DCIS Redefined, Renamed & Reframed (O-DCIS)

“Strong consideration should be given to changing the phrase DCIS to eliminate the ‘anxiety-producing’ term carcinoma.” – National Institutes of Health Conference on DCIS, 2009.

• Despite decades of discussions by ethical medical professionals, nothing ever changed.
• Over 50,000 women annully are unnecessarily frightened by a “cancer” over-diagnosis.

Healthy women experience

“O-D-C-I-S”

OverDiagnosis

Creates

Iatrogenic 

Scare

iatrogenic 

: induced unintentionally by a physician or surgeon or by medical treatment or diagnostic procedures

“Women with DCIS are turned into ‘cancer patients’ with all the concomitant anxiety and implicit negative impact on family life that is almost certainly unwarranted for many. For example, in the United States it is estimated that almost 500,000 women have been treated for in situ cancers in the last 10 years with negligible impact on breast cancer mortality for up to 80% of these women. Moreover, estimates suggest that mammographic screening has resulted in overdiagnosis and overtreatment in over 1 million women in the United States in the past 30 years. The majority of this due to the overtreatment of DCIS. The Marmot Report in 2012 recognized the cost to women’s wellbeing of overtreatment.” – PRECISION (PREvent ductal Carcinoma In Situ Invasive Overtreatment Now) 

OverDiagnosis Creates Unnecessary Terror 

“I have developed never-ending health anxiety and depression.”

“I have been unable to work and my career was put to a stop.”

“Thoughts of treatment, disability, and death have become prevaling over anything else.”

Women given a diagnosis of Ductal carcinoma in Situ (DCIS) often experience emotional terror. Many are wrongly told, “You have breast cancer,” and, “You need to schedule a consultation with a breast surgeon.”

Next, there is a rush or sense of urgency to “get scheduled” for surgery choices (mastectomy or partial mastectomy followed by weeks of radiation.) 

Celebrities and media wrongly fuel the the idea of a ticking time bomb. 

Some women are so scared they want to amputate both breasts. 

Some doctors encouarge this.

“In a study of 100,000 women who were followed for two decades, patients who’d been diagnosed with and treated for DCIS ultimately had about the same chance of dying from breast cancer as those in the general population. And while Esserman was making this case years ago, she now finds herself part of a growing number of researchers and experts who are pushing back on the medical industry’s tendency to overtest, overdiagnose, and overtreat patients for conditions that otherwise might never affect their lives. Getting a biopsy is not pleasant, and 75% of all the biopsies we do turn out to be nothing. You stick a needle in the breast and sometimes you’ll see these little calcifications that are benign–but incidentally, there’s focus on DCIS, and the next thing someone’s getting a bilateral mastectomy. You think those things don’t happen. They happen all the time,” Esserman says. – The growing case for doing less: How harmless cancers are being overdiagnosed in America     

Read more: Overdiagnosis Devastates Lives of Healthy Women

New Research on DCIS Overtreatment (Harm of Overdiagnosis)

“Ductal carcinoma in situ (DCIS) is a prime example of potential overtreatment. DCIS is frequently detected by screening mammography, accounting for one quarter of all breast cancers diagnosed today. DCIS is usually treated similar to invasive breast cancer with surgery, radiation and hormone-blocking medicines. Despite newer research concluding these interventions provide no difference in survival, aggressive ‘cancer’ treatments remain the “standard of care,” and many women world-wide are faced with the life-long emotional, physical and financial consequences of aggressive treatments.” – PRECISION (PREvent ductal Carcinoma In Situ Invasive Overtreatment Now) 

“Up to 80% of DCIS lesions are indolent, low-risk lesions that will never progress to IBC during the patient’s lifetime. Consequently, there is a growing concern about overtreatment in women with DCIS.” – Active surveillance versus treatment in low-risk DCIS: Women’s preferences in the LORD-trial

A reminder to physicians of an oath they took as new medical doctors: 

Shifting the Paradigm 

Medical professionals acknowledge: 

“DCIS is an unintended consequence of mammography screening.”

Another way of putting this is:

DCIS is an iatrogenic (unintended) harm (consequence) of mammography screening.

OUR MISSION 

1. Create awareness about iatrogenic (unintended) harms from mammography screening
2. Amplify experts on Overdiagnosis as an iatrogenic harm (via videos and articles)  
3. Educate women, and the general public about iatrogenic harms via media and social media
4. Educate health-care providers of iatrogenic harms they may be contributing to
5. Transform lessons learned into opportunities to improve health, reduce risk of cancer via healthy diet / lifestyle, and seek to understand and eliminate root causes of cancer  

What are Iatrogenic Harms of Mammography Screening?

1. An epidemic of DCIS Overdiagnosis and subsequent unnecessary overtreatment
2. Misses 40% of true, real, invasive cancers
3. Thousands of unnecessary biopsies
4. Injuries from compression
5. Cancers due to cumulative radiation

“Mammography Saves Lives” is Marketing, Not Science.

Women are bombarded with slick pink marketing messages. The mantras come from the media, health-care providers, insurance companies, pink charities, celebrities and “survivor stories.”  

