PRESS RELEASE, English version of Cancer Rose web site.

2021, January 7

After several months of dedicated work, time and energy, we are pleased to announce the launch of English version of Cancer Rose web site.

Cancer Rose is a Non-Profit Organization under French law made up of independent Medical Doctors, a Doctor in Toxicology and a patient representative, with the goal of providing fair, transparent and objective information for French women on mass screening for breast cancer, based on scientific evidence.

We participated in the French Citizen and Scientific Consultation on Breast Cancer Screening organized by French Minister of Health in 2015, following the controversy on this topic in France.

We founded Cancer Rose organization and created the website in 2016.

At the international level, we exchange and share information on medical issues including over-diagnosis and the resulting over-treatment, with members of different organizations such as HealthWatch Charity in the UK,  the Institute of Scientific Freedom in Denmark, Choosing Wisely health organization in Canada, Wiser Healthcare Group of collaborating researchers in Australia, as well as American patient advocate Donna Pinto, member of the Steering Committee of the International “Precision” Project.

Our aim with this English version is to inform international visitors about our activities, to create connections and share our views on mass breast cancer screening controversy with women and professionals around the world.

We will update our content with new information, posts, announcements, events.

We hope you can find this website useful and easy to navigate.

Please follow us on Twitter and Facebook for news.

If you have any questions, suggestions, feedback or comments, please contact us.

Members of Cancer Rose have no sponsorships, honoraria, monetary support or conflict of interest from any commercial sources. They dedicate their time to this activity on a voluntary basis. The funds necessary for the functioning of this website and production of information materials (educational films, brochures, posters) are generated by individual donations and members contributions.

Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.

Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.

Critical analysis of the new INCa information booklet

In August 2017 the National Cancer Institute (INCa) published a new information booklet on breast cancer screening entitled: "Breast cancer screening; be informed and decide". (1)
INCa presents this booklet on its website as follows: "This booklet is intended for women aged 50 who are invited for the first time to have a breast cancer screening test. It is intended to be joint to the invitation letter. By answering the main questions about breast cancer and screening tests, the booklet enables women to make an informed decision in response to the invitation. It can also be distributed at information meetings. »
In September 2017 we conducted a critical analysis of this booklet.
Three years later, in January 2021 we can make the observation that nothing has been changed in the content of this booklet.


September 17, 2017

Cécile Bour, MD
Marc Gourmelon, MD
Philippe Nicot, MD

The National Cancer Institute (INCa) has published a new information booklet on breast cancer screening entitled: "Breast Cancer Screening; Be Informed and Decide". (1)

The 2016 citizens' consultation had clearly pointed out the miscommunication and misinformation committed in the past by the institute, on page 85 of the full report available at the following link

"...the public consultation on organized breast cancer screening...highlighted the very limited information available to women on this screening. And for the information specifically intended for them, we note that this information does not include any mention of the controversy of which it has been the subject for several years, nor of the existence of real uncertainty regarding the benefit/risk ratio, nor of its limits...".

The criticisms on the communication provided by the INCa, fragmented, sometimes contradictory, tendentious, unclear on the over-diagnosis, continue from page 87 to 95.

Two studies published in the British Medical Journal (one Australian, the other by researchers from the Nordic Cochrane Collaboration) listed 17 key points that should be addressed in brochures on breast cancer screening, for a scientific and objective information. (2,3)

We used these 17 scientific criteria to evaluate the INCA booklet on breast cancer screening by mammography and to determine whether, in accordance with the requests of the citizen's consultation, the Institute has met the expectations for improving the quality of information.

For details of these two studies, see Dr. Nicot's article in Voix Médicales:

PART I: Analysis according to the 17 criteria
PART II: Other issues raised

PART I: The 17 key points to assess the quality of the information

These 17 key points are :

    1. Lifetime risk of developing breast cancer.

    2. Lifetime risk of dying from breast cancer.

    3. Survival after breast cancer.

    4. Relative risk reduction.

    5. Absolute risk reduction.

    6. The number of women who need to be screened to avoid death from breast cancer.

    7. Proportion of women who will be recalled.

    8. Proportion of breast cancer detected (sensitivity).

    9. Proportion of women without breast cancer who are screened positive (lack of specificity/false positive).

    10. Proportion of women with a positive test who have cancer (positive predictive value).

    11. Reduction of the relative risk of total mortality.

    12. Carcinoma in situ.

    13. Over-diagnosis.

    14. Over-treatment.

    15. Effect of screening on the number of mastectomies.

    16. Relative risk of radiotherapy, psychological distress in relation to false positives.

    17. Pain during mammography.

These 17 key points were reviewed in the new brochure issued by INCa in order to assess its informative value as objectively as possible.

1. Lifetime risk of developing breast cancer.

The brochure answers this first point: 3 out of 100 women aged 50 will develop breast cancer within 10 years. The different risk factors are detailed on page 4.

2. Lifetime risk of dying from breast cancer.

The question which, indeed, is of most interest to women is: what is the real risk of dying from breast cancer? "We can measure the risk of dying from breast cancer in France, in 2010 this risk was 4.1%...., of which 1.9% was between 50 and 79 years of age". (4)

This data is not present in the booklet of the INCa.

3. Survival after breast cancer

The brochure talks about it and highlights the 99% survival rate for cancer detected "early". But without explaining what this means.

" Survival" is rather a measure of a cancer lifetime

It gives an optical illusion: by anticipating the date of "birth" of the cancer detected during a screening, one has the impression of a longer life after cancer, whereas the lifetime of the person is in no way changed. Let's take a life expectancy for a given woman of 73 years, if this woman is diagnosed with cancer by screening at the age of 67, she will enter the 5-year survival statistics. If the diagnosis is made later, around the age of 72, when a symptom occurs for example, then this same woman will not be included in the survival statistics. Survival at 5 years leads to an illusion of success, whereas the life expectancy of women in France has not changed at all since screening is performed.

4. 5. 11. Relative risk reduction. Absolute risk reduction.

On page 8 it is written: "International studies estimate that these programs prevent between 15% and 21% of breast cancer deaths. "

This is an indication of relative risk only. The editors are ignoring the claim of women citizens to stop being fooled by numbers that do not mean what they seem to say. The 20% fewer deaths does not mean that 20 less women out of 100 will die of breast cancer, if they get screened.

This 20% corresponds only to a relative risk reduction between two comparative groups of women.

In fact, according to a projection made by the Cochrane Collective (6) based on several studies, 4 out of 2,000 women screened over 10 years, die of breast cancer; 5 out of a 2000 women group not screened over the same period of time, will die of breast cancer, the change from 5 to 4 mathematically corresponds to a 20% reduction in mortality, but in absolute terms only one woman's death will be avoided (absolute risk of 0.1% or 0.05%).

Actually, this corresponds to an absolute risk reduction of 0.05% (1 woman in 2000) to 0.1% (1 woman in 1000) at the end of 10 to 25 years of screening, according to the estimates used (American journals, Prescrire magazine, US TaskForce). (5)

This is why the citizens had requested during the citizen consultation a presentation based on real data, and not on percentages that embellish the situation.

6. The number of women needed to be screened to prevent a breast cancer death

We search unsuccessfully for this indication. According to the Cochrane Collaboration synthesis, for example, 2000 women must be screened over 10 years in order to find a benefit of a life saved through screening. (6)

7. Proportion of women who will be recalled.

One of the causes of recalling women is the examination judged "technically insufficient" by the second reader who receives the images validated by the first reader, but which he considers insufficiently well done. This causes additional anxiety for the patients, and of course, additional irradiation, due to the sometimes very formalistic questions of incidence.

The second cause of recall and not the least are false positives, i.e. a positive screening test for a woman who does not present a cancerous lesion (which overlaps with criterion n°9).

8. Proportion of breast cancer detected (sensitivity).

9. Proportion of women without breast cancer who have a positive detection (lack of specificity/false positives).

10. Proportion of women with a positive test who have cancer (positive predictive value).

The brochure announces well in " To know" section on page 11: "The false positive - In most cases, it turns out that the abnormalities discovered are benign and that it is not cancer. This is referred to as a false positive", but without giving the proportion, the criterion is therefore not met.

