Health screening needs independent regular re-evaluation

October 2, 2021, Dr. C. Bour

BMJ 2021 ; 374 doi : https://doi.org/10.1136/bmj.n2049 (Publié le 27 septembre 2021)
https://www.bmj.com/content/374/bmj.n2049

Authors:

Fabienne G Ropers, consultant, Department of General Paediatrics, Willem Alexander Children's Hospital, Leiden University Medical Center, Leiden, Netherlands Alexandra Barratt, professor, Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia

Timothy J Wilt, professor, Minneapolis VA Center for Care Delivery and Outcomes Research and the University of Minnesota, Minneapolis, MN, USA

Stuart G Nicholls, researcher, Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Canada

Sian Taylor-Phillips, professor, Warwick Medical School, Coventry, UK

Barnett S Kramer, consultant, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, USA

Laura J Esserman, professor, Helen Diller Family Comprehensive Cancer Center, University of California San Francisco, San Francisco, CA, USA

Susan L Norris, doctor, Oregon Health and Science University, Portland, OR, USA

Lorna M Gibson, consultant, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK

Russell P Harris, emeritus professor, School of Medicine, University of North Carolina at Chapel Hill, NC, USA

Stacy M Carter, director, Australian Centre for Health Engagement, Evidence and Values, University of Wollongong, Wollongong, NSW, Australia Gemma Jacklyn, consultant, Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia

Karsten Juhl Jørgensen, chief physician, Centre for Evidence-Based Medicine Odense (CEBMO) and Cochrane Denmark, Department of Clinical Research, University of Southern Denmark, Odense, Denmark 

According to the authors (researchers, medical professors, physicians, etc.), new circumstances that differ from the initial context in which screening programs were implemented may alter the benefit and risk profile of screening programmes

From the early beginnings of screening, intended to detect disease or risk factors before symptoms appeared, there is evidence that screening delivers health benefits but also harms and costs. It is important to note that these outcomes are not constants: they change with new evidence, vary between contexts, and over time.

Screening practices (whether organised as programmes or not) tend to be slow to react to these changes; alterations are often resisted and controversial.

According to the authors, reasons for resistance to change in established and entrenched programs include both financial interests (of individuals, groups, or lobbies with a vested interest in continued screening), attention to sunk costs,[1] and lack of evidence of high certainty or proper evaluation of existing evidence. But there is also a problematic belief that early detection is always better, and simply inertia or preference for the status quo. 

Screening programmes are often financed within finite collective healthcare budgets. They target asymptomatic people, most of whom are not those who need healthcare most. 

Therefore, continuing screening in the face of changing circumstances deserves careful consideration, as it potentially leads to harm to healthy citizens and wastes scarce resources.

While there are well-established principles for starting screening, none exist for stopping it.

As experts who have worked on screening over many years, the authors see an urgent need for clear, agreed methods for actively re-evaluating existing practices.

Why screening practices need re-evaluation

The value of screening may be changed by several factors, including changes in disease incidence, advances in diagnosis and treatment, evidence from ongoing programmes, and preventive possibilities.

For example, in some cases, so-called primary prevention, i.e., prevention before the disease occurs, may decrease disease incidence and thus the absolute benefit from screening.

New data showing that therapeutic advances contribute more than screening to the reduction of mortality by the disease are, of course, essential.

In the context of breast cancer

This article is, of course, "up to date" at the dawn of the pink October wave. Since the year 2000, early whistleblowers, epidemiologists, for the most part, have been warning about the harmful effects of breast cancer screening, of which it is imperative to inform women.

According to several reviews, the adverse effects prevail when the harmful effects attributable to screening and overtreatment are included in calculating mortality and morbidity[2].

In all cases, and according to independent evaluations, the benefit of screening is always minimal compared to the added harms it exposes. As a result, several countries have decided to inform women through decision support tools [3]. At the same time, the French communication relentlessly continues its promotion in the media with untruths, as in the magazine Dr. Good where we also learn that mammography delivers UV [4]...

Or in the show 'Envoyé Spécial' where "awareness" of screening seems to be a major concern rather than objective information.

John Horgan, an American science journalist, wrote an excellent summary of the enormous gap between reality and the almost industrial promotion of screenings and certain treatments based on distortions of scientific data.[5]

We are now well aware of the problems of over-diagnosis[6] and over-treatment that screening at any cost leads to, in the face of a non-significant reduction in mortality[7], particularly for breast cancer. It is becoming urgent to consider this modern knowledge when questioning the relevance of low-contribution screening such as that for breast cancer.

Reactions to BMJ article

1° Reaction of Pr.M.Baum

Michael Baum

Professor emeritus of surgery and visiting professor of medical humanities UCL-London

He comments:

"Their mantra, "catch it early and save a life" has led to the wastage of huge human and technical resources, delayed the introduction of more valuable public health initiatives, and harmed countless asymptomatic individuals by over-diagnosis and over-treatment. As the ultimate reductio ad absurdum, there has been a very high profile of a screening programme using liquid biopsies to identify 30 different cancers in the last week. (see this link; https://www.annalsofoncology.org/article/S0923-7534(21)02046-9/fulltext ). It reaches the point of farce when they claim the highest sensitivity for metastatic cancers with unknown primaries. I hate to think how much damage was done to the patient in the frantic research for the primary. I would humbly suggest that the first agenda item for this new committee would be to nip this in the bud."

We talked about liquid biopsies, which quickly showed their limits in terms of screening. Indeed, finding a circulating cell does not make the individual a cancerous person in the future. What will we do with all these "findings" in people who complain of nothing and who will have to undergo heavy and repetitive complementary explorations to find something or nothing at all one day hypothetically? [8]

If applied to cancer screening in an asymptomatic population, these circulating tumor DNA tests will have the same problems of sensitivity and specificity as traditional biomarkers, in addition to their high cost and complexity.

2. Reaction of Dr. Shyan Goh

Orthopaedic Surgeon-Sydney, Australia

Dr. Goh cites the WHO document, a guide on screening programs that we also present in our webpages [9], which can be downloaded in French for interested readers [10].

This paper on population-based screening, Dr. Goh explains, is full of examples of how a screening idea does not necessarily work the same way in an international setting.
One important premise of population-based screening is that "the benefits of screening outweigh the potential harms."

The question here is, says the author, what are the "potential harms" of screening?

Many clinicians advocate various screening programmes based on the focus upon potential harms caused by the disease being screened, often in the form of mortality rates from the disease.

Others and much of the public looked at overall mortality and morbidities of the screening programme, including deaths from the diseases as well as of other causes including complications of screening (e.g., biopsy for mammography screening in case of false alarm, Editor's note)

Conclusion

We conclude with Dr. Goh's pertinent question: which viewpoint is more important, that of the clinicians focused on the search for more and more cases, or that of the public more interested in overall mortality and morbidity, the one that also captures the harms of screening?

In 2021, after several decades of errors and controversies, the current data no longer show the superiority of the breast cancer screening program.

When, but when, and after how many infantilizing pink campaigns will the public authorities and health authorities finally find the courage, with the support of the media, to inform women?

References

[1] In behavioral economics, sunk costs are costs that have already been paid definitively; they are neither refundable nor recoverable in any other way.

[2] https://cancer-rose.fr/en/2020/12/29/excess-mortality-due-to-treatment-outweighs-the-benefit-of-breast-cancer-screening-synthesis-of-several-studies/

[3] https://cancer-rose.fr/en/2021/06/28/other-information-tools/

[4] http://link.mag.nl.drgoodletter.com/m/view/200101/501233/kztFMyVWSJxvreVukpVatg==

Interview with Dr. Pierre-Yves Pierga "Finally, regarding exposure to UV rays, if we add up all the mammograms performed in a lifetime as part of the screening, it represents less than a CT scan. So the exposure remains reduced."

We have pointed out the error to the editors; it is indeed X-rays.