This leads to the “popularity paradox” — where a bad screening test creates many false positives, and much unnecessary treatment, but people end up feeling that they “owe their life” to screening when, in reality, they have been subjected to unnecessary treatments – and the resultant risks. – Patients deserve the truth: health screening can do more harm than good

“The greater the harm through overdiagnosis and overtreatment from screening, the more people there are who believe they owe their health, or even their life, to the programme.” – Screening: evidence and practice

– Cancer Screening & Overdiagnosis, H. Gilbert Welch, YouTube Screenshot (min 50:52)

The Evidence —  Harms Far Outweigh Benefits

“Screening saves probably one life for every 2,000 women who go for a mammogram. But it harms 10 others. Cancerous cells that will go away or never progress to disease in the woman’s lifetime are excised with surgery and sometimes (six times in 10) she will lose a breast. Treatments with radiotherapy and drugs, as well as the surgery itself, all have a heavy mental and physical cost. I believe the time has come to realize that breast cancer screening programs can no longer be justified.”   ^{– Peter Gotzsche, M.D., author of Mammography Screening: Truth, Lies and Controversy}

DCIS is a turtle — Barnyard analogy (birds, rabbits, and turtles)

A quick explaination: Screening for cancer is like a farmer trying to build fences to keep in his animals. The farmer has birds, rabbits, and turtles.

Fences won’t stop the birds (aggressive cancers) that will simply fly over them.

If you build enough fences, you can catch the rabbits, but what we are really good at fencing in are turtles (technically cancers, but very slow growing, and less likely to cause death.) The problem is that our pathologists can’t tell by looking at cells under a microscope whether they are looking at a turtle or a rabbit, and we often over treat.

H. Gilbert Welch describes cancers as birds, rabbits, and turtles.  DCIS is mostly found on screening and most are turtles. They do not need to be found or treated.  

Below is an excellent presentation on cancer Screening and Overdiagnosis. Mammography discussion starts at 32:27,  but the entire video is extremely beneficial:

How does overdiagnosis and overtreatment play out in a woman’s life?

Every day women are given scary risk statistics, and encouraged to  schedule immediate surgeries (even breast amputations), weeks of daily radiation, and years of toxic drugs — all for “abnormalities” found on screening mammograms. These aggressive treatments are prophalactic, meaning they are for prevention of a future possible invasive cancer.

Doctors now know the majority of DCIS will never become invasive cancer. But, often this is not conveyed to women. They could discuss overdiagnosis and ease the women’s mind.

Instead, women leave their “diagnosis consultation” feeling frightened and overwhelmed.  They are confused by the treatment options which are extremely scary and similar to treatments for invasive cancer! Women are told:

“It’s the standard of care.”

“We are following the guidelines.” 

Then women are often offered a prescription for psychiatric drugs.

Do doctors not know this methodology perpetuates tremendous harm and saves zero lives?

Women go home thinking they may die. Every day women newly diagnosed join online support groups and share similar horror stories. 

Beware Misleading “Survival” Statistics

Watch this short video by Dr. Gregor:

Beware big claims by biased Radiology Societies: 

• Mammography screening has been proven effective in reducing breast cancer deaths in women age 40 years and older.
• A mortality reduction of 40% is possible with regular screening.

Yet, statistics show the same number of women die of breast cancer every year!

Maybe those 50,000 “pre-cancers” are being counted as “lives saved” when they should really be counted as lives harmed by overdiagnosis and overtreatment.  

Women must seek unbiased information free from any conflict of interest. If someone’s job is connected to mammography screening — even in a downstream way (surgeons, oncologists, etc) — they may have a bias.

While some doctors have become champions for “de-escalation” of treatments as a solution, “active surveillance” using mammography does not solve the on-going concerns and harms of overdiagnosis.

It’s a vicious cycle — putting women on a perpetual hampster wheel of worry. 

• Will there be increased biopsies?
• Will there be on-going stress about potential cancers from excess cumulative radiation?
• Will invasive cancer be missed?

Medical professionals and researchers have failed to solve the biggest problem of all…

The on-going emotional, physical and financial harms of overdiagnosis.

Overdiagnosis and the popularity paradox explained in this video by Dr. Gregor who says the medical community has a responsibility to let women know about the harms of mammography screening:

Overdiagnosis almost always leads to overtreatment. Watch short video by Dr. Gregor: 

Cancer / Not Cancer — Moving Beyond the Divisive Debate   

Despite great efforts to reframe DCIS as a risk factor, not cancer, the majority of doctors and medical centers continue to perpetuate harmful information by stating, “DCIS is an early form of breast cancer — and treatment is needed to reduce risk of future cancer.”

This site makes the case and amplifies evidence for:

“DCIS is NOT breast cancer. It’s a risk factor. Treatments have great harms and zero life-saving benefit.”

About DCIS Redefined

Originally created in 2012 by two women who asked a lot of questons regarding aggressive “standard of care” treatments for DCIS. Read more here.

Overdiagnosis of DCIS continues to harm women’s lives.  

While overtreatment is being researched, the solutions fail to shine light on overdiagnosis — an epidemic impacting tens of thousands of women’s lives annually.

Women are Shifting the Paradigm by:

• Understanding “DCIS is not Cancer”
• Saying NO to surgery and other harmful treatments for risk reduction
• Feeling empowered, not “crazy”
• Getting off the over-scared, over-diagnosed and over-treatment train
• Seeking out and aligning with holistic diet and lifestyle strategies + safe imaging

Our goals include:

• Improving overall health while lowering cancer risk in holistic ways 
• Safe imaging which detects INVASIVE cancer only, not DCIS

We are no longer interested in:

• Mammography screening
• Watching and worrying about calcifications
• a disease mindset
• Fear-based risk statistics that do not include diet & lifestyle

We are focusing on:

• Nourishing our bodies, minds and spirits in the healthiest way possible
• Safe imaging for reassurance and peace of mind
• Empowering ourselves with wisdom and support from like-minded people

Please explore this website, leave a positive comment, and share with anyone who may be interested.

Please “like” DCIS Redefined Facebook page.

We also publish on-going blog posts and articles. To receive emails alerting you to new posts about DCIS, healthy living, and safe imaging, please join our Proactive Breast Health Club