I've written more times than I can remember about the phenomenon of overdiagnosis and the phenomenon that is linked at the hip with it, overtreatment. Overdiagnosis is a problem that arises when large populations of asymptomatic, apparently healthy people are screened for a disease or a condition, the idea being that catching the disease at an earlier stage in its progression will allow for more successful treatment. Two prominent examples include—of course—screening for breast cancer with mammography and screening for prostate cancer with prostate-specific antigen (PSA) testing, and I've written about the problem of overdiagnosis with each of them on many occasion. Basically, overdiagnosis occurs when the screening test picks up what we call "preclinical" disease (i.e., disease that hasn't become symptomatic) that, if left untreated, would never become symptomatic or endanger the health or life of the patient). Although intuitively, it seems to the lay public (and, truth be told, most doctors) that detecting cancer earlier must be inherently better, it turns out that it's way more complicated than you think. There is a price to be paid for early diagnosis in the form of overtreatment of disease that doesn't need treatment and for disease that is destined to threaten the life of the patient earlier treatment doesn't always result in better outcomes. Also, whenever you screen for a condition in asymptomatic people, you will always—always—find much more of it, and the significance of those added diagnoses is not always clear, as a new study in JAMA Oncology shows.
Before I get to the meat of the study, from my perspective, nowhere is the problem of overdiagnosis and overtreatment in cancer screening as pronounced than in the condition known as ductal carcinoma in situ (DCIS). DCIS is commonly referred to as "stage 0" breast cancer and is characterized by milk duct cells that appear malignant but remain confined to the milk ducts. In other words, they haven't invaded the tissue surrounding the ducts. In general, DCIS is treated similarly to breast cancer, with surgical excision, either by mastectomy or breast conserving surgery, followed by radiation therapy if breast conserving surgery is used. Then, depending on its hormone receptor status, adjuvant treatment consists of blocking estrogen for five years. The rationale for this treatment is the view of DCIS as being a precursor to fully invasive breast cancer and that treating the DCIS will prevent the development of breast cancer. Over the last couple of decades, however, it has become clear that not all DCIS is created equal. Much of it will never progress to breast cancer in the lifetime of the woman (particularly if the woman is older, which means less time for fully malignant transformation to occur). Evidence suggesting this includes studies showing an increase in DCIS incidence by 16-fold since the 1970s, when mammography started to be introduced on a large scale, with little change in the incidence of invasive cancer. Today, 20-25% of mammography-detected breast cancer diagnoses are DCIS; forty years ago, DCIS was an uncommon diagnosis, except associated with an invasive cancer.
Screening for breast cancer tends to be based on the concept that progression from normal duct cells to invasive cancer follows more or less a linear progression, and then invasive cancer grows in the primary organ and eventually spreads, either through lymph vessels or the blood, to distant sites. By this paradigm, effective screening should result in finding disease earlier and thus preventing patients destined to develop metastatic disease from progressing to that point because the disease is removed before it can metastasize. This should result in what is referred to as a "stage shift," in which the incidence of metastatic disease at diagnosis and of locally advanced disease declines, "shifting" the stage lower, to smaller, more localized disease. Unfortunately, although there is evidence of a small stage shift for breast cancer, the decline in incidence of advanced disease is far lower than the amount of DCIS diagnosed, meaning that most DCIS is almost certainly overdiagnosed. Indeed, in the accompanying editorial to this study, Laura Esserman and Christina Yau note that long-term epidemiology studies have demonstrated that the removal of 50,000 to 60,000 DCIS lesions annually has not been accompanied by a reduction in the incidence of invasive breast cancers. The problem, of course, is that we don't know which cases of DCIS are destined to progress and which are not; so we have to treat them all the same.
This new study introduces a new wrinkle into the situation. You've probably seen the stories about it, such as one in the New York Times entitled Doubt Is Raised Over Value of Surgery for Breast Lesion at Earliest Stage. The reason is that the study questions whether treatment of DCIS actually decreases a woman's risk of dying of breast cancer, based on an analysis of the Surveillance, Epidemiology, and End Results (SEER) database, a massive database maintained by the National Cancer Institute of cancer cases and outcomes. Specifically, the investigators (Narod et al) from the Women’s College Research Institute, Women’s College Hospital, and the Dalla Lana School of Public Health at the University of Toronto looked at the SEER18 database, which covers approximately 28% of the U.S. population. (The SEER database is maintained by a number of local registries; so it is basically a database of multiple local cancer registries.) From the SEER database, Narod et al identified 108,196 patients with DCIS diagnosed from 1988 to 2011 who formed the cohort studied. Patients with microinvasion (a tiny area of invasive cells) were excluded because that is generally considered invasive cancer. They then calculated a standardized mortality ratio (SMR), which is the ratio of the risk of dying in the study cohort compared to the risk of death in all women in the US population.
The first finding of the study is that the breast cancer–specific mortality over 20 years was 3.3% (95% CI, 3.0%-3.6%), which is similar to the lifetime risk of all women of dying of breast cancer, according to the American Cancer Society (2.7%). Next, the risk of death from breast cancer among all women with DCIS was 1.8 times greater than that of the US population (SMR, 1.8 [95% CI, 1.7-1.9]). Not surprisingly, the SMR decreased with increasing age at diagnosis, from 17.0 for women with DCIS before age 35 years to 1.4 for women older than 65 years. This is not surprising, given that younger women have a much longer time to live during which breast cancer can develop than older women. It makes intuitive sense. Indeed, as Esserman and Yau observe, DCIS in women under 40 is likely biologically different, because it would not in most cases be detected by mammographic screening and would thus be first noticed as a lump or other symptom. For these women, continuing current treatment protocols is probably appropriate.
There were other risk factors besides age at diagnosis of DCIS that predicted breast cancer mortality. For example, black women had a higher risk of death from DCIS than white, non-Hispanic women (HR 2.42 [95% CI, 2.05-2.87]; p < 0.001). Other factors were related to the tumor itself and included tumor size, grade, and the presence of a characteristic of DCIS called comedonecrosis, which has long been known to be a marker of more aggressive DCIS. The results of this analysis were robust and did not change substantially when patients with microinvasion or patients with a breast cancer death or recurrence within 6 months of the DCIS diagnosis were included.
Another result of the study is that aggressive treatment of nearly all DCIS does not appear to lead to a reduction in breast cancer mortality, which is consistent with an analysis of the NSABP B-17 and B-24 trials published four years ago. Basically, adding radiation therapy after lumpectomy also appears to have no effect on the risk of breast cancer mortality and might even be slightly higher. What this result suggests is that radiation therapy might not be necessary for the majority of DCIS cases.
The last finding is one that will be harder for doctors and patients to wrap their brains around, which is that DCIS might be more of a risk factor for ultimately developing breast cancer than a precursor to breast cancer. The reason is how similar ipsilateral (same side) and contralateral (opposite side) recurrence rates were, 5.9% and 6.2%, respectively, at 20 years. Recurrence of DCIS was not associated with increased risk of death for breast cancer, but an invasive recurrence was, hazard ratio 18.1 for ipsilateral recurrences, 13.8 for contralateral recurrences. As the authors put it:
The finding of greatest clinical importance was that prevention of ipsilateral invasive recurrence did not prevent death from breast cancer. Women with DCIS who developed an ipsilateral invasive in-breast recurrence were 18.1 times more likely to die of breast cancer than women who did not. For patients who had a lumpectomy, the use of radiotherapy reduced the risk of developing an ipsilateral invasive recurrence from 4.9% to 2.5% but did not reduce breast cancer–specific mortality at 10 years (0.9% vs 0.8%). Similarly, patients who underwent unilateral mastectomy had a lower risk of ipsilateral invasive recurrence at 10 years than patients who underwent lumpectomy (1.3% vs 3.3%) but had a higher breast cancer–specific mortality (1.3% vs 0.8%). Patients who had a mastectomy had cancers with a larger mean size and higher grade than patients who had a lumpectomy (eTable 5 in the Supplement). After adjustment for tumor size, grade, and other factors, the difference in survival for mastectomy vs lumpectomy was not significant (HR, 1.20 [95% CI, 0.96-1.50]; P = .11).
In other words, the type of treatment for DCIS didn't matter. The risk of death from breast cancer was the same regardless, and very low. Moreover, these data challenge the existing paradigm of DCIS as a precursor of breast cancer:
Only a fraction of treated DCIS lesions progress to invasive breast cancer,13 but in the absence of treatment, the risk of invasive cancer is much higher.14 Also, mortality from breast cancer in women with DCIS increases substantially following the development of an invasive local recurrence.4,5 However, if DCIS were truly a (noninvasive) precursor of breast cancer, then a woman with DCIS should not die of breast cancer without first experiencing an invasive breast cancer (ipsilateral or contralateral), and the prevention of an invasive recurrence should prevent her death from breast cancer. Surprisingly, the majority of women with DCIS in the cohort who died of breast cancer did not experience an invasive in-breast recurrence (ipsilateral or contralateral) prior to death (54.1%). Furthermore, preventing the invasive in-breast recurrence (with mastectomy or radiotherapy) does not reduce mortality from breast cancer. This is in keeping with the findings of other studies.
