An Open Letter to Organizations That Educate Women About DCIS

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 some 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 websites that present it as settled do their readers a disservice, however well-intentioned.

This letter, and the references collected below, are offered as a resource for the organization it was written to, and for any other organization writing about DCIS for the women who will read it next.

The Open Letter

Dear Colleagues,

This letter was inspired by two recent pages published by Learn Look Locate: “Is DCIS Really Cancer? Understanding Stage 0 Breast Cancer” and a more detailed guide, “Ductal Carcinoma In Situ (DCIS): Stage 0 Breast Cancer — A Comprehensive, Patient-Centered Guide,” written by Senior Medical Advisor Dr. Barry Rosen. While the comments below are directed to those two pages, they reflect a broader concern about how DCIS is communicated across many educational websites.

First, thank you for the work you do to educate and support women facing breast health concerns. Receiving a DCIS diagnosis is often one of the most frightening experiences in a woman’s life, and trusted educational resources play an important role in helping patients navigate uncertainty. We share the same goal: empowering women with information that helps them make informed decisions.

It is in that spirit of collaboration that I raise a concern I see repeated across many otherwise excellent breast health websites, using these two Learn Look Locate pages as examples.

The first page opens with a definitive answer: it states that DCIS is Stage 0 breast cancer, full stop 1. While this reflects the classification used by many medical organizations, it leaves out something important: whether DCIS should be called “cancer” at all is one of the longest-running and most significant controversies in breast health. Notably, the same conclusion appears in Dr. Rosen’s more comprehensive guide, which states plainly that DCIS is breast cancer and organizes its entire explanation around that premise 19. This page is thoughtful, empathetic, and far more thorough than the typical DCIS FAQ page, which is exactly why it matters that even it does not mention the terminology debate, the concern about overdiagnosis, or several active clinical trials testing whether treatment is always necessary. And these two pages are far from alone. The same unqualified framing appears across many patient-facing resources, which is exactly why this concern is worth raising more broadly rather than with a single organization.

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 2. 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” 3.

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 4. 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 5. 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 6.

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 24.

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 7,8. 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 9,10. 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 11. 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 12.

The trials now underway

Dr. Rosen’s own guide comes close to making this case itself. It acknowledges, in its discussion of why stage 0 still matters, that medicine currently has no reliable way to predict which cases of DCIS will remain contained and which will go on to become invasive, and that this uncertainty, not fear, is why treatment is so often recommended 19. That is a fair and honest thing to tell patients. But it is also precisely the uncertainty that COMET, LORIS, LORD, and LORETTA were designed to resolve, and the guide does not mention that this uncertainty is the subject of active, funded, international research — or that for some carefully selected low-risk patients, that same uncertainty 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 13. 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 14.

This gap is especially visible in Dr. Rosen’s own guide. Its dedicated clinical trials section discusses the DCIS ReCAST trial, a newer U.S. study testing hormone therapy alongside active surveillance, but does not mention COMET, LORIS, LORD, or 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 26. 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 pages like this one suggest.

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 15. 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 16. 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 17. 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 18. 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 20.

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 21. 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 23.

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 22. 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.

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.

None of this is to say every woman experiences her diagnosis the same way, and that range of experience deserves equal respect. Dr. Rosen’s own guide includes a Survivor Spotlight featuring a woman named Melanie, who found strength in refusing to soften the language of her diagnosis at all: “Regardless of the stage, cancer is cancer” 19. For her, naming the experience plainly, and calling herself a cancer thriver rather than a patient, was part of what helped her 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 organizations like Learn Look Locate reach so many newly diagnosed women, each has a real opportunity to reflect this complexity rather than resolve it artificially. Consider replacing an unqualified opening line with something closer to:

“DCIS is currently classified by many organizations as Stage 0 breast cancer. However, 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. For Dr. Rosen’s guide specifically, a single added sentence after its discussion of predictive uncertainty, noting that this same uncertainty is why international trials such as COMET, LORIS & LORD have offered some women monitoring as an alternative to immediate surgery, would let the page keep its 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 25. 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