the pharmacy packet insert, the medication I was prescribed by the RE was contraindicated for untreated thyroid disease. Also, women with the anti-bodies I tested positive for have lower success rates in IVF, which the REs were recommending.

    I know the focus of this site is anti-CAM, but I tend to think that some of the logical fallacies and problematic approaches that lead many doctors to recommend unproven CAM treatments also lead doctors to make other mistakes that are harder for patients to spot because they fall within the scope of typical medicine. I really don’t know how common these kinds of other mistakes are, but IF they are common enough, getting a second opinion offers limited protection.

    On the other hand, if you are seeing multiple specialists for difficult to diagnose symptoms and those specialists disagree, who do you believe? Do you see a whole new set of specialist? Do you trust the specialist that gives you the diagnoses you like best or maybe the diagnoses you like least, as a way to compensate for your bias? Do you go with the doctor who seems to give you the best rational for the diagnoses, even though there is a possibility they are just a better talker and not a better thinker?

    1. Harriet Hall says:

      @mouse,

      “if you are seeing multiple specialists for difficult to diagnose symptoms and those specialists disagree, who do you believe?”

      As a family physician, the first thing that occurred to me was that you could “believe” a board-certified family physician whom you had come to trust over years of care and who could interpret the specialists’ findings, mediate differences in opinion, and act as a sort of traffic director for your specialist referrals and for all your care.

  33. Scott says:

    You definitely raise several interesting (and hard) questions. Perhaps one of our august hosts will be inspired to take on the topic in more depth.

  34. Janet says:

    @Scott

    Getting a second opinion is what I now think I should have done. It was the radiologist I had questions for, after all, that were not adequately answered. However, that is hindsight gained through this discussion. I’ll try to remember it.

    @BillyJoe

    “What alarmed everyone about your ultrasound?
    (Or did you mean coronary angiogram perhaps?)”

    They were alarmed because even though I passed two different stress tests and an EKG, I had this massively (98%) blocked LAD–supposedly, there was nothing wrong with me. My chest pain was supposedly asthma. Never mind that I said it was nothing like what I knew to be asthma discomfort.

    No, it was the unltrasound. I had the angiogram the following day to confirm the ultrasound (they said), just prior to stent placement.
    —–
    “Also hasn’t the recommnendation in your country changed recently to biannual mammograms bringing it in line with Australia’s evidence based recommnendation?”

    This is the very basis of my conflict with my clinic about the entire breast program! There seem to be conflicting ideas, but they will only state their own policy and don’t even want to talk about how it was developed. As I said in an earlier comment, the American Cancer Society recommends every year over age 40 and everywhere I’ve been a patient (at least four states and numerous clinics), this has been the case. The ACS may not be THE authority, but it is probably a place that average women turn to for clarification.

    @Mouse

    I’ve always felt vindicated for pushing this issue. I continued with the doctor who delayed the diagnosis because she unequivocally apologized for her error in both diagnosis and judgement in hearing my complaint. I have to add that once she heard the result of the ultrasound, she leapt into action and made sure I got immediate treatment.

    @rork

    “The USPSTF recommends biennial screening mammography for women aged 50 to 74 years” (late 2009).”

    As I replied to BillyJoe, this is the kind of confusion that plagues average women. Who are we to listen to? I come here to get a better idea of what the studies really say, but to be honest, I have great difficulty following the above argument between Dr. Hall, pmoran, and yourself. I’m going to reread it all with serious focus, as well as Dr. Gorski’s previous posts and try to take away something that I can present when I either face this situation again or turn to a second opinion. I just want to be informed as well as possible without going to medical school!

  35. mousethatroared says:

    @HH – I know “believe” is not the best word. Possibly whose opinion should I put more stock in?

    Do GPs usually coordinate much between specialists? I have to admit I am only recently experiencing the confusion between specialists, so it could be I am going about things wrong and that’s all just bugs in a new system. But aside from referrals, I don’t get the sense that my GP is mediating or interpreting the specialists.

