Problems With DCIS Misdiagnosis: When Cancer Is Not Cancer

Roxanne Nelson

July 29, 2010

July 29, 2010 — Recent media reports of potential misdiagnosis and overtreatment of early-stage breast cancer may be frightening women away from recommended screening for breast cancer, according to a joint news release from Susan G. Komen for the Cure and the College of American Pathologists.

Rather than forgo screening because of fears of being misdiagnosed and receiving unnecessary therapy, women should know what questions to ask and be confident about weighing their options, the release emphasizes.

The joint statement was released primarily in response to a recent article in the New York Times, which described the disturbing case history of a women misdiagnosed with ductal carcinoma in situ (DCIS). The patient had a "golf-ball sized" section of her breast removed, underwent radiation and chemotherapy, and then was told a year later that she never had cancer.

According to the article, the patient stated that the fear was the worst of all. "Psychologically, it's horrible.... I never should have had to go through what I did," she said.

The New York Times article highlights an issue that is a subject of much discussion among oncologists. Advances in mammography and other imaging technology during the last 3 decades have allowed visualization of extremely small lesions, according to the article. It may be particularly challenging for pathologists to distinguish the difference between some benign lesions and early-stage breast cancer.

Flip of a Coin

The diagnosis of DCIS "is a 30-year history of confusion, differences of opinion and under- and overtreatment," said Shahla Masood, MD, the head of pathology at the University of Florida College of Medicine in Jacksonville, in the New York Times article. "There are studies that show that diagnosing these borderline breast lesions occasionally comes down to the flip of a coin."

In response to concerns about the accuracy of breast pathology, the College of American Pathologists has announced that it will begin a voluntary certification program for pathologists who read breast samples. Among the requirements is that pathologists must read 250 breast cases a year. In addition, in a response to concerns that approximately 17% of DCIS cases identified by needle biopsy may be misdiagnosed, a new study supported by the federal government will be conducted to examine the variations in breast pathology.

However, as noted in the New York Times article, there are currently no mandated diagnostic standards or requirements for pathologists who evaluate breast tissue samples. This means that diagnostic accuracy can vary among facilities, depending on the individual expertise of the pathologists.

Is DCIS Really a Cancer?

As previously reported by Medscape Medical News, some experts believe that the term "carcinoma" in the phrase "ductal carcinoma in situ" is misleading and troubling and ought to be dropped, or at least that its elimination should be considered. In fact, in some cases experts suggest that DCIS is a possible candidate for management by active surveillance — a treatment strategy of growing importance in prostate cancer in which low-risk patients are monitored but do not receive active treatment unless they progress to a higher risk.

However, others disagree. "Although active surveillance is a step that can mitigate the harms of treatment, we doubt that it will mitigate the effects of uncertainty and anxiety," H. Gilbert Welch, MD, Steven Woloshin, MD, and Lisa M. Schwartz, MD, from the Department of Veterans Affairs and Dartmouth Medical School, New Hampshire, comment in an editorial (J Natl Cancer Inst. 2008;100:228-229).

"To do this, we must go back a step and question the value of making the diagnosis in the first place," they write.

The editorialists note that there "is a sea of uncertainty surrounding DCIS. Some lesions will progress to cancer, others will not. Some women with DCIS will develop cancer elsewhere in their breasts, whereas others will not. And we're not sure what the chances are."

In her Medscape videoblog, Kathy Miller, MD, notes that there has been a "long understanding that we overtreat patients DCIS," and that it is a "disease that we rarely had to deal with in the days before mammograms."

"But with mammograms, about a third of patients diagnosed with breast cancer are diagnosed with DCIS and they are virtually all treated," said Dr. Miller, an associate professor of medicine at Indiana University School of Medicine, Indianapolis. "It's almost as frightening, if not as frightening, as for those patients diagnosed with invasive disease."

Dr. Miller noted that with advancing technology, there will come a time when patients with DCIS can be better defined as to whether or not their disease is likely to progress. Those patients will likely need treatment, whereas others can simply be monitored.

"But we can't do that now," she pointed out. "If you have carcinoma in the name, that makes doing nothing scary for patients, scary for doctors, and untenable for everyone."

Although simply changing the name will not remove the fear, changing the name could start to change the mindset, she added. "[It] could make it easier, could make it possible to study which patients need treatment and which patients don't. And [it] could go a long way to moving how we think about the disease in a way that could be very helpful."


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