This study is, of course, not without weaknesses. Any study that relies on the SEER database will have the weaknesses inherent in how the SEER database is put together. The database has been in existence many years and undergone multiple revisions. It's also a bit slow to add data elements considered important to breast cancer treatment, such as HER2 status, as I discovered in 2009 when I wanted to do a project involving the SEER database. For instance, it's possible that some cases of DCIS actually had microinvasion. Also, the authors didn't have data on which DCIS cases were detected by mammography and which were symptomatic, although it's likely that a small minority were symptomatic given that the vast majority of DCIS is detected by mammography. There were also no data on margin status. A positive margin (a margin in which tumor cells actually reach the surgical margin) is associated with a higher risk of recurrence. There are also vagaries of how multiple recurrences are coded.
So where to go from here? In an very rare occurrence, I cannot agree with Monica Morrow about this:
Dr. Monica Morrow, chief breast cancer surgeon at Memorial Sloan Kettering Cancer Center, said it made more sense to view D.C.I.S. as a cancer precursor that should be treated the way it is now, with a lumpectomy or mastectomy. She questioned whether those women who were treated and ended up dying of breast cancer anyway had been misdiagnosed.
In some cases, pathologists look at only a small amount of tumor, Dr. Morrow said, and could have missed areas of invasive cancer. Even the best mastectomy leaves cells behind, she added, which could explain why a small number of women with D.C.I.S. who had mastectomies, even double mastectomies, died of breast cancer.
Given the large numbers, I find it to be bordering on wishful thinking to speculate that so many of these women had been misdiagnosed that it significantly affected the results of this study. Yes, pathologists only look at a relatively small sampling of tumor, because to look at the whole thing for every patient would be so labor-intensive and expensive as to be impractical. The same could be said of any operations we do, and we've accepted this limitation since pathologists started looking at tissues under the microscope. It's highly unlikely that rates of misdiagnosis are so high as to have made a difference.
What I think this study really means is that there is an urgent need for better molecular markers to determine which cases of DCIS are dangerous and which are not, something someone well known to readers of this blog has joined with others in arguing before in the medical literature. Until we have such prognostic markers, we will have this dilemma. Esserman and Yau suggest:
Narod and colleagues4 have assembled an impressive analysis on the basis of SEER data. There are limitations of SEER, but the large numbers and long-term follow-up provide a compelling case that it is time for change. The community of radiologists and surgeons needs to be part of the call for change. Given the low breast cancer mortality risk, we should stop telling women that DCIS is an emergency and that they should schedule definitive surgery within 2 weeks of diagnosis. The sum total of the data on DCIS to date now suggest that:
- Much of DCIS should be considered a “risk factor” for invasive breast cancer and an opportunity for targeted prevention.
- Radiation therapy should not be routinely offered after lumpectomy for DCIS lesions that are not high risk because it does not affect mortality.
- Low- and intermediate-grade DCIS does not need to be a target for screening or early detection.
- We should continue to better understand the biological characteristics of the highest-risk DCIS (large, high grade, hormone receptor negative, HER2 positive, especially in very young and African American women) and test targeted approaches to reduce death from breast cancer.
Of these, I think #4 is the most important, but unfortunately this approach will take years to bear fruit. In the meantime physicians and patients are left to struggle through as best we can with incomplete data. Nothing should yet change in the near term in our approach to DCIS in young women and with unfavorable characteristics, but it's becoming increasingly clear that something needs to change is in our approach to lower risk forms of DCIS.
- Log in to post comments
More like this
#4 there speaks to me. The diagnostics and testing industry are really working hard on this for non-invasive liquid biopsy in peripheral blood.
Knowing the HER2 and ER/PR status is so important.
BMC Cancer. 2015; 15: 468.
The prognostic role of HER2 expression in ductal breast carcinoma in situ (DCIS); a population-based cohort study
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4464713/
Orac is going to hate me for this - but I have to say that the image shown as ductal carcinoma in situ doesn't look like it to me. It just doesn't meet criteria (cytologic and architectural). If pressed to make a diagnosis on that one image I would've said it represented florid ductal hyperplasia (benign) or maybe an intraductal papilloma (also benign). I just showed it to a pathologist colleague who agrees that it looks benign.
Maybe Michael and T. Bruce can chime in with their thoughts (probably they'll disagree and it'll be further evidence that pathologists can't uniformly diagnose DCIS). :)
I absolutely DO NOT WANT this discussion to be derailed into an argument over whether the photomicrograph I included from Wikipedia is truly DCIS or not. So I am going to remove it and replace it with another one. Any further comments on whether or not the photomicrograph above is DCIS or not will be deleted. Sorry to be so blunt, but I need to nip this in the bud right now.
I question whether the typical patient could deal psychologically and emotionally with the knowledge that they are living with a malignancy that isn't being treated, no matter whether it is statistically harmless. Perhaps removal has other, non-medical, benefits that outweigh the hard statistical facts.
Just a thought.
As a woman (early 50s), that's a good question, Harold. Would I be more comfortable with watchful waiting or treating it? I don't really know. I'd have to wait for my doctor to give me all the pros and cons based on me. But I think it would be very difficult to just wait.
It would vary by person, and is one reason that patients get frustrated in a paternalistic medical setting. Since ultimately studies will create health insurance policy, it is too bad there can't be collaborative decision between doctor and patient with information such as this shared with the patient so they can make an informed decision about watching and waiting. Currently Mr Woo's eight-plus year old uncle is doing that with prostate cancer. I believe, knowing the statistics (and past disappointments with a few surgical outcomes), that I would be fine watching and waiting if I were reviewed every six months or so.
Eighty! Between KIndle's aggressive auto-correct and lack of preview...
Speaking for myself, I would agree that, if there was something precancerous growing in or on me, I'd want it removed.
I think that scars are stories, and all we are is a collection of stories. Sure, some stories are more exciting than others, and the scar from a precancerous removal may not be the most exciting thing, but I'd much rather have the scar. I don't set out to get scars on purpose, and I don't enjoy the boo-boo that causes them, but those I have and those I'm going to have don't bother me.
However, not everyone feels the same, particularly someone who is younger. For those that feel that way, if the evidence shows that waiting and watching is safe, I'm glad they may have the choice.
I leave the discussions of what the evidence does or does not show to those who better understand it.
What I would be curious about is how the clinical trials that made these interventions common practice failed.
This seems to be a little-discussed topic by Orac.
Were the samples too small? Bias in the choices, whatever?
Any experts able to expand on this?
Outside looking in, I don't envy either the doctor or the patient having to sit with uncertainty. The quacks take the easy road for they are always certain.
From my vantage point, my decisions are my own. If I don't agree with my primary physician's plan of action, well, that's what second opinions are for. At least for now.
In Latvia everything is easy: each of our governments pats itself on the back how good they are to provide mammography, and women are told they are ungrateful because about 35% of the target group uses this great oportunity.
Whats next? If either woman or her gynecologist is informed, she may be referred to the Breast disease centres - we have a couple, and they are getting less and less money. Others are told to do sonography, but it 3-6 months waiting time, so very often nothing is done untill tumor is palpable and about third of all patients ar first diagnosed with stage III or IV cancer, because, as we are told, they did do mammography.
As to overtreatment - Both clinical university hospitals have breast disease specialists, and, at least the one who treated me, was ready to wait if there was no hurry. There was also a lenghty article in local medical journal written by local professors where it was stated, that DCIS and even LCIS can be observed allthough doctor must provide complete information to the patient. So it seems that the most vulnerable are women in the rural areas, living away from transport networks, because even if they reach breast disease expert, they will opt for the radical solution because they will not be able to come for regular check-ups.
zebra, Here's another one for you (including a quote from our host).
Ioannidis: Making Medical Science Look Bad Since 2005
And if Orac doesn't move quickly enough for you on your desire for him to tackle the flaws in mainstream medicine, there's always Ben Goldacre's site at www.badscience.net.
Mrs Woo,
There is a lot of work going on in doing that kind of shared decision making between docs and patients, especially in areas where there is a lot of uncertainty as to best plan of action (wait vs treat now vs treat now very aggressively being a classic one).
I also know there is some money for research to see about dialing down some of the more aggressive screening programs so hopefully there won't be so many people with that if I know there is a something I want it cut out like Mr Johnny. Because part of the problem is if we look hard enough there probably is something that might not be a nothing in all of us.