  36. Harriet Hall says:

    @mouse,

    When I was a practicing FP, I frequently had to translate what specialists had said into language that patients could better understand, and to answer questions about whether they should believe what the specialist said or follow his recommendations. Are you seeing a board-certified specialist in Family Medicine, or an unspecified GP? That might make a difference. And of course, not all FPs are equal; but ideally they should take full responsibility for managing your entire health care. The new concept of the “medical home” is promising. See http://en.wikipedia.org/wiki/Medical_home#Comparison_with_.E2.80.9Cgatekeeper.E2.80.9D_models

  37. Janet says:

    @HH

    I agree wholeheartedly with your most recent comment. It describes my dilemma very accurately. That’s why you are a writer and I only string words together somewhat inadequately. :-)

    @Mouse

    I don’t think that’s off topic at all. Those are excellent questions, some of which I considered even while agreeing with Scott that second opinions could be a useful strategy. I especially noted your question about simply picking the specialist who gets closest to what you, as a patient, want to hear. How are we to know who is right? Even with testing, there is judgement involved. Had I listened to my doctor about the chest pain, I would almost surely have had a heart attack. I should add that most of the women in my (paternal) family were dead of heart attacks by 50. Breed and die was our history. My father’s five sisters were the first generation to survive past this milestone–with massive intervention as they had terrible lifestyles. My father survived his age 40 heart attack, but my husband’s father did not. I harp at my 26 year old son about lifestyle because I think he is genetically doomed!

  38. mousethatroared says:

    @HH, No, my GP is board certified in Internal Medicine. To be honest, I didn’t make a consciouse choice between the two (Internist-Family Medicine). I thought the main difference was that FP could treat children and adults and Internist could only treat adults.

  39. Janet says:

    @HH and Mouse

    The key to that is “…come to trust over years of care…”

    I’ve moved a lot and a number of my doctors have retired, moved, given up practice (one to pursue CAM!), or simply inspired no confidence whatsoever after a couple of visits. So when the current 12 year old was taking new patients (few others were on my insurance) I decided to start from scratch with her. I always sought FP’s while I had a family and never bothered with a pediatrician unless referred by the FP, but internist seems the thing now. So far so good. She’s only available two (long) days a week, but she’ll get no argument from me for putting mothering her three babies first for a few years. Her husband is commuting to another city for an orthopedic fellowship, so he isn’t much help right now. She even asks me for baby advice sometimes–we seem to get on despite the age difference. So, I think you are right, HH–I have come to trust this young woman because I have finally had four years with the same doctor for one thing. Hopefully, she will see me into the home or the hospice. Perhaps it is her that I should be discussing the mammogram questions with?

    She definitely co-ordinates with my specialists, but my clinic has moved to electronic records and that may be making that more the rule. The only objection to that is that all the docs now sit at the computer and type furiously through most of the visit. It was very off-putting at first, but I am getting used to it. It seems they must be taking down my every word at times! Oddly, this was NOT the case at the breast clinic–no computer screens, just pink, pink, pink and special little changing rooms.

  40. mousethatroared says:

    Thanks Janet, It’s good to know that I’m not alone in wondering about these questions. And good for you for advocating for yourself so well. I have friends who have been discouraged with a doctor who didn’t address bothersome symptoms and turned to alternative treatments instead* – Only to end up back at another doctor later having to insist that the symptom be looked at seriously.

    *oh gosh, I really don’t want to start that argument up. It’s only anecdotes, I’m not suggesting that I inattentive doctors are a major cause of CAM, just that it’s happened to a couple of folks I know.

  41. mousethatroared says:

    Thanks for the link HH, that’s very interesting. I thought “gatekeeper” or not gatekeeper were the only available models.