We provide you with the estimate according to Prescrire magazine, Cochrane and US Task Force: out of 1,000 to 2,000 women screened over a period of 10 to 25 years, depending on the synthesis, between 200 and 1,000 women will receive a false alarm, leading to at least 200 unnecessary biopsies. (5)

This precise data is not included in the brochure.

We recommend that our readers refer to the explanations provided on our site:

12. Carcinoma in situ.

This point is not addressed at all.

In the cancer statistics posted on INCa site, only invasive cancers are considered. However, in situ cancers, which are the main cause of over-diagnosis, are estimated to account for 15 to 20% of breast cancers. They are all the more frequent, as participation in screening is important. Most of the cancers qualified as "early detected" are in situ cancers for which it is known that treatment does not change much the prognosis, since most of them would not have developed.

When a non-fatal disease is treated unnecessarily, it is normal that survival (see criterion 3) is high.

The booklet does not address this issue.

13. Over-diagnosis.

14. Over-treatment.

Over-diagnosis is addressed on page 7, but only briefly.

The problem of over-treatment is not mentioned.

15. The effect of screening on the number of mastectomies.

This issue is not addressed. Large scale international studies (Harding (7)) as well as meta-analyses of the Prescrire review (8, 9 ,10) and the Cochrane Collaboration (6) ) show a significant increase in mastectomies, radiotherapy and chemotherapy since screening, while the detected lesions are more and more smaller in size.

16. The relative risk of radiotherapy, psychological distress in relation to false positives.

This point is not addressed.

17. Pain during mammography.

This point is discussed on page 9.

Let's now do the math: of the 17 key points for informed and objective information, only 5 are addressed in the INCa brochure (no. 1, no. 3 although imperfectly, no. 4 but without explanation, no. 13, no. 17).

PART II: Other points of concern


The INCa booklet mentions the scientific controversy over screening, which it refers to as being based on "few studies and difficult to compare".

According to INCa, the debate is not about whether lives are saved, but about how many lives are saved.

However, since the 2000s, numerous studies have been regularly published in the major independent international journals (New England Journal of Medicine, British Medical Journal, JAMA, Lancet, etc.).

The studies cannot be described as "few" when, on the contrary, they abound.

For example, we will cite only three of the major studies published in recent years: Bleyer Welch, 2012 (11), A. Miller, 2014 (12), Harding, 2015 (7).

The first shows the rise in breast cancer incidence since the introduction of screening without a decrease in the most severe forms. The second shows the absence of significant impact of screening on mortality, revealing identical survival rates regardless of the stage of cancer in two groups of women compared, one group screened and the other not, with a follow-up at 25 years.

Finally, the third shows that a 10% increase in participation in screening leads to a 16% excess of diagnosis without any impact on mortality, but with a surge in less aggressive forms, stability of advanced forms, and a significant increase in the most severe treatments.

It is not clear which studies enable INCa to assert that the debate would not be about saving lives because it is not possible to identify any significant decrease in mortality.

B-The radiation delivered

Concerning X-rays during a mammographic examination, for which the dose required after 50 years would be lower (page 12), the problem is not the low dose theoretically delivered, but the reality of the repetition of doses, no matter how low they are.

Moreover, quite frequently, several incidences per breast are necessary, their dose being added to those of the routine examination.

The real problem, however, is radiation for therapeutic purposes in the case of over-treatment, which is itself a consequence of over-diagnosis by mammography, with real and serious consequences on health (coronary heart disease, radiation-induced cancers of the oesophagus, skin, mediastinum and lung).

C-Natural history of the disease

On page 3, we find :

"In general, the earlier breast cancers are detected, the greater the chances of a cure.

There is confusion between the smallness of the cancer detected and its early detection.

A small cancer is not synonymous with early detection, it can be small and be present for many years without ever manifesting itself. A large lesion is not necessarily late either, it may have developed in a very short period of time, which is often the case with what are called interval cancers. These rapid cancers are often the most aggressive, occurring after a normal mammogram and before the next one scheduled two years later. Screening cannot anticipate them.

The problem is the insufficient knowledge of the natural history of cancer, which the booklet itself admits on page 2, where it says that there are several types of cancer evolution and kinetics. This would justify treating all cancers, according to the booklet (page 7) which threatens that a woman who is not screened regularly, will inevitably have a more advanced cancer, a heavier treatment and a reduced chance of recovery.

"If you develop breast cancer and you have not been screened regularly, the cancer will be diagnosed at a more advanced stage. This will reduce the chances of a cure and have a greater impact on your quality of life. Indeed, heavy treatment, sometimes dangerous, and its consequences are significantly greater in the presence of cancer diagnosed at an advanced stage".

There are two problems with this statement. It is needlessly alarmist and is not based on any studies, the real question being "What are the benefits of not getting tested? "(The brochure asking this one, page 7: "What are the risks of not being screened for breast cancer?"). The assertion that the burden of treatment is reduced thanks to "early" detection is contradicted by the Harding study (7) in the United States, by the meta-analyses of Cochrane (6) and the Prescrire Review (8 9 10), which report an increase in chemo- and radiotherapy, with consequences in the form of thrombo-embolic, cardiac and radiation-induced neoplasia complications not even mentioned in the booklet. These studies and meta-analyses also objectivize the increase in mastectomies, which logically should drastically decrease since the lesions discovered are smaller in size. Hence the second subsequent question: "What is the situation in France with regard to the promised decrease in total mastectomies, and what is the status of the evaluation?"


Overdiagnosis is quickly addressed in the booklet (page 7), we will not argue about its extent, as the latest studies put forward the figure of 50%. However, justifying the treatment of all cancers with the same aggressiveness, because we do not know how to apprehend, it is a rather lapidary approach to the problem.

The third source indicated by INCa at the bottom of the document refers to the "Handbooks of Cancer Prevention", which is presented here:

The CIRC (International Agency for Research on Cancer, Lyon) itself (from about 7:54 minutes) opts for a red coding ('missing or incomplete data') of over-diagnosis in the context of breast cancer screening.


The information quality score is therefore 5/17, i.e. 6/20.

Click here to enlarge:

In view of all these elements, this new INCa brochure does not seem to meet the expectations of the citizen consultation.

P.S. In the meantime, at the beginning of April 2018, the INCa has added references at the bottom of the document, but the sources added are only reports or legislative texts or sources from the INCa itself...


Slaytor EK, Ward JE How risks of breast cancer and the benefits of screening are communicated to women: analysis of 58 pamphlets.

Jørgensen KJ, Gøtzsche PC. Presentation on websites of possible benefits and harms from screening for breast cancer: cross sectional study. 2004;328:148. Sur :

8 Dépistage des cancers du sein par mammographie Deuxième partie Comparaisons non randomisées : résultats voisins de ceux des essais randomisés. Rev Prescrire. 2014 Nov;34(373):842–6.

9 Dépistage des cancers du sein par mammographie Première partie Essais randomisés : diminution de la mortalité par cancer du sein d’ampleur incertaine, au mieux modeste. Rev Prescrire. 2014 Nov;34(373):837–41.

10 Dépistage des cancers du sein par mammographies Troisième partie Diagnostics par excès : effets indésirables insidieux du dépistage. Rev Prescrire. 35(376):111–8.



Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.

Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.

David versus Goliath, which one better informs women in France, Cancer Rose or National Institute of Cancer (INCa) ?

January 2, 2020, Marc Gourmelon, MD, Cécile Bour, MD

In 2016, the citizen and scientific consultation on organized breast cancer screening conducted in France, called to consider a halt of screening [1].

Moreover, the information posted on the INCa (National Institute of Cancer in France) website was described as "fragmented, difficult to identify, sometimes contradictory, overdiagnosis approached in an unclear manner".

In April 2018, our collective expressed its concern about the persistent lack of information in the INCa documents [2] [3], which again and again minimizes overdiagnosis and is silent on overtreatment.

We had expressed our concerns in a response letter published in CMAJ (Canadian Medical Association Journal) under the title  « Principles for Screening: Too few concerns for informed consent and shared decision making ? » [4] [5]

The principle of informed choice, promotion of autonomy and protection of the rights for screening participants is simple to implement, with pictograms [6] using absolute numbers. These pictograms use a consistent denominator, such as the benefits and harms associated with 1,000 screenings, based on evidence-based data.

