Addressing the Need for More Nuance in DCIS Communication

Is DCIS Really Cancer?

An Open Letter to Organizations, Health Professionals, and Patient Advocates That Educate Women About DCIS

By Donna Pinto, Founder, DCIS 411

Why This Matters

DCIS (ductal carcinoma in situ) is currently classified as “Stage 0 breast cancer” by most medical practitioners, organizations, and patient-education websites, which present that classification as the final word. What often goes unmentioned is that the classification itself remains contested, not whether DCIS exists, but whether calling it “cancer” gives patients an accurate picture of their actual risk, and how that wording affects treatment.

For decades, physicians, researchers, and patient advocates have questioned whether the word “carcinoma” belongs in the name of a condition that, in the majority of cases, will never become life-threatening. Four international clinical trials are currently testing whether women with low-risk DCIS can safely avoid immediate surgery, yet 97% of women diagnosed with DCIS today still undergo surgical excision. None of this is settled science, and patient-facing information that presents it as settled provides a life-altering disservice.

This letter and the references collected below are offered as a resource for a more comprehensive and honest discussion about this diagnosis.

DCIS 411 Open Letter

Dear Colleagues,

At DCIS 411, our mission is simple: to help women understand ductal carcinoma in situ through the full body of scientific evidence – not through fear or the urgency that often accompanies the word “cancer.” That mission is what prompted this letter.

Whether in exam rooms or on breast health websites, we see the same recurring pattern: women are told, “DCIS is cancer,” followed by recommendations for standard treatments they are encouraged to begin without delay. What’s missing, again and again, is any acknowledgment that this is one of the longest-running and most significant controversies in breast health.

First, we want to be clear about our intent. The organizations, clinicians, and advocates do real, valuable work supporting women through one of the most frightening moments of their lives, and trusted educational resources matter enormously. We share that same goal: empowering women with information that helps them make informed decisions. This letter isn’t written to single out any one source, it’s written because the pattern itself is worth naming.

Even the most thorough, well-intentioned guides on DCIS tend to follow the same shape: a definitive opening answer — DCIS is Stage 0 breast cancer, full stop — followed by an explanation of standard treatment, with no mention of whether all forms of DCIS should be called “cancer,” no mention of the terminology debate among experts, no mention of the possibility of overdiagnosis, and no mention of the active clinical trials testing whether treatment is always necessary. 

For decades, researchers, pathologists, surgeons, epidemiologists, communication scientists, and patient advocates have debated this very question. Nobody disputes that DCIS exists, or that some DCIS may progress to invasive cancer. The debate is narrower and more consequential than that: whether every form of DCIS deserves the label “cancer,” how its risks should be communicated to patients, and whether every diagnosis requires immediate treatment.

Why the word matters

This distinction shapes how women understand a diagnosis and the decisions they go on to make. Many women hear “carcinoma” and reasonably conclude they have a life-threatening disease requiring urgent action. Dr. Laura Esserman of UCSF, who has spent years pushing the field to reconsider low-risk DCIS, has put it directly: the case for change is overdue, and the field should be “demanding change.” Dr. Ann Partridge of Dana-Farber Cancer Institute, whose own research found that women treated for DCIS substantially overestimate their risk of recurrence and invasive disease, made a related point in the same interview: patients hear “cancer” and assume a disease that can spread and prove fatal, which is not how she describes DCIS to the women she treats 1. Dr. Shelley Hwang of Duke, a breast surgeon who has advocated for reclassifying low-risk DCIS, has described her own work as an effort to move DCIS out of “the cancer camp rather than the risk-factor camp” 2.

Others have made the same point in different language. Dr. Carmen Allegra, who chaired the 2009 NIH State-of-the-Science Conference on DCIS, and his co-panelists concluded that strong consideration should be given to removing the anxiety-producing term “carcinoma” from low-risk cases 3. Dr. Alastair Thompson, a breast surgeon interviewed by Medscape earlier this year, put the underlying clinical question plainly: not every woman needs to be subjected to surgery, drugs, or radiation 4. Dr. Silvia Formenti of Weill Cornell, speaking at a National Breast Cancer Coalition Project LEAD panel on DCIS, has likewise argued that DCIS functions less as a precancer on an inevitable path to invasion and more as a marker of risk, and that how it is named is part of the problem 5.