  42. Harriet Hall says:

    @mouse,

    It’s not customary to refer to an internal medicine specialist as a GP. I think the term you want is primary care physician. Some IMs are equal or better than FPs as a source of primary care for adults; some are not. They are probably better at managing older adults with multiple complex health problems. Internists generally don’t do obstetrics or surgery; some FPs do. Some internists subspecialize (cardiology, hematology, etc.). I think they are generally less trained than FPs in areas like treating injuries and orthopedic conditions. My totally un-evidence-supported prejudice is that FPs are generally more conservative about ordering tests and treatments; more likely to look for horses than zebras; make more practical, common-sense judgments as compared to an ivory tower intellectual mindset; and generally have a more “holistic” approach to the patient’s entire life situation. (I hate that CAM has appropriated the term holistic for their own inappropriate use; all good doctors consider the whole patient.)

    I said I was prejudiced…

  43. Janet says:

    @Mouse

    LOL. I had written something very similar to your comment about CAM and your asterisk, but deleted it, thinking I shouldn’t go there after all because it was “just my personal experience”.

    @pmoran

    “Most women would prefer to be rid of ANY suspect lesion if it can be done so simply, rather than go onto the stressful program of surveillance that would be otherwise indicated with a presumed non-progressive cancer.”

    I was rereading all of these comments–and the post (followed up the links too), and realized that the crux of my problem has to do with your statement above. I am not interested in what “most women” want. “Most women” love all the pink ribbon nonsense, too. I don’t think a program of surveillance would be as stressful as a nasty needle biopsy done for reasons as vague as what I was offered.

    What I want, is enough informed discussion to make that choice for myself. (I wish I knew how to make that BOLDFACE.)

    Thank you all for bearing with me through all that. :-/

  44. Janet says:

    @HH

    Thanks for the clarification between IM and FP–there is some nuance there that I hadn’t considered. This perhaps explains why my former FP was comfortable prescribing for my ADHD and discussing related issues, whereas the internist is not. I figured it was her age/experience, but perhaps that was a very false conclusion on my part. Since I’m on a long waiting list to see a psychiatrist, just to talk about treating ADHD at my age, perhaps I should look for an FP! Mon Dieu–just when I was getting used to the internist who is younger than my children!

  45. mousethatroared says:

    Harriet – Yes, Primary Care Physician is the word I should have used. Thanks for the heads up and the information on Internist vs FP. I know that generalizations don’t nessasarily hold true in the individual, but when you are looking for a doctor and you have to start somewhere, then a generalization can be very helpful.

  46. pmoran says:

    Janet, WRT the yearly vs second yearly mammogram: I am not “up” on the latest data on this, but remember that public breast screening programs (if that is what you are engaged with and you are not involved in a more personalised, private program based upon risk factors or medical whim) are aimed at cost-effective outcomes for whole populations. They don’t care about every individual patient outcome.

    Thus, yearly mammography might be expected to pick up more cancers, and earlier ones too, but by doubling(?) the cost of the overall program they may make the very few extra lives saved too expensive to justify the public cost. The payers generally have a figure in mind for the worth of one life.

    So there is no clear answer to what is “best”, especially for any particular individual. This is another example where pooled statistics determine some health-care questions while having little relevance to individual patient care.

  47. Harriet Hall says:

    @pmoran,

    If you are not “up on the latest data” you might at least try to inform yourself before offering uninformed opinions. Have you looked at the USPSTF summary? http://www.uspreventiveservicestaskforce.org/uspstf09/breastcancer/brcanrs.pdf Are you aware that the USPSTF and the American Cancer Society recommendations do not consider economic costs but only the benefit/harm ratio to patients? Your suspicions that payers base decisions on the expense to the public and that they have fixed a figure for the worth of one life are unjustified.

    You claim that pooled statistics have little relevance to individual patient care. I beg to differ! Pooled statistics are the basis of science-based medicine. We use the available data but we recognize it for what it is and we use discretion in applying it to the individual patient. It sounds like you are arguing for “in my experience” individual guesswork instead of data-based decisions.

