Over-diagnosis…or Mis-diagnosis of Breast Cancer?

Hello bOObs Bloggettes:

Today we’ll look at the difference between a breast cancer patient being “over”diagnosed vs. “mis”diagnosed. Are they the same thing? No, but there are some overlap considerations. Let’s look closer.

We’ve discussed the much over-diagnoses of breast cancer, particularly the Stage 0 precancerous condition of ductal carcinoma in situ (DCIS; see previous blogs). To review briefly, the word “carcinoma” in a precancerous condition is frightening women into getting prophylactic mastectomies when there is much debate in the medical literature over how many of these precancers ever really become invasive cancers later — hence DCIS is being over-diagnosed.  But this is not to say that this is being done intentionally on the part of the doctor; rather, it’s today’s Standard of Care for DCIS that’s put them in this predicament (although I have heard some patients say that their doctor strongly urged/recommended that they get a mastectomy, a decision that the patients later regretted.)

The precancerous DCIS “cancer” represents about 25% of all breast cancers diagnosed and, hence, is critical for women to understand.  Also, understand that overdiagnosis leads to overtreatment of these precancers. In other words, many women are sadly getting treated for breast cancers they don’t have (it’s Stage 0, after all) and/or that may never spread.

To that point, here’s a citation quote from the prestigious N.E. Journal of Medicine: “…we estimated that breast cancer was overdiagnosed (i.e., tumors were detected on screening that would never have led to clinical symptoms) in 1.3 million U.S. women in the past 30 years.” 

I totally understand that it’s a woman’s prerogative that she receives a prophylactic mastectomy if that’s her chosen journey. But look at the following statistics. Here’s a citation written by one of the world’s most esteemed research centers (the Nordic Cochrane Centre), which I’ve summarized: For 1 woman saved from a breast cancer death, 10 women are treated needlessly. While I’m of course ecstatic for the woman whose life was saved, it’s those 10 other harmed women I’m concerned about.

Is there instead a middle road that we can find, such as “watch and wait”? Or can we reverse this situation totally? (see blog on thermography called “Wait, Watch and Reverse”)

Personally, I had no idea what the heck DCIS and overdiagnosis were until a girlfriend disclosed that she’d had two mastectomies because of her two Stage 0 diagnoses (she tells her story in my film “bOObs”); I was totally shocked and saddened, and vowed to make women aware of this situation — through education comes empowerment!

So that’s a summary of “over”diagnosis. Now what about “mis”diagnosis?

Comparing the two definitions, overdiagnosis is basically done purposefully (but not with intentional malice). In the words of the National Cancer Institute: “Because doctors cannot easily distinguish cancers and cases of DCIS that need to be treated from those that do not, they are all treated.”  In other words, they know darn well that they’re treating women (the literature points to many women) for a precancerous condition that may never become invasive — but that’s medicine’s Standard of Care today.

On the other hand, misdiagnosis is a situation where medicine’s Standard of Care — and sometimes questionable decisions made by doctors — mistakenly ends in a patient without cancer receiving a cancer diagnosis, and is many times put through needless tortuous treatment protocols. This diagnosis is not carried out with purpose, but rather is largely due to error(s).

It’s sort of like the difference between “dis”information and “mis”information: The former is done purposefully (but this time with malice), the latter is not. The medical system is supposed to be set up with certain failsafe safety measures so a misdiagnosis doesn’t happen — but happen it does. And with a fair amount of frequency, it appears.

Here’s a quote from a study appearing in JAMA : “As many as one of every four breast tissue biopsies tested for cancer may have been incorrectly diagnosed by pathologists taking part in a study to test their skills.” Granted, this was a small sample size but that’s still an astounding figure.

As examples for the failsafes put in place for breast cancer, women are put through screening test(s) of mammogram and/or ultrasound, sometimes followed up by a diagnostic test using one or both of the same tools, then undergo biopsies and ensuing specimen pathology reviews. However, as we’ve discussed prior (see biopsy blog), pathology is a subjective “science” and, hence, sometimes biopsy specimens are wrongly interpreted by the pathologist. This is why women should take their pathology slides to another pathologist and get a second — or even third — opinion before opting for treatment.

When I asked the American Cancer Society (ACS) if patients were being overdiagnosed hence overtreated, the response bounced over to screening: “In certain diseases where we do screening, we are doing over-diagnosis.” ACS did not, however, mention “over”diagnosis stemming from a “mis”diagnosis. But if you think about it, a misdiagnosis is really a type of overdiagnosis as well (however, not vice versa). So to make my point, I relayed a story in which my friend had been tentatively diagnosed with Stage 4 cancer; his CT scan had “lit up like a Christmas tree,” he’d told me, as it appeared to have gotten into his bone marrow and various organs.

In a panic, we flew down to a top notch TX hospital where his physician uncle worked; the hospital redid all the tests and their diagnosis was this: He had mononucleosis. The ACS doctor divulged that this happens fairly frequently. But would the first doctors have figured this out before putting a bunch of toxic chemos into my friend? And this isn’t the only horror story I’ve heard about with regards to treating misdiagnosed cancers. Some women even have their breasts taken off before the second pathologist in the surgical room declares that she didn’t have cancer after all. In fact, the ACS also stressed to get a second opinion when diagnosed with cancer, but unfortunately I doubt many patients know to do this (my husband and I did not).

So considering all the above information and in looking at my previous blog on Liquid Biopsies, why doesn’t medicine’s Standard of Care protocol include using these new liquid biopsies on all cancer patients to make darn sure of the diagnosis prior to treatment?  It’s at least one more safety measure they could put in place to make sure patients aren’t getting treated needlessly — and it seems like a very important one at that. But alas, the FDA only allows these specialized biopsies to be carried out on advanced cancer patients.

Blog at you soon, thanks for reading and helping to spread the word!  (Please see the “share” links below.)  And we’d love to hear comments from you! (see below as well)

Stay healthy,

Megan

Megan Smith, M.S.
Director, bOObs: The War on Women’s Breasts

waymarkproductions.com