[5] https://cancer-rose.fr/en/2020/12/14/the-cancer-business/

[6] https://cancer-rose.fr/en/2020/11/30/what-is-overdiagnosis/

[7] https://cancer-rose.fr/en/2020/11/30/what-is-an-effective-screening/

[8] https://cancer-rose.fr/en/2021/04/22/media-coverage-of-screenings/

[9] https://cancer-rose.fr/en/2021/06/28/other-information-tools/

The WHO guide is the third decision support tool in the article, from the top[10]https://www.euro.who.int/en/publications/abstracts/screening-programmes-a-short-guide.-increase-effectiveness,-maximize-benefits-and-minimize-harm-2020

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.

Screening campaigns: a move toward greater caution?

Analysis by

Sophie, referent patient,
Dr. M.Gourmelon,
Dr. C.Bour

September 2, 2021

We may be witnessing a shift in certain countries and the World Health Organization's standpoint on breast cancer screening campaigns. The example is given by Ukraine, which opts, with the help of the WHO, for an "early diagnosis" programme for breast cancer control plan rather than classical screening.

This more cost-effective policy is discussed in the following article “Better than screening: with WHO’s help Ukraine chose a cost-efficient policy to prevent breast cancer” https://www.euro.who.int/en/countries/ukraine/news/news/2021/3/better-than-screening-with-whos-help-ukraine-chose-a-cost-efficient-policy-to-prevent-breast-cancer

According to the WHO: « Given the major improvements in breast cancer treatment in the past decades, in cases when breast cancer is diagnosed at early palpable stage, the rates of secure cure are very high.”

Thus, an early and rapid diagnosis procedure for women with symptoms would be preferred rather than a mass screening that would indiscriminately target the entire healthy women population [1].

According to the WHO, this is an "inspiring story" about searching for the best way of fighting breast cancer. The WHO recognizes the effectiveness of this new approach and suggests taking it as an example as it will save thousands of lives and millions of euros in loans in Ukraine.

The concept of "early diagnosis”

But what does this "early diagnosis", put forward by the WHO, mean?

Early diagnosis is based on the rapid identification of cancer in patients who present symptoms of the disease to offer them a complete and rapid diagnostic follow-up.
In low-resource countries such as Ukraine, the problem is that symptomatic women, who already have a breast cancer symptom and do not seek medical attention early enough, present too late for care.
France was ready to lend Ukraine $24 million to equip it with mammography equipment for a screening program. Still, with WHO support, Ukraine chose a less expensive and more prudent strategy, claiming that the country already had enough mammography equipment to launch an effective early breast cancer diagnosis program.

A detailed explanation of this concept is given in the following document: https://apps.who.int/iris/bitstream/handle/10665/254500/9789241511940-eng.pdf?sequence=1, starting on page 8.

To summarize, the two procedures that are being weighed up here are as follows:

- early diagnosis, only for patients with symptoms  

- systematic screening: applied to the entire healthy population

According to the document:

“After consultation with WHO/Europe experts, Ukraine’s authorities became interested in another WHO-recommended cancer prevention strategy – the early diagnosis programme. It is based on the rapid identification of cancer in patients who have symptoms of the disease and rapid full diagnosis follow-up. Given the major improvements in breast cancer treatment in the past decades, in cases when breast cancer is diagnosed at early palpable stage, the rates of secure cure are very high.”

“In comparison to mammography screening programme, centralization of advanced centers providing high-quality early diagnosis of breast cancer is more efficient, economical and sustainable in a setting with limited resources,” said Dr Olga Trusova, a leading Belarusian mammography expert who took part in the BELMED project aimed at implementation of breast cancer screening in Belarus. BELMED was funded by the EU and implemented by WHO/Europe and IARC since 2016.

These quotes are meaningful because they implicitly acknowledge that screening:

1. carries risks that are inflicted on healthy populations,

2. has not been as successful as expected,

3. is very costly compared to the expected population benefits, and

4. once a disease is treated with significant efficacy in symptomatic forms, screening becomes obsolete. This is precisely one of the observations made by P. Autier, professor of epidemiology at IPRI: the ability to reduce breast cancer mortality attributable to treatment makes the ability to screen even more negligible and non-existent, and more women would have to be screened to achieve the number of deaths avoided that would be truly attributable to screening, with all the concomitant over-diagnosis and false alarms.
https://cancer-rose.fr/en/2020/12/17/mammography-screening-a-major-issue-in-medicine/
The more effective the treatments, the less likely screening will be useful.

Screening would be limited to cancers for which it appears to be effective, such as cervical cancer. “Early detection" seems to be a less expensive option with less negative impact for certain cancers, such as breast cancer. Early detection is effective for cancers that can be identified in early stages and cured with immediate treatment; this is true for breast cancer.

The WHO technical consultation on screening

To understand this shift toward a more measured and reasoned approach, we must go back a bit to the time of the WHO's technical consultation on screening for countries in the European region, which was held in Copenhagen in 2019:

https://www.euro.who.int/__data/assets/pdf_file/0017/408005/WHO-European-Technical-Consultation-on-Screening.pdf

The goal of this consultation, namely to limit the harmful effects of screening on the population, inconveniences that are frequently ignored and underestimated by the population, is clearly stated from the start:

“In recent years, countries in the WHO European Region have been introducing new screening programmes for conditions and health checks along the life-course. However, policy-makers, health professionals, and the public are not adequately aware of the potential harms of screening as well as the costs and requirements of implementing an effective screening programme. With this in mind, the WHO Regional Office for Europe held a Technical Consultation inCopenhagen on 26–27 February 2019 aimed at clarifying the harms and benefits of screening in the light of recent scientific evidence and countries’ experience. This Consultation constituted the first step in an initiative by the Regional Office to improve policy decision-making for screening. It was attended by 55 experts from 16 countries, including academics and observers from nongovernmental organizations.”

At the end of 2020, the WHO published the screening guide; concerning breast cancer in particular (page 38), the guide points out the harmful issues of screening (overdiagnosis and false alarms) and emphasizes informed information, an intangible ethical principle, before inciting populations to screening.
https://www.euro.who.int/fr/publications/abstracts/screening-programmes-a-short-guide.-increase-effectiveness,-maximize-benefits-and-minimize-harm-2020

In this logic, the WHO titles in March 2021:
“Better than screening: with WHO’s help Ukraine chose a cost-efficient policy to prevent breast cancer.”

Early diagnosis, why not in France?

Often the question is asked: "But what to do instead of the current screening?"

It is now recognized that mass screening causes more harms than benefits, it does not reduce mortality substantially and induces many overdiagnoses with their consequences of over-treatment, and leads to unnecessary illness. Although very much in favour of screening, the Marmot report alleges 3 overdiagnoses for a life lengthened by screening [2]. The Cochrane review mentions 10 overdiagnoses for one life saved [3].

In France, we have a sufficient number of mammography machines to be able to adopt this policy of early diagnosis, which is more respectful of women, while at the same time providing them with correct and neutral information on breast cancer and the means to fight it, as called for by the public consultation.

But, in practice, this is what we already know! In our country, women are generally vigilant about the health of their breasts; screened or not, women are made aware of breast cancer by the media and the medical profession, and they have the reflex to consult without delay when they perceive abnormal symptoms. Our health care system has vast economic and human resources and does not have the problems of under-resourcing that Ukraine and other European countries have. A symptomatic woman here receives prompt care and has all chances to be correctly treated and followed up.

Early diagnosis instead of costly mass screening procedures: an "inspiring story," says the WHO, an effective tool in the fight against cancer, allowing health resources to be allocated more appropriately.

So, instead of blindly and indiscriminately urging women to undergo routine screening in disregard of balanced information, a screening that is more likely to expose them to an unnecessary disease than to save lives, why don't we make this inspiring story our own?