Belgium has implemented this since 2013 for breast cancer screening.

On the other hand, French National Cancer Institute (INCa), like other French health agencies, is acting unethically, refusing to provide such information despite requests expressed during citizen and scientific consultation in 2016 and even a more recent request in the form of an open letter supported by the leading French consumer non-governmental organization UFCQC (UFC Que choisir). [7]

The inclusion breast cancer screening as an indicator in the ROSP (Remuneration of doctors for Public Health Objectives) french system was denounced during 2016 citizens' consultation [8].

With the legalization of an unbalanced information, as is proposed by INCa, this is absolutely outrageous.

The general practitioner is thus in a conflict of interest and he is still not trained on how to provide informed consent to the patient during the consultation.

A study in the Journal of Epidemiology and Public Health

A study published in the Journal of Epidemiology and Public Health [9] in December 2019, acknowledges that the information due to women and delivered by INCa it is still not up to standard.

The ostrich policy of the French authorities feeds heavy suspicions of interest links with "pro-detection" lobbies.

The current situation is unacceptable for women and their dignity in health.

This study is carried out in the perspective of creating a French decision aid tool in the context of organized breast cancer screening, in collaboration with INCa.

The study: Information about organized breast cancer screening. Do INCa and Cancer Rose meet the criteria for decision aid tools?

 1. Background

Controversies around organized breast cancer screening increase women's need for information. In France, the National Institute of cancer (INCa) is in charge of providing this information. Its mission is to "promote the appropriation of knowledge and best practices by patients, users of the healthcare system, the general population, healthcare professionals and researchers".

Cancer Rose (CR) site produces complmentary information, considering that the INCa's information is incomplete.

The objective of this study was to assess whether INCa and CR sites meet the IPDAS (International Patient Decision Aid Standards) [10] [11] criteria for decision aid tools.

 2. Method

A comparison of available tools is performed.

  • For INCa, the video of the last campaign launched between September 23 and October 14, 2018, the press kit, the web platform, the information booklet and the information leaflet have been selected for analysis.
  •  For Cancer Rose (CR), the different sections of the home page are: the information videos, the downloadable brochure and leaflet, the presentation, the studies section and the posters.

The information booklet and press kit for INCa and the studies section of the CR website were the documents meeting most IPDAS criteria [12].

The document meeting fewer criteria were the video for INCa and the information leaflet for Cancer Rose (a synthesis produced, after the exhaustive brochure, simply as a document that could be delivered to the patient at the end of the information consultation with the general practitioner).

Videos are more accessible tools for people with lower levels of so-called health literacy [13].

IPDAS criteria were used and an average was calculated using a software program.

3. Results

They are summarized into percentages in table 2, click on the image to enlarge:

It can be noticed that for all criteria Cancer Rose scores significantly better than INCa.

The data in this table are listed in the text, for example :

For INCa, the validated data on which the information was based were absent in the video and leaflet. The press kit contained references in the text or annotated at the bottom of the page. The two documents addressing the overall risks of organized screening, were the web platform and the information booklet. The campaign video addressed over-diagnosis and over-treatment without citing them: "Screening: zero risk or not? It happens sometimes that a cancer which wouldn't have progressed at all or only slightly, will be diagnosed and treated, the zero risk doesn't exist". Screening at an early stage was emphasized without describing the natural history of the disease. The advanced time to diagnosis, an IPDAS criterion, was not explained. »

This finding is serious and presented in a factual manner.

For Cancer Rose the authors write this:

"For Cancer Rose, apart from pain, the risks inherent to screening were all described (false positives, over-diagnosis and over-treatment in all the documents; interval cancers, false negatives, radio-induced cancers and anxiety in the videos). When describing the benefits, the documents described the absence of effect on overall mortality. The benefits of "a woman who avoids death from breast cancer and whose life may be somewhat prolonged" were immediately counterbalanced in the video discourse by "a woman who will succumb to a serious effect of the treatment, a treatment she would not have needed in the absence of screening".

The natural history of the different types of breast cancer was described. The data on which this information was based, was documented by references."

There is therefore a more than notable discrepancy between the information provided by INCa and that of the Cancer Rose collective.

Here is an illustration of these results in diagrams, with the kind permission to reproduce them from Jérémy Anso, author of these tables and editor of the site "Hard to swallow", Doctor of Science; see his article on the subject.

  • Present criteria must be the most numerous
  • Incomplete criteria, must be the least numerous
  • Absent criteria must be the least numerous as well.

Click to enlarge

4. Discussion


  • « The documents that best meet the IPDAS criteria are the information booklet and press kit for INCa and the Studies section for Cancer Rose.»
    However, without pointing out the disastrous figures of INCa compared to the higher scores obtained by Cancer Rose, this flagrant imbalance would have deserved to be further highlighted.
  • « The INCa video scored 6.3% in terms of content versus 50% for the Cancer Rose video. »

"The video (from Cancer Rose, editor's note) appeared to the researchers as being more oriented towards the disadvantages/risks than the benefits/advantages. »

Thus, while the Cancer Rose video gets 50% and the INCa video gets 6.3%, the only criticism expressed is the one of a committed video from Cancer Rose, but to be fair, a comment on the insufficiency of INCa's video is missing.

The discussion is limited to this observation and then presents a paragraph praising the Canadian colleagues and their video support [14].


This can be summarized in the last sentence of the study :

« This study is carried out in the perspective of creating a French decision aid tool in the context of organized breast cancer screening, in collaboration with INCa. »


This study demonstrates by the published figures, in the same way as we have pointed out in the past, that INCa is not fulfilling its function and its mission of information, as illustrates the comment comparing with our fellows in Canada.

"The Canadian Public Health Group on Preventive Health Care (supported by the Public Health Agency of Canada) provides women with a three-page general information document and one page documents by age (50-59, 60-69, 69-74). A 12-minute video is also available for viewing.

All of these tools encourage women to discuss screening with their family doctor. The video is very far from that of INCa in both form and content. "

This study even shows that INCa is doing "indigent" work, as evidenced by the 6.3% score obtained on its video. The authors, although transparent and factual in their results, hardly make the slightest criticism towards INCa. They do, however, acknowledge our work in the paragraph presenting the results.


According to the authors,the informational documents proposed by INCa require a high level of health literacy (or education, or alphabetization, see ref 12) from the public. On the other hand, videos are known as information tools that are more suitable for people with low health literacy levels.

At any moment INCa does not reach the average for the criteria expected to be present, reaching at best only 37.5%, which is very insufficient, where the Cancer Rose collective, with its own resources, which are those of the members and a few donations, reaches 62.5%.

With respect to the absent criteria, here again INCa is unbeatable with a maximum of 56.3% where Cancer Rose reaches only 25% of absent criteria.

Finally for incomplete criteria, INCa is still well ahead of us in all publications, reaching even 50% in 2 cases.

We are very satisfied that a review of epidemiology finally points out this problem of persistent institutional misinformation with regard to women.

We regret that this fact is mentioned only in the text of the document.

Unfortunately many readers often stop at reading the abstract.

It is unfortunate that there is no explicit questioning of the work of INCa, while this unethical and scandalous situation has persisted for many years already.

The mission of the French National Cancer Institute (INCa) is to "promote the appropriation of knowledge and best practices by patients, users of the healthcare system, the general population, healthcare professionals and researchers. As part of this mission, this agency provides tools and regularly conducts information campaigns", with a 2019 budget for prevention and screening of 6.4 million euros [15].

We would like that this public budget to be used for an objective information of women and not for the marketing of breast cancer screening by mammography.

For our part, of course, we admit the criticisms that have been made, of which we were already aware. The missing criteria and the scattered nature of our information will be corrected in a MOOC (Massiv Online Open Course) which is currently under construction and scheduled to be online in 2020. This tool, by its pedagogical and interactive nature, will compensate for these imperfections and will complete the information that the doctor and the patient need to make an informed decision in a collaborative exchange.

It is true that our information, in an assumed way, denounces more the risks than the benefit of screening, for two reasons:

  • No authority, institution or information site denounce or inform women about the harm of screening in France.
  • No recent studies since the 2000s have been able to demonstrate the proven benefits of screening, while publications alerting women to the risks are multiplying, including the growing over-diagnosis, a real public health issue.





