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.

Press Release – Cancer Rose

June 2021

The National Cancer Institute censures and qualifies  as "fake news" information in health that does not follow the official direction line.

In May 2020, about thirty French editorial societies denounced "with the greatest firmness" the section entitled "Fake news Coronavirus" launched by the Government (1).

The French journalists argued that "the State is not the arbiter of information".
This site was removed, a few days later.
The lesson has obviously not been learned.

Thus, today in the same logic, the National Cancer Institute (2) has decided to study the creation of a "CSA of Health" (CSA is the acronym of “Conseil Supérieur de l'Audiovisuel », French regulator of audiovisuel)  in order to "establish rules in the field of health information”.

This “CSA of Health device will not be limited to the field of cancer”, and will therefore concern all health blogs, all doctor bloggers on social networks (websites, twitter, facebook) and all health articles in the media (online press). This decision is foreseen in a framework agreement with the hosts of content (media, social networks) to do a "work of elimination of the fake news identified by a college of experts."

The device to fight against "fake news" is already in place, part of the actions started in 2021. INCa is leading this action as indicated in the roadmap of the Cancer Plan decennial strategy 2021-2030 (Action file I.2., Action I.2.3, page 10, "Setting up a system to combat against fake news") (3).
Thus, in order to implement this action immediately, the French National Cancer Institute qualifies from the start as "Fake news" the international controversy that exists on the benefits-risks balance of breast cancer screening.
This can be found on the INCa website under the tab : "Enlightenment: the information behind fake news" which also presents the graphic charter of  the French Republic (4).

The National Cancer Institute has always disseminated partisan and promotional information on breast cancer screening, emphasizing the effectiveness of screening by minimizing overdiagnosis and its serious consequences (overtreatment).

By decreeing that "the information on scientific debate can have a negative influence on women ...", INCa follows the same logic as the State in the affair of the site site "Désinfox Coronavirus": to arrogate a role of censor in the media production, and to grant a conformity to the only media which will deliver the information selected by the "experts" of the Institute.

By qualifying as “fake news” any scientific contradiction, by designating as "fake news" information that does not go in the official direction, by having "experts" do "an elimination work" of all that it considers contrary to its own communication, INCa will simply exercise censorship, in a country where freedom of expression and freedom of press are fundamental.

[1]https://www.lemonde.fr/actualite-medias/article/2020/05/05/le-gouvernement-supprime-sa-page-controversee-desinfox-coronavirus_6038753_3236.html

[2]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

[3] https://www.e-cancer.fr/Institut-national-du-cancer/Strategie-de-lutte-contre-les-cancers-en-France/La-strategie-decennale-de-lutte-contre-les-cancers-2021-2030/Le-lancement-de-la-strategie

[4] https://leseclairages.e-cancer.fr/

[5] https://cancer-rose.fr/en/2021/03/08/ou-en-sommes-nous/

Read more :

https://mypebs-en-question.fr/actus/infox_en.php

https://mypebs-en-question.fr/actus/censure_en.php

https://mypebs-en-question.fr/actus/infox_fond_en.php

https://mypebs-en-question.fr/actus/inca_conflit_interet_en.php

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.

Cancer-rose – Press release June 2021

June 22, 2021

Website page "Enlightening information behind the fake news » set up by INCa - An unacceptable rubric on breast cancer screening

The French National Cancer Institute (INCa) has always adopted a partisan presentation of the benefits-risks balance on breast cancer screening, emphasizing the effectiveness of screening, although subject to contestation at international level, and minimizing risks of screening, despite of citizen consultation demands in 2016.

Currently, Professor IFRAH, the president of INCa, who is supposed to promote fair information, without bias, enabling women to make their informed decision, launches "the new rubric of INCa to fight against fake news ".

On the page regarding breast cancer screening,  questioning the benefits/risks balance of breast cancer screening is qualified as being "fake news". 

It is stated: "This scientific debate may have a negative impact on women and turn them away from screening", implying that a scientific debate could be similar to fake news.

