How different terminology for ductal carcinoma in situ (DCIS) impacts women's concern and management preferences: A qualitative study

Highlights

• Women have high concern about the risk of DCIS progressing to invasive breast cancer.

• The majority of women preferred a diagnosis of DCIS to be communicated using non-cancer terminology.

• Overall women were willing to manage DCIS with watchful waiting.

Abstract

Objective

There are increasing rates of mastectomy and bi-lateral mastectomy in women diagnosed with ductal carcinoma in situ (DCIS). To help women avoid decisions that lead to unnecessary aggressive treatments, there have been recent calls to remove the cancer terminology from descriptions of DCIS. We investigated how different proposed terminologies for DCIS affect women's perceived concern and management preferences.

Materials and methods

Qualitative study using semi-structured interviews with a community sample of 26 Australian women varying by education and cancer screening experience. Women responded to a hypothetical scenario using terminology with and without the cancer term to describe DCIS.

Results

Among a sample of women with no experience of a DCIS diagnosis, a hypothetical scenario involving a diagnosis of DCIS elicited high concern regardless of the terminology used to describe it. Women generally exhibited stronger negative reactions when a cancer term was used to describe DCIS compared to a non-cancer term, and most preferred the diagnosis be given as a description of abnormal cells. Overall women expressed interest in watchful waiting for DCIS but displayed preferences for very frequent monitoring with this management approach.

Conclusion

Communicating a diagnosis of DCIS using terminology that does not include the cancer term was preferred by many women and may enable discussions about more conservative management options. However, women's preference for frequent monitoring during watchful waiting suggests women need more education and reassurance about this management approach.

Introduction

The incidence of ductal carcinoma in situ (DCIS) has increased substantially since the widespread introduction of organised breast screening programmes. DCIS now represents approximately one-fifth of screen detected cancers [1], with upwards of 50 000 women diagnosed each year in the United States alone [2]. There are now concerns that the advances in screening technology and the push for early detection has led to overdiagnosis and overtreatment of lesions with low malignant potential such as DCIS [3]. Although there is dispute about the rates of progression from DCIS to invasive breast cancer, with estimates ranging between 14% and 53% [4], DCIS is almost always managed as invasive breast cancer [5], [6]. This means that many women may receive unnecessary aggressive surgery and other treatments. Data also indicates that there is an increasing uptake of more aggressive treatments for DCIS such as mastectomy and bi-lateral mastectomy rather than lumpectomy [7], [8], [9]. An alternative management option for DCIS that has been proposed and is currently being investigated in two trials [10], [11] is watchful waiting, which consists of monitoring low-risk DCIS and providing treatment when symptoms appear or change [12].

To address overdiagnosis and overtreatment of DCIS, a prominent group of researchers including breast surgeons have called for a change in DCIS terminology to remove the cancer term [13], [14]. It has been suggested that the current terminology may be a potential driver of confusion for women about the risk of progression associated with their diagnosis and the distinction between DCIS and invasive cancer [15], [16], [17]. Research has also suggested a connection between women's anxiety, inaccurate perceptions of their risk of developing invasive breast cancer and impaired decision making [18], [19], [20]. A recent study of health care professionals indicated that there is still little consensus regarding how best to explain DCIS to patients [21], with different clinicians using different terms which adds to the confusion experienced by women.

A group of high level independent experts convened by the National Institute of Health and National Cancer Institute in the US have also called for the removal of the anxiety provoking cancer term from the description of DCIS [22], [23]. Furthermore, improving communication with patients about DCIS in general has been highlighted as a top tier research priority for the management of DCIS by the Patient-Centered Outcomes Research Institute [24].

This qualitative study aimed to examine in depth how different terminologies with and without the cancer term affect a community sample of women's concern about a hypothetical diagnosis of DCIS and their management preferences. We examined how women responded to the alternative proposed terms for DCIS and their preferences for management including watchful waiting which has been proposed as an option to avoid unnecessary treatment for women with DCIS.