I do really believe that breast cancer screening by mammography is the perfect example of what happens when a medical procedure is implemented without waiting for convincingly proofs of efficacy, but only on hopes.
When proofs arrive, and are contrary to what was hoped for, it becomes impossible to stop.
perodatrent,
If only politics (and business) would stick to serving medicine instead of running it, we would be much better off.
But try telling that to the politicians and the business people; they are as confident of their f-ups as the quacks are of their own.
#14 perodatrent,
It's just a matter of allocating scarce resources.
Our experts in medical research and statistical analysis first have to deal with the things that cause real harm to patients, like reiki and homeopathy, and the faulty design of studies on acupuncture.
It's a crisis I tell you, not like the trivial stuff you seem to be worried about. I'm sure those clinical trials got peer reviewed, after all.
zebra, how about those promoting reiki and homepathy take a dive, stop with their crap, and let scientists focus on other more promising avenues for the good of humanity. They are the ones trying to insert themselves into medicine not the other way around.
Oh, this is going to be a fun conversation to have with my doctor. I have a family history of breast cancer (on my dad's side). My aunt had a double mastectomy for DCIS. which might seem like and over reaction, but her twin sister also had a double mastectomy for some kind of breast cancer (I don't remember what kind, just that is was not hormone sensitive). And part of the reason that *she* had the major surgery was because her much older sister died of breast cancer.
So now I'm in a weird place. Technically i have a family history, so I should be screened vigorously. But I personally think that there is some chance that the two younger aunts only ended up having surgery because they were screened hard, because their sister died. But I also know that for my oldest aunt, there was some serious mis-diagnosis. So looking at the chart, it says I'm in trouble. But part of me says that it could be a case of, when you go looking for trouble, you might find it.
So I have to wonder how much of the rate of diagnosis and overtreatment of DCIS is caused by this kind of feedback loop?
JustaTech:
It's hard to say from the information you provided, but it sounds like you could be a candidate for genetic testing. Check with your doctor, and remember that since the breast cancers were on your father's side of the family, you need to consider cases of prostate cancer as well when deciding whether to get tested.
It is nice to see that there is at least some guidance on what advice I should give the clinicians when these questions inevitably come up. It would be nice, though, to have some practice guidelines. We are all basically winging it here, and just about everyone, including the patients, just want to cut it out. Perhaps even terminology changes might be in order for some of the things that we now are calling low grade DCIS.
This is going to be a long and difficult effort to change things.
Johnny--
It's not the scars I would mind: it's the surgery and recovery. I've recovered from surgery once, and it wasn't fun: hospitalization, then a couple of weeks off work while I was getting back to being able to walk more than a block.
That was with everything going basically well: no hospital-acquired infection, and I handled the anesthesia moderately well (except that it may be why I can no longer eat spicy food).
#9, zebra
The question is really simple. Trials well managed do not show the health improvements that trials of lesser quality had shown. Unfortunately, decisions were made (by physicians and politicians together) that were based on the first trials. Or, as the notorious politician (insert the name) put it, "Mistakes were made".
#16, zebra
Of course, largely imaginary (radiological?!) diseases as DCIS can be easily cured by fully imaginary Alt Med practitioners.
#21 perodatrent,
Yes, of course, to both answers.
But people here do not want to discuss why these things happen. They do not want to admit that bias, magical thinking, and stupidity, exist among their chosen tribe.
How is it that Orac, who ferrets out and publicizes every flawed detail in studies associated with alt-med, no matter how obscure and inconsequential the subject, does not educate his public about how this tragedy happened in the very field of his expertise?
What made the studies of "lesser quality"? What are the psychological factors that caused people like Orac to miss those flaws? Isn't this the kind of analysis that we need to prevent a repetition?
As for the alt-med "cures"-- I can imagine many anecdotes told (perhaps even here) about how "my friend died because she chose homeopathy instead of mastectomy" when this condition was discovered. And of course, "but my other friend's life was saved by surgery and radiation".
Very scientific.
Using the search function, both here and at Orac's "secret friend's" other blog at Science-Based Medicine (https://www.sciencebasedmedicine.org/) would reveal a plethora of articles discussing the issue. Should that prove too difficult, please review the first few paragraphs of this article for at least a brief overview of the problem. Working on reading comprehension is left as a exercise for the student.
#23 sirhcton,
"reading comprehension"...
Either that is your problem, or like most people here you wish to change the subject.
There were studies done that convinced people to intervene aggressively when this condition is discovered.
My question remains: What were these studies? How were they flawed? Why didn't Orac raise the alarm as he does with flawed studies of acupuncture and so on?
I agree that the bottom line is that we need good new molecular markers to predict the behavior of DCIS and atypical ductal hyperplasia, in the same way that we need such markers to evaluate low grade invasive breast carcinoma, prostatic adenocarcinoma etc. Until we have those markers, discouraging overtreatment will be difficult.
By the way, the new DCIS image is much, much better.
d&r
"But people here do not want to discuss why these things happen. They do not want to admit that bias, magical thinking, and stupidity, exist among their chosen tribe."
My joining in indirect mockery of what you write is certainly not something to be proud of. It is my knee-jerk reaction to your insults to the very real contributions made by Orac and others here even if they don't pass your worthy-to-write-about test.
While I'll work though differences with others here because I respect their opinion and I hope they respect mine in any particular debate, I have a hard time with your whole schtick because I don't see you arguing from a point of integrity but rather for an agenda. And every item is twisted to fit that agenda including defending the ludicrous. But I'm glad you make you make it clear from time to time just what that agenda is.
And I'd ask who has the fixation here, Orac or you?
zebra,
Poor, poor misunderstood zebra.
The condition of DCIS was first characterized in the 80s as what appeared to be a precursor to invasive breast cancer. In the absence of data to guide them, what were doctors then supposed to do? Wait until it became invasive? Other cancers do better when treated earlier, so it seemed sensible to treat aggressively while gathering more data. To figure out what is the most effective treatment you need to follow up early and later treated patients over a period of several decades. That data is now coming in and we can start to figure out more effective ways of screening for and treating (or not) DCIS.
You could always try looking on PubMed. This article from the BMJ in 1992 calls for more studies to understand DCIS better, which is what has happened.
They weren't; they just weren't large enough or of long enough duration to get the required information.
I see nothing the alarm should have been raised for. We didn't have all the required information before. We still don't ( we never do in medicine!) but we change practice as more information comes in. How else could it possibly be done?
Only one link in borked HTML.
# 22, zebra
This blog is Orac's, it seems. So, it is his choice which chapter of medicine to treat.
I am sure if you search the web you will find many places where a critical look is given to orthodox medicine. I mean, "rationally" critical.
I find this blog invaluable as a guide to American quackery. As I am myself prone to bias, magical thinking, and stupidity, Orac helps me against some kind of those items.
Random item in my Twitter feed just now
New tool will compare costs and benefits of cancer treatments
Sound sensible or a lot of hype?
And on breast cancer screening/treatment, when researching this you can't leave out the huge societal movement in the US for something to be done about it.
@#24
Pardon my incoherent first post. Thank you for your considered effort to decipher it and making my point for me. It's not often that such kindness is offered with this modern medium. You, sir or madam, are an exemplar of the first order. I bid you auf Wiedersehen as I move on to another engagement.
This such a complex issue with so many competing issues. As both a breast cancer survivor and a scientist (did my dissertation in breast cancer research, ironically) I can see this from many different sides. After I was diagnosed (stage II IDC, Her2+, no question at all about my treatment plan!) I saw the power of the Pink Ribbon and the strange cache of "rushing the pink sorority". New boobs, a dramatic story, plenty of public sympathy - what's not to like? For many women, there is a combination of fear - and, let's face it, peer pressure - to join the club. And there are no more lauded members than the "I HAD to have a mastectomy / double mastectomy" member. So brave. Such a hard decision. etc. Not to mention the simplistic thinking that no breasts = no breast cancer. After years of pink ribbons and pink marketing, there will be a large uphill battle for doctors to communicate the far more nuanced reality to women primed to be terrified when "breast" and "cancer" are used in the same sentence.
I had surgeries & radiation for DCIS back in late 2011-early 2012. Shortly after that, studies questioning that kind of treatment for DCIS started cropping up. With this newest study, I think I'll opt for watchful waiting/more frequent mammos should DCIS show up in the other breast. I am so over witless fear about cancer.
Krebiozen #27,
They weren’t [flawed]; they just weren’t large enough or of long enough duration to get the required information.
sigh
Dr Liz #32,
The kind of doctor we need more of.
Yes. Every one of us is subject to these kinds of influences, however intelligent or educated (or profoundly self-reflective) we may be.
Not just "ditzy autism moms".
zebra,
Would you care to expand on that? How do you think doctors should have treated DCIS before they had the information that has recently become available? Where was the "bias, magical thinking, and stupidity" in treating what was thought, with good reason, to be a precursor of invasive cancer?
