Women confused by DCIS breast diagnosis
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“On the one hand [women] are being reassured that the condition is not life-threatening, yet on the other hand clinicians are recommending extensive, invasive treatment,” explained Fiona Kennedy, PhD, of Sheffield Hallam University, Sheffield, United Kingdom, in a statement describing a study she and her colleagues conducted regarding women's perceptions and experiences of DCIS from the period near diagnosis to 1 year later (J Adv Nurs. 2012;68:856-867).
Kennedy and coauthors defined DCIS as a noninvasive condition in which cancer cells are contained in the ducts of the breast. The team noted that uncertainty surrounds the natural history of DCIS, particularly whether it would progress to invasive breast cancer.
The researchers interviewed 45 women who had just been diagnosed with DCIS. Of this group, 27 women took part in a follow-up interview 9 to 13 months later. The interviews revealed that women's early perceptions of DCIS merged and sometimes conflicted with their lay beliefs of breast cancer, and that perceptions and experiences of the condition shifted over time as they interpreted various cues encountered in during their diagnosis, treatment, and posttreatment.
Many women felt confused and conflicted by their diagnosis, with some being told they had cancer and some being told they did not. Various medical personnel used the terms DCIS, precancer, and early breast cancer.
Women spoke about the contradictions of being told their condition was precancerous or noncancerous, but then being advised to have extensive, invasive treatment. When one woman's surgeon told her she shouldn't be so worried since she didn't have cancer, the woman wondered why, then, she had to have part of her breast removed and had to undergo radiotherapy.
Women who had more extensive surgery were more likely than others to be affected by their condition. Many experienced mixed and fluctuating emotions, sometimes feeling angry and other times feeling relieved that they didn't have a worse problem.
One of the most enduring emotions centered on ongoing risk. Some women had fleeting concerns whereas others had significant, intrusive thoughts that DCIS would recur or that they would develop invasive breast cancer.
Some women were concerned about the impact of the surgery on their appearance and body image, saying it left them feeling disappointed, vulnerable, and self-conscious.
Women who were confused about their own diagnosis found telling others about their condition to be a very challenging task.
The study authors recommended that clinicians carefully consider the language they use to describe DCIS; that clear, coherent, and flexible communication guidelines be developed for clinicians; and that further research be done to determine the most appropriate care, support, and information for this group of patients.