[4]  consentement-eclaire/







[11] ; criteria listed at the bottom of the page

[12] International Patient Decision Aid Standards :


[14] Canadian Task Force on Preventive Health Care. Cancer du sein (mise à jour). Calgary (Alberta) Canada: Screening tool involving 1000 people; 2018, . Available on mise-a-jour/outil-de-depistage-aupres-de-1000-personnes/?lang=fr


Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.

Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.

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: , 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.



[2] See 10th point from the top, in the article



[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



Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.

Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.

Susan Bewley’s opinion: after the covid-19 pandemic, things should never be the same again in the screening world

15 April 2020

Synthesis of the article published in the BMJ blog of Pr.Susan Bewley

by Cécile Bour, MD

Susan Bewley is Professor Emeritus of Obstetrics and Women's Health at King's College London and Chair of Healthwatch (Collective for Science and Integrity in Medicine). She is highly critical of breast cancer screening and has published a multi-faceted analysis of the ongoing UK trial for extending screening.

On her blog BMJ she writes about the suspension of organised breast cancer screening, which was in force during the covid-19 pandemic in several countries.

For Pr. Bewley, the suspension of systematic breast cancer screening during covid-19 offers an opportunity to take into account the criticisms made of these mass screening programs, these reproaches and controversies that have existed for three decades now, insufficiently relayed in France, particularly during Pink October, a national campaign that absolutely annihilates any contradiction in the public space.

Priority to patients

The NHS (National Health Service) has given priority to the needs of the ill and vulnerable through this suspension, explains Susan Bewley.

In the middle of a global pandemic, writes Susan Bewley, we can no longer afford the politically popular luxury of needlessly making the general public unwell through anxiety and overdiagnosis. Routine mammographic breast cancer screening and the AgeX clinical trial—which was designed to generate evidence about extending screening to women even outside the current 50-70 age group—have stopped (Editor’s note : the links are those proposed in the original text).

Although it was not obvious from national websites, or in the media, letters, texts, and phone calls have been informing women since mid March that all routine screening appointments are cancelled. Services have since been suspended in parts of Canada, Italy, Scotland, and Australia (Editor’s note, also in Belgium, in addition to above mentioned countries).


Mobile mammography screening vans are parked and silent. Staff are clearing the decks and helping those women already in the system after a positive screen. Once this is done, staff will be redeployed for the Herculean task of constraining coronavirus or keeping other parts of the NHS afloat. 

No safety risk posed to the public by stopping screening

This recognition that breast cancer screening is non-urgent must be applauded, and the general public reassured. It suggests that stopping screening poses little overall danger (and even, by some people’s interpretations, possibly none whatsoever) to women. Anyone with a lump, skin dimpling, or other symptoms who might have an active cancer, should be encouraged to call their GP as usual, as the urgent pathways remain open.

In the UK,  regional breast screening services are telling women that screening is “on hold.” The intention appears to be to resume screening when, and if, the coronavirus pandemic ends. But this is a golden opportunity for the National Screening Committee (NSC) to pause, reconsider criticisms of the screening programme, and evaluate whether to modify a programme that does not impress clinically or cost effectively.

Susan Bewley explains that breast cancer treatments have been revolutionised since screening was introduced in 1987, thus long ago traversing the “sweet spot” between pointlessness, through usefulness.

Screening can be useless at first, when a disease is discovered without effective treatments.

Second, it can be useful when it meets Wilson and Jungner's criteria and identifies early patients who will do better with available treatment than if they had waited until symptomatic.

But it becomes pointlessness again when good treatments for symptomatic cancer are available, as they are now, and at the same time the balance of benefit/risk in mammographic screening tilts towards its causing excessive harm to the well.

In other words :  the more effective the therapies currently available, the more pointless systematic screening becomes, especially if it causes more disadvantages than benefits.

The good news story—that treatment for symptomatic breast cancer nowadays is excellent—has been drowned out by a thirst for “more” searching and resoothing of anxiety. Going “cold-turkey” on screening may be an unexpected, but welcome, way to wean the public off its dependence on searching for diseases that might never have harmed anyone.  

The termination of certain screening programs already mentioned

Even before covid-19, Mike Richards, the UK government’s chief inspector of hospitals in the Care Quality Commission, had already called for a halt to PSA prostate cancer screening. More, even different, screening is not an acceptable answer to the difficult question for urologists of why prostate cancer death rates have risen during an era of opportunistic PSA screening with ever increasingly numbered multi-needle biopsies used for diagnosis and surveillance. (Editor's note: this screening does not figure in the official French recommendations).

This moment can be seized, says Pr. Bewley, to discuss popular myths about screening. There is no evidence that “health checks” achieve anything in terms of long term outcomes, barring diverting NHS resources away from looking after those who are actually ill.

Reducing smoking and alcohol consumption and lowering obesity would do a lot more for the population’s health. 

Read also: "It's time to stop early detection of cancer".

Cancer industry and media hype

And :

Author’s conclusion

Susan Bewley concludes : If mammography screening does return post pandemic, it must be reinstituted without any alarmist messaging, pre-booked appointments, reminders and disclaimers, or financial targets for GPs to encourage attendance. We need better processes and an “informed consent” leaflet that makes it entirely clear that it’s a choice—and not necessarily a bad one—to decline. 

Editor’s note 

We can only agree with all these considerations expressed by Pr Bewley for the United Kingdom and make similar requests for France. Professor Autier's synthesis work in 2018 already supported what Professor Susan Bewley is stating today, in favor of the suspension of the breast cancer screening program in the UK and other countries.

  • In populations where mammography has had a high penetration, screening mammography has had no or only a limited influence on the burden of advanced breast cancer, and no influence at all on the burden of meta- static breast cancers at diagnosis.
  • Over-diagnosis is a source of considerable harm to women who undergo screening mammography. It is no longer acceptable nowadays to minimize the burden of it, nor its consequences, the over-treatments.
  • If screening mammography has some influence on breast cancer mortality, this influence is fading away with progress in patient care management. This means that the more effective the patient management, the less useful screening is, especially if the risks outweigh the benefits.
  • Decision-makers implementing national cancer action plans must be aware of the serious gaps in the data presented to them as indisputable, they must take greater account of data from independent international scientific studies implicating mammography screening, and alerting women to the risk of unnecessary disease experience.
  • The information given to women on the risks of screening is insufficient , a notion that the 2016 citizens' consultation on screening conducted in France had already pointed out.

The covid19 current context has shown us the importance of conducting sound clinical trials and of the EBM, evidence-based medicine. Proper data analysis is essential and studies strongly contesting the benefits of mammography screening should no longer be systematically and deliberately hidden, ignored by decision-makers and concealed from women.

We therefore ask French decision-makers to reconsider the relevance of the mammography screening program in France, to take into account the demands of citizen consultation, to work for the creation of neutral and objective information tools and decision-making aids for women, and to suspend the costly, disinforming and anxiety-provoking Pink October incentive campaigns.

This program must be taken out of the ROSP system (Remuneration on Public Health Objectives for french doctors), suspend the system of scheduled convocations and guilt-triggering reminders for women when they do not attend appointments.This screening should be presented as a choice, with the option of refusal, and not as a requirement.

The woman must be confident, free of anxiety, free of guilt, and consider mammography screening as an optional possibility, without proven harm or loss of chance when she does not adhere to it.

We call on authorities in power to use this time of screening suspension to rethink the system, to stop the program as requested by citizens, and to undertake an in-depth reflection before restarting the program.

Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.

Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.

Cost of extending the NHS breast screening age range in England

10 April 2019

Susan Bewley emeritus professor of obstetrics and women’s health, Mitzi Blennerhassett medical writer , Mandy Payne freelance editor  [i]

Context and concerns

AgeX is the acronym for the UK government inspired and funded, cluster randomised controlled trial of extending the NHS breast cancer screening age range in England. The trial aims to assess the risks and benefits of extending mammography screening for breast cancer outside the current 50-70 year age range by offering one extra mammogram to women between the ages of 47 and 49 and up to three to those over 70. Announced as “likely to be the largest randomised controlled trial ever undertaken in the world,”during 2010-16 AgeX randomised three million women into the extended age groups and screened one million. Concerns have been raised by Susan Bewley of the Health Watch observer group over the adequacy of the benefit-risk information provided to the women included in the study. According to Health Watch observers, there is a risk of harm through overtreatment by surgery and other risks to participants. Women learn of their inclusion in research through a letter with a screening appointment that has already been scheduled. There is a possible surgical over-treatment risk for women aged 47-49 years, and the authors question whether continued breast cancer screening is still appropriate, as the accumulation of evidence challenges its assumed benefits.