Is there a necessity for mistrust?

« The early diagnosis approach for breast cancer was recognized as more appropriate for Ukraine than mammography screening. It is less resource-intensive and allows Ukrainian health system to better prepare for future screening measures if needed.”

This line from the first document we mentioned at the start of the post makes us wonder...

We must ensure that the concept of "early diagnosis" is not misused and that it does not serve as a "foot in the door" for pro-heavy imaging and pro-testing lobbies to rush into larger ambitions and to deploy insatiable appetites toward more and more medicine, directed at more and more individuals, many of whom would not have needed it and will not benefit from it.

References

[1] As a reminder, a basic notion of knowing the difference between screening mammography and diagnostic mammography:

Screening mammography is the routine mammography that women are asked to have every two years from the age of 50, even in the absence of any symptoms.

Diagnostic mammography is the one that is motivated by the appearance of a sign, a symptom in the breast (swelling, retraction, deformation, etc.). This symptom then requires a mammography exploration to identify and diagnose the problem in the breast.

[2] Marmot M.G., et al. The benefits and harms of breast cancer screening: an independent review. Br J Cancer. 2013 Jun 11; 108(11): 2205–2240
https://pubmed.ncbi.nlm.nih.gov/23744281/

[3] https://www.cochrane.dk/sites/cochrane.dk/files/public/uploads/images/mammography/mammografi-fr.pdf

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.

Mammo or not mammo?

In August 2021, publishing of the book "Mammo or not mammo?" by Dr. Cécile Bour, Radiologist

  • A radiologist outlines the benefits and risks of screening mammography.
  • A guide based on questions asked by Dr. Bour's patients brings together information and decision-making tools based on objective scientific data.

The media, health insurance, and doctors make all women aware of the benefits of breast cancer screening... but how many are aware that having a mammogram every two years carries risks

Be informed before deciding

Indeed, there are numerous risks, beginning with the risk of overdiagnosis, which can result in unnecessary and distressing examinations and treatments. Other consequences that can be harmful to women's health should also be considered: false alarms, radiation exposure, treatment side effects,...

These risks are such that mammography screening is now the subject of a lively controversy in the scientific community. Women are kept out of this debate...

Because they were never given balanced data, some readers are likely to discover only now that the appropriateness of breast cancer screening is scientifically debatable.

Dr. Cécile Bour

In this benevolent book, the author rightly reminds us that the decision to undergo screening is a personal choice, which needs to be thought through.

My own experiences as a radiologist and discussions in the privacy of my consultations have made it clear that a woman's decision to attend or not screening cannot be made in a clear-cut manner but is the result of a process. As a matter of fairness and ethics, it is indeed necessary to properly inform every woman.

Dr. Cécile Bour

Objective information to help each woman make HER own choice

This book is for all women who have questions about breast cancer screening or consider screening on their own or their doctor's initiative. Based on patient questions, it provides the necessary information to aid each woman in better understanding the stakes of this screening, knowing its disadvantages, and discussing it with her doctor.

Among the questions addressed in the book:

"Is that all right? You'd have seen it if there was anything there, right?"

"You're sure you'll see everything if you get a mammogram, an ultrasound, or an MRI, right?" "There are ten women at my workplace. We all have screening mammograms because one of us will get it. I've heard it's one in every eight! Is that correct?"

"I read that the cure rate for breast cancer is 90%. Is this true?"

"The radiologist informed me that it was a very small cancer. Isn't it true that the earlier it's discovered, the better?"

 "Shouldn't mammograms be done earlier, before the age of 50?"

 "What is overdiagnosis?" "Is it really so bad to detect harmless cancers?"

The author

Cécile Bour is a Radiologist in the Metz region.

She is the president of the association Cancer Rose, which advocates for women to have access to independent and adequate information about breast cancer screening.

Download the press release (french)

Editor's website

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.

Mammo or Not Mammo ? A book for women (in French)

Cécile Bour, MD, Radiologist

August 4, 2021

Mammo or Not Mammo ?

Should I have a breast screen ? 

Book published on August 28, 2021

The media, health insurance, and doctors make all women aware of the benefits of breast cancer screening... but how many know that having a mammogram every two years involves risks, some of which have a negative impact on women's health and lives?

In this book, I will give you all the information you need to make an informed decision about whether or not to participate in breast cancer screening.

For this, I started with questions from patients that I collected during my consultations and answered as didactically as possible because a screening process is not an obligation but rather a personal choice that should be considered, provided that one is appropriately informed.

Editor's website

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.

Dream of a senologist

A testimonial from Dr M. Granger, Senologist, July 21, 2021

Mrs PS, 50 years old, from Paris, consulted in August 2010 for advice.

On June 23, 2010, she had a 3rd mammogram in a Parisian SENOLOGY CENTER, classified as ACR4 for a "poorly systematized zone of architectural distortion in the upper right quadrant." She had microbiopsies the same day, which resulted in the "diagnosis": "Proliferative fibrocystic mastopathy with atypia, ductal type (Atypical ductal hyperplasia)." She has an MRI appointment in a few days and is very concerned about the speed and bad turn of events: what is she supposed to do?

My findings:

After carefully inspecting the mammograms that were brought to me, I notice, with some initial concern, that this "zone of poorly systematized architectural distortion" escapes my sagacity.

The magnifying glass brings nothing: I see, in comparison with the left breast, which underwent a total adipose involution, only a banal aspect of a glandular remnant.

The appearance was identical on a mammogram done precisely seven years earlier.

Moreover, my clinical and ultrasound examination was strictly normal.

Surprised by the Parisian radiological diagnosis but reassured by the constant imaging, I advised this lady to wait for the MRI results and send them to me. These results arrived three days later, on the same evening as the examination.

"The zone of right superior-external architectural distortion is confirmed, with no suspicious morphological character on MRI." However, we are aware of the underestimation of MRI for intra-canal lesions. A surgical excision of the atypical area should be planned”.

The patient, caught in the "concordant" vise of 3 reports - mammogram, biopsy, and MRI - consulted a breast surgeon at the Gustave Roussy Institute (IGR).

A few days later, she sent me the following report: "I have received the result of your breast MRI, which confirms the elements described on the mammogram, i.e., a poorly systematized area of the upper right quadrant. However, given the histological findings of the biopsy, which revealed fibrocystic mastopathy with ductal atypia,  an excision surgery of this area is necessary".

I am sending this email back to Mrs. PS

Dear Mrs,

In response to your email, here are my conclusions:

- Your MRI is normal; the exact text is: "area of right superior-external architectural distortion that does not show, on MRI, any suspicious morphological character." As usual, the rest of the report ("however...") is just an umbrella formula.

- The letter from the IGR retains the negative part of this report ("poorly systematized zone" [which means what, by the way?]), opening the umbrella in turn: "an excision surgery is necessary...". A surgeon operates.

I warned you about this logic. I encounter it every day. It's not mine, given the mammograms you brought me, which haven't changed in seven years. This stability, in my opinion, is worth all of the umbrellas in all of the institutions on the planet, especially when the MRI is normal.

I remain in favor of simple surveillance, the specifics of which have to be determined for your moral comfort and safety: I would recommend a first X-ray and ultrasound control of the right breast within a year or less (contact my secretary), and then we will see.

You are thus confronted with choosing between following your new provincial senologist and the big Parisian machinery! Make this decision in your soul and conscience, discarding all Hierarchies and listening only to your deep feelings: the good answer will be found there.

Sincerely yours. M Granger

Mrs. PS finally chose to follow her provincial senologist.

She "comes from far away" but "knows why." I saw her until 2017, without noticing anything new, with clinical and X-rays and ultrasound examinations remaining unchanged for over 15 years. One who has been saved...

What can we learn from all this for the teaching of Senology?