  48. pmoran says:

    Harriet, I agree I wildly overstated “the Pooled statistics have little relevance to individual patient care” and I very nearly sent a correcting post at the time. I should have predicted you would be poised, ready to pounce on that. But I value testing out of anything I say.

    Do the comments in your first paragraph represent a peculiar and parochial American attitude to health care, having to do with why the American system is so horrendously expensive while not offering clearly better overall health outcomes than other countries? Most other countries accept that over-expenditure in any one area must cost life and limb in others, and that resources should be husbanded in such a way as to provide reasonable access to health care for all.

    Well, no, it’s probably not that. There is no question that when mammographic screening was first mooted in the UK and other countries like Australia, perhaps also within the US all those decades ago, the sums were done. IIRC, it was worked out that for the UK each life saved would cost several tens of thousands of pounds and that was considered acceptable there and also in Australia. Since then the gains from yearly versus two yearly mammography have not been considered cost-effective in those countries, especially against a background of other information suggesting that mammography may not save as many lives as first thought anyway.

    I am fairly sure that assumptions regarding such basic cost-effectiveness will be being taken as read in the sources that you quote, possibly pitched at a different level to that which applies in other countries.

  49. Harriet Hall says:

    @pmoran,

    No, there is no “peculiar and parochial American attitude.” Don’t try to conflate what are really two separate questions. The way it works is this: first science determines the risks and benefits and then society decides where to spend its money.

    The USPSTF says “The harms resulting from screening for breast cancer
    include psychological harms, unnecessary imaging tests and
    biopsies in women without cancer, and inconvenience due
    to false-positive screening results. Furthermore, one must
    also consider the harms associated with treatment of cancer
    that would not become clinically apparent during a woman’s lifetime (overdiagnosis), as well as the harms of unnecessary earlier treatment of breast cancer that would have
    become clinically apparent but would not have shortened a
    woman’s life. Radiation exposure (from radiologic tests),
    although a minor concern, is also a consideration.”

    I don’t see anything there about money; do you? And I didn’t see anything about economic costs in either David’s post or in the NEJM article, either.

  50. pmoran says:

    harriet: I don’t see anything there about money; do you? And I didn’t see anything about economic costs in either David’s post or in the NEJM article, either.

    Is that because, as I suggest that there is the prior assumption of adequate cost-effectiveness, or because it is expected that the recommendations will (also) be applied within a predominantly private, fee-for-service system wherein there is no tradition of considering costs?

    I have limited knowledge of how the American health system works, but I can tell you that other countries also quickly realised that having independent publicly run, carefully quality controlled breast screening systems was the best way of making them sufficiently cost-efficient and of least potential harm to the public.

    Without that, so-called “screening” simply resulted in far too many patients being subjected to the stress of investigation of weakly suspicious lesions and, especially in the early days, the huge costs and trauma of open biopsies, often with frozen section, and the awfulness of women going off to sleep and not knowing how they will wake up!

    1. Harriet Hall says:

      @pmoran,

      “Is that because, as I suggest that there is the prior assumption of adequate cost-effectiveness, or because it is expected that the recommendations will (also) be applied within a predominantly private, fee-for-service system wherein there is no tradition of considering costs?”

      I don’t think the USPSTF or the American Cancer Society have any “prior assumption of adequate cost-effectiveness.” Do you have any evidence that they do? I think they are doing their best to evaluate the scientific evidence for harm and benefit and leaving it to others to consider costs. Considerations of cost can only come later, after the scientific evidence is available. There is a clear tradition of examining cost-effectiveness in the medical literature. And medicine in the US is not just private and fee-for-service. Consider Medicare, the VA, and the huge DOD medical system. Also consider HMOs and other systems that are not fee-for-service. And consider that insurance companies are constantly trying to reduce costs; yet Aetna, for example, not only pays for but recommends annual mammograms for women over 40.