Then, an assertion is made without discussion and without nuance of the pretended proven benefit of this screening, on the basis of "proofs" quoted in references which are... a report, a leaflet and a brochure all issued by this Institute. No source of independent scientific study is mentioned.

To deny the worldwide contestation around this screening, to refuse the debate, to downgrade any contradiction to the rank of fake news is unworthy of scientists and scandalous from an Institution in charge of informing about cancer.

Will the next step be the censoring of publications that contest or make unfavorable comments on screening, relayed in the media?

We request that this article on breast cancer screening to be removed from the National Cancer Institute's page website « Enlightening information behind fake news », because it is outrageous, insulting to the media, to scientists and to women who are fighting for an informed choice and no manipulation regarding breast cancer screening.

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.

INCA : from bad surprises to bad surprises

By Dr M.Gourmelon, June 22, 2021

INCa France: French Cancer Institute

Act 1

The citizen consultation of 2015 raised the question of breast cancer screening in France.This high-quality work resulted in a 166-page report [1] [2].
The recommendations of the steering committee were unambiguous (p133 of this document):

Translation:

« The committee proposes two scenarios for making breast cancer screening strategy to evolve and for achieving the same objective: enabling the implementation, in the coming years and with validated technological tools, of a screening strategy adapted to the level of risk. To reach this objective, the committee has made the above recommendations and proposes two ways to achieve this through one or the other of these scenarios :

  • Scenario 1: Termination of the organized screening program, the relevance of a mammogram being assessed in the context of an individualized medical relationship.
  • Scenario 2: Discontinuation of organized screening as it exists today and implementation of a new organized screening, profoundly modified.

Despite the clarity of the recommendation, Professor IFRAH scandalized the French medical community by denying these findings:

"The letter from the President of INCa, which is attached to the report and is supposed to summarize the report for the Minister, is edifying. Norbert Ifrah violently denigrates the first scenario. He states that "by the very admission of the report's authors"... it would be "very risky, generating inequities and loss of chance". These words are not found in the report! According to the president of INCa, "abandoning the screening program" would be "a nonsense"[3].

Act 2

Publication of the "Information booklet on organized breast cancer screening", updated in August 2017[4].
But also " Guidelines for general practitioners " " Breast cancer, from diagnosis to follow-up " (March2016). [5]

This booklet obtains a score of 6/20 when it comes to the quality of the information it provides[6].
The guidelines for general practitioners are also of "poor quality."[7]

It should be noted that these two documents, which were supposed to contain objective information on breast cancer screening by mammography, are still in effect today, June 2021, on the INCA website.

Since 2016 and March 2017, the INCA has not made the slightest revision to its documents.
Yet the INCA as a governmental health agency has a duty to provide non-partisan information.
Nevertheless, the INCA cannot ignore the strong criticisms that are addressed to it.

Thus in April 2018, in the face of the "deafness" of the INCA to these criticisms, an independent collective associating organizations ( Cancer-Rose, Que Choisir, Le Formindep, the Princeps group) and a doctor blogger editorialist on France Inter Dr. Dominique DUPAGNE, published a press release entitled "INCa provides women with incomplete and biased information on the advantages and disadvantages of following the organized breast cancer screening. "[8]

Act 3

On June 16, 2021, INCa launches "the info behind the fake-news". [9]

This is relayed by the press. [10]
Professor IFRAH, still president of INCa, presents "INCa's new heading to fight against fake news" in these terms:

"Infox, fake news or even rumors, whatever name we give them, this false information can have dramatic consequences when it concerns the health of our fellow citizens.

Unfortunately, the area of cancer does not escape it. Faced with the multiplication of these fake news, the National Cancer Institute has created this webpage to help you find out why they are false and to better understand their dangers.