Several observations, among many others, appear to be beneficial to me:

- The radiologist's initial description ("poorly systematized architectural distortion") was the starting point for a path that the patient had to climb alone... until the anxiety became too much for her and she decided to seek advice.

-This initial description was at no time questioned, and the radiologist's opinion was final.

However, it should be noted that the ACR classification can be easily "twisted" to achieve the desired result: if the radiologist accepts simple surveillance, he will grade the images as ACR2; if he wants close surveillance, he will grade them as ACR3; and if he wants a biopsy, especially if he can do it immediately, he will grade them as ACR4, as in this case.

A detached viewpoint will see things differently: simply comparing all of the mammograms taken, sometimes a dozen(!), will lead to a different conclusion, in this case normal (or ACR 2, if you are a fan of the Americas). That would have put an end to this lengthy diagnostic rambling.

-As previously mentioned, the initial description/classification was not discussed: because each professional works independently, without controversy, and is thus not directly accountable to the patient. In fact, this chain can be described as a vertical commercial agreement from which all parties have benefited. In the wild animal world, this is known as "horde hunting," and we know that if all of the subjects in the cohort are potentially targeted, only the strongest will escape .

Mrs. PS, a graduated lady working in the high public service, was able to get out of it by making the Cornelian decision to resist the IGR Institute... many others are not.

The remedy to this chain of medical control without counter-power is NOT to be found in the RCP (multi-disciplinary consultation meeting, editor's note): I have never seen a pathologist, a surgeon, or a radiotherapist oppose and break the chain biased from the start towards biopsies - micro, macro or surgical.

As a result, there is a de facto agreement not to question the initial diagnosis, and individual psychoanalysis of the "validated decisions" in RCP would be fascinating. The breast is a highly invested organ that everyone loves to argue about and share.

You may have realized that I am living the dream that our father (Charles-Marie Gros, from the Hospices Civils de Strasbourg) had in the 1960s: that the SENOLOGIST is recognized as that breast specialist, a little/lots/passionately a specialist in all the disciplines involved-from the various forms of imaging to anatomopathologist, to the relative interest of surgery and the oncologists' panoply... a specialist who coordinates and tempers everyone's enthusiasms and anxieties, a specialist ultimately accountable to the patient.

A communicator who is willing to take his time and sometimes loses it. But, as you're probably aware, the dream is still a dream, and SENOLOGY is a beautiful utopia. Mrs. PS and her struggle sisters occasionally awaken it.

 

A few comments from Cancer Rose

It is absolutely clear that screening has increased the number of unnecessary mastectomies.
We presented our study on mastectomies in France at the French Society of Senology's annual meeting in Lille.
It is undeniable that non-cancerous lesions are "over-operated," and this is yet another example of an over-detection drift, namely over-treatment.
Yet, this obviously explains why, as described in our study, there are increasingly more mastectomies in comparison to the incidence of invasive cancers.

The observation also confirms the ACR classification drifts: ACR3 hardly exists any longer, there is a tendency to classify very quickly in ACR4, and we voluntarily "upgrade" our examination classifications to have immediate access to a tissue sample, to avoid omitting anything, rather than taking time, settling down, and possibly rechecking at a later date.
The ACR4 becomes a catch-all for anything that appears "abnormal." More information can be found at https://cancer-rose.fr/en/2020/12/30/arc-classification/.


Finally, while there is a double reading during screening for cases classified as "negative" (see here: https://cancer-rose.fr/en/2021/03/30/what-is-a-screening-mammogram/), there is none for cases classified as "positive." This is not entirely logical.
But, even if there was, who would have the courage to "negate" an image previously classified as positive by another colleague...

 

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.

From cancer culture to cancel culture. Chronicle of a drift

Paris, Saturday, July 17 - The fight against fake news, especially in the health field, seems essential to reinforce the informed consent of everyone and the autonomy of people concerning their health. However, how to avoid that under the virtuous pretext of drawing attention to untruths, some focus first on their messages, sincerely convinced of their relevance and importance, omitting or denying the veracity of certain questions and controversies?

Wouldn't it be paradoxical and dangerous if those who present their work as a deciphering enterprise actually provide partial or even biased information?

On this subject the association Cancer Rose and the collective “Pour une inFormation indépendante en Santé” (Formindep) write to us today.

They alert to the way how the National Cancer Institute (INCa) would not always avoid a form of instrumentalization of the fight against fake news, by preventing by this means that comprehensive information on systematic breast cancer screening is provided.

By Cancer Rose and Formindep

Cracking down on fake news or hindering access to reliable medical information : What's new in France?

The facts

The French National Cancer Institute (INCa) conducted an internet-based "consultation" from September 22 to October 15, 2020. This consultation aimed for participants to vote "for" or "against" 220 proposals developed by the Institute for the new decennial Cancer Plan. Less than 2500 people took part.

One of the proposals is headlined "Set up a device to combat fake news ".

The text is as follows:

"A reactive anti-fake news system will be structured. It will enable people to be enlightened in the face of controversies likely to concern the various fields of cancer: primary prevention, screening, treatments, and complementary care. It is important to better inform public opinion, especially by using data that makes tangible the effects of prevention (international benchmarks, results of studies...). In addition, without being limited to the field of cancer, the creation of a "CSA Health" type system will be studied to implement rules for information in health, provided in a framework agreement with content hosts (media, social networks) to do a work of eliminating fake news identified by a college of experts."

CSA is the French acronym of “Conseil Supérieur de l'Audiovisuel », which is the French regulator of audiovisual.

The reservations expressed by some citizens did not prevent INCa from adopting this proposal with great diligence, based on the 124 voters among the 47.9 million inhabitants registered on the electoral rolls and without any representative power.

The proposal has already been incorporated, in a simplified form, into Decree No. 2021-119 of February 4, 2021, which defines the ten-year national cancer strategy.

In the paragraph "Improving prevention", we read the following sentence, although it is somewhat imprecise: "New devices will be created to combat fake news".

And in June 2021, the INCa launched a new rubric on its website to denounce "fake news", under the title "The Enlightenments".

A fully assumed project to censor information

And there's a bad surprise there, because under the heading mentioned above, "The Enlightenments", the controversy over breast cancer screening is immediately qualified as "fake news", with the following surprising wording: "This scientific debate may have a negative impact on women and turn them away from the screening".

While skepticism is fundamental to any scientist worthy of the name, the INCa succeeds in both censoring all scientific debate and promoting itself in a partisan manner, minimizing overdiagnosis, the central problem of screening, and concealing its serious consequences for women, namely overtreatment, by publishing a pro-screening propaganda text.

Three major concerns

1° Possibility that the INCa will acquire, in future, the excessive power to force internet media and social networks to censor information which the Institute deems unilaterally "fake."

This is frightening because it implies the establishment of authoritarianism in health. Zealous and intolerant defenders of their self-justified "truth" will thus be able to impose their peremptory right-thinking  in a democracy, far from the interests of the population, affirming as an undeniable fact that "Breast cancer screening provides women with a benefit far greater than its risks."

This completely disregards the physical, psychological, and social suffering that women are experiencing due to overdiagnosis and its corollary, overtreatment.

2° Legitimacy of the INCa to provide information is questionable, as is that of taking a right to designate "fake news".

This institute was previously criticized for poor information quality in the 2016 report of the Citizens' Concertation on Breast Cancer Screening.

 It has also been pointed out in two academic studies. In the first study cited, the information disseminated by INCa is compared to that provided by Cancer Rose. Beyond the brief abstract, the study's findings show that the information provided by Cancer Rose is superior to that of the INCa in terms of the criteria for information that must be presented to the public.

The second study, published by Danish authors, denounces INCa's methods for influencing the public to increase screening participation, classified in following systematic categories: “Misleading presentation of statistics” and “Misrepresentation of harms vs. benefits” .

Is it, therefore, legitimate for this Institute to act as a censor and issue injunctions to "eliminate fake news”?

