Like nearly all of us with a breast cancer history, I’ve read (quite a lot, maybe too much) about the now-infamous latest study on mammography and mortality, published July 6, 2015 in JAMA. If you want to slog through the original, it’s at this link: Breast Cancer Screening, Incidence, and Mortality Across US Counties.
Like many of you, I imagine, it makes my brain hurt. In particular, the study appears to have the most disturbing implications for those of us at either end of the breast cancer spectrum, namely, those of us initially diagnosed with DCIS, and those of us initially diagnosed with advanced and metastatic breast cancer. For women like myself, who were diagnosed with and treated for DCIS, we have to wonder if the whole blasted sleighride was pointless and unnecessary. For those whose initial diagnosis was late stage breast cancer and even metastatic breast cancer, we must all feel shock, dismay and extreme frustration that these cancers were not detected earlier. How is that even possible? What the everloving heck??
Earlier this week, I was contacted by a journalist to ask me if I’d be willing to be interviewed about it. She had already reported on the study when it was published, and was looking to talk to a few folks who’ve been diagnosed with breast cancer to discuss our reactions. At first, I wasn’t sure I was up to it. But I decided to agree, after checking out the journalist herself and the magazine for which she writes. That interview was scheduled for today, but it’s been postponed while she and her editor do some further thinking about the direction of the piece. The good thing about agreeing to be interviewed was that it forced me to pull some of my thoughts together. And I decided to share them here. I am frankly not equal to reinterpreting the study directly. But now that I have read the thing, as well as reports on it, a number of issues — old issues, in fact — have been brought to my mind that have been reinforced by my reading, issues I hope do not get lost in the fray.
Non-Invasive Breast Cancer: Overscreened and Overtreated?
Frankly, I’m a little tired of all the flap in recent years about DCIS. When I was diagnosed with DCIS in 2008, I did get pathology reports that interpreted the nuclear grade of my lesions. But the implications of these grades was still fuzzy at the time, and my reports did not all say the same thing. The only thing they stated unambiguously was that none of my lesions were low grade, and that they were somewhat widely scattered. This NEJM study report, published about six months after I was diagnosed, stated that both high nuclear grade lesions and widely scattered lesions were found to be more likely to recur invasively. It also reported that 13% to 24% of women who got stereotactic biopsies of DCIS lesions were found to have invasive cancer in those biopsies. Another study, published after I had surgery and was just finishing radiation, identified new genes in DCIS lesions that were potentially involved in the malignant transformation of DCIS. So, that’s the state of play I and my doctors were dealing with back then.
In the years since, pinpointing which DCIS lesions may turn invasive — and which probably won’t — has been the subject of much research that has yet to achieve certainty. So far, researchers have only been able to determine that some DCIS can and does become invasive if left untreated, and that even if treated, can and does recur in invasive form. But widespread agreement on how to predict its behavior has yet to arrive. A lot has been written about the overtreatment of many, if not most, DCIS lesions, and the trauma attendant to this overtreatment, up to and including women who opt for having bilateral mastectomies. While I would be the first to admit that I would gladly have avoided my entire treatment extravaganza and its aftermath, until we know for certain how to assess DCIS thoroughly and accurately, much of the flap about it, including whether to call it cancer or not, strikes me as premature, if not downright unhelpful. To quote Dr. David Gorski, a surgical oncologist better known to fans of his blog as Orac:
We can overcome the problems of overdiagnosis and overtreatment due to cancer screening. Developing better screening tests will not be sufficient to achieve this end, however. What will be required is the development of predictive tests that tell us which lesions found on mammography or future screening tests are likely to progress within the patient’s lifetime to cause death or serious harm and which are unlikely to do so. Such information would allow us to stratify cancers into those that need to be treated promptly and those that can safely undergo “watchful waiting.” This will not be an easy task. In the meantime, we do the best we can with the data that we have—and its uncertainty.
Couldn’t have said it better myself. In the meantime, could everyone please drop the hype and hyperbole about DCIS? I don’t know about anyone else, but it has not made me feel any better. The long-term damage that I live with since being treated for DCIS was not caused by the fact that the stinking calcifications, whatever their potential for invasive recurrence, are gone and have thankfully stayed gone for seven years. It was caused by the collateral damage and long-term side effects of the treatment that made them gone, and it’s the sort of damage that every cancer patient endures, not just those of us with DCIS. In the meantime, I can happily live without being subjected to further shrill, ill-considered discussion of DCIS. To quote Shakespeare, “it is a tale/Told by an idiot, full of sound and fury,/Signifying nothing.”