Krebiozen #36
You want me to expand on my rolling my eyes and shaking my head in response to:
“They weren’t [flawed]; they just weren’t large enough or of long enough duration to get the required information.”
Or are you trying to change the subject to something else?
I know, zebra, I know. Doctors treating early-stage cancer patients based on information available at the time while initializing long term studies rather than waiting decades until the benefit of hind sight (from said studies) is so last season.
zebra,
Yes please. You have accused breast cancer doctors of “bias, magical thinking, and stupidity” for treating DCIS. What do you think they should have done differently before long-term large-scale studies had elucidated the etiology and prognosis if left untreated? It's a simple enough question.
Krebiozen,
If you want me to elaborate on my reaction to your statement:
"“They weren’t [flawed]; they just weren’t large enough or of long enough duration to get the required information.”
I'm happy to do so, but if you keep trying to change the subject, then you are wasting my time, since I will assume the next time you say something nonsensical like that, you will just change the subject again. No progress.
@40: If you'd check the archives, you'd see that he's written about this issue a number of times in the past. Prior to this, he wrote on several occasions that the proper treatment of very early asymptomatic breast cancers was unclear, and over-diagnosis was almost certainly happening. See the links from the first paragraph.
Since Orac told Zebra personally that "his presence was darkening the blog", it seems he's back with a vengeance in full troll mode.
I think Krebiozen is asking a perfectly reasonnable question, why don't you just answer instead of driving in a circle in your little clown car?
I don't remember saying that about zebra, but it wouldn't surprise me if I did, given zebra's recent comments.
zebra,
I didn't change the subject. You made a statement and I explained why it was wrong. You claimed that:
What studies are you referring to? You asked this question yourself, but I don't see you have answered it anywhere. Are you rolling your eyes because I have suggested that earlier studies of DCIS didn't include enough patients for a long enough period to figure out the effects of treatment on mortality? How could they have done?
The timeline of this is pretty clear. As Orac noted, increased incidence of DCIS has been seen since mass mammographic screening was introduced some 40 years ago. Before that DCIS was associated with invasive breast cancer, and at that time aggressive treatment of any kind of cancer was the most successful option available. The first papers I can find that started to express concern about the increasing incidence and prognosis of untreated DCIS in isolation were published in the late 80s and early 90s (I linked to an example above at #27), but oncologists clearly didn't have enough data to make a definitive statement so they suggested gathering some.
The study in question is the result of gathering that data. It looked at women with DCIS for up to 24 years i.e. at the data that has been collected since those concerns first arose. Since it may take decades for DCIS to develop into fatal breast cancer, and since more than 90% of breast cancer patients are alive more than 5 years after diagnosis, I don't really see how you could have answered the question, "what is breast cancer mortality after a diagnosis DCIS?" any more efficiently.
It seems to me that complaining about breast cancer doctors treating DCIS aggressively before they knew it had no effect on mortality is a bit like raging against Halsted for not doing lumpectomies.
Correction, should read: "The first papers I can find that started to express concern about the increasing incidence of DCIS in isolation and prognosis if untreated were published in the late 80s and early 90s (I linked to an example above at #27), but oncologists clearly didn’t have enough data to make a definitive statement so they suggested gathering some.".
Krebiozen is right to note that former trials
“... just weren’t large enough or of long enough duration to get the required information.”
The problem is that physicians -as everyone else- must arrive at a decision even without having full information about the problem they encounter.
Today's physicians are in a difficult position because, some time ago, some former physicians and politicians hoped -without evident proofs- that
"... screening is simple, effective, and inexpensive. In truth, it is complex, of limited effectiveness, and very expensive" (Raffle AE. New tests in cervical screening. Lancet 1998; 351: 297).
The problem is not science. The problem is that decision were made with very limited scientifical support.
In today's malpractice climate the consequence is that radiologists tend to lower the diagnostic threshold for breast lesions: in the USA False Positive mammograms are two times more than in Europe (Fletcher SW, Elmore JG. False-positive mammograms –can the USA learn from Europe? Lancet 2005; 365: 7-8).
Krebiozen #44,
You are the one who chose to answer my question-- don't blame me because you can't get whatever you are trying to say straight.
Are there "earlier studies" that "aren't flawed" or not?
If not, then why would you say "they aren't flawed"?
Are you saying someone decided to do a study that had insufficient participants? I hope that person wasn't one of your statistics students. Or that they published before the stated time span in the study design? You're not making sense.
Figure out what you meant, and then we can move on to the 24 year question.
Science Isn’t Broken.
"It’s just a hell of a lot harder than we give it credit for."
zebra,
As often with you I find I have assumed too much prior knowledge and understanding of the subject and then find myself having to backtrack and attempt to add to your education.
There were earlier smaller studies that were not flawed but neither were they designed nor powered to answer the question, "does treating DCIS reduce breast cancer mortality?".
There were, and they weren't.
You seem to think the only kind of study is a large RCT. It isn't. I suspect this is where you are mistaken. RCTs for surgery are relatively unusual, for what I hope are obvious reasons.
You can look at how the understanding of DCIS has developed over time by looking it up on PubMed and then look at the oldest studies that come up. You will find, for example, this literature review from 1992 that concluded, "the need to support clinical trials designed to determine the optimal therapeutic management of intraductal carcinoma is affirmed".
That imaginary person was not one of the many people I have taught biomedical statistics to over the years, no.
Come again?
I think I am, but you don't have the knowledge and/or the intellectual equipment to understand me. Is anyone else having trouble grasping my point?
I know what I meant as, I'm pretty certain, does everyone reading this but you, apparently.
The 24-year question? Tell me, how long does it take for DCIS to develop, when it does, into fatal breast cancer?
I got it just fine the first time. Z.'s repeatedly intoning "change the subject" is entirely opaque, though.
Krebiozen, your explanations have been very helpful to me the first couple of times. Now they're becoming a bit redundant although you do add more information as you go along (ie RCTs).
Clearly what is missing is that you haven't demonstrated the bias, stupidity and/or magical thinking of the scientists / physicians involved. Once their incompetence / villainy has been exposed, I think we'll be able to move past this.
There are days I long for the simplicity of the career of a quack. Simple answers to all health questions (eat that herb, do that detox) and if it doesn't work: "You didn't come to me soon enough/you didn't eat that herb properly" etc.
Medicine is complicated. Really really f***ing complicated. There are very few straightforward simple answers. As a family doc, it is hard to keep up with the medical literature, since as a generalist, I am expected to know a little bit of everything. Specialists have it easy in some regards, they just have to know everything about one small area (I'm often surprised at the lack of general medical knowledge in some sub-specialists--in particular surgeons. Sorry Orac, but you are a bit of a statistical outlier from your colleaugues)
Obviously we need better markers for the younger women with DCIS, so that we can sort out who actually needs aggressive treatment, and who can "watch and wait".
On a related topic .. I hope someone can enlighten me...
I may have inadvertently witnessed something concerning early detection of lung cancer:
one of my gentlemen has a former co-worker, age 75, a smoker, who has been worried about cancer- probably because both of his parents succumbed to different types of the illness- so he went for usual screenings of a few forms of the illness like colonoscopy and PSA.
.
About 6-7 years ago IIRC he was nervous about his continuous coughing so he harassed/ bothered a young doctor into ordering a series of lung scans that are not standard. She found nothing worrisome except for COPD.
Then about three years ago, he collapsed publicly with pneumonia which yielded more scans. Nothing terrible.
He also had screening prior to 2 joint replacement surgeries in the past year. Nothing new.
Recently, he has had more breathing problems and the doctor sent him for other scans ( CAT, MRI? I'm not sure) and then ....
a needle biopsy
which revealed a "not advanced" cancer.
HIs friend who is a nurse says he'll get chemotherapy.
Although I'm not entirely sure which scans he had over the past 6-7 years, he's had quite a few and none hinted at cancer until now. I wonder if his history helped him to 'catch it early". I however am not very hopeful for him -unfortunately-because ehe has additional health issues ( CV, borderline diabetes 2 and he's not the best patient for following orders). but he did push for tests.
As my PCP once explained to me, "we don't screen for lung cancer." Too many false positives. Whether this should be revised – and how – for high-risk patients is still an open question, as I recall.
As I've noted in the past, I've never worked in the medical field, and I had no problem following along.
I've worked with a few intelligence analyst over the years, and they make it clear that, while you would like to have infinite amounts of noise free data, what you have is a very finite amount of noisy data. I seems it's also true in weather forecasting, the economy, politics, partial physics, history, and anything to do with living organisms, including medicine.
Some people just can't deal with that.
I was first biopsied for suspected dcis in 2011. Strong fam hx.
Biop Twice since.
I skipped a year. Frankly I wanted a year off.
Next month I go in for it all. Wish me luck.