3° Ethical principle of non-maleficence is blatantly disregarded in the new rubric created by INCa

INCa affirms breast cancer screening as having "undeniable benefits for women" .  

The INCa article on breast cancer screening concedes that a certain percentage (though admittedly small) of women will be overdiagnosed and "treated unnecessarily".

Even if there were a massive overall benefit in the women's population, which is not the case, one of the limitations of breast cancer screening is that only some women will benefit, which is at the cost of harm to others.

Such a justification violates the fundamental principle in medicine: "first not harm", since individuals will obviously be harmed following the intervention of health professionals, at the instigation of the INCa, in search for a benefit that is neither certain nor proven. And not universal.

Will INCa's policy become censorship after a propaganda policy to develop screening? It is not possible to guarantee health democracy in our country, where freedom of expression and access to knowledge are fundamental rights, by acting in such an unworthy manner, both ethically and scientifically.

References

[1] About the title

https://fr.wikipedia.org/wiki/Cancel_culture

The expression Cancel culture has been variously translated as "culture of banishment", "of cancellation", "of ostracism" or "of ostracization", "of negation", "of annihilation", "of erasure", "of suppression", "of boycott" or "of boycott", "of public humiliation", "of interpellation", "of denunciation"

Thus, on July 7, 2020, in an article published in Harper's and translated in Le Monde, 153 artists, intellectuals and personalities denounced the culture of cancellation and the obstacles to the free flow of ideas and condemned the "intolerance towards divergent opinions".

[2] https://consultation-cancer.fr/pages/consultation-resultats-et-apports-citoyens

[3] https://consultation-cancer.fr/consultations/axe-1-ameliorer-la-prevention/consultation/consultation/opinions/2-prendre-ensemble-le-virage-preventif/mesures-proposees/mettre-en-place-un-dispositif-de-lutte-contre-les-fake-news

[4] www.legifrance.gouv.fr/eli/decret/2021/2/4/SSAP2100774D/jo/texte

[5] https://leseclairages.e-cancer.fr/le-depistage-du-cancer-du-sein-est-il-inutile-voire-nefaste

[6]       Reference 1 of the article on breast cancer screening in the rubric "The enlightenments” is nothing more than a report from ... the INCa! (1 National Cancer Institute, "Benefits and limitations of the organized breast cancer screening program," 2013)

[7]        “Améliorons le dépistage du cancer du sein-concertation citoyenne et scientifique-Rapport du Comité d’orientation,” September 1, 2016. Page 84 and 85 of the consultation report: http://www.concertation-depistage.fr/wp- content/uploads/2016/10/depistage-cancer-sein-rapport-concertation-sept-2016.pdf

"The public consultation.... highlighted the very inadequate information available to women on this screening. And, for those that are specifically intended for them, we note that this information makes no mention of the controversy that it has been the subject of for several years, nor of the existence of a real uncertainty as to the benefit/risk ratio, nor of its limitations, both in terms of its true purpose (in this case, "detection") and its financial coverage."

[8] https://www.sciencedirect.com/science/article/abs/pii/S039876201930522X?via%3Dihub

[9] https://academic.oup.com/eurpub/article-abstract/31/1/200/5902144?redirectedFrom=fulltext

[10] https://cancer-rose.fr/2020/01/02/david-contre-goliath-qui-informe-mieux-les-femmes-cancer-rose-ou-linca/

[11] https://cancer-rose.fr/wp-content/uploads/2021/04/nouveau-tableau.pdf

[12] https://leseclairages.e-cancer.fr/le-depistage-du-cancer-du-sein-est-il-inutile-voire-nefaste/

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 National Institute of Cancer in France (Inca) relegates the question of the benefit-risk of organized breast cancer screening to the “Fake-news” rubric

https://www.apmnews.com/depeche/53160/369302/l-inca-relegue-la-question-du-benefice-risque-du-depistage-organise-du-cancer-du-sein-a-la-rubrique-infox
Release APMnews, by Virginie Bagouet, reproduced with the kind permission of APM international.

NEWS RELEASE of APMNEWS - Tuesday, June 22, 2021 - 18:48

The National Institute of Cancer in France  (Inca) relegates the question of the benefit-risk of organized breast cancer screening to the "Fake-news" rubric

Keywords: #cancer #public health #Inca #breast cancer #screening #patients-users #revue Prescrire

PARIS, June 22, 2021 (APMnews) - The National Cancer Institute (INCa) is addressing the question of the benefit-risk of organized breast cancer screening in a new "Fake news" website rubric launched last week, APMnews found.

Last week, INCa launched on their website a new rubric : "Information behind fake news". Facing the multiplication of these "infox, fake news or rumors", it is intended to help "seeing in what they are false and better understand the dangers ", explains the president of INCa board of directors, Norbert Ifrah, on the homepage.

The section has been launched on different topics: HPV vaccination and multiple sclerosis, the impact of fasting, diet and food supplements in cancer patients, organic food and bra wearing on the risk of developing cancer.
The one on screening is entitled "Is breast cancer screening unnecessary or even harmful?
The INCa states that the scientific debate about the benefit-risk balance of screening has "a negative impact on women and turns them away from the screening examinations".

The increase of participation in organized screenings for cancer is included in the ten-year strategy to fight cancer, to be recalled.
Nevertheless, the Institute addresses the risks of screening, writing that in "10% to 20% of cases, some tumors will not progress or only slightly, but today it is not possible to differentiate them from those that will aggravate" and that repeated exposure to X-rays is likely to lead to a very small number of so-called "radiation-induced" cancers.

In 2016, following the citizen and scientific consultation on breast cancer screening, several organizations,  notably the independent medical journal Prescrire and the Cancer Rose collective, called for more objective information to be provided to women  (see release of 04/10/2016 at 12:44).
INCa had updated their communication and in 2017 published an information booklet entitled "Breast cancer screening: get informed and decide" and then put online a website dedicated to screening. These two sources of information can be accessed at the very bottom of INCa's new Fake News page.

Reacting in a press release to the Inca Fake news page on breast cancer screening, the Cancer Rose collective judges that "refusing to debate, reducing any contradiction to the rank of fake news is unworthy of scientists and scandalous from an institution in charge of informing about cancer ». The collective asks for the withdrawal of this page from the INCa website.

When contacted by APMnews, Bruno Toussaint, editorial director of the independent medical journal Prescrire, said that the information provided on the INCa's Fake news page is "not balanced".
He deplored that the reference to the Inca booklet with the indication :”To answer the questions that women have about this screening and to enable them to decide, with full knowledge of facts, whether or not to participate in organized breast cancer screening" appears at the very bottom of the new Fake news page.

He recalled that, while screening was useful to many women, it was unnecessary and harmful to others.  An observational study based on an American registry established in 2015 that the treatment of ductal cancers in situ, which represents about 20% of breast cancers detected by mammography, does not reduce mortality from breast cancer, which had led a spokesman for the American Cancer Society to recognize that the treatment of these ductal cancers in situ is "excessive", to be recalled (see release of 21/08/2015 at 11:31).

In 2019, the journal Prescrire published a "Fact Sheet on Breast Cancer Screening " summarizing what is known about the benefit-risk balance of organized breast cancer screening". In women aged 50 to 69 years with no increased risk of breast cancer, the benefit of systematic cancer screening is uncertain," the Journal stated in introduction.
It highlighted that out of 1,000  women aged 50 to 70 years participating in mammography screening every two years for 20 years, there are 1,000 abnormal results resulting in 150 to 200 breast biopsies and the diagnosis of 75 cancers.

 Among these 1,000 women, at most 6 avoid death from breast cancer, a few have less severe treatment than if they had not been screened, but 19 are diagnosed and exposed to the undesirable effects of the treatments without benefiting from them because their cancer would never have progressed and 15 women have a cancer not detected by screening.