Breast screening policy and controversy in the UK

Mammography screening aims to find breast cancer before a lump is palpable, giving the opportunity to start treatment earlier. The current UK screening programme, started in 1988, offers triennial mammography to all women aged 50-70. Of the 2.85 million women invited in 2015-16, 75% attended. In common with programmes worldwide, the screening age range was defined based on evidence of when mammography is most effective at detecting tumours in the breast.

The programme has been estimated to prevent 1300 deaths from breast cancer each year. But evidence suggests improvements in breast cancer survival rate since the introduction of mass screening probably result from concurrent improvements in the adjuvant hormonal and chemotherapy used to treat breast cancer.

There is also evidence that screening does not reduce number of tumours reaching late stage and that it results in substantial overdiagnosis, with consequent radiotherapy, lumpectomies, and mastectomies.

Age extension trial in the UK (XAge Trial)

In 2007 the Labour government’s cancer reform strategy recognised late diagnosis as a factor contributing to poor cancer survival rates in the UK. The government’s proposals included extending the age range for breast cancer screening. By 2012, it promised, women would receive nine screens between the ages of 47 and 73, with a guaranteed first mammogram before age 50. Limited capacity forced a decision to phase in the proposed extension. According to the organisers, randomising would, “provide a unique opportunity to obtain unbiased evidence on the net effects of the new policy,” although the extension would “proceed regardless of whether the study goes ahead or not” . The Nationwide Randomised Trial of Extending the NHS Breast Screening Age Range was started by Public Health England [ii]  in June 2009 with an original expected participation of 1.1 million women over 13 years. The cluster design randomises batches of 1000 screening invitations normally sent to women aged 50-70 to be extended to comprise those aged either 47-70 or 50-73. Half of all women aged 47-49 and half of all women aged 71-73 are invited to screening, while all women aged 50-70 are invited to screening as usual. The trial compares breast cancer incidence and mortality between screened and unscreened participants in the studied population. In 2016, the Age Extension trial was renamed as AgeX. The recruitment target was raised to “at least six million.”

Shaky foundation

It is laudable to test government policy before it is rolled out. But the design of this trial does not meet standards for generating evidence that would be robust enough to inform future policy. It is good practice for scientific experiments to be preceded by a systematic review of the evidence to avoid wasteful research and repeating unnecessary harms.

Emerging concerns about the lack of efficacy and potential harms of screening were mentioned briefly as “so-called overdiagnosis” in AgeX’s seven page original trial protocol.The trial’s sponsor (University of Oxford), when asked whether the protocol had been subjected to independent scientific peer review, told authors only that it had been reviewed by the Department of Health advisory committee on breast cancer screening.


AgeX’s primary outcome measure is death from breast cancer. Total cancer deaths are not recorded, and overall mortality was added in 2016 as a subsidiary outcome but will not be included in the primary analysis. Measuring breast cancer mortality alone excludes deaths resulting from side effects of treatment or cancers caused by mammography. This is relevant as suitably randomised trials of breast cancer screening find no effect on total cancer mortality.

Potential for bias

Estimates of breast cancer mortality in screening are particularly vulnerable to bias because large numbers need to be screened to see the small effect and there is a long lead time for outcomes to become evident. Bias in suboptimally randomised trials of breast cancer screening may have resulted in benefit being overestimated.

During the past decade, AgeX increased its planned duration and sample size, study outcomes were changed, and a proposal for statistical analysis was retrospectively appended.These factors, coupled with the protocol’s stated plan to continue the trial beyond a “fixed, predetermined sample size” until “clear answers emerge” all increase the likelihood of a biased assessment. (Editor’s note : Protocols are normally never changed afterwards).

Lack of explicit, fully informed consent

According to good clinical practice, trial participants must be told that they are in a trial and given details of all known benefits and harms in language they can understand.

When the age extension trial was first conceived, screening was already known to be associated with harms, but these were not believed to outweigh the benefits of early detection. Harms range from false positive results with associated psychological distress to overdiagnosis—with abnormalities that would not have harmed the woman in her lifetime being found, leading to potentially dangerous, painful, and disfiguring treatment.

Early AgeX trial documentation refers to “so-called overdiagnosis”. But the team’s assumption that overdiagnosis was unimportant was challenged in 2012 when the Independent UK Panel on Breast Cancer Screening, chaired by Michael Marmot [iii],, published a detailed review of the evidence. The report recognised and quantified overdiagnosis—for every breast cancer death averted, three “cancers” that would never have troubled women during their lifetimes would be found and treated.

The physical and psychological harms resulting from such treatment are substantial. Yet in 2016, when AgeX’s recruitment target was raised to six million, this increase—with corresponding potential for harm—was not referred to or justified in an accompanying application for ethics approval.

With Marmot’s publication, the confirmation that predicted benefits were accompanied by appreciable and quantifiable risks to participants should have triggered a reflective review of the research question and study design.

Crucially, this should have included whether participants should now be given full risk-benefit information and the opportunity for explicit, fully informed consent.

In AgeX, an early decision had been taken to forgo such consent. The original protocol said, “100% coverage is essential for the scientific validity of the study, and excluding participants for whom we cannot get consent could seriously bias the results ... consent is implied for those who attend for screening.”

Women in the invited clusters learn of their inclusion through a letter with a prebooked screening appointment, general mammography advisory notes with the sign-off, “Remember ... screening saves lives,” a brief leaflet describing the trial (but not the potential risks of participation), and the standard pink breast cancer screening booklet  written for women aged 50-70.  The trial participation leaflet was expanded in 2014 from one to four pages but description of risks is limited to »being asked to return for more tests.

Trial participants’ understanding that they are voluntary participants in research rather than routine NHS screening, and at risk of unnecessary surgery and other harms, is never explicitly checked.

Cluster randomised trials can be run without seeking individual participants’ explicit, fully informed consent. As participants are randomised in large groups to invitation batches for a local breast screening unit, obtaining prior consent from individuals in the cluster is normally unfeasible. International guidance on the conduct of such cluster randomised trials states that the requirement for consent may be waived when the study intervention(s) poses no more than minimal risk.

Authors believe that the level of risk to participants in AgeX necessitates a trial design that enables fully informed consent.

The public overestimates the benefits and has a poor sense of the harms of screening tests in genera so researchers have a responsibility to dispel misconceptions. Physicians themselves often do not fully understand the benefit:harm ratios and consequently are poorly equipped to counsel their patients.

Well designed decision aids could support doctors and their patients, but AgeX does not refer to any. Members of HealthWatch formulated a complaint to AgeX’s principal investigator about the paucity of participant information, which  was rebutted by saying the approach had been approved by ethics committee. A similar complaint to the ethics committee was in turn responded to by deferring to the principal investigator’s assurances.

Effects of extending age range

Information about the balance of risks and harms may be particularly relevant for women over 70. The risk of developing breast cancer increases with age. In 2014 a prospective nationwide population based study of breast cancer screening in women aged 69-75 in the Netherlands reported a steep rise in the numbers of “early” cancers in the screened group, without significantly reducing numbers of advanced cancer cases. Effectively, screening was leading to many more older women “living with cancer,” with little effect on actual deaths from breast cancer. [iv]

Although such observational evidence may not be as powerful as that from a randomised trial, a study of this size should have flashed a warning light. Instead, in 2016 AgeX was amended to further extend the programme for older women, who would now be invited triennially at ages 71-76, or 71-79 subject to funding. Older women are less able to tolerate surgery than younger women because of increased likelihood of comorbidities, so overdiagnosis and overtreatment have a greater effect on their quality of life and physical function. This information should be made available to women considering screening.

We cannot yet know the full effects—good and bad—of extending the age range for breast cancer screening, but a study from Devon, southwest England, sheds light on one aspect: the numbers of extra surgical procedures in the younger women screened.