Krebiozen #49,
Then why are you bringing them up? And what were they designed to answer?
You seem to think the only kind of study is a large RCT. It isn’t. I suspect this is where you are mistaken. RCTs for surgery are relatively unusual, for what I hope are obvious reasons.
Could you explain how that works? It isn't obvious to me at all.
Why do we set a lower standard for deciding to perform surgery?
You seem to think the only kind of study is a large RCT. It isn’t. I suspect this is where you are mistaken. RCTs for surgery are relatively unusual, for what I hope are obvious reasons.
That should be in blockquote.
There are some trials in surgery comparing two different procedures for results, healing times etc, with participants assigned randomly so there are RCTs. But even then, both treatments aren't often equally applicable or recommended for an individual participant, making random allocation potentially unethical. And at least, for the surgeon blinding would be impossible.
But as for placebo controls, there's not really a way it would work - treat half the patients, and just cut the rest open and stitch so they can't tell if they've been treated or just wounded, and see how well each group fares.
I think the most common trial is treating a number of patients, and trying to match that set of patients as closely as possible with a group of patients treated with another procedure. In this care, there is no randomization, although the people compiling the data might be blinded.
gaist #59
So lets try to focus here.
First, why is there no randomization? You randomly pick some to receive surgery and some to not receive surgery.
Second, I repeat:
Why do we set a lower standard for deciding to perform surgery?
zebra,
This is doubtless longer than you like but I don't have time to streamline my thoughts at present.
You need to get a sense of the history of the battle against cancer in general and against breast cancer in particular. Reading Orac's blog and the SBM one will give you a good grounding - search for 'mammography', 'DCIS' or 'overdiagnosis'.
This paper from 2001 (PDF) discusses the potential for DCIS developing into invasive breast cancer (IBC), citing various studies that found an association:
The first reference (PMID 6275978) partially answers your second question. I'm out of moderation-free links so here's the abstract:
The fact that they had to review almost 12,000 biopsies to find 28 with just DCIS shows how difficult this was as a retrospective study. Note also the difficulty of identifying DCIS from a histology slide - I have no idea how histopathologists do it. It is only since the introduction of mass mammography that we have been able to identify enough DCIS cases to do a large prospective study that looks at a hard endpoint (mortality) to answer this question.
That's why DCIS has been treated aggressively in the past, because it made sense that removing pre-malignant tissue would prevent it developing into IBC. Even back then no one was sure if that association was a causal one i.e. does DCIS develop into IBC, or if it is just a marker for the subsequent development of IBC. In the absence of definitive evidence it seemed prudent to treat DCIS aggressively.
Before Halsted developed the radical mastectomy in the late 19th century breast cancer was a death sentence. The only even slightly effective treatment was radical and aggressive, making Halsted's treatment seem humane in comparison. Since then developments have been about improving efficacy with radiotherapy and chemotherapy, by using more conservative surgical techniques and, of course, by early detection. It is clear that the earlier you catch breast cancer the more successful treatment will be, making it reasonable to assume that treating DCIS will prevent invasive breast cancer and death. It now appears that assumption may have been mistaken in the case of some DCIS.
It's partly practical and partly historical. Here's a detailed discussion of the problems of designing RCTs in surgery.
zebra,
It's called a case-control study. Please go and at least read at least some of the Wikipedia entries on clinical studies before you wade into reforming the entire system of evidence-based surgery.
Because you don't want to not treat people with treatable conditions. Even drug trials for brand new drugs compare new drug-arm against best current treatment.
We don't. Trial forms are chosen to best fit the situation, and the initial hypothesis the researchers want to investigate.
But as you already know the best method, like you demonstrated in your first point, how would not treating half the patients improve the standard for "deciding to perform surgery"?
Krebiozen, ignoring your handwave/strawman in #62, and agreeing that you offer more chaff than wheat, let's bake a small loaf.
And there it is: Correlation not causality. "It seemed prudent."
So, I have this grandchild, and I am thinking about whether she should be vaccinated. I note that there are far more vaccinations than when I was a child. I note that many of the diseases vaccinated against are virtually nonexistent. I note a correlation between the age of vaccination and the onset of autism. I note that there are legal provisions to deal with people harmed by vaccines, so some risk exists. I realize there is no guarantee that there might not be some long-term effect yet to be discovered. I see that there is a community of people supporting the decision not to vaccinate. (Note also #32).
Would it not be prudent to avoid or modify vaccination?
Might it not "make sense"?
No. Or at least I don't think so.
What you're saying is:
(a) If the aim of a study is to establish the ten-year survival rate for 110 DCIS patients who were treated with lumpectomy and radiation and it does so, it's not flawed.
(b) It is of inherently limited utility for the purposes of establishing whether DCIS should be treated aggressively.
(c) Owing to the complexity of the subject and the number of unknowns, exactly how limited can only be determined by asking and answering numerous questions over a long period of time.
(d) Because it's not actually possible to know something in advance of knowing it.
(e) That's the opposite of magical thinking.
(f) It's also why people do studies.
No. It's a false analogy.
See if you can spot the meaningful difference.
Good grief. I give up.
Krebiozen,
If it's any consolation, I did learn things from your (and others) replies to zebra.
Thanks :)
#66, 67
It's always gratifying when one's adversaries in a debate admit defeat.
Never argue with an idiot. They drag you down to their level, then beat you with experience.
zebra, you didn't answer me.
How would your "You randomly pick some to receive surgery and some to not receive surgery." help improve the "standard for deciding to perform surgery?" like you put it?
And ann didn't admit defeat If you can't address her point, you've evading or admitting defeat yourself.
gaist #72,
I don't see where you asked that?
But anyway, that's what a trial is. Either surgery makes a difference in the progression of the disease (decrease, or even increase) or it doesn't. Seems obvious. Same would be true for any intervention of course.
As for Ann-- what point? She thought the reasoning was not analogous, but wanted me to read her mind as to why? That's childish, and what people do when they are unable to deal with the issue, so I consider it admitting defeat.
zebra,
That's an argument for a trial, any trial. And trials are being done.
How would denying half the patients a surgical procedure improve surgical technique or how/when it is performed?
Wouldn't it make more sense to see if - instead of just leaving half the patients to suffer and possibly survive on their own - to compare lets say a novel surgical technique against current standard medical intervention for same problem? By comparing these two groups, you could tell if the new method was safer or more dangerous than the current one, if patients healed faster or slower from it, if surgeons could perform it faster or with less expended resources, and so on. Whereas, comparing a surgical technique to nothing wouldn't reveal as much.
And as for ann... Yes, she did leave it as an exercise for you to figure out, but left a clue: "false analogy."
I'll leave another, while not admitting any sort of defeat...
vaccinations =/= treating DCIS
And to emphasize the point, as if it would remain unclear to anybody, is that surgery is different from drugs or less invasive medical procedures.
(Possibly) Apart from some cosmetic surgery, surgical procedures are undertaken to treat a real medical issue that is deemed more serious than cutting somebody open to attempt to fix it, so leaving patients untreated is both unethical, and undesirable. Not to mention unnecessary, because there are other, equally or more valid trial options available.
zebra@69: It's one thing to argue with a JAQ-off. It's another to be expected to hold the handkerchief while you're doing it.
zebra,
I certainly admit defeat trying to educate such person as willfully dense as you. It's your loss, not mine.
Krebiozen #77,
You are not an educator.
Much more like a pedantic advocate, and when faced with an argument that contradicts your position, you bluster and sputter because your "ipse dixit" is being challenged.
An educator would be able to deal with what I said.
zebra,
How very dare you! I take some pride in my abilities to educate people, and adjusting my approach until I succeed but I admit it doesn't seem to work with you. Maybe that's because my students have been people with a basic scientific education: graduates, medical students and doctors - my lectures were worth accredited CME points. So, there are dozens of people who would, I hope, strongly disagree with you, but I'm not going to persuade any of them to post here. I don't much care what you think. You have claimed to be both an educator and (IIRC) an Ivy League graduate, both of which I highly doubt based on your performance.
You haven't come up with an argument that contradicts my position. All you have done is to reveal your profound ignorance of this subject and your unwillingness to actually read any of the articles I have suggested.
I might be able to, if I had a few years to remedy the large gaps in your education, teach you how logic and basic statistics work and correct the poor reading comprehension you frequently reveal. However, I suspect Narad was correct some time ago when he concluded (IIRC) that you simply don't know how to think, and that is beyond my abilities to help.
Anyway, since I have a few minutes and an abnormal amount of patience....
How is making an informed decision based on the only information available at the time, "correlation not causality"? Do you even understand what the phrase means?
Let's take a look at that analogy.
1. We have an international community of doctor and scientists looking at the limited information available on the etiology and prognosis of DCIS, and making an informed decision based on that limited information. That's what I meant by "it seemed prudent" at the time; it's called the precautionary principle. It still seems prudent given the information they had at the time; for all they knew DCIS did turn into IBC. The information that would tell them with any degree of certainty did not exist.