Virginie Bagouet-apmnews
APM International

Read our press release

Read article in Humanité Dimanche

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.

Cover up that controversy, which one can’t endure to see

BREAST CANCER / « Cover up that controversy, which one can't endure to see »*

*the title alludes to the literary expression of famous Molière, « Cover up that bosom, which I can't endure to look on », showing the religious hypocrisy of Tartuffe.

L'Humanité Dimanche of July 8 to 21 courageously denounces, in a piece entitled « COVER UP THAT CONTROVERSY, WHICH ONE CAN'T ENDURE TO SEE” , the witch-hunt initiated by the National Cancer Institute to hide from the population the existing controversy on breast cancer screening.

Find the facts here:

https://cancer-rose.fr/en/2021/06/24/press-release-cancer-rose/ which led this institute to build the idea of a "CSA of health" in order to "eliminate" a worldwide scientific debate, and especially the existence of divergent studies freely qualified as "fake-news". This is integrated in the "roadmap" of the INCa for the ten-year strategy of the future cancer plan.

The article in HUMANITE-DIMANCHE reminds us that this institute, bound to neutrality, has still not responded to citizens' expectations formulated in the 2016 report on screening consultation, in which we can read, on page 133, the request for a halt to this screening as it is currently carried out, and at least the provision, for women, of information also concerning the damage of this screening, instead of the current very optimistic presentation.

Women must be able, on the basis of good information, to accept or refuse screening, without feeling guilty.

The author of this article, Ms. Anne-Corinne Zimmer, rightly reminds us that "it took the mobilization of the magazine Prescrire, Que choisir organization,  the Cancer rose collective, etc., to push the INCa to introduce few phrases of information on the benefits-risks balance ».

In 2021, therefore 4 years later, the National Cancer Institute, whose role is to inform the public, has still not published a real neutral information tool for women on the benefit-risk balance of screening, it conceals over-treatment and still minimizes the number one problem of screening, which is not radiation-induced cancer, that INCa puts forward as a shield on its "enlightenment" site, but it is the over-diagnosis, which according to modern studies, could well concern one cancer out of two detected.

As the writer of the article very bravely concludes:
“Wanting to silence all controversy can only lead to more and more distrust among the population.”

The article, translated

Author: Anne-Corinne Zimmer

L'HUMANITE DIMANCHE, 8 to 21 July 2021

BREAST CANCER / « Cover up that controversy, which one can't endure to see »*

*the title alludes to the literary expression of famous Molière, « Cover up that bosom, which I can't endure to look on », showing the religious hypocrisy of Tartuffe.

Organized screening remains at the heart of the strategy to fight breast cancer for the next decade. The National Cancer Institute (INCa), the dedicated french governmental agency and committed to neutrality, has set up a website to fight against everything it considers as "fake news" on the subject.  At the risk of ignoring  plural information on a procedure that has been debated for 20 years.
Silencing the scientific controversy that has existed since the 2000s on the issue of organized breast cancer screening by mammography, is on the roadmap of the National Cancer Institute's (INCA) strategy for the next ten years (1).

Indeed, this is not stated in this way, but it is well mentioned in the national strategy for the fight against cancer 2021-2031: action 1.2 refers to "the set up of a reactive system to combat fake news".   This system is already effective with the launch of the website “Enlightenments” (2) in early June 2021, on which one will search in vain for studies diverging from the Institute's position in favor of organized breast cancer screening alone. Yet the controversy has existed for decades around the world.

The INCa further adds in its roadmap : "A reactive anti-fake news system will be structured (...). It is important to better inform public opinion, especially by using data that makes tangible the effects of prevention (international benchmarks, results of studies...). In addition, without being limited to the field of cancer, the creation of a "CSA Health"**type system will be studied, to implement rules for information in health, provided in a framework agreement with content hosts (media, social networks) to do a work of eliminating fake news identified by a college of experts."

**CSA is the French acronym of “Conseil Supérieur de l'Audiovisuel », which is the French regulator of audiovisual.

FAKE OR DIVERGENT STUDIES?

"A priori it seems to be a good idea," recalls Jean Doubovetzky, doctor and member of the collective Cancer rose, non profit organization for the information of women on the organized screening of breast cancer, except that "to appoint a college of experts who would have the power to decree that an information given in any field of health is a fake news, and to impose to the media and to the social networks its elimination, in other words its censorship" it is at least a strange idea. Therefore, how can one keep a critical thinking, if research and studies diverging from INCa's opinion are not presented?

FORGOTTEN RECOMMENDATIONS

And the precedents do not plead in favor of the INCa. At the end of the 2016 citizen consultation, which included a panel of scientists and a panel of citizens (see below), both recommended stopping organized screening and, as a second option, recommending that organized screening be stopped as currently practiced and to be completely reviewed - supported in particular by clear information for women on the benefits and risks balance. In the final report of consultation (3), the first recommendation is " to take into consideration the controversy in the information provided to women and in the information and training (initial and continuous) of professionals ", as well as " decision support tools to empower women to make their choice, i.e. to accept or refuse the invitation to participate in organized screening ".

11,000 TO 12,000 DEATHS PER YEAR

The citizens' panel of the orientation committee to improve breast cancer screening www. concertation-depristage.fr gathered in 2016 recalled that "(they) do not wish(wished) to keep the policy of organized screening as it is currently defined and applied” _, because it should be "accompanied by clear and neutral comprehensive information to understand the benefit-risk balance of participation and information tools for decision-making”. For the conference of professionals (researchers and physicians), they expected "a decrease in mortality from this cancer-which in France, from the 1960s to nowadays, is around 11,000 to 12,000 deaths annually”.

Organized screening abandoned in Switzerland

The INCa responded: "Abandoning screening on the pretext that its tools are perfectible would be  (...) a nonsense", while ignoring the proposals.  Two years later, information on the benefit-risk ratio was still not included in the letter of invitation to organized screening received by women over 50 years of age.

It took the mobilization of independent medical journal "Prescrire", “Que choisir” organization, Cancer rose collective and of the doctor and columnist Dominique Dupagne (Atoute.org) to push the INCa to introduce few phrases of information, three years later ... and only about the risks of "radiation-induced cancer", which is just one of the aspects on the benefits-risks balance. When Switzerland, for example, abandoned the extension of the organized screening on the basis of a public consultation.

The decision aid guides and other tools for forming the judgment of population are ignored by this health agency. People should not only rely on INCa, on its hunt for "fake news" and its references to its own studies, but should make the effort to visit the WHO dedicated website (https://www.euro.who.int) or the Cancer rose website (cancer-rose.fr/ ), which provides information and brochures distributed with the invitation to the organized screening in countries other than France. Refusing a scientific and human debate, which is necessarily controversial, would not be a substitute for a prevention policy, since the arguments are on both sides.

Wanting to silence all controversy can only lead to more and more distrust among the population.

ANNE-CORINNE ZIMMER

(1) The implementation of organized breast cancer screening in France began in 2004.

(2) https://leseclairages.e-cancer.fr/le-depistage-du-cancer-du-sein-est-il-inutile-voire-nefaste/

(3) Report of the steering committee, citizen and scientific consultation (September 2016), p. 127. Available at www.concertation-depistage.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.

The cat knew it

Cancer Rose offers you a forum for citizens. You can also testify.

Testimony of Dr Granger, Châteauroux, July 2021

Story of Mrs AH, 75 years old

My secretary stops me at the beginning of the afternoon:

"I have added a patient to your list at the end of consultation... "
- Well…

Nothing more to say, that's the rule: if a woman "felt something" and wants to see me, it’s right away...That's how it is with the breast. She hesitated... dared to call... she wants to talk, now. As much as possible don't stop that momentum.

