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Worry and uncertainty are common following ductal carcinoma in situ diagnoses

02/22/2022

Study’s findings point to the need for greater clinician-patient communication

Each year in the United States, nearly 50,000 women are diagnosed with ductal carcinoma in situ (DCIS), a non-invasive breast condition that cannot spread. New research published by Wiley online in CANCER, a peer-reviewed journal of the American Cancer Society, indicates that many women with DCIS experience confusion and distress about their diagnosis and treatment.

In situ is a Latin phrase translating to “on site,” meaning that the cancer is localized and has not spread—sometimes referred to as stage 0 or pre-cancer. Although DCIS is confined to the breast, it is often treated because if left alone, some DCIS cells may change to become invasive cancer cells that are capable of spreading. Because DCIS carries a good prognosis and rarely progresses to cancer, it is important to understand patients’ wishes concerning treatment. Some may want to undergo surgery, others may prefer non-surgical medical interventions, and still others may choose to take a “watch and wait,” or active monitoring, approach.

To examine the clinical and psychosocial impact of a DCIS diagnosis from the patient’s perspective and to understand patients’ primary concerns at diagnosis through long-term follow-up, Shoshana M. Rosenberg, ScD, MPH, of Weill Cornell Medicine in New York City, and her colleagues administered a one-time web-based survey with open-ended questions to patients with DCIS. Data from 1,832 respondents were analyzed.

Four primary themes were identified:

  • uncertainty surrounding a DCIS diagnosis,
  • uncertainty about DCIS treatment,
  • concern about treatment side effects, and
  • concern about recurrence and/or developing invasive breast cancer.

When diagnosed, patients were often uncertain about whether they had cancer or not, and whether they should be considered a survivor. Patients also often questioned the appropriateness of the amount of treatment they received. Participants expressed concern about the cancer spreading or becoming invasive, and that they were not necessarily doing enough to prevent recurrence.

“Our findings build on previous studies that have also reported on the ambiguity around the nature and prognosis of DCIS. Improving communication around risk as well as the harms and benefits of different DCIS management options through the use of decision support tools is one potential approach to address this issue,” said Dr. Rosenberg.

An accompanying editorial notes that the study provides important insights that can inform clinicians as they care for patients with DCIS. “Providers should seek every opportunity to understand each patient’s unique experience and provide education and other forms of support to promote their overall well-being,” the authors wrote.

Additional Information

NOTE: The information contained in this release is protected by copyright. Please include journal attribution in all coverage. A free abstract of this article will be available via the Cancer News Room upon online publication. For more information or to obtain a PDF of any study, please contact:

Dawn Peters +1 781-388-8408 (US)
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Full Citations:

“‘Is it cancer or not?’ A qualitative exploration of survivor concerns surrounding the diagnosis and treatment of ductal carcinoma in situ (DCIS).” Shoshana M. Rosenberg, Jennifer M. Gierisch, Anna C. Revette, Carol L. Lowenstein, Elizabeth S. Frank, Deborah E. Collyar, Thomas Lynch, Alastair M. Thompson, Ann H. Partridge, and E. Shelley Hwang. CANCER; Published Online: February 22, 2022 (DOI: 10.1002/cncr.34126).

URL Upon Publication: http://doi.wiley.com/10.1002/cncr.34126

“Improving the well-being of women with DCIS: a worthy goal with an unclear route to success.” Bethany M. Anderson and Julia R. White. CANCER; Published Online: February 22, 2022 (DOI: 10.1002/cncr.34125).

URL Upon Publication: http://doi.wiley.com/10.1002/cncr.34125

Author Contact: Christine Zhuang, communications for Weill Cornell Medicine at [email protected].

About the Journal

CANCER is a peer-reviewed publication of the American Cancer Society integrating scientific information from worldwide sources for all oncologic specialties. The objective of CANCER is to provide an interdisciplinary forum for the exchange of information among oncologic disciplines concerned with the etiology, course, and treatment of human cancer. CANCER is published on behalf of the American Cancer Society by Wiley and can be accessed online.

Follow us on Twitter @JournalCancer

About Wiley

Wiley is a global leader in research and education, unlocking human potential by enabling discovery, powering education, and shaping workforces. For over 200 years, Wiley has fueled the world’s knowledge ecosystem. Today, our high-impact content, platforms, and services help researchers, learners, institutions, and corporations achieve their goals in an ever-changing world. Visit us at  Wiley.com, like us on Facebook and follow us on Twitter and LinkedIn.

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