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"Is it cancer or not?" A qualitative exploration of survivor concerns surrounding the diagnosis and treatment of ductal carcinoma in situ.

Publication ,  Journal Article
Rosenberg, SM; Gierisch, JM; Revette, AC; Lowenstein, CL; Frank, ES; Collyar, DE; Lynch, T; Thompson, AM; Partridge, AH; Hwang, ES
Published in: Cancer
April 15, 2022

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 self-identified as having had DCIS were engaged regarding 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 about DCIS diagnosis and treatment. Deductive and inductive codes were applied to the responses; common themes were summarized. RESULTS: Among the 1832 women included in the analytic sample, the median age at diagnosis was 60 years. Four primary 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 and/or developing invasive breast cancer. When diagnosed, participants were often uncertain about whether they had cancer or not and whether they should be considered a "survivor." Uncertainty about treatment manifested as questioning the appropriateness of the amount of treatment received. Participants expressed concern about the "cancer spreading" or becoming 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 the diagnosis and treatment, which caused worry and significant uncertainty. Developing strategies to improve patient and provider communications regarding the nature of DCIS and acknowledging gaps in the current knowledge of management options should be a priority.

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Published In

Cancer

DOI

EISSN

1097-0142

Publication Date

April 15, 2022

Volume

128

Issue

8

Start / End Page

1676 / 1683

Location

United States

Related Subject Headings

  • United States
  • Uncertainty
  • Survivors
  • Oncology & Carcinogenesis
  • Humans
  • Female
  • Communication
  • Carcinoma, Intraductal, Noninfiltrating
  • Carcinoma, Ductal, Breast
  • Breast Neoplasms
 

Citation

APA
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ICMJE
MLA
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Rosenberg, S. M., Gierisch, J. M., Revette, A. C., Lowenstein, C. L., Frank, E. S., Collyar, D. E., … Hwang, E. S. (2022). "Is it cancer or not?" A qualitative exploration of survivor concerns surrounding the diagnosis and treatment of ductal carcinoma in situ. Cancer, 128(8), 1676–1683. https://doi.org/10.1002/cncr.34126
Rosenberg, Shoshana M., 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. “"Is it cancer or not?" A qualitative exploration of survivor concerns surrounding the diagnosis and treatment of ductal carcinoma in situ.Cancer 128, no. 8 (April 15, 2022): 1676–83. https://doi.org/10.1002/cncr.34126.
Rosenberg SM, Gierisch JM, Revette AC, Lowenstein CL, Frank ES, Collyar DE, et al. "Is it cancer or not?" A qualitative exploration of survivor concerns surrounding the diagnosis and treatment of ductal carcinoma in situ. Cancer. 2022 Apr 15;128(8):1676–83.
Rosenberg, Shoshana M., et al. “"Is it cancer or not?" A qualitative exploration of survivor concerns surrounding the diagnosis and treatment of ductal carcinoma in situ.Cancer, vol. 128, no. 8, Apr. 2022, pp. 1676–83. Pubmed, doi:10.1002/cncr.34126.
Rosenberg SM, Gierisch JM, Revette AC, Lowenstein CL, Frank ES, Collyar DE, Lynch T, Thompson AM, Partridge AH, Hwang ES. "Is it cancer or not?" A qualitative exploration of survivor concerns surrounding the diagnosis and treatment of ductal carcinoma in situ. Cancer. 2022 Apr 15;128(8):1676–1683.
Journal cover image

Published In

Cancer

DOI

EISSN

1097-0142

Publication Date

April 15, 2022

Volume

128

Issue

8

Start / End Page

1676 / 1683

Location

United States

Related Subject Headings

  • United States
  • Uncertainty
  • Survivors
  • Oncology & Carcinogenesis
  • Humans
  • Female
  • Communication
  • Carcinoma, Intraductal, Noninfiltrating
  • Carcinoma, Ductal, Breast
  • Breast Neoplasms