In Devon, all women aged 47-49 are invited to screening because Inhealth, the region’s breast cancer screening provider, is not permitted to take part in clinical trials. The results from the first year show that 4250 (76%) of the 5624 invited women in this age group were screened, resulting in 125 surgical outpatient consultations and 53 operations. This gives an indication of the short term extra surgical workload from screening women under 50, although as the study authors point out, estimating the longer term surgical and financial effect is more complex.

Women participating in the AgeX trial must be given the opportunity to balance the possibility of lesions being detected earlier (with more opportunity for breast conserving surgery) against real risks of harm. Extrapolating the Devon figures to all women in England screened before age 50 over the duration of AgeX, we estimate that several thousand women would need surgery. Given what we know about overdiagnosis in breast cancer screening from sources such as the Independent UK Panel on Breast Cancer screening , we know that a substantial proportion of this surgery will be unnecessary. The full financial and human costs of AgeX will also include extra general practitioner visits and physical and psychological harms from diagnoses of cancer that otherwise would not have caused problems during the women’s lifetime. The trauma of living with cancer can be lifelong, including lasting effects of surgery or other treatments, fear of recurrence, and loss of self esteem and body confidence. Research shows that when women are fully informed of the risks and benefits of regular screening, fewer opt to be screened.

Despite pressures on NHS budgets, AgeX increases the workload for the already stretched NHS breast screening programme by 14%. The resultingextra treatment also creates a considerable burden on the NHS.

Author’s conclusion

The balance of benefits and harms from breast cancer screening remains contested. Three years after AgeX began, an architect of the NHS breast cancer screening programmes (Pr Michaël Baum) argued that deaths after treatment of screen diagnosed breast cancer may exceed those from breast cancer in an unscreened population (

In 2014, the Swiss medical board advised its government to stop recommending mammography screening.

 In 2016 an open letter from French scientists [v] who had conducted a consultation into France’s breast cancer screening for their ministry for health called for a halt to breast cancer screening for low risk women under 50, and an end or thorough review of the programme for women over 50.

People must be given sufficient information to decide whether they wish to participate in research, particularly when the risks are unclear. We recommend the National Screening Committee uses high quality fact boxes and icon arrays20 to support patient consent in AgeX and all screening programmes. We call on the investigators and verifiers of any data resulting from AgeX to use all-cause death as the primary outcome. An independent inquiry into the scientific quality, governance arrangements, and ethical issues arising from the trial would inform future high standards for the design and conduct of government run trials.

On the Health Watch website

Observers, including Susan Bewley, say :

Thousands of unnecessary mastectomies could be the result of encouraging women to participate in the government's AgeX study. 

The study, announced as "the largest randomized controlled trial in history," has already invited more than a million women to undergo breast cancer mammography screening without first making sure they are aware that the test could do them as much harm as good.

Comment by Cancer Rose:

Even if the design of trials is based on randomized groups, women should be informed through flyers, posters, press, radio, television, social networks, etc. In this era of communication, there is no reason why women's right of access to information should be limited by so-called scientific necessities. Indeed, a lack of transparency and information given to the public is quite often linked to bad science.

The same could be said of the MyPeBS trial [vi]: the problems are similar, in the low-risk screening group, mammograms will start at age 40, instead of age 45 or 50 in the usual screening group. Women at moderate risk will have more mammograms than women in the usual screening group. Some women over 50 will have fewer mammograms and some will have more.

Financial costs will be increased and, more importantly, there is an increased risk of over-detection for women. For which scientific result? We already know the result. The design of this non-inferiority trial, with a 25% threshold, means that if the new screening results in 25% more advanced breast cancers, the new screening will nevertheless be considered "not inferior" to the usual screening. Even if the new screening has no effect at all on the incidence of advanced breast cancer and mortality, it will be considered equivalent to the usual screening.

Is it a simple coincidence that in MyPeBS, as in AgeX, information to participants is minimal? In the MyPEBS leaflet given to women, over-diagnosis is greatly minimized and over-treatment, a tangible consequence for women, is not mentioned at all.

Bad information given to patients is also, in the Mypebs trial, related to bad science.


"Rapid response" published in the BMJ

To download below, BMJ2019-364-I1293



[ii]  an executive agency of the U.K. Department of Health and Social Affairs, resulting from the reorganization of the National Health Service (NHS) in England, assuming the role of a health protection agency

[iii] Independent UK Panel on Breast Cancer Screening. The benefits and harms of breast cancer screening: an independent review. Lancet 2012;380:1778-86. 10.1016/S0140-6736(12)61611-0 23117178


See also our article :

[v] Organized screening of breast cancers by mammography: to evolve. Letter to the Minister of Health. Prescrire 2016 Oct 14.


The issues of My PEBS, for our english speaking readers

Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.

Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.

The largest clinical trial in Great Britain on breast cancer screening was halted

Summary by C. Bour, MD

27 August 2020

A major UK breast cancer screening trial called AgeX [1], was halted, more exactly inclusion and randomization of new participants will not resume.
Age X is the acronym of the trial founded by British Gouvernment: it is a controlled randomized trial set up to expand the age bracket determined by NHS (National Health Service) for the breast cancer screening in UK.

The trial investigates the incidence and mortality from breast cancer in different groups and aims to evaluate the risks and benefits of expanding mammography screening for breast cancer beyond the current age range of 50 to 70 years by providing an additional mammogram to women aged 47 to 49 and up to 73 years of age. Announced as "probably the largest randomized controlled randomized trial ever performed in the world," AgeX has randomized 4.4 million women to date in the expanded age groups.
Normally, the goal was to recruit a total of 6 million women in the trial in order to ensure statistical significance and draw conclusions.

This trial had generated a strong scientific controversy on both methodological and ethical arguments when it was set up in 2009, as the women included in the trial were unaware that they were part of it.

The contesting was brilliantly led by the HealthWatch UK site under the chairmanship of Professor Susan Bewley, but also by medical author Mitzi Blennerhassett and independent scientific editor Mandy Payne.[2] [3]

Here we have summarized the entire issue [4], the authors pointing first and foremost to the omission of the informed consent of participating women.

They also denounced the fact that screening does not demonstrate sufficient evidence of effectiveness, but instead, it can be harmful for women who are not fully aware of all these risks, and that the number of mastectomies could increase with the inclusion of more women, which were also uninformed.

Finally, to make sure of the informed consent of women in the AgeX trial as well as in all screening programs, Susan Bewley, Mandy Payne and Mitzi Blennerhassett requested the National Screening Committee to use high-quality text boxes and charts with visual pictograms.
They asked investigators and auditors of all data resulted from AgeX trial, to use the rate of death for “all-cause” as main result. Then finally, they called for an independent investigation of the scientific quality, governance mechanisms and ethical issues arising from this trial in order to identify future high quality standards for the design and execution of future government-sponsored trials.

Discontinuation of the trial

The trial was halted alongside other screening services to allow the NHS to cope with covid-19 [5].
The researchers have announced that randomization will not resume.
However, they said that follow-up by electronic linkage to routine government records will continue “throughout the 2020s and beyond.”
The AgeX website [1] now says, “Following the suspension of routine breast screening throughout the UK in March 2020 due to COVID, and the substantial and prolonged overload on breast screening services to be expected when screening restarts, the AgeX investigators decided in May 2020 that further randomisation into AgeX should cease permanently.”
The trial’s team said : “Although the intent had been to continue until about 6 million had been recruited, 4.4 million will, with sufficiently long-term follow-up, suffice”

The contesting continues, an inquiry is requested

Commenting on the trial, M.Blennerhassett said, “Having sat on a local research ethics committee, I was shocked that this trial had been approved. When I raised concerns my questions were not answered. I was simply referred to the NHS Breast Screening Programme website which, at that time, had no information regarding the trial.”
Susan Bewley told The BMJ, “Although covid will be credited with ending AgeX, this trial would not have stopped prematurely with no fanfare were it actually answering a necessary research question that had been through proper channels of peer review and funding.
“This largest randomised controlled trial in history has been criticised for having no statistical plan or oversight at onset, and repeatedly changing protocol, numbers, and endpoints. Four million women have already taken part in this unethical human experiment, without having had their understanding checked and giving their explicit informed consent.”
Susan Bewley has called for an independent inquiry “to learn the lessons of this government funded research, sponsored by the University of Oxford, and approved by the Human Research Authority that rode roughshod over women’s rights for a decade … We need to ask the question: who approved this, and how much did it cost?”


