A blog, for women with DCIS (ductal carcinoma in situ)

Be Wise!

Cécile Bour, MD

June 9, 2020

This blog is the testimony of a young woman, Donna Pinto, who decided to share her story after being diagnosed with breast ductal carcinoma in situ at age 44, in 2009. After a period of fear, Donna decided to do extensive research on her own and make informed choices. This is more than a sharing of personal experience, as the pages of "DCIS 411" also contain a wealth of valuable resources gathered here: https://dcis411.com/bewise/ , under the theme "be wise", calling for empowerment in health.

According to Donna «#BeW I S E 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».

"Be wise" recalls the more general "choosing wisely" movement calling for enlightened information of women for an informed and shared decision making, which we have recently discussed[1]... Obviously, there is a general public demand for transparency in health information, and for shared decision making, with all the data in hand.

Ductal carcinoma in situ (DCIS) [2]

DCIS are largely contributing to over-diagnosis.Trials and research indicate that increasing DCIS detection has not decreased mortality from breast cancer. DCIS accounted for less than 5% of all breast cancers before the screening era, rising to 15-20% in all countries where screening campaigns occur. They are not counted in the incidence figures (rate of new cases) given by the French National Cancer Institute, as they are considered separately and not as "true" cancers.

In addition, there is a lack of a real consensus among anatomo-pathologists for the classification of these lesions when analyzing the biopsies they receive, with a tendency to overclassify them in poorer prognosis categories, for fear of underestimating a "disease".

Most DCIS are considered to be non-mandatory precursor lesions to invasive cancer; paradoxically, the dramatic increase in their detection followed by their surgical ablation has not been followed by a proportional decrease in the incidence of invasive cancers.

The major problem is that these particular breast cancer entities are treated with the same aggressiveness as breast cancer.

In October 2015 a study carried out by University of Toronto came up with the following results:

    -Their treatment makes no difference to women's survival.

    - Women with DCIS are heavily treated (sometimes by bilateral mastectomy) and have the same probability of dying from breast cancer as women in the general population.

    - Treating DCIS does not decrease their recurrence.

    - Prevention of recurrence with either radiotherapy or mastectomy did not prevent death from breast cancer.

Similarly, our study of mastectomies in France revealed a steady increase in the number of surgical procedures, our first hypothesis being the overtreatment of lesions that are not invasive cancers, but so-called pre-cancerous lesions and DCIS [3] [4].

The long-term consequences of overtreatment can be life-threatening. For example, radiation therapy on these lesions appears to be ineffective in reducing the risk of death from breast cancer, but it is associated with a dose-dependent increase (10-100% over 20 years) in the rate of major coronary events. [5]

In several countries, clinical trials are being conducted to test a simple active surveillance, especially for low-grade DCIS, rather than aggressive treatment:




For Philippe Autier [6], from the International Prevention Research Institute (IPRI), the problem is undoubtedly inherent to routine mammography, in particular digital mammography, which is too performant for the detection of small calcifications; these are the most frequent radiological sign of these forms, and the mammography has an excellent sensitivity for the detection of these microcalcifications.

You will find in our media library several clinical cases of carcinoma in situ, abusively called carcinoma [7].

Based on her experience, Donna created an informative blog to help women world-wide receive the same information and useful resources, as well as to provide a space for emotional support and connection.

The "resources" page contains, in addition to videos, a dotted visual "fact box" reflecting the risk/benefit balance of screening, similar to our poster published at the bottom of our home page, which can be downloaded.

Our opinion and conclusion

We applaud the presence of this blog, which will surely soothe and inform women who are certainly exaggeratedly frightened by DCIS, currently considered more as a marker of breast cancer risk than as true cancers, and whose detection is enhanced by intensive screening. DCIS percentage is steadily increasing, while their treatment has no impact on mortality. They contribute to over-diagnosis and over-treatment.

Ductal carcinomas in situ (DCIS) of the breast account for 85% to 90% of in situ breast cancers. These lesions are asymptomatic and frequently diagnosed during mammographic screening, particularly in the form of microcalcifications.

In France there is no recommendation to propose active surveillance as an alternative to local treatment, i.e. surgical removal, outside of supervised clinical trials.

All these resources are therefore very useful to know.

But even better would be the distribution of prior information to all women, before urging them to be screened, in order to give them the possibility of choice. The choice, among other options, is one of not opting for routine mammography, which does not save lives, which does not lower the rate of serious cancers, but instead increases the number of heavy treatments without any proven benefit, considering the three decades of experience that we now have with screening.

Driving citizens into a "disease" with screening tests that don't work, without informing them, is the worst thing in medicine, because it is selling lies by taking advantage of the trust that patients place in us.


[1] https://cancer-rose.fr/en/2020/12/15/less-is-more-medicine/

[2] See 10th point from the top, in the article https://cancer-rose.fr/en/2020/12/17/mammography-screening-a-major-issue-in-medicine/

[3] https://cancer-rose.fr/en/2020/12/17/our-study-does-organized-screening-really-reduce-the-surgical-treatments-of-breast-cancers/

[4] https://cancer-rose.fr/en/2020/12/17/explanation-of-our-study-on-mastectomies-in-france-carried-out-by-cancer-rose/

[5] SC Darby, M. Ewertz, P. McGale, AM Bennet, U. Blom-Goldman, D. Bronnum, et al.

Risk of ischemic heart disease in women after radiation therapy for breast cancer

N Engl J Med, 368 (11) (2013), p. 987-998

[6] https://cancer-rose.fr/en/2020/12/17/mammography-screening-a-major-issue-in-medicine/

[7] https://cancer-rose.fr/mediatheque/mediatheque-cas-cliniques/

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