This isn’t just a matter of opinion. A qualitative study of women diagnosed with low-risk DCIS found that many, when asked directly, supported removing the word “carcinoma” from the description of their diagnosis, precisely because of how the word shaped their fear and their sense of how urgently they needed to act 22.

This is not a fringe position. Dr. Otis Brawley, former chief medical officer of the American Cancer Society, has been outspoken about breast cancer overdiagnosis, publishing on the need for the medical field to formally accept that it occurs and to weigh that reality against the benefits of screening 6,7. Dr. H. Gilbert Welch, whose research on three decades of mammography screening found that a substantial share of screen-detected breast cancers may represent overdiagnosis, has written extensively on how screening can find disease that would never have caused harm 8,9. Dr. Steven Narod, whose large cohort studies of DCIS outcomes have been influential and whose thinking on the natural history of DCIS has evolved as more data accumulated, is often cited by both sides of this debate. This in itself is a sign of how unsettled the science remains 10. Dr. Monica Morrow, Chief of Breast Surgery at Memorial Sloan Kettering, has long cautioned that while overtreatment is a real concern, DCIS is genuinely heterogeneous, and de-escalation needs to be approached carefully and selectively rather than applied uniformly, a reminder that this is a live scientific debate with thoughtful voices on multiple sides, not a settled matter in either direction 11.

The trials now underway

Medicine currently has no reliable way to predict which cases of DCIS will remain contained and which will go on to become invasive. That uncertainty, not fear, is the honest reason treatment is so often recommended. It is also precisely the uncertainty that COMET, LORIS, LORD, and LORETTA were designed to resolve. Yet women are rarely told that this uncertainty is the subject of active, funded, international research, or that for some carefully selected low-risk patients, it is now being studied through monitoring instead of immediate surgery.

The clearest evidence that this question remains open is the fact that four international randomized trials are actively testing it: COMET in the United States, LORIS in the United Kingdom, LORD in Europe, and LORETTA in Japan 12. Dr. Ian Kunkler, a LORIS investigator, has explained that the trial exists precisely because it is not known which cases of low-risk DCIS would ever progress to a life-threatening cancer in a woman’s lifetime, and that the standard practice of treating all of it surgically is, by definition, overtreating a share of those women 13.

This gap is common even in more detailed clinical trial sections that some organizations do publish. It’s not unusual for a site to discuss a single newer study, testing, for example, hormone therapy alongside active surveillance, while leaving out COMET, LORIS, LORD, and LORETTA, the four studies that have anchored international active-monitoring research for years. That omission matters because COMET is no longer simply “underway.” Its two-year results, published in JAMA in December 2024, found that women randomized to active monitoring developed invasive cancer in the same breast at a rate of 4.2%, compared to 5.9% among women who received immediate surgery, well within the margin the trial had set for declaring monitoring noninferior to surgery. A companion analysis found quality-of-life outcomes were similar between the two groups as well 24. These are not preliminary or theoretical findings; they are published, peer-reviewed results directly relevant to the choice a newly diagnosed woman is being asked to make, and they belong in any clinical trials section written for her.

These trials would not exist, and would not have secured funding, ethics approval, or patient enrollment, if the answer to “is this cancer” were as settled as most patient education suggests.

Communication is now part of the mainstream conversation

This is no longer solely an advocacy-community concern. A National Cancer Institute–convened working group published recommendations in a leading oncology journal on the need for new terminology for indolent, low-risk conditions currently labeled as cancer, including DCIS, and argued that precursors of cancer should not carry the word “cancer” in their name at all 14. Dr. Etta Pisano, a leading researcher in breast imaging, has separately written about the need to reduce overtreatment of potentially nonlethal cancers identified through screening 15. When a topic occupies attention at the NCI, in the peer-reviewed literature, and across multiple continents’ worth of clinical trials, it is fair to describe it as an open scientific question rather than settled fact, and fair to expect that patient-education organizations, wherever they are based, reflect that reality.

