A qualitative exploration of survivors’ concerns surrounding the diagnosis and treatment of ductal carcinoma in situ.
Background
Of the nearly 50,000 women in the United States who undergo treatment for ductal carcinoma in situ (DCIS) annually, many may not benefit from treatment. To better understand the impact of a DCIS diagnosis, patients who self-identified as having DCIS participated in their experience.
Methods
In July 2014, a web-based survey was administered through the Susan Love Army of Women breast cancer listserv. The survey included open-ended questions designed to assess patients’ perspectives on the diagnosis and treatment of DCIS. Deductive and inductive codes were applied to the responses; common themes were summarized.
Results
Among the 1832 women included in the analytical sample, the median age at diagnosis was 60 years. Four main themes were identified: 1) uncertainty surrounding a DCIS diagnosis, 2) uncertainty about DCIS treatment, 3) concern about treatment side effects, and 4) concern about recurrence or development of invasive breast cancer. .
When diagnosed, participants were often unsure whether or not they had cancer and whether they should be considered "survivors." Uncertainty about treatment manifested as questioning the appropriateness of the amount of treatment received. Participants expressed concerns about the "spread of the cancer" or that it might become invasive and that they were not necessarily "doing enough" to prevent recurrence.
Conclusions In a large national sample, participants with a history of DCIS reported confusion and concern about diagnosis and treatment, causing significant worry and uncertainty. Developing strategies to improve communications between patients and providers regarding the nature of DCIS and recognizing gaps in current knowledge of management options should be a priority. |
Comments
Worry and uncertainty are common after ductal carcinoma in situ diagnoses
Study findings point to need for greater doctor-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 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 that translates to "in place," meaning the cancer is localized and has not spread, sometimes called stage 0 or precancer. Although DCIS is limited to the breast, it is often treated because, if left untouched, some DCIS cells can change and become invasive cancer cells that are capable of spreading.
Because DCIS has a good prognosis and rarely progresses to cancer , it is important to understand patients’ wishes regarding treatment. Some may want to undergo surgery, others may prefer non-surgical medical interventions, and others may choose to take a "watch and wait" or active monitoring approach.
Shoshana M. Rosenberg, ScD, MPH, from Weill Cornell Medicine in New York City, to examine the clinical and psychosocial impact of a DCIS diagnosis from the patient’s perspective and understand patients’ primary concerns at the time of diagnosis through long-term follow-up. She and her colleagues administered a unique web-based survey with open-ended questions to patients with DCIS. Data from 1,832 respondents were analyzed.
Four main themes were identified:
- Uncertainty surrounding a diagnosis of DCIS.
- Uncertainty about the treatment of DCIS.
- Concern about the side effects of treatment.
- Concern about recurrence and/or development of invasive breast cancer.
When diagnosed, patients were often unsure whether or not they had cancer, and whether they should be considered survivors. Patients also often questioned the appropriateness of the amount of treatment they received. Participants expressed concerns 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 also reported ambiguity surrounding the nature and prognosis of DCIS. Improving communication about the risk, as well as the harms and benefits of different DCIS management options through the use of decision support tools, is a potential approach to address this problem,” said Dr. Rosenberg.
An accompanying editorial notes that the study provides important information that can inform physicians 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.