      “so-called “screening” simply resulted in far too many patients being subjected to the stress of investigation of weakly suspicious lesions…”

      Why do you say “so-called”? And the whole point of the post was to address the deficiencies of current practice.

      I notice that you are quick to criticize, speculate, quibble, and nitpick but have no better plan to suggest. And you didn’t even bother to educate yourself before you started complaining: you admitted you are “not up on the latest data.”

  51. Scott says:

    There *is* a widespread attitude in the US that healthcare is either free, or so cheap that we can easily provide the best possible care to everyone. Any suggestion that cost-benefit analysis should come into it is promptly met with accusations that you’re trying to kill Grandma. The most notorious recent example is probably the whole “death panels” fiasco, but the attitude exists on both ends of the spectrum.

    Here’s a typical exchange (based on a real conversation, only slightly paraphrased):
    “Everyone deserves the best possible care.”
    “The best possible care keeps getting more expensive. Medicare costs are already through the roof, and will continue to rise. We have to start thinking about where our limited resources can have the greatest effect.”
    “Human life can’t be treated that way! We’re the richest country in history, we can provide proper health care.”
    “Medicare is already X% of all federal spending, health care is Y% of GDP, and those are going up. We’re running out of money.” (X and Y were actual numbers, which I’d looked up that day but don’t have to hand right now)
    “I refuse to believe that. There’s no way we spend more than a couple percent of the budget on healthcare.”
    “Well, we do.”
    “I won’t believe it. It’s unacceptable.”

    1. Harriet Hall says:

      @Scott,

      Your point is well taken, but I don’t see that it applies to mammography screening recommendations.

  52. Scott says:

    The very fact that the USPSTF doesn’t consider cost makes it germane, I think.

    Especially since the cost-effectiveness bit IS part of the scientific evidence – it’s what tells you “$X per QALY.” What the threshold for X should be in order to be funded then becomes a political/economic question, but expressly disclaiming cost consideration is a critical gap in the scientific analysis.

    The mandate for the USPSTF is, in this regard, fundamentally and profoundly flawed IMO.

    1. Harriet Hall says:

      @Scott,

      “The mandate for the USPSTF is, in this regard, fundamentally and profoundly flawed IMO.”

      Sorry, but I don’t see it that way. I think it is eminently reasonable to first determine the optimum screening strategy in an ideal world with unlimited funds, and only then to look at the real-world cost-effectiveness of different strategies. Society must then decide whether the expense of the optimum strategy is justified, considering limited resources. As it turns out, the new recommendations to screen every 2 years after age 50 ARE less costly than annual screening from age 40. If the USPSTF tried to make recommendations based on cost, it would only make people distrust the USPSTF as a kind of “death panel” and limit the effectiveness of what it is trying to do. I think it must remain “above the fray” so to speak, to maintain its credibility.

  53. Scott says:

    I’m not suggesting they “make recommendations based on cost.” I’m suggesting they determine the cost and include that fact along with the recommendation… ideally for a range of options.

    “The most effective and recommended strategy is A. A costs $X/QALY.
    B is not as effective as A, the difference is so much. B costs $Y/QALY.”

    Without that, meaningfully informed decisions cannot be made.

  54. Harriet Hall says:

    @Scott,

    I fully agree that we need cost information and that we can’t make meaningfully informed decisions without it. Nevertheless, I don’t think that should necessarily be part of the USPSTF mandate. It would greatly add to their burden, and they can’t do studies of their own but can only review published studies. Reliable cost information is often not readily available, and costs vary widely in different geographical areas and under different payment systems. Once optimum screening strategies are determined, it can be left up to other groups (with input from economists) to compare strategies for cost-effectiveness.

  55. Scott says:

    I guess part of my thinking is that there isn’t presently anyone else on whose plate it could be put (AFAIK), but you make good points. That such information needs to be available and considered is more important than the particular body that produces it anyway.

  56. pmoran says:

    I don’t think the USPSTF or the American Cancer Society have any “prior assumption of adequate cost-effectiveness.” Do you have any evidence that they do?

