The Controversies of How to Manage a Diagnosis of DCIS for Breast Cancer Patients

July 2017 Vol 8, No 7
Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
Co-Founder, AONN+; Editor, JONS; University Distinguished Service Professor of Breast Cancer, Professor of Surgery, Johns Hopkins University School of Medicine; Co-Developer, Work Stride-Managing Cancer at Work, Johns Hopkins Healthcare Solutions

Approximately 55,000 cases of ductal carcinoma in situ (DCIS) are diagnosed each year in the United States. DCIS is known to be the earliest form of breast cancer that can be diagnosed through screening mammograms, and how to “treat it” has come under scrutiny in the past year or so. As medical professionals reembrace the Hippocratic dictum—do no harm—it raises the issue of how often we may be overtreating in situ disease.

By definition, DCIS means it is noninvasive breast cancer. An additional element of confusion is that lobular carcinoma in situ carries the same “in situ” and “carcinoma” terminology but is not considered to be breast cancer at all. Add to this problem the fact that only a few cancer centers and breast centers have dedicated breast pathologists, and things get more complex. There can be a fine line between high-grade atypical ductal hyperplasia, atypical duct hyperplasia, and low-grade DCIS.

So first comes the issue of whether mammography is truly of the greatest value by finding breast cancer at this early stage or if it is a problem for the patient and those taking care of her? Physicians know how to manage and treat invasive breast cancer. But what is the right thing to do with DCIS?

Part of the answer lies in the type of DCIS, how aggressive and proactive a patient wishes to be, how fearful a patient is of the mere words “breast cancer,” whether she has a significant family history, and how large an area of breast tissue the DCIS occupies. Sometimes there is extensive DCIS, encompassing a large area of breast tissue, making it difficult to cosmetically do a lumpectomy and still have the breast look acceptable postoperatively. Add radiation to that as part of adjuvant therapy and the breast may shrink even more, making it asymmetric to the ipsilateral breast as well as cosmetically unsatisfactory to the patient. Patients feel very confused because although they are told it is good news they “only have stage 0 breast cancer,” they still lose their breast as a result, whereas someone with an invasive breast cancer may skate through surgically with “just a lumpectomy.” The bigger the area of DCIS, however, the more likely that buried within it may be invasive breast cancer, changing everything from a treatment perspective.

There are patients who have actually opted out of doing any treatment and are in a monitoring program, waiting to see if it grows or if it can be determined with serial biopsies to remain being “just DCIS.” If invasive cells are found at some point, then the patients opt back in for treatment. These women are usually pretty cool customers who are not worrywarts and don’t want to be dealing with what they believe is overtreatment of something that will never threaten their lives. The problem is that it remains scientifically difficult to determine whose DCIS will never cross the line and become invasive versus whose DCIS will, and if so, when.

There are research studies underway now looking into this complex issue from a pathology perspective by longitudinally studying the behavior of DCIS, as well as the behavior and decisions made by patients who are diagnosed with it. It will take time and a great deal of effort, especially from a pathology perspective, to crack this egg (or DCIS cells) and finally determine which patients with DCIS need to have it treated, which do not, and what these new potential treatments will be in the future.

Given the large number of women diagnosed each year with DCIS, this research is very important. Research into the complex issue of treatment of DCIS will impact the world of breast imaging. Without mammography, the possibility of even knowing someone has DCIS would be slim. Rarely is there a breast symptom to cause a patient to seek medical evaluation for DCIS.

And what do we tell the hundreds of thousands of women who had DCIS diagnosed in the past and underwent surgery, radiation, hormonal therapy, and a ton of x-rays for continued monitoring? A portion of them will want to know if the biomarkers of their DCIS fell into the “treat” versus “don’t treat” group.

What we do know as clinicians is that we make decisions based on the information we have at the time. As a navigator, you need to be prepared to discuss the history of breast cancer treatment, especially surgery, in which all patients underwent total radical mastectomies originally and did so for more than a century before lumpectomy came on the scene as a valid option. Provide patients with information about what DCIS is, what the current options for treatment are, and, perhaps most importantly, see if your patient is a candidate for enrolling in a clinical trial being conducted to study this form of early-stage breast cancer. Those who are fearful will want current standardized treatment; those who are reading up on the complexities associated with DCIS may want to enroll in a monitoring program. Family members of patients may be the most concerned, however, worrying that their loved one is going to die if not “treated” for their breast cancer, no matter what its stage.

Keep yourself up to date on the latest research in this specific field. Watch on for research publications that show study results as they are completed. Also watch for cutting-edge information within this publication, along with presentations and webinars from the Academy of Oncology Nurse & Patient Navigators. We are clearly at a turning point when it comes to how to reassess the appropriate management of patients with stage 0 breast cancer. The Hippocratic dictum is alive and well once again.

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Last modified: August 10, 2023

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