DCIS Communication

DCIS 411 has collected articles on the DCIS communication “controversy” since 2009!

Several breast cancer experts have questioned whether the word “carcinoma” should be removed from DCIS (Ductal Carcinoma in Situ).

“Because of the noninvasive nature of DCIS, coupled with its favorable prognosis, strong consideration should be given to remove the anxiety-producing term “carcinoma” from the description of DCIS.”

– NIH State-of-the-Science Conference: Diagnosis and Management of Ductal Carcinoma in Situ (DCIS), 2009

Take Carcinoma Out of DCIS and Ease Off Treatment, Medscape, Jan 2010

“The term carcinoma in the phrase ductal carcinoma in situ (DCIS) is misleading and troubling and ought to be dropped, or at least its dropping should be considered.”

• “Minimal-risk lesions should not be called cancer.” – Dr. Laura Esserman 

• “With DCIS, the bulk of what we find is not high grade.”
• “Only high-grade DCIS is likely to progress to invasive breast cancer.”
• “If it doesn’t look like high-grade DCIS, we should leave it alone. We would eliminate two thirds of all biopsies if we did.”
•  “Currently there are sufficient data to stop and rethink the entire approach to DCIS.”
• “Less than 5% of DCIS turns out to be something else, including invasive cancer.”
• “There are now 60,000 new cases a year of DCIS in the United States. But we haven’t seen any drop in invasive cancers, despite treatment of DCIS as if it were early cancer.”  

In The Danger of DCIS, The Breast “Cancer” That’s Often Not — In response to one of the most commonly diagnosed breast “cancers,” Dr. Shelley Hwang is staging a radically conservative campaign to save our breasts.

“The power of the C word is one reason Hwang and others of like mind have advocated eliminating “carcinoma” from the name of DCIS, though so far the effort hasn’t really caught on. To test the idea, Hwang co-authored a study in which three groups of subjects were given a description of DCIS.”

When the word “cancer” was used to describe DCIS, women were more likely to choose immediate surgery.

When the words “breast lesion” or “abnormal cells” were used, women were more likely to choose “active surveillance.”

The word “cancer” scares us like a shark, but are most DCIS more like minnows?

“I had a woman in her early forties. She was single, had never been married, had never had kids. She decided to have a mastectomy, and she was never the same. It ruined her life. The woman had pre-cancer, a cluster of abnormal cells called ductal carcinoma in situ (DCIS). It’s an entity that isn’t cancer and will never become cancer in an estimated 70 percent of cases.

“Somehow DCIS ended up in the cancer camp rather than the risk-factor camp, and all my work is to push it back.” – Dr Shelley Hwang, Duke Cancer Institute

Are physician’s concerns about DCIS for the right reasons?

“Another factor maintaining the DCIS status quo, what Hwang calls “the elephant in the room,” is doctors’ potent fear of being sued. There are at least three sets of specialists who are vulnerable to failing to find or adequately treat DCIS. The first are the radiologists, who examine mammograms to decide which configurations and concentrations of calcium deposits to refer for biopsy to determine if they’re DCIS. The second are the pathologists, who actually look at the cells under a microscope and decide which are funky enough to be deemed DCIS versus “atypical,” or benign. And finally, there are the surgeons, who recommend treatment to patients. “In this medical/legal environment,” as one doctor told me, it’s daunting to be the one to make the first move, especially when the research isn’t as solid as many physicians would like. Yet in Europe, where malpractice actions are less frequent and DCIS is less frequently treated, the breast cancer mortality rate is very similar to ours.” – Dr. Shelley Hwang

Another Terminology Survey in Australia

Australian researchers investigated the effect of describing DCIS as ‘abnormal cells’ versus ‘pre-invasive breast cancer cells’ on women’s concern and treatment preferences: “In a hypothetical scenario, interest in watchful waiting for DCIS was high, and changing terminology impacted women’s concern and treatment preferences.” – How different terminology for ductal carcinoma in situ impacts women’s concern and treatment preferences: a randomised comparison within a national community survey

New research asks — When is cancer not really cancer?

PRECISION is an international consortium of researchers, physicians, and patient advocates working together to understand:

When Cancer is NOT REALLY CANCER

“While early cancer detection may offer a survival benefit, increasing numbers of ‘pre-cancerous lesions’ are also being identified that will never develop into lethal disease. These ‘pre-cancers’ are often treated aggressively to prevent potential progression into invasive cancer.” – PRECISION

A Proposal for Less Threatening Terminology

“A vast range of disorders—from indolent to fast-growing lesions—are labelled as cancer. Therefore, we believe that several changes should be made to the approach to cancer screening and care, such as use of new terminology for indolent and precancerous disorders. We propose the term indolent lesion of epithelial origin, or IDLE, for those lesions (currently labeled as cancers) and their precursors that are unlikely to cause harm if they are left untreated. Furthermore, precursors of cancer or high-risk disorders should not have the term cancer in them.” – Addressing overdiagnosis and overtreatment in cancer: a prescription for change

Communication Between Patients and Providers and Informed Decision Making

“The term DCIS includes the anxiety-producing term “carcinoma,” which may add to the challenge of effective communication as concluded by the State of the Science panel (4). Indeed, a heightened sense of risk with regard to breast cancer has been noted in studies of women, even in the absence of a diagnosis of DCIS. One survey found that women in their 40s overestimated their risk of a breast cancer diagnosis within the next 10 years by a factor of 6, and their risk of dying of breast cancer by a factor of 20. In addition, it can also be difficult to explain the nature of DCIS as a preinvasive lesion that is distinct from invasive cancer. This concept may be hard for clinicians to describe and for patients and their families to comprehend. Among women with DCIS, uncertainty regarding the relationship of DCIS to future invasive cancer often leads to anxiety. Even after receiving treatment, women with DCIS overestimate their future breast cancer risk.

Some women might be so alarmed by a diagnosis of DCIS that they just want to “take it off”—meaning to undergo mastectomy, the most aggressive and complete treatment possible. Preferences for cancer treatment lean strongly in the direction of extensive treatment, even if significant potential harms are associated with the treatment. The thought of living with uncertainty after a less aggressive treatment such as a lumpectomy with radiation therapy might be unbearably stressful to some women, and thus they would prefer to do everything possible to treat DCIS. One study, entitled “Cure me even if it kills me,” found that individuals would prefer to undergo invasive surgery for cancer even if the treatment might be more harmful than beneficial. 

The stress caused by uncertainty for some women is so acute that they even want to have the contralateral breast removed. The use of contralateral prophylactic mastectomy in the United States has markedly increased over time. Among patients who underwent mastectomy to treat DCIS, the contralateral prophylactic mastectomy rate increased by 188% from 1998 (6.4%) to 2005 (18.4%).

Mass media can influence women’s decisions about DCIS treatment. The media typically sensationalize medical information about breast cancer (14), and numerous individuals and groups publicize their “war” against cancer. One study suggests a relationship between fear of breast cancer and exposure to breast cancer coverage in television news programs. The medical care received by female celebrities can also influence the behavior of the general population. For example, immediately after Nancy Reagan decided against breast-conserving surgery and underwent a mastectomy, a significant reduction was noted in the percentage of women with early-stage breast cancer who received breast-conserving surgery.” Read full article: Communication Between Patients and Providers and Informed Decision Making, JNCI, Oct 2010, Joann G. Elmore, Pamela S. Ganschow, Berta M. Geller

Click here for more articles about Renaming DCIS and other Controversies.