31 Days of “Little Known” FACTS — For Breast Cancer Awareness Month — Day 24 — The Word “Cancer” is Scary & Misleading for DCIS

Did you know…

Several breast cancer experts over the last 10+ years 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

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.”

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

It’s been 10 years:

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.”  

Patient Advocates Say “Just Do it!”

shark-feature

Look for the SHARKS only —

High-risk DCIS and Invasive cancer

 

minnows

 

Stop looking for and over-treating low-risk IDLEs (minnows)

 

IMG_0236

 

Leave healthy women alone

 

 







About Donna Pinto

I was born and raised in New Jersey and moved to the San Fernando Valley of Los Angeles when I was 12. I graduated with a BA in Journalism/Advertising from San Diego State University. After a short stint in magazine ad sales in LA, I was offered my dream job working for Club Med. I spent two years working at resorts in Mexico, The Bahamas, The Dominican Republic and Colorado. My husband Glenn & I met while working at Club Med in Ixtapa, Mexico. We returned to "real life/jobs" for three years before we embarked on a two year honeymoon around the world. Together we wrote a book called "When The Travel Bug Bites: Creative Ways to Earn, Save and Stay Abroad." I am also the author of "Cheatnotes on Life: Lessons From The Classroom of Life," a quote book for new graduates. Becoming a mom changed my life and I was fortunate to work part-time from home with many amazing nonprofits. In 2010, a DCIS diagnosis inspired me to an investigation that culminated in creating DCIS 411 and Give Wellness.
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