Medical history is full of examples of "bias, magical thinking, and stupidity", many of which are often discussed here and at SBM. The aggressive treatment of DCIS when the information about its etiology and prognosis was unclear is not one of them.
2. We have an individual who is apparently ignorant of the large body of evidence that vaccines are safe and effective and is considering a very foolish decision that is in complete conflict with that evidence.
How is this in any way a good analogy? I see no parallels at all. In the first case the available evidence is taken into account and in the second it is not. Of course it would not be prudent to avoid or modify vaccination, there are thousands of studies globally that tell us that would be unwise. Was it wise to treat DCIS aggressively? Since DCIS looks histologically like something between normal cells and aggressive breast cancer, and in other forms of cancer, such as cervical cancer, the removal of precancerous cells prevents progressive cancer it was reasonable to assume the same would be true of DCIS. In some cases it probably does!
You mean a comment from a woman who had stage II IDC, Her2+ breast cancer and had a double mastectomy? I don't really see how that helps your position WRT DCIS.
krebiozen #79,
Blah blah phony indignation yadda yadda.
Of course I read your references; they support my argument, if anything.
But you refuse to read my analogy as written. Given the statement of what "I" "know" in that scenario, it makes perfect sense to decide not to vaccinate. It may be selfish and socially irresponsible, but it is not irrational.
The reference to #32 was in relation to the directly preceding sentence "I see that there is a community of people supporting the decision not to vaccinate." which you should easily recognize if you read her comment thoroughly.
So, we are talking about reasoning, and factors that influence decisions, as I said earlier. And you can find the similarities in this case with various of the so-called "unscientific" practices so often criticized here.
And "In some cases it probably does!" is another example.
zebra,
I'll add lack of a sense of humor to the list.
How so? Please be specific.
Of course it isn't, nor do I see any "bias, magical thinking, and stupidity".
In your analogy an uneducated person is making an uniformed decision that they are ill-equipped to make based on misinformation and outright lies from the antivaccine movement. I would call it naivity rather than stupidity. I reserve my bile for those who should know better, the Wakefields, Geirs and Hookers of this world.
It was an international community of doctors and scientists that decided to aggressively treat DCIS, which makes perfect sense given the information available at the time.
I read her comment thoroughly and see nothing about vaccination at all. I see a reference to the breast cancer survivor community and how the more nuanced approach to DCIS will affect their attitudes to breast cancer and its treatment. Perhaps you could explain how this has any relevance to people who choose not to vaccinate.
I can cite a hundred studies that show that the decision not to vaccine is a foolish one, that vaccines are effective and that the risk of the disease far exceeds the risks of vaccination. Can you cite any studies or other evidence that was available before the study under discussion was published that showed that aggressively treating DCIS was "unscientific" or that displayed, "bias, magical thinking, and stupidity"?
Another example of what? We don't know which cases of DCIS will lead to IBC, which is why Orac wrote, "there is an urgent need for better molecular markers to determine which cases of DCIS are dangerous and which are not".
Krebiozen,
Without suggesting in any way that Dr Liz is responding to my comment or supporting it:
"I saw the power of the Pink Ribbon and the strange cache of “rushing the pink sorority”. New boobs, a dramatic story, plenty of public sympathy – what’s not to like? For many women, there is a combination of fear – and, let’s face it, peer pressure – to join the club. And there are no more lauded members than the “I HAD to have a mastectomy / double mastectomy” member. So brave. Such a hard decision. etc. Not to mention the simplistic thinking that no breasts = no breast cancer."
So, the parallel is with the community of anti-vax moms, or autism moms, or alt-med/nutrition, whatever. Are you suggesting that one could not describe those groups in a similar manner? Are you suggesting that there is no magical/wishful/uninformed thinking involved?
Liquid nitrogen and scoop it out with a mellon-baller is not the method you're probing for, no?
After saying, days ago, “Orac’s blog, Orac’s choice” about zebra’s demands that Orac discuss failures of orthodox medicine, I think zebra merits a better answer than “shut up, you fool!” when he says something we don’t like.
At least, he seems to know something of medicine, and sure he knows how to use his cortical brain, unlike some other trolling corrispondents.
In the hypothetical scenario presented by zebra @ 64, he writes down a list of items which he uses to build his argument: a hypothetical grandma has a set of informations to use to decide if her grandchild has to be vaccinated.
I understand zebra has forced the analogy (better: he chose a worst one). But even if we accept his analogy, we cannot accept that the information grandma wants to use have a real utility: every “note” and “see” has an information content of zero (good studies don’t support them), and her “realization” seems very likely to Russell’s teapot. After all, how could you show me that there is no chinese teapot orbitating around the sun?
zebra,
I fail to see how breast cancer survivors celebrating their survival and raising awareness of the disease have any parallel to "anti-vax moms, or autism moms, or alt-med/nutrition" apart from them all being people with similar interests. What "magical/wishful/uninformed thinking" is involved in surviving breast cancer? I know that woo has infiltrated the breast cancer survivor community but I don't think it's a defining feature.
perodatrent #83.
First, I am not demanding anything from Orac. I am pointing out the similarities which exist between those engaging in the various alternative practices or thinking and those here who criticize them.
But I thank you for your comment and attempt to move the discussion forward, which is how learning takes place. Also, I missed your earlier comment #46, which does make for progress in this discussion. (I also should stipulate as I have in previous threads that I am talking primarily about USA practices.)
Your comment here however doesn't make sense grammatically-- "I note that there are risks associated with vaccination" is a factual statement-- both that I note it, and that there are risks. Likewise the other statements. No study would contradict them.
What the analogy is about is the process. Someone decides a course of action based on the information that he has, and also the biases and external pressures acting on him or her. You mentioned one pressure earlier-- malpractice. Dr Liz mentions peer/community pressure. Neither of those is "science". Consider Krebiozen's statement to which my analogy was a response:
So, Dr K says: "Some non-invasive lesions don't progress, but I don't know about DCIS, maybe it will because there is a correlation, but in many (most??) cases it doesn't....let's play it safe anyway and cut off everything in every case." Not so different from grandma.
Krebiozen #84
gaist @74: You're exactly right about comparing a new surgical technique to the standard of care. In most cases where a treatment exists for a specific condition, an RCT of a new treatment for that condition will be compared against the standard of care, not a placebo.
(Because it would be unethical to deny patients any actual treatment for their condition if one exists.)
zebra #86.
You say "... Someone decides a course of action based on the information that he has, and also the biases and external pressures acting on him or her".
You are right, as when you say that what grandma makes are "factual statements".
In terms of decision theory, all of them are beliefs. Everyone uses beliefs when deciding if one has enough information or needs supplementary information.
But there are better or worse beliefs. Those ones which are anchored to reality allow better decisions. And the belief that "...there are risks associated with vaccination" is worse than the belief that -for a population- risks associated with vaccination are lower than risks of disease.
Same for other "factual statements". Better decisions could be made if grandma had more useful beliefs.
Returning to DCIS, the problem was created when (remember "war against cancer"?) someone believed, with little support from science, that screening women could reduce mortality. Now we suck.
Must be nice to be an actor who writes his own reviews.
For someone who insists that his posts be addressed as written, you're awfully casual with the words of others. I did not say I wanted you to read my mind. I said I wanted you to see if you could spot the meaningful difference.
Without the part about me wanting you to read my mind, no, it's not.
The irony being that you could only have known that I wanted that via mind-reading, given the utter absence of any indication on my part that it was.
That's the problem with mind-reading. It's error-prone.
I've gotten better results by just asking for more information in such situations. Personally.
Hm.
I assume you mean the terms are that you're a person who knows only:
that there are far more vaccinations than when you were a child.
that many of the diseases vaccinated against are virtually nonexistent.
that you've noted a correlation between the age of vaccination and the onset of autism.
that there are legal provisions to deal with people harmed by vaccines, so some risk exists.
that there is no guarantee that there might not be some long-term effect yet to be discovered.
that there is a community of people supporting the decision not to vaccinate.
No more and no less.
If that's not right, let me know. Otherwise I'll just use those terms.
zebra @64: The difference between your vaccine analogy and DCIS in the early 1990s is that (now) there is a huge amount of data about the safety and efficacy of vaccines, but in the 1990's there was not a lot of data about the progression of DCIS.
So in your hypothetical, the data does exist, even if it might not be easily accessible to the lay public. In contrast, there was no data (or very limited data) for oncologists about DCIS. It wasn't that they ignored it, or the studies were bad or they didn't understand the studies. The information plainly did not exist.