    Well, it is a reasonable presumption that those experts will be aware of the results of hundreds of studies into the cost-effectiveness of mammography.

    Why do you say “so-called”?

    I referred to “so-called” screening because if testing of asymptomatic individuals is left too much to the whim of patients and practitioners you lose control over costs and the potential for harm. Screening in the public health sense seeks defined outcomes in specific populations.

    And the whole point of the post was to address the deficiencies of current practice.

    ?

    I notice that you are quick to criticize, speculate, quibble, and nitpick but have no better plan to suggest. And you didn’t even bother to educate yourself before you started complaining: you admitted you are “not up on the latest data.”

    Gratuitous ad hominem, none of which makes anything I say invalid. That includes my simple comment on the principles that nearly all countries apply to the screening of asymptomatic populations.

  57. Harriet Hall says:

    @pmoran,

    “I referred to “so-called” screening because if testing of asymptomatic individuals is left too much to the whim of patients and practitioners you lose control over costs and the potential for harm. ”

    What are you talking about? Evidence-based recommendations for screening are developed precisely so it isn’t just left up to the whim of patients and practitioners.

    “Gratuitous ad hominem, none of which makes anything I say invalid.”

    It is not ad hominem to repeat what you yourself said, that you were “not up on the latest data” yet you offered your opinions.

    You have not yet offered your own (presumably whim-free) recommendations for screening. I’d be interested to hear what you would recommend and why.

  58. pmoran says:

    “I referred to “so-called” screening because if testing of asymptomatic individuals is left too much to the whim of patients and practitioners you lose control over costs and the potential for harm. ”

    What are you talking about? Evidence-based recommendations for screening are developed precisely so it isn’t just left up to the whim of patients and practitioners.

    But not enforcible, which can jeopardise the benefit vs cost and risk of the whole program.

    We are into the selective quoting stage of our typical interchanges where the context of my statements can get long lost. When I made that comment I was explaining why some countries, like Australia and the UK, have found it prudent to provide free-standing, publicly run and controlled mammography programs. These can operate with remarkable efficiency when compared to private practice dependent upon a variable quality of radiological reporting and erratic decision-making in other respects. (This along with some earlier comments is not directed purely at the American system – I have been involved in both systems in Australia.).

    “Gratuitous ad hominem, none of which makes anything I say invalid.”

    It is not ad hominem to repeat what you yourself said, that you were “not up on the latest data” yet you offered your opinions.

    All I opined upon here was certain guiding principles of screening, which I in no way resile from.

    You have not yet offered your own (presumably whim-free) recommendations for screening. I’d be interested to hear what you would recommend and why.

    Showing that you have not bothered to try and understand understand the point I am making above. I have not challenged the guidelines at all, other than to point out that yearly mammography is almost certainly not very cost-efficient at the margin over second-yearly mamography. In that I was trying to reassure Janet that those offering her yearly mammography were not necessarily untrustworthy on that account. It is difficult to say what might be best for her personally, once you start to look at the question from the viewpoint of the individual.

  59. pmoran says:

    http://jnci.oxfordjournals.org/content/98/11/774.full

    This American study into the cost-effectiveness of mammographic screening contains this statement: “Although $63 billion is a large expenditure in total, it is an attractive investment if one considers the commonly accepted benchmark for cost-effectiveness of $50 000 per QALY”.

    This and other statements therein suggests that American screening agencies DO have a figure in mind for acceptable cost-effectiveness.

    QALY means “quality-adjusted life years” and takes into account adverse effects of screening in some. I have no idea what this figure might equate to in terms of cost per life saved.

  60. marilynmann says:

    @Janet Sorry for the delayed response. Yes, it sounds like you may have been in the high risk group with left main disease. However, when they say “surgery” they are not talking about placing a stent. They are referring to coronary artery bypass grafting (CABG), aka bypass surgery. There are some trials showing a mortality benefit for CABG for people in your situation but there are no such trials for PCI (percutaneous coronary intervention), aka stenting.