[3] Bewley S, Blennerhassett M, Payne M. Cost of extending the NHS breast screening age range in England. BMJ 2019;365:l1293. doi: 10.1136/bmj.l1293 pmid: 30971394
[5] National Health Service

Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.

Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.

International reactions to attempts to cover up screening failure in a publication

24 August 2020 by Cancer Rose

We have previously reported on a publication by Stephen Duffy and al. about the final results of the UK Age Trial on breast cancer screening by mammography [1].
This is the "nth" publication by this author, which attempts to show the benefits of screening mammography for women, even at an early age, in this case from the age of 40.
We explained that, contrary to the result that Prof. Duffy is victoriously brandishing, the most important statement of his study was :
"After more than 10 years of follow-up, no significant difference in breast cancer mortality was observed in the intervention group compared with the control group, with 126 deaths versus 255 deaths occurring in this period (0-98 [0-79-1-22]; p=0-86). Overall, there was no significant reduction in breast cancer mortality in the intervention group compared with the control group, with 209 deaths in the intervention group versus 474 deaths in the control group by the end of follow-up (0-88 [0-74-1-03]; p=0-13). »

Therefore, no benefit can be expected from screening.

But what does the international scientific community think of this study?

1) Position paper by Professor Anthony MILLER [2], professor at the University of Toronto [3].

Professor Miller is a leading expert in breast cancer screening since many years, as evidenced by his publications. [4] [5]
For this scientist, the absence of a control group without screening in the study is critical for drawing any conclusions about the interest and possible benefit of screening.
This point is essential, because the omission of a control group without any screening is a major shortcoming that we highlighted in another ongoing trial on screening, namely the MyPeBS study [6], a European trial that aims to compare a personalized screening strategy to the standard screening in 4 European countries and Israel.

Again, the use of a control group "without any screening" was carefully omitted, which was the only way to know whether or not screening would be beneficial compared to women who had never been screened.

While no conclusions can be drawn from a medical intervention without a control group which is not affected by the process being tested, Duffy and al. nevertheless assert :
"There was a substantial and significant reduction in breast cancer mortality, of the order of 25%, associated with the invitation to yearly mammography between age 40 and 49 years in the first 10 years."
It should also be noted that the 25% reduction (Relative Reduction) put forward by the authors is far from being "substantial", since the absolute reduction is actually only 0.04% [7].
Anthony Miller also contests, with references [8], the minimization of over-diagnosis, which Professor Duffy persistently tries to minimize in his demonstration: "Results with respect to breast cancer incidence suggest at worst modest overdiagnosis in this age group, and that any overdiagnosed cancers would otherwise be diagnosed at NHSBSP screening from age 50 years onwards. Therefore, screening in the age group of 40-49 years does not appear to add to overdiagnosed cases from screening at age 50 years and older. There might have been some overdiagnosis in the intervention group and during the intervention period, which was balanced when the control group received screening in the NHSBSP. However, we cannot directly observe or estimate overdiagnosis in a trial in which the control group also receives screening, albeit later than the intervention group. »

Studies on over-diagnosis are numerous and attest to this phenomenon in all age groups [10].
However, authors Duffy et al. concede: “we cannot directly observe or estimate overdiagnosis in a trial in which the control group also receives screening, albeit later than the intervention group”.

We therefore again come back to the fundamental obstacle: without a group free of any screening, no reliable conclusion can be drawn either on the benefits in terms of mortality or on the evaluation of over-diagnosis.

2) Other scientists

Journalist Jacqui Wise [11] published an analysis of this study in the British Medical Journal, including remarks made by other scientists about the study.

A-Reaction by K-J.Jorgensen [12]

Karsten Juhl Jørgensen, acting director of the Nordic Cochrane Centre in Copenhagen, told the BMJ : “Since the trial was initiated, breast cancer mortality in the UK in the included age range has been cut by half due to major improvements in treatment, including centralisation and specialisation of care, as well as better systemic treatment.
“…we can be reasonably sure that any benefit in absolute terms will be less today, as there are simply substantially fewer lives to be saved ».

The trial was originally planned to include 195,000 participants, but the number was revised due to slow recruitment. Jørgensen said, Jørgensen said, “As the 160 000 women enrolled in this study was not enough to show any difference in overall mortality, the study really cannot be used to conclude that ‘lives were saved.’
“The study tells us very clearly that any benefit of breast screening in this young age group is very small in absolute terms, as you would expect due to the inherently low risk of breast cancer death before age 40 years.”
In other words, it is impossible, in a population with a very low incidence of breast cancer (young women) [13], to conclude that a reduction in deaths can be obtained through screening. This is another factor that the author of the study has not taken into account.
Jorgensen also pointed out the number of false alarms experienced by women in the test group, i.e. 18% of the women during the trial period.

B-Reaction of V. Prasad [14]

For Vinay Prasad, Associate Professor at the University of California, San Francisco : “It is disappointing to see the authors of this study continue to promote misleading rhetoric ».
”Saves lives” said V. Prasad “means that women, as a result of doing this, live longer than those who do not do it. That did not occur in this dataset. Quite the opposite.” He added “The authors note a very small reduction in death from breast cancer which is tiny, and so small it does not impact dying for any reason.” [15].

D-Reaction from scientists of Sydney University in the Lancet.

"An earlier report on the trial (Moss SM Effect of mammographic screening from age 40 years on breast cancer mortality at 10 years' follow-up: a randomised controlled trial.Lancet. 2006; 368: 2053-2060), where mean follow-up was 10·7 years, did not find a significant difference in breast cancer mortality between groups, and there was no breast cancer mortality benefit in the trial overall (after a median follow up 22·8 years). "

E- Two additional responses, from eminent scientists, were made to Wise's article in the BMJ [16]

First of all, the opinion of Professor Michael Baum, Professor Emeritus of Surgery and Invited Professor of Medical Humanities at University College London.
For Professor Baum there are only two significant outcome measures in the practice of medicine for the patients we follow: length and quality of life. All other outcome measures should be considered, in his view, as surrogates.
M Baum comments :
« This trial claims that screening woman under the age of 50 for breast cancer, will save lives without having a detrimental impact on Qof (Editor note : quality of life). Starting with the first claim let us look at the raw numbers without any modelling or “mathemagic”, and here I acknowledge the help of Dr Vinay Prasad. The percent of deaths from breast cancer in the intervention and control arms were, 0.39 v 0.44, whilst deaths from all causes were, 6.5 v 6.5. Little evidence for screening as a “life saver”.

“As there was no formal assessment of QoL then we have to make the assumption that over-diagnosis or false positive results might impact on the woman’s psychological wellbeing to which can be added the toxicity of any surgery, radiotherapy or systemic therapy as the consequence of over-diagnosis”.

M. Baum estimates, based on available data, that 35% of women experience false alarms and over-diagnosis during the intervention period, with the consequent impact on their quality of life. According to Michael Baum, the authors' conclusions are unfortunately mainly driven by an ideological attitude that is not worthy of scientists.

Next, the opinion of Hazel Thornton, Honorary Visiting Research Fellow in the Department of Health Sciences at the University of Leicester who also comments.
« Recruitment of the 160,921 women in this study took place from 1990 to 1997. We learn that women in the intervention group were unaware of the study. In other words, they were denied their right to consider whether they wished to participate in the study. Screening by mammography is not without potential for harm: properly informed consent should have been sought from these asymptomatic citizens. The fundamental principle of the Declaration of Helsinki, of respect for the individual and the right to make informed decisions, was ignored.[17]

For H. Thornton, the problem with organized screening is that it focuses on the women who benefit from it, while neglecting the hundreds of women who go through this public health process and suffer harm, in some cases even psychological harm.

