DCIS Diagnosis: Confusion Over Whether This Is Cancer or Not

Pam Harrison

February 22, 2022

Women diagnosed with ductal carcinoma in situ (DCIS) are frequently confused about the diagnosis, unclear about whether it is cancer or not, and have lingering concerns about how and why they chose to treat it.

These are the findings from a large, national survey of women who were diagnosed with DCIS. The findings were published online on February 22 in Cancer.

"Each year in the United States, nearly 50,000 women are diagnosed with ductal carcinoma in situ (DCIS), a noninvasive breast condition that has little potential to spread beyond the breast," comment lead author Shoshana Rosenberg, ScD, MPH, Weill Cornell Medicine, New York, and colleagues.

Although there is substantial heterogeneity among DCIS lesions, current estimates are that only 20% to 30% of DCIS cases will advance to invasive cancer over a lifetime, they point out.

Yet current treatment for DCIS is similar to that for invasive breast cancer, which usually includes some combination of surgery, radiotherapy, and/or endocrine therapy. Responses in the survey show that women worry about whether they had enough or too much treatment.

The survey shows that "participants with a history of DCIS reported confusion and concern about the diagnosis and treatment which caused worry and significant uncertainty," the authors conclude.

Is it Cancer of Not?

Many of the responses ''reflected uncertainty about whether DCIS was cancer or not," Rosenberg and colleagues report.

There has been some debate about this among experts. Some have proposed taking the word "carcinoma" out of the diagnosis and have suggested alternative wording, such as "indolent lesions of epithelial origin (IDLE)."

"It has been suggested that use of the word carcinoma (despite DCIS being a noninvasive condition) may contribute to concerns and to anxiety experienced after a DCIS diagnosis," Rosenburg and colleagues comment.

Indeed, some studies have shown that when the word "cancer" was not used to describe DCIS, women were more likely to opt for nonsurgical management than when the word "cancer" was used, as previously reported by Medscape Medical News.

"It's hard to know whether changing the nomenclature alone will impact how DCIS is perceived," Rosenberg told Medscape Medical News in an email.

"Given the heterogeneity of DCIS, decisions about [its] management should be made in collaboration with providers and [consideration given to] factors that may impact prognosis," she added.

At the same time, Rosenberg felt that it's not just about providing patients with more information but rather equipping providers with better tools to help communicate information to patients. "Tools such as decision aids can often be helpful in this setting and provide patients with balanced information about the harms and benefits of different management options," she noted.

"And I think this approach can help with the uncertainty many patients experience [over their DCIS diagnosis] and better support patients when they are considering treatment options," Rosenberg emphasized.

Web-Based Survey

The survey was web-based and involved 1832 respondents who had been diagnosed with DCIS. The median age at diagnosis was 60 years, and 90% of respondents were White. The median time from diagnosis to completion of the survey was 6 years.

As well as reflecting uncertainty about whether DCIS was cancer or not, some respondents felt that their physician had minimized the diagnosis or had failed to recognize its impact on their life. Others expressed concerns as to whether or not DCIS might be a precursor to "full-blown cancer" over time.

In addition, concerns were often related to uncertainties around and difficulties in choosing treatment options. Some respondents expressed regret over treatment decisions long after they had been through it.

Many respondents questioned whether the level of treatment chosen was appropriate — were they overtreated or had they done enough?

Along with the debate over changing the name of DCIS, there has been much discussion over whether these noninvasive lesions are being overtreated. There have also been proposals to defer immediate treatment for DCIS and instead follow these lesions with active surveillance or "watchful waiting," as is done in cases of low-risk prostate cancer.

But the authors report that among women who have been diagnosed with DCIS, the "perspectives regarding 'watchful waiting' as a strategy were mixed."

On the one hand, respondents expressed doubts and confusion about whether a watch and wait approach was adequate. Others indicated they wanted to embrace such a strategy but that their providers had discouraged it. A small number of respondents did decline standard DCIS treatment, and a similarly small number of participants wondered whether they would choose watchful waiting now if they had to make the same treatment decisions.

Many responses focused on the short- and long-term adverse consequences of treatment, including the loss of a breast, nipples, uneven breasts, scarring, and disfigurement. "Emotions ranged from severe depression and suicidal thoughts to lower levels of distress, fears, doubts, anxiety, embarrassment...and a general acknowledgement of an overall emotional burden," the authors elaborate.

Pain and numbness along with the impact that surgery had on their appearance were commonly reported, as were complaints about side effects from endocrine therapy among those who took it.

The survey also revealed multiple concerns about the risk of cancer recurrence. For example, some respondents expressed concern about developing cancer in the contralateral breast. Others were fearful of developing a more aggressive or more harmful cancer, while still others expressed fear over the cancer spreading to other parts of the body.

Confusion Shared by Clinicians

In this survey, the uncertainty among patients over whether DCIS is cancer is "perhaps not surprising," given that clinicians also appear to share some of this uncertainty, comment Bethany Anderson, MD, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin, and Julia White, MD, Ohio State University, Columbus, Ohio, in an accompanying editorial.

They cite a study of clinicians involved in the care of women with DCIS that was based on detailed telephone interviews, which found that many used conflicting terminology. For example, a radiation oncologist reported disagreeing with the breast surgeon's description of DCIS being "pre-cancer" and spent time to "clarify that it is breast cancer, but it's very early."

Also, the editorialists make the point that this survey had a specific purpose: the researchers sought to understand negative aspects of the patient experience in a group of women who largely received standard DCIS treatment so as to better inform a future clinical trial of active surveillance. They point out that only one neutral question was asked, and the authors did not inquire about aspects of the DCIS journey that went well.

Nevertheless, the survey does offer insight into the experience of women with DCIS, and it should help provoke more empathetic communication between providers and their patients, the editorialists comment.

"It should be noted...that many women with DCIS are otherwise quite healthy, and any degree of newly introduced breast cancer risk may be understandably worrisome," they point out.

"Hence, the mission of providers might be not to eliminate worry but rather to better educate women on their actual cancer risk, engage in shared decision-making regarding treatment options and provide additional emotional support," they add.

Not Always Benign

The editorialists also add a sobering note: while potential overtreatment is increasingly being discussed, "the diagnosis of DCIS does not always herald a benign outcome."

They cite a recent analysis that found that the risk of dying of breast cancer was three times higher for women with DCIS in comparison with cancer-free women. This risk was particularly notable in women younger than 40 years (a 12-fold increase) and in Black women (a 7.5-fold increase), they observe.

The study was supported by a Patient-Centered Outcomes Research Institute award. Rosenberg has disclosed no relevant financial relationships. Anderson reports having received an honorarium for speaking about breast brachytherapy at a breast cancer conference as well as an honorarium for participating in a breast cancer product development meeting.

Cancer. Published online February 22, 2022. Full text

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