- What brings you here today ?...
- You have seen a friend, she told me that I could... I had surgery for a very small breast cancer in 1991 [she was 45 years old at the time, no one in the family had been concerned]... I have been medically followed for a long time. And then I stopped the surveillance: I was told before the intervention that the cancer was not visible on the mammogram. So why continue to do it ? I have the impression that I feel something there (she holds her right breast, under the collarbone), it's not at all in the same place…My friend says he doesn't feel anything, but I think he wants to reassure me. He has glaucoma problems... I told him I was going to the cinema. 
-You're going to the cinema?
-... Yes

At first glance, the right upper-inner quadrant is as if filled, while the symmetrical area on the left side is empty. The hand perceives a large indurated plate, as if frozen. The diagnosis is obvious. The initial lumpectomy scar, at the union of the lower quadrants, is very small, thin and flexible. It is definitely not the same place at all. Upon contact with the ultrasonic probe, another evidence.

- Do you see something?... 
- Yes
-...
-...
- How big is it?...
- It's about 2 cm... (...) How long has it been since you had a mammogram?
- I stopped... It hurts. I saw my gynecologist...it's been maybe 3 years...she told me she didn't feel anything, she asked me for a mammogram, I didn't get it. I'm tired of being sick. I'm a former nurse, I won't go to the hospital anymore. I won't go for any more tests unless I'm sick.

When the examination is over, she gets dressed. We'll say more.
- I think it's a repeat of the original problem...
- I knew it. 

Her look is direct, clear. 

-That's why I said I was going to the cinema. I didn't want to tell him unless I was sure.
A nurse once told me: "Cats can sense when their owner is sick, they stick to him". For some time now my cat has been sticking to me, so I understood. Now what to do?...
- You had a conservative treatment, and a radiotherapy, right?... 
- Yes
- The radiotherapy can only be done once...
- Yes, I know
- We have only one thing left to do : surgery. You need to have the breast removed.
- Yes. The sooner the better. I don't want a biopsy, I heard that cells can leave

I did not insist on the interest of this biopsy for the surgeon, on the "procedure", I had neither the heart nor the certainty. On the doorstep her final words:

- Thank you. At least you didn't tell me it was my fault... 
- ?... 
- How could anyone say that?
- Oh you know I've heard so many things!

That was my last consultation. Nothing afterwards to remove these words, these impressions. What does this mean for the teaching of Senology?

  • A woman "knows" when she has breast cancer. All women fear it, all women fear to feel it. Only those who have it really "know". Cats also know, their sense of smell guides them. You should always listen to your cat, its cuddle is a sure guide.
  • In the surveillance loop, there is always someone other than the woman herself, someone else who motivates her or makes her reluctant. We must enter this loop if we want to be useful. First of all, by not saying anything that could be misinterpreted, so we have to be several steps ahead of her.
    For example, don't say that "nothing was visible on the mammogram" because 20 years later this will be a demobilizing argument. Then by telling it like it is: this "tiny little cancer" minimized will become another demobilizing argument one day.
    The initial mammogram, which she had brought to me, although in silver technique in 1991, showed perfectly the cancer, its spicules and the retraction of the sub mammary fold.
  • It is important to remain calm and factual in the announcement. The genius of cancer is infinite, so there is no such thing as a " small " or " good " cancer (don't mistake the enemy for a friend), nor a cancer " that often becomes bilateral " (don't mistake a friend for an enemy). What unjustified prophecies that mask our ignorance! There is no "emergency" either, cancer is always a long story. Things will be named, defined and explained as the consultation progresses. These consultations take time, they do not happen in a waiting room or on a table corner. Radiologists who no longer see their patients and refer them to their imaging site have paradoxically made a wise decision: it prevents them from saying what they don't know!...
  • It is necessary to offer an alternative to mammography for screening or surveillance. This examination is often painful, invasive, and not very informative, since it is usually completed by an ultrasound. Ultrasound which should explain what cannot be seen or understood with X-rays... Ultrasound is indeed an alternative, in trained hands: it could even be sufficient in most cases, for screening and monitoring, but this is another debate. The ultrasound alternative, which is widely implemented, would prevent clinicians and imagers from making women feel guilty by telling them that "it's your fault" or "you had it coming," "why didn't you get the mammogram you were asked for? ".
  • Remember the last words on the doorstep, they are the most important ones, the ones that could not be uttered earlier, and which are truly liberating: this woman, despite the shock of the announcement, was grateful: I had not accused her.

Cancer Rose Comments

This testimony has caused a lot of reactions, and we receive many questions and comments from our readers. Hence this short deciphering:

The patient's strongest message is that of being tired of surveillance, because to continue surveillance is to continue to be sick. 
The examinations are necessary when you are sick, that's what the patient expressed. 
This is an interesting point in the context of screening women with no symptoms, forgetting that screening is intended for healthy people, who have no complaints.
Here the situation is different in that the patient has been ill and has developed cancer, a situation for which annual monitoring is actually recommended, but this is her opinion, and the opinions, choices and preferences of patients must be heard.

The doctor's strongest message: refusal to accuse, refusal to make patients feel guilty. The patient liked that the doctor did not blame her ("you had it coming, you should have done your follow-up"; this is what women hear, although it cannot be said that this would have changed the situation much).
Gratitude of the patient for a too rare attitude of the medical profession: not to reproach a patient for a defect of a monitoring which she judged too long, tiresome, uncomfortable and distressing. 
This removal of guilt is extremely important, because we also see this feeling of guilt in healthy women who do not undergo screening, even though they are not suffering from anything.

On the substance, the doctor is right to point out that "the genius of cancer is infinite, so there is no "small" or "good" cancer". In fact, it is impossible to know if this is a recurrence of the disease, so long after, or if it is a new disease (another location in the breast than the first), if the mammo would have changed much (discovery of the mass immediately voluminous). It is also impossible to eliminate an induced disease (multiplication of mammograms, second radiation-induced cancer since it occurred in the same treated breast, long afterwards).

One will never know, hence the importance of respecting the choice of the patient, to leave the pattern "cancer, sooner taken better is", because, as the colleague writes it, the evolution of cancer does not work according to this automatismpre-...designed by an intellectually comfortable theory (read: https://cancer-rose.fr/en/2020/11/30/how-does-a-cancer-develop/)
Looking for alternatives to the sacrosanct mammogram in which so many hopes are based and yet which "misses" genuine cancers is also a line of reflection.

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.

Other information tools

Harding Center of literacy

Download / Télécharger

Harding Center for Risk Literacy, University of Potsdam, Faculty of Health Sciences

https://www.hardingcenter.de/en/early-detection-of-cancer/early-detection-of-breast-cancer-by-mammography-screening

5 out of every 1,000 women aged 50 and over without screening and 4 out of every 1,000 women with screening died from breast cancer over a time period of approximately 11 years.
The numbers in the fact box are rounded. The numbers are calculated from eight studies that included a total of about 600,000 participants [1].
Screening did not affect the total number of deaths when all potential causes of death are considered. About 84 out of every 1,000 women died in total, independent of whether they were screened or not.
Furthermore, women who receive false alarms (positive test results that turn out to be false positives) can suffer from psychological distress, including anxiety and uncertainty, for years afterward [1].
A positive result from a mammography does not automatically mean that a woman has cancer. Mammography screening also detects preliminary stages of breast cancer, such as ductal carcinoma in situ (DCIS), which is characterized by abnormal cells in the mammary ducts that have not spread to other tissue (non-invasive). In some women DCIS remains harmless; in others it develops into an invasive tumor, which can be life-threatening [4].
Any screening can lead to overdiagnosis. In the case of breast cancer, this means that women are diagnosed with breast cancers that would have remained undetected without the screening. One instance of these are small tumors that grow slowly or not at all (non-progressive cancer) and might never have caused any complaints. Because it is difficult for physicians to assess whether a tumor will continue to grow, they often advise their patients to receive treatment.
Overdiagnosis often leads to overtreatment, which means unnecessary surgery or radiation [4].