H. Thornton also refers to the current pandemic and its economic stakes.
« They (Editor note, those who talk about saving lifes) seem unable to see the wasteful disproportionateness of their stance at a time when currently, in the UK, for example, 1.85 million people are waiting for treatments put on hold in this time of pandemic. Only Covid-19 seems to have had the power to put a stop to breast screening when evidence, reason and clamours for distributive justice have not. »

In conclusion

We therefore see that many international scientific personalities are questioning Professor Duffy's conclusions.
This study and the sound analyses show once again, and this against the conclusions of the author, that breast cancer screening by mammography does not bring any benefit.
We remind that all published studies, and even the Duffy ‘s study presented here as "positive", demonstrate year after year, the ineffectiveness of screening in reducing mortality from breast cancer.
More and more voices are being raised calling for an end to this ineffective screening that has adverse effects on women.
It is quite disturbing to note that the scientific controversy, now almost swept away by ever-increasing evidence of the ineffectiveness of the program, is once again being renewed by the beliefs and ideology of scientists, as raised by Mr. Baum, and that these beliefs and ideology are leading these scientists to engage in manipulations of figures in order to erase the bitter failure of the results of an old trial, which was very well conducted, and whose conclusions on the failure of screening are nevertheless implacable.
Moreover, as Jorgensen and Thornton point out, all of these screenings have a cost that would certainly be better used elsewhere, especially in this epidemic period. Not to mention the cost of false alarms, both financial and psychological, that women have to face.

In addition, as Thornton points out, there is a lack of informed consent, as well as manipulative information which are often used with women.
In the next two articles, we will refer to this crucial issue of informing women about screening, and we will relate how screening promoters deliberately manipulate the information they give to women, when they give it….


[6] Read :
[8] references quoted by A. Miller :
Forrest APM Aitken RJ,Mammography screening for breast cancer. Annu Rev Med. 1990; 41: 117-132
Marmot MG Altman DG Cameron DA Dewar JA Thompson SG Wilcox M-The benefits and harms of breast cancer screening: an independent review. Br J Cancer. 2013; 108: 2205-2240
Miller AB To T Baines CJ Wall C-The Canadian National Breast Screening Study-1: breast cancer mortality after 11 to 16 years of follow-up. A randomized screening trial of mammography in women age 40 to 49 years. Ann Intern Med. 2002; 137: 305-312
Miller AB Wall C Baines CJ Sun P To T Narod SA-Twenty five year follow-up for breast cancer incidence and mortality of the Canadian National Breast Screening Study: randomised screening trial. BMJ. 2014; 348: g366
Baines CJ To T Miller AB-Revised estimates of overdiagnosis from the Canadian National Breast Screening Study. Prev Med. 2016; 90: 66-71
[9] National Health Service Breast Cancer Screening,
[10] See part "overdiagnosis" in this article:
[13] Hill C. Screening of breast cancer. Presse med. 2014 mai;43(5):501–9

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An unexpected side effect of the covid epidemic-19

The following is the view of two researchers regarding the long-term contribution of suspending cancer screening, to the advancement of cancer knowledge.

Gilbert Welch (Centre for Surgery and Public Health at Brigham and Women's Hospital and author of "Less Medicine, More Health")
And Vinay Prasad (oncologist, Associate Professor of Medicine in Oregon Health and Science University et auteur de "Malignant: How Bad Policy and Bad Medicine Harm People With Cancer")

Synthesis by Cécile Bour, MD, 28/05/2020

We had already recently reported the views of Judith Garber, a political and health policy scientist at the Lown Institute, and also whose of Susan Bewley, Professor Emeritus of Obstetrics and Women's Health at King's College London and President of HealthWatch.

According to the authors, due to the fact that medical care services were overwhelmed by the epidemic, some patients certainly suffered harm on their health.
For others, though, the two authors suggest that the delay may have been beneficial.
In addition to the effect of the decrease in surgical interventions, emergency room admissions, requests for additional biological and radiological examinations, and the increase in telemedicine, the two researchers review the impact of suspending cancer screening.
Previous research on the global effects of physician strikes has suggested a decrease in mortality concomitant with reduced medical consumption. It therefore seems relevant to carefully study mortality trends in 2020 and to disentangle Covid-related deaths from other causes of death. It would be just as important to look at inequalities according to socio-economic background: the interruption of medical care may reduce mortality among the over-medicated wealthy, but the opposite phenomenon is feared among the poorest.

The screening area

Suspending cancer screening is one of the areas to be studied according to Welsch and Prasad. For them, there is no doubt that the decline in mammography will lead to a decrease in the number of breast cancers diagnosed. But is this a bad or a good thing?
This is a good opportunity to study what will happen in American cancer statistics when screening resumes, in the opinion of these authors.
They expect one of two observations:

  • Breast cancer rates might "catch up" with the delay in diagnosis, meaning the deficit in cancer diagnoses during the pandemic would be matched for by a surplus of cancers in subsequent years. In other words, any cancers not detected in patients during the pandemic would eventually be found afterwards.
  • The alternative would be that breast cancer diagnoses would never catch up…
    Why ?
    Years ago, researchers observed this phenomenon in Norway. Welsch and Prasad refer here to the famous Oslo Institute study of 2008: in a group, women aged 50-64 years had three mammograms in six years, and at the end of six years it turned out that they had more invasive breast cancers detected than women in the comparison group, who had only one mammogram after six years. If all breast cancers were expected to become symptomatic, there would have been as many in both groups. There is no reason why there should be fewer in the group that was not regularly screened, except that breast tumors that never expressed themselves and even regressed spontaneously were detected in excess in the group that had more frequently mammography. This study was at the origin of the demonstration and quantification of overdiagnosis. (See our brochure).

A mammographic procedure done later and less frequently therefore leads to fewer breast cancer diagnoses. It could be argued that this deficit eventually manifests itself in undetected tumors appearing within a longer time frame, around 5, 10 or 25 years. However, this is not the case; this deficit is never caught up even after 25 years of follow-up, as Miller's study shows.
The results of the 2008 Oslo study suggest that some small cancers regress on their own. Question: could this be happening now during the Covid-19 pandemic? And could it be highlighted?

In the article the authors also look at the decline in heart attacks and strokes observed during this period. These diseases were either under-diagnosed or there were actually fewer of them?
Who benefited from this period of less medicalization, and who lost?

Conclusion of the authors

We won't find the benefits unless we look for them, say Prasad and Welsch. We need physician-researchers who are willing to ask hard questions about the services they provide - questions that may threaten their own professional/financial interests.

Covid-19 provides a once in a lifetime opportunity to study what happens when the well-oiled machine of medical care downshifts from high to low volume in order to focus on acutely ill patients. It will be comfortable for physician researchers to study what was lost. It will be courageous for them to study what was gained.

Our opinion

Here, the two researchers present and highlight the question of overdiagnosis and discuss its causes (spontaneous regression of a slow-growing/null tumor), rather than trying to quantify it.
Indeed, the period of suspending screening is likely to be too short for examining its impact reliably. For that it would require that the interruption last two or three years or more (as in the Oslo study comparison group, where the time period for mammography non-examination in the comparison group was 6 years), and that this interruption concerns people who would have been eligible within that time period, according to the initial schedule, as well as that there be no attempt to catch up with the delay.
In our situation, only a few months of over-diagnosed cancers will disappear.
Already in our country the INCa has been rushing, although the epidemic is not yet totally behind us, to send a note to the ARSs (Regional Health Agency) asking to set up a timetable to catch up with the screenings not carried out! (Page 2)
"A plan to catch up on screening not carried out will be established by each CRCDC (regional coordination centers for cancer screening), depending on the estimated number of screenings not carried out and on the epidemiological situation in the territories, its own resources and the methods for resuming activity".
It should be noted that there is an obsessively technocratic concern about the activity indicators of the screening centers, there is no question of reflecting on the possibility of a study based on the data collected during the suspension of screening period, no, it is a question of catching up on indicators that would have lagged behind schedule for the last three months.
A Danish physician colleague confirms that in Denmark, as well, the reactivation has also taken place, and it is not lagging behind….

Another reflection is that if we will find only a slight reduction in incidence due to the short duration of suspending cancer screening, it will be very difficult to detect reliably the eventual compensatory increase mentioned by the authors, or on the contrary the absence of a compensatory increase, not to mention the fact that tumors that disappear by themselves (the over-diagnosed) need nevertheless at least several months, if not years, to disappear.

Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.

Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.