Overdiagnosis Devastates Lives of Healthy Women
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 is due to the overtreatment of DCIS.” – PRECISION (PREvent ductal Carcinoma In Situ Invasive Overtreatment Now), an international research project funded by Cancer Research UK
In this country, the huge jump in D.C.I.S. diagnoses potentially transforms some 50,000 healthy people a year into “cancer survivors” and contributes to the larger sense that breast cancer is “everywhere,” happening to “everyone.” That, in turn, stokes women’s anxiety about their personal vulnerability, increasing demand for screening — which, inevitably, results in even more diagnoses of D.C.I.S. Meanwhile, D.C.I.S. patients themselves are subject to the pain, mutilation, side effects and psychological trauma of anyone with cancer and may never think of themselves as fully healthy again. – Our Feel-Good War on Breast Cancer, NY Times, Peggy Orenstein
According to Dr. Laura Esserman, Director of the Carol Franc Buck Breast Care Center at UCSF stated, “DCIS is not cancer. It’s a risk factor. In Our Feel-Good War on Breast Cancer, Esserman states, “For many DCIS lesions, there is only a 5 percent chance of invasive cancer developing over 10 years. That’s like the average risk of a 62-year-old. We don’t do heart surgery when someone comes in with high cholesterol. What are we doing to these people?”
Cancer Research UK states: Overdiagnosis: when finding cancer can do more harm than good
Overdiagnosis, in turn, leads to overtreatment, which is the treatment of clinically insignificant disease, essentially giving too much treatment without benefit to the patient. Treating a cancer that is not life-threatening leads to significant harm for women. Accepting the Swiss Medical Board estimates, that means one in five women who was told she had breast cancer after her mammogram received unnecessary treatment for cancer. The result is that tens of thousands of women in the U.S. each year are treated unnecessarily for breast cancer and undergo surgery, radiation and chemotherapy for tumors that are not and never would be life threatening. – How Routine Mammography Screening Leads to Overdiagnosis & Overtreatment, Breast Cancer Action
Research on Psychological Harm of Overdiagnosis
The Marmot Report in 2012 recognised the burden of overtreatment to women’s wellbeing.7 In effect, women with DCIS are labelled as ‘cancer patients’, with concomitant anxiety and negative impact on their lives, despite the fact that most DCIS lesions will probably never progress to invasive breast cancer. Owing to the uncertainty regarding which lesions run the risk of progression to invasive cancer, current risk perceptions are misleading and consequently bias the dialogue between clinicians and women diagnosed with DCIS, resulting in overtreatment for some, and potentially many, women. – Ductal carcinoma in situ: to treat or not to treat, that is the question
More Research Concluding Serious Psychological Harm
- Severe depression more common in patients with ductal carcinoma in situ than early-stage invasive breast cancer patients
- Study Conclusion. Women with a history of DCIS continue to harbor inaccurate perceptions of their risk for future breast cancer events even 5 years after diagnosis.
- Study Conclusions: Many women with newly diagnosed DCIS have inaccurate perceptions of the breast cancer risks that they face, and anxiety is particularly associated with these inaccurate perceptions.
What To do about Overdiagnosis?
“First and foremost, tell the truth: women really do have a choice. While no one can dismiss the possibility that screening may help a tiny number of women, there’s no doubt that it leads many, many more to be treated for breast cancer unnecessarily. Women have to decide for themselves about the benefit and harms. But health care providers can also do better. They can look less hard for tiny cancers and pre-cancers and put more effort into differentiating between consequential and inconsequential cancers. We must redesign screening protocols to reduce overdiagnosis or stop population-wide screening completely. Screening could be targeted instead to those at the highest risk of dying from breast cancer — women with strong family histories or genetic predispositions to the disease. These are the women who are most likely to benefit and least likely to be overdiagnosed.” – Cancer Survivor or Victim of Overdiagnosis? , NY Times, H. Gilbert Welch
Education about Overdiagnosis is Critical
In Britain, where women are screened every three years beginning at 50, the government recently decided to revise its brochure on mammography to include a more thorough discussion of overdiagnosis, something it previously dispatched with in one sentence. That may or may not change anyone’s mind about screening, but at least there is a fuller explanation of the trade-offs. – Our Feel-Good War on Breast Cancer, NY Times, Peggy Orenstein
YouTube University — Experts Explain Overdiagnosis
The internet enables all of us to get educated by experts explaining overdiagnosis!
Professor Michael Baum presentation 2010
If we assume that screening reduces breast cancer mortality by 15% and that overdiagnosis and overtreatment is at 30%, it means that for every 2000 women invited for screening throughout 10 years, one will avoid dying of breast cancer and 10 healthy women, who would not have been diagnosed if there had not been screening, will be treated unnecessarily. Furthermore, more than 200 women will experience important psychological distress including anxiety and uncertainty for years because of false positive findings. To help ensure that the women are fully informed before they decide whether or not to attend screening, we have written an evidence‐based leaflet for lay people that is available in several languages on www.cochrane.dk. Because of substantial advances in treatment and greater breast cancer awareness since the trials were carried out, it is likely that the absolute effect of screening today is smaller than in the trials. Recent observational studies show more overdiagnosis than in the trials and very little or no reduction in the incidence of advanced cancers with screening. Screening for breast cancer with mammography, Cochrane Database of Systematic Reviews , Peter C Gøtzsche, Karsten Juhl Jørgensen
BeWISE (Women Informed Supported Empowered) is a woman’s health initiative with an urgent public health mission — to ensure all women are properly informed about serious potential harms of breast cancer screening.
Conflicts of interest and well-funded marketing campaigns have created an imbalance of information — promoting a one-sided story of “life-saving” benefits of mammography while ignoring or downplaying serious harms.
Inspired by thousands of women’s personal experiences and shocking discoveries following a diagnosis of DCIS, also known as “Stage Zero” Breast Cancer, #BeWISE seeks to spare thousands of women world-wide annually from harm due to being uninformed or misinformed.
#BeWISE utilizes videos and info-graphics to break down real science into simple, no-nonsense chunks.