  61. Harriet Hall says:

    “not enforcible”!!

    I am going to stop responding to pmoran’s comments, since we are obviously talking past each other and only succeeding in annoying each other. Other commenters: please remind me of this resolution if I succumb to temptation again!

  62. Amalthea says:

    From reading the various comments it looks like every two years may be reasonable in my case since there’s a very good chance that my grandmother’s cancer was due to radiation exposure at work.
    Definitely something I need to discuss with my doctor since there are two different recommendations out there.

  63. pmoran says:

    I am going to stop responding to pmoran’s comments, since we are obviously talking past each other and only succeeding in annoying each other. Other commenters: please remind me of this resolution if I succumb to temptation again!

    That is by no means my perception of the state of the matters in dispute, but I will respect this as a wish not to engage further.

  64. donwilcox says:

    If two sides of a debate each have difficulty in proving that they are right despite many, many studies and many analyses….and especially given that a strong debate even persists, is it fair to conclude the following?: Wherever the truth really lies (even if we can never really know it with certainty), the magnitude of the benefit of the correct course of action is actually quite small. Were the magnitude of benefit of one approach over the other large, then the question would be easier to answer and less debated. We don’t still argue over the benefit over risk of antibiotics for confirmed bacterial pneumonia or excision of still localized melanoma.

    If a patient chooses to get routine screening mammograms or to not get them and asks my opinion, I would be inclined to say, whichever route she chooses, if her decision ends up being statistically the wrong decision (if someday the truth is really known), it will only be wrong by a small degree and thus I would support any decision she now makes based upon what makes her most comfortable.

    This is separate from the issue of what various agencies and organizations should or should not be vociferously promoting……though I would add that if an organization is spending huge amounts of money and other resources on promoting screening mammograms, even if they are right about the net benefit, they are likely to be wrong because the magnitude of the benefit must be small……again, I assume this because it is still an active debate.

    Am I right? Thanks.

  65. dinseattle says:

    I know this is an old thread, but figured someone might read this. Dr Gorski is correct that a radiology report with a BI-RAD4 score should be biopsied, even though 70 to 80% of them will be benign. However, what I have recently discovered is that there is a trend toward not using BI-RAD3 anymore, so BI-RAD4 is losing its distinction.

    I had a followup from a screening mammogram, and after the diagnostic mammogram had a 30 second consult with a radiologist who said I needed a CNB. He hinted at of course no one wants to wait 6 months. Well, perhaps I would have, but didn’t object or ask the proper questions. So the report has me as a BI-RAD4. Well, the CNB for the 4mm cluster of microcalcification found FEA as the most significant finding. While the radiologist and pathologist all insist that I need further surgery, the surgeon was actually concerned with what I knew and what I wanted to do and was fine with my decision to wait 6 months for another picture. At this point, I feel confident that I should have been considered a BI-RAD3.

    I told the surgeon I had read on the internet that radiologists had stopped using BI-RAD3 and I expected him to tell me that was nutty, but instead he confirmed it for their large practice. He said that before the BI-RAD scale, they would get detailed narratives from the pathologist that were hard to evaluate and the BI-RAD scale was wonderful in its clarity and also that they could track how accurate their judgements were over time. BI-RAD3 was designed to have a 98% accuracy, ie miss 2% of things that should eventually be treated. At their practice, the actual rate of missing something was .76%. But on their own without consulting other physicians– perhaps worried about lawsuits, perhaps women didn’t like to wait — they decided to eliminate the Bi-RAD3 score. So now BI-RAD4 is less meaningful.

    I just read Critical Decision by Dr Ubel, based on Harriet Hall’s review and highly agree with her recommendation to read it. Several times he talks about people getting advice for “watchful waiting” interpreting that to mean that they have something wrong but the doctor is refusing to treat it!

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