When is cancer not really cancer?

This same question is now the subject of dedicated international research. PRECISION, a consortium of researchers, physicians, and patient advocates led by Dr. Jelle Wesseling, was formed specifically to study when a cancer diagnosis is “not really cancer.” The consortium’s own framing is direct: screening is increasingly identifying lesions that will never become life-threatening, and these lesions are frequently treated as aggressively as if they would 16. That a dedicated research consortium exists to ask this question is itself evidence that it has not been answered.

How that question gets communicated to patients matters just as much as the underlying science. Dr. Joann Elmore of UCLA and colleagues, writing in a supplement to the Journal of the National Cancer Institute, have documented how mass media coverage shapes women’s treatment decisions after a DCIS diagnosis, noting, for example, that breast-conserving surgery rates shifted measurably after widely reported celebrity health decisions, including Nancy Reagan’s choice to undergo a mastectomy rather than breast-conserving surgery 17. Patient-facing websites are themselves part of that media environment, which is one more reason it matters whether they present DCIS as settled or as the subject of active, ongoing debate.

The patient experience: when language drives treatment

For most women, a diagnosis of ductal carcinoma in situ begins with one overwhelming word: “carcinoma.” That word often frames the entire conversation before biology, risk, or alternatives are ever discussed. Patients are typically referred directly to a breast surgeon, whose specialty is surgical treatment, which makes surgery the default recommendation. Discussion of the uncertainty surrounding DCIS biology, the possibility that many lesions may never progress, individualized risk assessment, or the growing evidence supporting active monitoring for carefully selected women remains uncommon. In the United States, 97% of women diagnosed with DCIS undergo surgical excision, of which roughly one-third involves mastectomy, with active monitoring still the exception rather than a routinely presented option 18.

The consequences of this pattern show up in treatment data. Even among women with low-risk, hormone receptor-positive DCIS, precisely the population most likely to be a candidate for a less aggressive approach, rates of bilateral mastectomy have doubled over the past two decades, even as nonsurgical management has also become somewhat more common in that same population 19. Women frequently describe feeling that immediate surgery is their only responsible choice after hearing they have “cancer,” rather than being offered a balanced discussion of DCIS biology, individualized risk, and the full range of evidence-based management options.

The psychological weight of this uncertainty is well documented. A qualitative interview study of women who came to believe their own DCIS or breast cancer diagnosis may have been overdiagnosed found that the realization carried a real emotional cost – affecting their sense of self, the quality of their interactions with medical professionals, and for some, lasting remorse about treatment they had already undergone 21.

Many physicians acknowledge that medicolegal concerns shape treatment recommendations as well. Even when a doctor believes active surveillance may be appropriate for a given patient, concern about liability can discourage offering it outside a clinical trial 20. As a result, women who are interested in surveillance or monitoring often find it difficult to locate a physician willing to support this approach, and those who do choose surveillance report feeling pressure to reconsider or isolation for having made a different, evidence-informed choice.

More recently, sociologist Chien-Juh Gu examined the experiences of women with low-risk DCIS who declined standard treatment by analyzing discussions within a private online support community. The study found that many participants did not view DCIS as “cancer” despite its medical classification, describing it instead as a condition with uncertain biological behavior and a risk that had been overstated during clinical consultations. Women frequently reported feeling pressured to undergo surgery, radiation, or endocrine therapy immediately after diagnosis, while those who chose active monitoring often felt isolated and unsupported within the healthcare system. The study also documented the profound psychological impact of the word “carcinoma,” with many participants describing fear, anxiety, and a sense of urgency triggered more by the diagnosis itself than by an understanding of their individual risk. Gu concludes that disagreements over DCIS are not simply scientific but also reflect differing perceptions of risk, underscoring the need for more balanced communication and genuinely informed decision-making 25.