Pr Norbert Ifrah, president of the National Cancer Institute. "

The press release states [11]:


"Protecting the health of our fellow citizens in the face of the development of fake news in the field of cancer"

"If some of them, unfortunately well anchored, can be characterized as "far-fetched", as for example the wearing of the bra supposed to cause breast cancer, others represent a real danger for the patients who base their hopes of cure on them. "

"This device is part of the actions of Axis 1 "Improving prevention" of the ten-year strategy to fight cancer 2021-2030, launched on February 4 by the President of the Republic. "

"Each topic proposed in this section is based on a previously identified fake new. Its deciphering follows a path that enables us to apprehend its origin, to understand why it is classified as false information and its dangerousness for each of us. "

"From June 16, the National Cancer Institute is running a campaign on digital and social networks. Its objective: to allow everyone to access the decoding of false information in the field of cancer.  This campaign, which will run until mid-December 2021.... "

Who could not agree with the fight against false information? Nobody.

Unfortunately, in this section, from the very beginning, next to the famous "Far-fetched Infox" of cancer caused by wearing a bra, INCa presents the question of the interest of breast cancer screening by mammography as being an Fake new, for which it wants to demonstrate the danger[12].

We are not going to detail and analyze this page here. We will come back to it in a dedicated article.

No, what is shocking is that the INCa attributes the qualifier "Fake new" to the scientific debates that for years have been analyzing the relevance of breast cancer screening by mammography, its benefit/risk balance.

"This scientific debate may negatively impact women and turn them away from the screening exam. "

Under the pretext of "protecting the health of citizens," INCa "insults" all international scientists, the media that relay them, and all those who participate in the debate.
Moreover, as we detail in our website [13], studies that question the benefit of screening are currently more numerous than those that manage to demonstrate its usefulness.

For many years now, INCa has been "blind and deaf" [14] to everything that is scientific, to independence, to the ethics of information [15], to the exhaustiveness of information and the need to provide women with independent and reliable information in order to make an informed decision about whether or not to undergo screening.

Today, INCa is taking its "indignity" one step further.

Conclusion

This new step taken by INCa is particularly shocking for all those for whom the scientific method is not an empty word.

Scientific debate does not accept the denigration by one "camp" of those who have a contrary opinion.

The "truth" in science and medicine is enriched by debate, not by insults.

INCa believes it has the "truth" on the subject of breast cancer screening by mammography. This does not give it the right to behave as it has done for years, disregarding the debate and now resorting to unworthy denigration.

We don't know what the future will bring, but we are very concerned because today the red line, which has been crossed for many years as mentioned at the beginning of this article, has been largely left behind by INCa.

References

[1] http://www.concertation-depistage.fr/

[2] http://www.concertation-depistage.fr/wp-content/uploads/2016/10/depistage-cancer-sein-rapport-concertation-sept-2016.pdf

[3] https://formindep.fr/cancer-du-sein-la-concertation-confisquee/

[4] https://www.e-cancer.fr/Expertises-et-publications/Catalogue-des-publications/Livret-d-information-sur-le-depistage-organise-du-cancer-du-sein

[5] https://www.e-cancer.fr/content/download/164989/2115178/file/Cancer-du-sein-Du-diagnostic-au-suivi-20161129.pdf

[6] https://cancer-rose.fr/2018/02/11/10552/

[7] https://30ansplustard.wordpress.com/2017/01/04/comment-linca-prend-les-mg-pour-des-cons/

[8] https://drive.google.com/file/d/1mxRrPz7VE-SifeQ-lha6lYjuQyAUbfWL/view

[9] https://leseclairages.e-cancer.fr/

[10] https://destinationsante.com/cancers-linca-part-en-guerre-contre-les-fake-news.html

https://fr.news.yahoo.com/cancers-l-inca-part-guerre-103158638.html

https://www.sudouest.fr/sante/cancers-l-inca-part-en-guerre-contre-les-fake-news-3788939.php

[11] https://www.e-cancer.fr/Presse/Dossiers-et-communiques-de-presse/Les-eclairages-de-e-cancer.fr.-L-info-derriere-l-infox-la-nouvelle-rubrique-de-l-Institut-national-du-cancer-pour-lutter-contre-les-infox

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

[13] https://cancer-rose.fr/en/category/informations-en/studies/

[14] https://pratiques.fr/Aveugles-et-Sourds

[15]

 

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 Guide to Health and Medicine from the GIJN

5 June 2021

Cécile Bour MD

Re-Check

ReCheck is an independent investigative media specializing in the backstage  of health affairs and issues.