This happens in science and medicine. Every time a new disease emerges, doctors must do their best to treat it, even before all the characteristics of the disease are known. A good recent example is SARS.
perodatrent,
I don't think so. Screening mammography has reduced mortality, by 30% in this study. Treating DCIS less aggressively is one part of fine-tuning the screening program as more data becomes available. Five-year breast cancer survival is now better than 90%. How does that mean we suck?
zebra,
These new findings about DCIS may lead to less aggressive treatment of DCIS i.e. to simple lumpectomy without adjuvant radiotherapy and/or chemotherapy though there is still no clear consensus as you can see from the OP. No one has been "cutting off" anything unnecessarily, and the "tragedy" you complained about earlier is simply that it seems some cancer patients (35 per 100,000 women) would have survived even without the treatment they were given.
Personally I would prefer to have my life saved by the removal of a small non-invasive tumor than risk a larger one later; I would happily trade the anxiety about knowing I have cancer for the risks of radiotherapy and chemotherapy. YMMV.
Completely different, to my mind.
Here's another study for you, 'Diagnosis and Management of Ductal Carcinoma in Situ (DCIS)' published in 2009:
That's 63 publications by 2009 that showed "no good evidence of overdiagnosis". Please show me the "bias, magical thinking, and stupidity" in these publications that resulted in this "tragedy", and explain what you would have done differently to avoid it.
@zebra --
If the terms are as I stated them @#91:
On one side of the equation, you've got a person who knows six things, none of which has any certain implications one way or the other and some of which aren't even suggestive of any. The hypothetical you either knows more than he's saying or he is reading an awful lot of menace into knowledge that -- as written -- is completely value neutral:
I mean, nothing can reasonably be inferred from the fact that there's a community of people supporting the decision not to vaccinate. Or the fact that there are more vaccinations than when you were child. Both are capable of numerous explanations in theory. But it wouldn't be reasonable to pick one at random.
It would be reasonable to infer from the fact that many of the diseases being vaccinated against are virtually non-existent that your grandchild's risk of catching one in the immediate present was low. But it would not be reasonable to assume that the future was predictable. Because it's not.
Furthermore, although that tells you a little about the diseases, it tells you nothing about the vaccines. And the decision you're trying to make is whether to vaccinate.
So basically your evidence for risk is:
* Some exists, due to there being legal provisions for those harmed by vaccines.
* Your having noted that there was a correlation between age at vaccination and the onset of autism (which, incidentally, I would be curious to know how you noted without picking up any other knowledge)
*There being no guarantee that there mightn't be some long-term effect yet to be discovered.
You also have some reason to think the immediate risk of infection is low. But it's not conclusive, and there are no implications for the future.
A reasonable person would not make a decision about his grandchild's health without looking into the matter further.
It's not reasonable to argue otherwise.
No, you're just bitching and moaning as usual, this time with obnoxiously stupid psychological frosting.
FTFY. Duh.
Furthermore, on the other side of the equation, you have people who looked at 12000 biopsies and found that DCIS patients who had been treated with biopsy only appeared to have a 28 percent chance of developing invasive breast cancer within 15 years, which would be metastatic for more than half.
That suggests aggressive treatment would be prudent, which makes sense. That's an unacceptably high-risk for a deadly disease that can't always be successfully treated.
They and others then went on to do further studies, with the aim of finding out whether things were as they appeared.
So I take back what I said about it being a false analogy. It's just not analogous at all. On one side, you've got an exhaustive effort to examine the best information available in order to make the most responsible risk-benefit calculation possible, plus ongoing inquiry.
And on the other, you've got someone with six assorted pieces of partial knowledge, three of which vaguely suggest that there's an unknown probability of risk of some sort associated with vaccinating a grandchild against diseases that he or she might catch, but probably not this minute.
He decides it would be sensible and prudent not to vaccinate on grounds known only to him. Because that's not a reason-based conclusion. And (I assume) that's final.
Apples and oranges.
No, no, no. Those are just your assumptions!
As written, this person is not even armed with any misinformation, let alone enough to base a decision on. He or she has noted a correlation between the onset of autism and the age of vaccination. And that's all he or she knows.
I really don't think zebra would have put it that way if he hadn't meant that, exactly, and that alone. He was very clear about the importance of taking the analogy as written.
I don't think it's even reasonable to infer that he/she noted that correlation via an anti-vax source. I mean, he/she would know more than six partial facts, if so.
And just to be thorough:
^^Assuming, for the sake of argument, that this person actually knows those six things, plus all the other stuff he/she would know if his/her knowledge came from reading anti-vax literature:
No. It's still a false analogy.
On one side, the treatment decision is based on statistical probability, as suggested by a thorough, rigorous examination of the best information available
On the other, it's based on some stuff somebody happened to read and accept as valid, without further inquiry.
That's not analogous.
Nor is it reasonable to conclude that you know all there is to know just because you know some things that seem reasonable enough.
That's very nearly the definition of irrational, in fact.
I hope I have now fully compensated for having inadvertently caused you to erroneously assume that I wanted you to read my mind.
ann,
I would say it goes farther than a decision based on some stuff somebody happened to read and accept as valid, without further inquiry. Unless she has lived in the backwoods of nowhere, this grandmother would have been exposed to physicians and vaccination promotions, and most likely has seen some of the diseases her grandchild would be vaccinated against.
I could assume she hates and distrusts physicians but then why would there be debate in her mind? For the legal risks perhaps? If she distrusts her physician then it would still be irrational not to research why the larger community wants her child vaccinated. Unless she distrusts them too. But then if she has these thoughts without doing any research, that is also irrational.
However, if I assume she trusts her physician then she has to actively reject what he is telling her about vaccinations. (Unless he's an anti-vaxxer. But in that case, then why would the internal debate arise in her mind. The community? Her experience?) Again, a call for more information.
Wait.
^^THAT's your point?
Sorry I went into so much unnecessary detail.
If all you mean is that both scenarios involve someone reaching a decision on the basis of information, conviction and belief, plus assorted circumstantial factors -- aka "reaching a decision" -- then yes. A decision is reached in both cases.
And all decisions reached by everybody everywhere at all times are always reached on the basis of some combination of one or more of those four things.
But that doesn't mean they're all equally reasonable, obviously.
Because obviously, to establish that, you have to look at the reasoning that went into selecting and evaluating the information, as well as the applicability/soundness of the convictions, beliefs, circumstances and factors.
Per those criteria, the anti-vax scenario is still not reasonable. But you're absolutely right about it being a decision. It sure is.
Last thoughts for tonight...
Zebra is using shared ways of thinking (as we are human and have certain things in common) to create an equivalency in decision making between laymen and professionals. Yet he knows that there can not be an equivalency between the two otherwise he wouldn't be trying so hard to get the scientific types here, and specifically Orac, to see and address the flaws in medicine.
Sure, he's playing with you, but for whatever reason there is also a need here for you to attack these flaws. And he goes about in probably the only way he knows how - by challenging your thinking and patience to the nth degree.
Flaws in medicine are a big issue but when I've given him other resources to pursue regarding this problem he keeps bringing it up here. If I were one of you, I would take that as a compliment. For as much as he belittles you, you're the ones he wants to pick the brains of; the ones he wants to work on fixing these things. Overall, it appears he thinks rather highly of some of you.
With the exception of him continually dismissing the work you do against the harm the antivaxxers and alternative med types lead to, I have no issues about either the problems in medicine or those without being discussed, so I'm not making a case for either direction on this blog. I'm just making an observation.
krebiozen #93
Thanks for the study. I was not so updated.
Years ago it was noted that breast cancer screening could reduce cancer-specific mortality, but had no effect on total mortality.
Proponents of screening rebutted the observation, explaining that it seemed very peculiar that mortality for trauma or disease other that breast cancer should be counted.
After all, if screening reduced mortality from breast cancer, which is a common enough disease, how could a few cases of trauma or heart disease arrive to account for disappearance of the life-saving effects?
The study you linked is another confirmation of this attitude. We are given no information about total mortality. Cancer specific mortality is reduced of about 0,14 women every 1.000. To me, it appears clear that such a modest gain is easily overdone by a few casual (?) deaths for other causes.
Those questions were not evident when war on cancer by screening was declared. Now we have to bring with their consequences. We suck.
Perodatrent #89,
"more useful beliefs"
I would be more general and say that the question has to do with better decision-making, which comprises as I described above all the factors that lead to the decision.
And to go back to the very basic point, I suggest that poor decision-making is the result of many factors which are similar and even identical between the groups, not the differences.
For one example, let us consider the Minions here (and I credit Orac for being more honestly "scientific" than his followers, even though he shows bias as well).
I've quoted and re-quoted for Krebiozen the comment from Dr Liz describing the way that an advocacy community can influence the decisions of women as to their treatment. But, just like those who don't listen to what studies say about vaccination, he appears to put his fingers in his ears and say la-la-la-I-can't-hear-you. Why? Well, because the "conventional wisdom" of this group is something like... autism moms are just a group of silly women mutually reinforcing their mistaken beliefs, but anyone who decides on aggressive treatment for DCIS is an expert in statistics and biology and is making a purely objective and "scientific" decision.