Improving the patient experience begins with language. Words shape perception, emotion, and treatment decisions. Labeling every case of DCIS “carcinoma” creates an immediate sense of urgency that can overshadow a meaningful discussion of biology, prognosis, and individual risk. As scientific understanding evolves, the language used to describe low-risk lesions should be allowed to evolve with it, so that women can make informed decisions based on evidence rather than fear, and so that active monitoring is recognized as a legitimate, science-based option for the women who meet appropriate clinical criteria. These findings reinforce what many women have described for years: the language used to communicate a DCIS diagnosis can profoundly influence treatment decisions, often before patients have the opportunity to understand the uncertainties, controversies, and range of evidence surrounding the condition.

None of this is to say every woman experiences her diagnosis the same way, and that range of experience deserves equal respect. Many breast health websites feature survivor stories from women who find strength in refusing to soften the language of their diagnosis at all, women who describe embracing the word “cancer” plainly, and calling themselves cancer thrivers rather than patients, as part of what helped them move forward. That perspective is just as real, and just as worthy of a place on the page, as the perspective of women who found the “carcinoma” label frightening and disproportionate. The goal of this letter isn’t to argue that one label is correct and the other is not; it’s that women encountering a DCIS diagnosis deserve to see the full range of how other women have understood and named their own experience, rather than a single framing presented as the only way to understand it.

A suggested revision

Because clinicians, researchers, patient advocates, journalists, and breast health organizations all help shape how women understand a DCIS diagnosis, each has an opportunity—and a responsibility—to reflect the complexity of the evidence rather than present it as a settled question. Consider replacing an unqualified opening statement with something like:

“DCIS is currently classified by many organizations as Stage 0 breast cancer. At the same time, there is ongoing scientific debate about whether all forms of DCIS should be described as cancer, how risks should be communicated, and whether every diagnosis requires immediate treatment. Researchers continue to study these questions through international clinical trials and long-term outcomes research.”

A statement like this accurately reflects both the current medical classification and the continuing scientific discussion, without asking readers to take a side that hasn’t been fully explained to them. Even a single added sentence, noting that this same uncertainty is why international trials such as COMET, LORIS, and LORD have offered some women monitoring as an alternative to immediate surgery, would let most existing websites and pages keep their calm, reassuring tone while giving patients the full picture.

My hope is not to criticize any single organization’s work, but to invite a broader conversation across the breast health education community, one that reflects the full landscape of evidence and gives patients the tools to understand where thoughtful experts agree, and where they still don’t.

Thank you for taking the time to consider these thoughts, and for your continued dedication to improving breast health education.

With appreciation,

Donna Pinto

Founder, DCIS 411

Patient Advocate, COMET Trial and PRECISION Initiative

About DCIS 411

DCIS 411 is an independently created and maintained public service website founded by Donna Pinto in 2011, following her own DCIS diagnosis in 2010. Its mission is to help women become educated and empowered to make individualized healthcare decisions about DCIS based on facts, not fear. The site collects peer-reviewed research, expert commentary, active-monitoring clinical trial information, and patient perspectives on the controversies surrounding DCIS diagnosis, terminology, and treatment, and connects women with resources on informed consent and safe breast screening options. Through initiatives such as BeWISE (Women Informed Supported Empowered), DCIS 411 also works to ensure women receive balanced information about the potential harms of breast cancer screening, including overdiagnosis, before they consent to it 23. DCIS 411 does not provide medical advice; it exists to help women ask better questions of their own care teams.

Invitation to Collaborate

This letter and the resources collected here are a starting point rather than a finished conversation. If you work for an organization that educates women about DCIS — as a physician, researcher, journalist, or advocate — and would like to compare notes, share sources, or contribute to a shared, jointly developed patient resource on DCIS that reflects the full spectrum of expert opinion, we would welcome the conversation. Perhaps together, we could build something more useful than any one organization could produce alone: a resource any patient-facing website could point to with confidence.

Contact: donna@DCIS411.com