It was founded by two investigative journalists, Catherine Riva and Serena Tinari.

Catherine Riva, a Swiss investigative journalist, is the author (among others) of the book "La piqûre de trop"  on the anti-HPV vaccination, published by Xena, and of the Mammograben files on the mammography screening business in Switzerland. Catherine Riva was also one of the reviewers of our information leaflet.

Serena Tinari is an Italian investigative journalist who has (among other things) worked for the media Patti Chiari, a weekly news magazine on citizens' and consumers' rights of the Italian Swiss public television RSI.

In the past, we have relayed one of their programs [1] on mammography screening with a guest speaker, Professor Michael Baum, surgeon and professor emeritus (University College London), who is an advocate of informing women about the benefit/risk balance of mammography screening and has published [2] and taken positions in this regard.[3] [4] 

In addition to a different and, above all an independent approach to information, Re-Check also offers training and conferences on the investigations conducted by these two journalists, as well as access to GlobaLeaks, an anonymous platform for whistleblowers to transmit confidential information in the field of medicine and public health.

Novelty of Re-Check

This year's novelty is the "A GIJN Guide. Investigating Health  and Medecine »  elaborated by Catherine Riva and Serena Tinari, for journalists covering health issues, in French version downloadable here.

GIJN is the acronym for the Global Investigative Journalism Network, a group of international journalists committed to the development and sharing of information and data among investigative journalists around the world, while promoting good journalism practices and open access to documents and data.

The guide

What is this guide and for what purpose? As explained on the homepage this guide addresses  the issues of « drug development and approval, evaluating scientific studies, understanding conflicts of interest, and exposing fraud and malpractice. It’s a road map for going beyond the claims of corporate press releases and government officials ».

Clearly, it is about unraveling the claims of medical "experts" and opinion leaders, and allowing journalists to decipher scientific studies. According to the two authors' presentation, the creation of this guide appears to have been motivated by the difficulties encountered by journalists during the Covid pandemic, and their disarray in front of medical information that was developing at an unsustainable rate. The preface is specifically dedicated to this issue.

The guide consists of a preface, an introduction, five main chapters (Regulating drugs : Dévelopment and Approval, A study is not just a study. Get your numbers straightThe Scientific Basis of Influence, First do not harm. Reporting about safetyTips and traps, Hypes and Ethics) and appendices.

A study is not just a study. Get your numbers straight

This chapter, number 2, caught our attention because it is in line with the concerns of Cancer Rose.

EBM

It is reminded here that EBM, or evidence-based medicine, should be at the center of a journalistic investigation, applying the principle of critical reading (the process of carefully and systematically evaluating the results of scientific research on the basis of evidence, to judge its reliability, value and relevance).

Evidence-based practice should lead the investigator to assess the relevance of certain elements according to the PICO method (P = check whether the patient's characteristics are suitable for the research being conducted; I = the treatment or test, e.g., screening; C = the comparator, which may be a placebo or another treatment or test; O = outcome, i.e., the measurement element or judgment criterion used in the study, which may be a rate of mortality, a rate of survival, a rate of serious illness, a therapeutic improvement, etc.)

It is interesting and even essential to be aware of this prerequisite in order to avoid analyses of studies as one can sometimes read in certain magazines or newspapers beginning with : "a large study concludes that...", or "Professor X, an expert in the treatment of disease Y, believes that..."

Levels of evidence

This chapter also reminds us that not all mediated studies are equal, and present a remarkable diagram illustrating the hierarchy of studies according to the level of evidence, which is very useful for assessing the validity of a study.

