A DCIS Diagnosis Introduces Physical, Emotional Uncertainty for Many Women

This new study focused on the patient perspective following a diagnosis of ductal carcinoma in situ (DCIS), a noninvasive type of breast cancer also referred to as stage 0 or pre-cancer, as well as their concerns over follow-up

A new study that investigated patient perspectives and concerns following a diagnosis of ductal carcinoma in situ (DCIS), a noninvasive type of breast cancer also referred to as stage 0 or pre-cancer, has identified 4 primary themes among patients’ responses to a web-based survey:

  • Uncertainty surrounding a DCIS diagnosis
  • Uncertainty about DCIS treatment
  • Concern about adverse effects of treatment
  • Concern about recurrence and/or developing invasive breast cancer

The findings were published online in the journal Cancer and highlight the confusion that often follows a DCIS diagnosis, particularly the possibility of disease recurrence. There is potential for some DCIS cells to become invasive, the authors noted, and patients with a DCIS diagnosis often still undergo treatment because of this. However, this can also lead to likely overtreatment in some women, as well.

“Of the nearly 50,000 women in the United States who undergo treatment for DCIS annually, many may not benefit from treatment,” they wrote. “To better understand the impact of a DCIS diagnosis, patients self-identified as having had DCIS were engaged regarding their experience.”

Hoping to supplement patient-reported outcomes data already gathered through the Comparing an Operation to Monitoring, With or Without Endocrine Therapy (COMET) trial, which was conducted among women with low-risk DCIS, the authors emailed a one-time survey with open-ended questions, to 1832 participants (median age at diagnosis, 60 [range, 29-95] years; 2.4% African American; 2.8% Hispanic; 90.0% White) of the Dr. Susan Love Research Foundation Army of Women. All participants self-reported a DCIS diagnosis.

The participants reported a median time from diagnosis of 6 (range, 0.1-61.0) years, and their most common surgeries were lumpectomy (56.9%), unilateral mastectomy (23.3%), and bilateral mastectomy (17.8%). More than half reported undergoing radiation (51.6%).

For the first identified theme of “uncertainty surrounding a DCIS diagnosis,” a majority of responses referred to DCIS often being categorized as a less severe diagnosis, the authors noted, with respondents expressing they were unsure if they could call themselves cancer survivors—and that this was because they felt their physician minimized their diagnosis.

When the authors dove further into their findings for the theme of “uncertainty about DCIS treatment,” they found most responses questioning the appropriateness of DCIS treatment, with responses ranging from too much (ie, unnecessary or too aggressive) to not enough (ie, can their treatment guarantee no recurrence or possible development of another cancer) treatment. Struggles around decision-making for surgery modality, radiation, endocrine therapy, some combination of the 3, or no surgery, and deciding to watch and wait were also revealed.

“Concern about treatment AEs” responses concentrated on both short- and long-term effects, and they covered surgery, radiation, and endocrine therapy. In particular, the survey respondents noted the importance of wanting to know how the breast area would change (eg, scarring, disfigurement), expressed emotions that ranged from lower-level fears to suicidal thoughts, and stressed their concerns on choosing one treatment modality over another (ie, radiation vs mastectomy), possibilities of pain and numbness from surgery, and AEs of oral endocrine therapy (eg, hot flashes, memory/cognition issues, hair loss, vision problems).

Responses for “concern about recurrence and/or developing invasive breast cancer” varied, too. The chief concern expressed was can the breast cancer come back and can that occur in the other breast. Others common concerns were the possibility of developing a more aggressive cancer or of metastatic disease. The study authors also found that many concerns under this theme were linked to doubts surrounding treatment choice or of DCIS being a precursor to other cancers.

Most responses were received for uncertainty about DCIS treatment (more than 2000), followed by uncertainty surrounding a DCIS diagnosis (1423 responses) and concern about treatment AEs and concern about recurrence/invasive breast cancer (more than 1100 each).

While the authors noted their findings can help to inform discussions on DCIS management options for everyone involved—patients, survivors, family members, health care providers, and other stakeholders—an accompanying editorial both reiterated that their findings can inform treatment providers and discussion surrounding risk and expressed concerns for areas the authors did not address, such as positive aspects of their cancer journey and outcomes among women with a second primary or disease recurrence.

“Providers should seek every opportunity to understand each patient’s unique experience,” the editorial noted, “and provide education and other forms of support to promote their overall well-being.”


Rosenberg SM, Gierisch JM, Revette A, et al. “Is it cancer or not?” A qualitative exploration of survivor concerns surrounding the diagnosis and treatment of ductal carcinoma in situ. Cancer. Published online February 22, 2022. doi:10.1002/cncr.34126

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