This dynamic is universal-- you can't make good decisions with a closed mind, reinforced by an Authoritarian group dynamic. Everyone is susceptible, and those who do the best science (and education) have to work at developing consistent openness.
With respect to your number 103:
Exactly, we USA types must have a War on everything. And "war" always distorts the decision process. We fail to ask "what is the proper goal?" Is it to achieve the greatest good for the greatest number (by reducing overall mortality), or is it to showcase our abilities, use our new tech, and so declare Mission Accomplished?
perodatrent,
You might want to search the archives of this blog for 'mammography'. Orac has discussed these issues here many times.
Since breast cancer mortality is about 21 per 100,000 and the age-adjusted mortality rate for women is 623 per 100,000 (770 in women aged 60-64), it seems to me that including all-cause mortality just introduces noise, unless you are suggesting that mammography somehow causes significant numbers of deaths, which I don't believe is the case.
This study from last year found that missing mammography screening had a significant association with all-cause mortality, but I do wonder if women who miss mammography screenings are more likely to have a higher risk lifestyle and if this was adequately controlled for.
That would depend on the size of the study. Could there be some other confounding factor that makes healthier women less likely to attend mammography screening? For example, might a woman with other health problems be more likely to get regular screens? This kind of confounder can be difficult to correct for.
I don't understand you. Are you suggesting that mammography increases death by causes other than breast cancer?
I still disagree. Progress against cancer has been slower than we hoped it would be a few decades ago because it turns out to be hugely more complex than we suspected. Breast cancer alone is mind-bogglingly complicated. Given this, I don't think increasing 5 year survival to over 90% means we suck at all.
Blah blah repetition of point yadda yadda.
But you refuse to read the responses as written. Given the numerous glaring differences in the two scenarios, it makes perfect sense to treat each on its merits and demerits separately. It may be annoying to you and socially humiliating, but it is not irrational.
zebra,
I have read and reread it and still don't see any real relevance to treatment protocols determined by radiologists and surgeons for IBC, much less DCIS. The breast cancer survivor community does not determine breast cancer treatment protocols.
I can hear you but I don't understand your point.
That isn't generally accepted here, though a minority might hold that view (I'm thinking of the likes of PGP). I'm quite sure that the vast majority of "autism moms" are sensible people doing the best for their children. I assume you mean those in the anti-vaccine movement, who I think are ignorant and naive people who have been taken advantage of by those who should know better and/or have their own agendas.
Those who decided on those treatment protocols were experts in statistics and biology doing their best to make a purely objective and scientific decision based on the available evidence.
The skeptic movement in general and SBM in particular is largely based on becoming aware of our own cognitive biases and doing our best to overcome them. That is the entire point of RCTs and using statistics instead of relying on anecdotal evidence, intuition and 'mommy wisdom'. That's not to say we always succeed, clearly we do not, but at least we are aware of our cognitive biases and try to overcome them, unlike some who embrace them as a feature rather than a bug. I'm not sure what "openness" has to do with it.
Politicians declared the 'War on Cancer' IIRC (Nixon?). I'm not sure to what degree bellicose metaphors affect the work of research scientists or breast cancer surgeons. Point taken though.
I think you will find that goals in medicine are pretty well-defined - look up endpoints on clinical trials. Reducing overall mortality isn't the only objective, reducing morbidity and improving quality of life are too, as is (or should be) cost effectiveness.
I do agree that new technology tends to get overused at first, and as we learn more we fine-tune it to work best. This is what I see happening with mammography screening, not some terrible tragedy due to magical thinking. As I wrote above, medical history is full of examples of "bias, magical thinking, and stupidity", but I really don't think this is one of them.
krebiozen, #107
Data about mortality in breast screened women are known facts. The question about why total mortality is unchanged remains to be settled. Everyone can have a pet hypothesis, but I think we haven't a real answer. My hypothesis is that the difference in mortality between screened and not screened women is so small, that something very mundane can explain it (death coding errors? chance? stress induced by radiological disease?)
As about your last point, I think there is a sufficient answer: lead time bias. Which is also the answer to the claims of AltMed practitioners, who report individual cases of women surviving years after diagnosis induced by screening. Do we want use an AltMed claim?
I’m not sure to what degree bellicose metaphors affect the work of research scientists or breast cancer surgeons.
And, I'm not sure to what degree it doesn't.
However, this shouldn't be a point to denigrate science with. It should be a point to denigrate politics with and remove it as much as possible from the scientific process.
I see that Krebiozen has reached the out-of-context-quoting/non-sequitur phase so I will let my previous comment stand.
zebra,
How is that different from what ann did in #66, which you interpreted and gloated as an admission of defeat?
perodatrent,
Screening mammography does prevent IBC in older women, I see little controversy about that, and I think IBC is worth preventing even if it doesn't affect mortality.
Perhaps that means it's a little premature to be claiming that "we suck" at dealing with breast cancer.
The studies that have been done should have the statistical power to eliminate this. Maybe it is the successful treatment of invasive cancer that has had this effect. Those who previously would have died when their cancer wasn't detected by mammography are now successfully treated when it becomes symptomatic.
Lead time bias could explain the increase in 5-year survival, but not the 30% fall in breast cancer mortality since 1990. Of course that fall might have happened without mammography screening, but I doubt it. I may have missed some similar success story from altmed, but I don't think so.
@#110 --
I second gaist. I don't even know what post you're talking about.
It's childish of you to want us to read your mind.
krebiozen, #112
surely, breast cancer treatment has had some interesting advancements since 1990.
As an example of AltMed practitioners using survival curves which "show" their dream results in treating breast cancer, have a look here:
http://www.metododibella.org/pubblicazioni-scientifiche.html
The argument we use agains their claims must be used whenever such claims are made. Or, as EC Segar's Popeye would have put it, "If the ostrich is his when sun shines, it must be his even when it rains". (May be the precise wording wasn't so, but the meaning is).
perodatrent,
"The argument we use against their claims must be used whenever such claims are made."
My point exactly.
So doubly then, zebra, what's up with your #110 "admission of defeat (your words, no mine)?"
Extended Comment
The low but consistent incidence rate of invasive breast cancer deriving from ductal in situ carcinoma (DCIS) justifies that the usual surgical and adjuvant therapy of high grade DCIS is not always capable of ensuring a tumor-free life, while low grade DCIS is perhaps superfluously over treated.
Appropriate estrogen receptor (ER)-signaling is the chief safeguard of genomic stability in strong interplay with DNA-controlling and repairing systems, such as BRCA-genes and their protein products [http://goo.gl/EsB1bK]. Detection of DCIS by mammographic screening may be regarded as an early marker of disturbed hormonal, metabolic and DNA-stabilizer equilibrium, since the female breast is exquisitely sensitive to the defects of estrogen signaling [http://goo.gl/xRh4wL]. The stronger the defect of cellular estrogen surveillance, the higher is the probability of DCIS development with high-risk characteristics.
The relatively high percentage of poorly differentiated DCIS among hormonally active young cases may be attributed to the low incidence rate of more successfully repressed ER-positive cancers rather than an excessive inclination to ER-negative tumors. Moreover, among dark-skinned American women, the higher risk of developing poorly differentiated DCIS and the higher breast cancer mortality rate as compared with white women is associated with estrogen deficiency and further hormonal defects. These endocrine disturbances may be explained by the incongruence between their excessive pigmentation and the poor light and sunshine exposure of North-America [http://dx.doi.org/10.2174/157489212801820048].
In women, during aging, progressive weakening of estrogen signaling and the associated gene stabilizer mechanisms are dangerous systemic processes [http://goo.gl/yiYszF], despite any usual, aggressive treatment of DCIS. In patients having increased risk of invasive breast cancer, natural estrogen substitution is the optimal risk-reducing therapy aiming the stabilization of gene regulatory processes and the apoptotic death of accidentally initiated tumor cells [http://dx.doi.org/10.2147/dddt.s89536]. By contrast, antiestrogen treatment against tumor recurrence may be risky, being effective only in such genetically proficient women who are capable of strong, counteractive upregulation of estrogen signaling. Tumor growth may be provoked by de novo or acquired antiestrogen resistance being associated with the missing capacity of patients for the extreme upregulation of estrogen signaling or with the exhaustion of defensive counteractions by excessive antiestrogen administration [http://dx.doi.org/10.2147/dddt.s89536].
In conclusion, in cases of DCIS which have been diagnosed, the most important preventive strategy against invasive breast cancer development is to combine lumpectomy with strict control and maintenance of estrogen signaling over a whole lifetime.
Zsuzsanna Suba