Should DCIS be called cancer? It’s the million-dollar question. The answer, in short, depends on who you ask, and how they define “cancer.” The official diagnosis name is Ductal Carcinoma in Situ, and DCIS is generally referred to as “stage 0 breast cancer.” But a growing number of physicians refer to DCIS as a “pre-cancer” or a “risk factor” for cancer, and there has been discussion over the last few decades about removing the words “carcinoma” and “cancer” from the nomenclature altogether.
What’s in a Name?
The language physicians use when communicating with patients matters, and the words “carcinoma” and “cancer” are loaded. The central message from decades of cancer research is that if cancer cells are not caught early and destroyed, they will inevitably grow and spread and kill. It is not surprising then that hearing the words “carcinoma” and “cancer” in a DCIS diagnosis evokes fear and anxiety, which can lead to impaired risk perception and knee-jerk decision-making around treatment.
Researchers now know that not all cancers behave the same, and it is no longer a foregone conclusion that all abnormal cells will inevitably grow and spread. This is the case with DCIS, where the abnormal cells can grow at different rates, they can stop growing and stay in place, or sometimes even disappear altogether.
Technically Speaking – Are the DCIS Abnormal Cells “Cancerous?”
The cells found in DCIS are called “neoplastic epithelial cells,” a term that simply refers to abnormal cell growth, and not malignant cancerous cells, per se. By definition, DCIS cells are “in place” and, unlike malignant cells, cannot invade or spread to other tissues in the body. DCIS cells have the potential to turn into malignant cells, which is why it is treated, even though the science is unsettled on the exact circumstances and mechanisms by which this change occurs.
Getting to the root of this question – what causes DCIS cells to turn malignant – is what scientists are researching now. Until we have more answers, DCIS remains in a place of ambiguity, somewhere between a benign condition and invasive disease.
Arguments For and Against a Name Change
Proponents of a name change argue that removing the words “carcinoma” and “cancer” would greatly reduce the fear and distress that often accompany a DCIS diagnosis, which could lead to more accurate self-assessment of risk, thoughtful decision-making, and heightened satisfaction around treatment outcomes. It has been suggested that DCIS could be replaced with “Ductal Intraepithelial Neoplasia” or “DIN”.
Opponents of a name change point out that because DCIS is highly variable from patient to patient, and because there is no reliable risk stratification system for which DCIS cases will lead to invasive disease, there is limited potential for a name change to reduce anxiety and improve risk perception. Moreover, because the current treatment options for DCIS are on par with the treatments for low grade invasive breast cancer, changing the name might lead to more confusion and anxiety rather than less. In other words, while some patients may be comforted hearing that their diagnosis is considered a “pre-cancer” or a “risk factor” for cancer, others may not be able to reconcile such seemingly tempered descriptions with the radical treatment options being recommended to them, which could lead to more confusion and distress.
Focusing on Communication and Individualized Care
At this time, an official DCIS name change is not actively in the works. Regardless of what it’s called, DCIS necessitates a patient-centered approach to treatment, with improved physician-patient communication and shared decision-making at its core. All risk factors should be evaluated and discussed, including a patient’s personal preferences. With improved understanding of their diagnosis and treatment options – including the uncertainties that continue to exist around DCIS – women will be better able to make decisions from a place of knowledge instead of fear.
Last Updated January 23, 2025
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Sources:
Rosenberg, Shoshana M, et al., “Is it cancer or not?” A qualitative exploration of survivor concerns surrounding the diagnosis and treatment of ductal carcinoma in situ (DCIS). Cancer. Published online February 22, 2022. [PubMed: 35191017]
Gagliardi, Anna R., et al., National consensus recommendations on patient-centered care for ductal carcinoma in situ. Breast Cancer Research and Treatment. Published online January 9, 2019. [PubMed: 30627960]
Cavallo, Jo, When Is Active Surveillance Appropriate in the Treatment of DCIS? The ASCO Post. March 25, 2018
Espina, Virginia, et al., What is the malignant nature of human ductal carcinoma in situ? Nat Rev Cancer. Published online August 29, 2013. [PubMed: 21150936]
Partridge, Ann H., et al., Challenges in DCIS risk communication and decision-making: report from an American Cancer Society and National Cancer Institute. Published online July 28, 2014. [PubMed: 22488610]