And What About That Collateral Damage?
This has been the subject of many, if not most, of my blog posts. We all know what it is. Virtually all of us have some. There is more research these days, but probably not enough research, in my humble opinion, about how to mitigate it after the fact, make it disappear entirely, understand it in the first place, or even how to get oncologists and other physicians to acknowledge that it bloody exists at all. Thank goodness, there is also more research being conducted these days about how to avoid it. Which leads me to my next topic.
Could We Have Better Treatment, Please?
Another blog post. Or six. Better treatment means more targeted therapies; less collateral damage; smarter drugs with fewer side effects; better surgical techniques; better access to clinical trials; better sharing of data; more accurate statistics for all types of breast cancer; better tumor tissue registries; better health insurance and healthcare access; better treatment protocols; improved standards of cancer care; treatment and drugs that do not bankrupt the people they are supposed to be helping; etc., etc., ad infinitum.
Not unexpectedly, many of the objections to and criticisms of this mammography study, as well as others that have questioned its efficacy, have come from radiologists themselves. However, as many of them would admit, not all radiologists are created equal, nor are they all as well-trained and experienced as they ought to be. It is documented elsewhere (another blog post in the making) that American radiologists do not employ the same criteria for mammographic interpretation as, for instance, their colleagues in Europe. That includes the interpretation and follow-up of findings for dense breast tissue. I have also read articles stating that European radiologists report fewer false positives than their American counterparts, suggesting that they read breast images more accurately in the first place. My own current breast surgeon shakes his head in disgust at the local disparity of competence among clinicians, not only in the interpretation of mammograms, but of MRIs and breast ultrasounds. Come on, people. Don’t we have enough certifying organizations in the U.S. that define competency and provide continuing education to get you all up to speed? Oy.
Better Imaging Tools
Let’s face it: mammograms are so last century. And while there may be criteria for suggesting when to follow up a mammogram with something else — like diagnostic or 3D mammography, MRI or ultrasound — that doesn’t mean that these criteria are consistently followed, or that the imaging is conducted competently, or that these options are even readily available to all. There still continues to be disagreement about the efficacy and accuracy of these tools, along with breast thermography and nuclear imaging. Seriously? This is 2015, and we still don’t have better imaging tools? What’s up with that?
Other Screening & Diagnostic Tools
Lots of research is being done to develop predictive and diagnostic blood tests. Very interesting, very promising. Fingers crossed. Here are some links:
The Really Bad News
For me, the most alarming, unbelievable, disheartening and intolerable implications of the mammography and mortality study are these two: (1) that, apparently, more mammograms did not result in fewer deaths from breast cancer, perhaps because (2) more mammograms did not lead to finding fewer incidences of advanced and metastatic breast cancer, which one might expect if all this stepped-up screening was working as promised.
The first of these conclusions is a thorny subject, rife with a variety of interpretations and disagreements, and must be understood within the context of the study limits and parameters. The study’s researchers have themselves taken some pains to make these clear. So has Dr. Gorski, aka Orac. In the first place, the study subjects were diagnosed in the year 2000, and a lot has changed since then. Also, other similar longitudinal studies of mammography and the reviewers who have interpreted them have come to very different conclusions. However, the tendency of these types of studies in recent years has been to support the conclusion that mammography has not decreased breast cancer deaths, or not enough deaths to justify using it as widely as we have been used to for many years now. The controversial 2009 recommendations published by the U.S. Preventative Services Task Force are themselves undergoing revision, but appear at this point to mirror the mortality study — namely, mammography is still useful, but not as useful as we thought. And it’s really not so useful to women under age 50, usually not even mentioned to women under age 40 unless they have a family history, and that individuals must discuss the whole thing with their doctors, who themselves may not know what to conclude. But, it’s what we’ve got, and we can’t go tossing it out until we have something to replace it. Great.
Where does this leave all of us? Where does it leave women without a family history, who develop metastatic breast cancer in their thirties? Where does it leave minority women, who tend to develop more aggressive forms of breast cancer at a younger age? Up the blasted creek?
It seems to me that we are left almost exactly where I concluded we were left a few years ago: stuck with diagnostic tools that are flawed and inadequate; making the best of treatment that is imperfect, damaging, and too costly in every sense of the word; and very much in need of a far deeper understanding of a complex, still-deadly disease.