[1] GøtzschePC, JørgensenKJ. Dépistage du cancer du sein par mammographie. Cochrane Database Syst Rev2013(6) doi : 10.1002/14651858.CD001877.pub5.
[4] IQWIG. Einladungsschreiben und Entscheidungshilfe zum Mammographie-Screening 2014. [www.iqwig.de/de/projekte-ergebnisse/projekte/gesundheitsinformation/p14-03-einladungsschreiben-und-entscheidungshilfe.2019

OMS - a short guide about screening programmes

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WHO Screening programmes: a short guide. Increase effectiveness, maximize benefits and minimize harm. Copenhagen: WHO Regional Office for Europe; 2020.
https://www.euro.who.int/en/publications/abstracts/screening-programmes-a-short-guide.-increase-effectiveness,-maximize-benefits-and-minimize-harm-2020

« Screening programmes should provide unbiased and easy-to-understand informa­tion so that people can make an informed decision on whether to participate in screening.
Both laypeople and clinicians tend to overestimate the benefits of screening and underestimate the harm of screening. Training personnel on communicating risk and tools such as infographics, videos and decision aids can be used to facilitate understanding and promote informed consent and evidence-informed practice (Fig. 15, p38). » « Fig. 15. Use of infographic to illustrate overdiagnosis in breast cancer screening, » (Above)

CanTaskForce

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Cantaskforce - Canadian Task force on Preventive Healthcare, established by the Public Health Agency of Canada 
https://canadiantaskforce.ca/lignesdirectrives/lignes-directrices-publiees/cancer-du-sein-mise-a-jour/?lang=fr
« Low-certainty evidence indicates that screening for breast cancer with mammography results in a modest reduction in breast cancer mortality for women aged 40 to 74 years with the absolute benefit lowest for women less than 50 years of age. Screening leads to overdiagnosis resulting in unnecessary treatment of cancer that would not have caused harm in a woman’s lifetime, as well as physical and psychological consequences from false positives. »

« Screening is a personal decision. It is important to understand and weigh the benefits and harms for women in your age group (as shown below) with your health care provider. This will help you get a better understanding of the issues so that you can decide what is best for you. Some women may wish to not be screened if they are concerned about potential harms. »

Canada Booklet

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Information on Mammography for Women Aged 40 and Older: A Decision Aid for Breast Cancer Screening in Canada” is a product of the Canadian Breast Cancer Screening Initiative (CBCSI). The CBCSI is a part of the Canadian Breast Cancer Initiative. The Initiative includes the Public Health Agency of Canada, provincial/territorial breast screening programs, professional associations, non-governmental organizations, and women. 
https://www.prhc.on.ca/wp-content/uploads/2020/02/Information-on-Mammography-Decision-Tool.pdf

Australia (Breast Cancer Screening, it's your choice)

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Breast cancer screening decision aid for women aged 50, updated in 2017
Its' your choice
Authors: Jolyn Hersch, Members of the Screening and Test Evaluation Program at The University of Sydney

Abstract: Why is there a decision to make about having breast cancer screening? Many people think screening for early signs of breast cancer is always a good thing. But breast screening has advantages and disadvantages. This booklet is designed to help you make an informed choice about whether you would prefer to have screening or not.This booklet was developed in 2013 by members of the Screening and Test Evaluation Program at The University of Sydney, Australia. It was developed and evaluated as part of a research study which has been published in the following article: Hersch J, et al. Use of a decision aid including information on overdetection to support informed choice about breast cancer screening: a randomised controlled trial. Lancet 2015; 385: 1642. The booklet was updated in 2017 to reflect the extended age range for screening.

https://ses.library.usyd.edu.au/bitstream/handle/2123/16658/2017%20updated%20breast%20screening%20DA%20(Hersch%20et%20al).pdf;jsessionid=F0396C69AD95F6431008EA16CB3B9195?sequence=1

United Kingdom

This leaflet was developed by an independent team of information experts at King’s Health Partners, with advice and writing support from Cancer Research UK. Through a public consultation, over 1000 members of the public contributed to developing the approach to information about the NHS cancer screening programmes. The information in this leaflet used recommendations from a citizens’ jury of 25 women about how to present the possible benefits and risks of breast screening.
Process described here :
Forbes, Lindsay JL, and Amanda-Jane Ramirez. “Offering Informed Choice about Breast Screening.” Journal of Medical Screening, vol. 21, no. 4, Dec. 2014, pp. 194–200, doi:10.1177/0969141314555350, https://journals.sagepub.com/doi/pdf/10.1177/0969141314555350
Complete leaflet

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NHS Breastscreening - Helping you decide
https://www.gov.uk/government/publications/breast-screening-helping-women-decide/nhs-breast-screening-helping-you-decide

« It is your choice whether to have breast screening or not. This leaflet aims to help you decide. »

US-US Preventive Services Task Force

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https://jamanetwork.com/journals/jama/fullarticle/2040228

Breast Cancer Screening: Benefits and Harms 

Author : Jin Jill
JAMA Patient Page
JAMA. 2014;312(23):2585. doi:10.1001/jama.2014.13195
Balancing Benefits and Harms
The pros and cons of breast cancer screening are different for everywoman.
Eachwoman also has different personal values, especially toward the idea of unnecessary
medical tests and treatments.

Germany

Brustkrebs-Früherkennung – Herausgeber: Techniker Krankenkasse, Hauptverwaltung: 22291 Hamburg; in Kooperation mit dem Nationalen Netzwerk Frauen und Gesundheit. Internet: www.tk.de. Konzept + Text: Dr. Eva Schindele, Bremer Medienbüro. Wissenschaftliche Beratung: Prof. Dr. med. Ingrid Mühlhauser, Universität Hamburg, 2013

http://www.nationales-netzwerk-frauengesundheit.de/downloads/BrustkrebsFrueh_Internet.pdf

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Text EN, page 17-18

Earlier diagnosis does not always lead to a longer life span. As this model calculation shows, in this case only the time of diagnosis was brought forward, thereby extending the disease phase by three years. In both cases, the woman dies at the age of 65.

"The earlier breast cancer is detected, the better." You can read this sentence everywhere, and it makes sense at first glance. But isn't it true?

Prof. Dr. Ingrid Mühlhauser , Hambourg University:  “Early detection only has an advantage if early therapy can prevent death from breast cancer. However, according to current knowledge, early detection mammography mainly detects forms of breast cancer that often would not have had a worse course of disease if they had been detected later. In contrast, particularly malignant forms of cancer are often not detected by mammography in time to avert death. Only the time of diagnosis is brought forward and thus the period of time in which the woman lives as a breast cancer patient is extended.”

What does it mean for women when the time of diagnosis is brought forward?

Prof. Dr. Ingrid Mühlhauser : “Imagine that breast cancer is diagnosed at the age of 60. The affected woman dies of the cancer five years later, at the age of 65. With early detection mammography, the cancer could possibly be detected three years earlier, i.e. at the age of 57. If this woman then dies at the age of 65, early detection would not have prolonged her life. It would only have prolonged her time as a breast cancer patient and possibly her period of suffering.”

Norway

https://www.kreftregisteret.no/en/screening/BreastScreen_Norway/Benfits-and-harms/

BreastScreen Norway is a voluntary programme where women between 50 and 69 years are invited to have a breast cancer check in the form of a mammogram (X-ray imaging of the breast) once every two years.

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Perception and reality

How women perceive screening data, guided by optimistic slogans and presentations, versus reality https://cancer-rose.fr/en/2020/12/18/perception-and-reality-2/
Reference: Biller-Andorno, Nikola; Jüni, Peter Abolishing Mammography Screening Programs? A View From the Swiss Medical Board, Obstetrical & Gynecological Survey: August 2014 - Volume 69 - Issue 8 - p 474-475
doi:10.1097/01.ogx.0000453825.77352.6b

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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.