Part of the chapter explains the temptation to confuse correlation with causality, a mistake very often made, not only by journalists but sometimes by doctors and scientists themselves. It is not because two events are concomitant that they are necessarily related by cause and effect.

Presentation of data

Good advice is given concerning the use of absolute values, rather than percentages, to judge the benefit-risk balance of a treatment or test.

In the area of breast cancer screening, which is our topic, there is a need to report the reduction in the risk of dying from breast cancer, in absolute values, rather than in relative values. We often underline this point and the French citizen consultation on breast cancer screening requested it in several parts of its report (e.g. page 79),

The mathematician Gerd Gigerenzer's demonstration presented by the authors in this second chapter of the guide is a good and very masterful example of how a percentage can be misleading. When women are told that breast cancer screening will reduce mortality by 20%, they understand that 20 out of every 100 women screened will die of breast cancer. This is not the case. Gigerenzer writes « Did the public know that this impressive number corresponds to a reduction from about five to four in every 1,000 women, that is, 0.1%? The answer is, no. »
(But this misrepresentation still persists in official brochures and documents from official websites. [5] [6]  )

A concrete example of misleading communication in the field of breast cancer screening

The Grouvid study

In November 2020, the Grouvid study was published and mediatized. It was done by modeling a scenario in the context of the Gustave Roussy Institute, to evaluate the consequences of delays in oncology care for patients due to the Covid pandemic. We reported on this here, as well as on a meta-analysis published in the BMJ that also points in this same direction.

The Grouvid study, like the BMJ study cited, suggested that the delays in patient care linked to the first wave of Covid-19, could be responsible for an excess of cancer mortality of 2 to 5%, 5 years after the start of medical care. According to the study, these delays in medical care are due to 2 factors:

- the reluctance of patients to seek care for fear of contamination
- and a reduction in the capacity of hospitals to provide care.

Nowhere in this study was screening discussed, not breast cancer screening or any other screening.

However, the media made the confusion and abundantly relayed that delays in screening were the cause of excess mortality in oncology, and in particular for breast cancer [7] .  This was false information.

Conclusion

Investigating the healthcare industry can be really complex and difficult as a journalist.
Covering a health field, whatever it may be, certainly requires devoting a lot of time to it, training, acquiring specialized scientific notions, such as basic knowledge of epidemiology and statistics, and reading a lot of specialized literature, as well as mastering the scientific jargon.

The urgency in communication, the pressure of editorial offices on positive communication in the field of breast cancer screening, the self-censorship of some journalists lead to disasters in the information of populations, to their detriment.

We have seen the approximation and the misunderstanding in the medical information during the Covid-19 pandemic, due to the journalistic subject itself, certainly complex, but also aggravated by the urgency of the situation and the haste of the media to publish.

The tools proposed by the Global Investigative Journalism Network's Guide to Investigating Health can only be a salutary asset for any journalist concerned with good health information, in order to avoid the confusion of the population in the face of an influx of information and counter-information, as we experienced during the pandemic, and to avoid exposing people to promising procedures or tests that will plunge them, through ignorance of the potential dangers, or through bad media coverage, into the hell of a disease.

It is a question of ethics, journalistic this time.

References

[1]https://cancer-rose.fr/2019/04/29/emission-tele-sur-lenjeu-du-depistage-par-la-revue-dinformation-italophone-patti-chiari/

[2]https://www.bmj.com/content/346/bmj.f385
Harms from breast cancer screening outweigh benefits if death caused by treatment is included
BMJ 2013; 346 doi: https://doi.org/10.1136/bmj.f385 (Published 23 January 2013)Cite this as: BMJ 2013;346:f385

[3] https://cancer-rose.fr/2019/03/25/lettre-de-michael-baum-the-times/

[4]https://cancer-rose.fr/en/2020/11/30/international-reactions-to-attempts-to-cover-up-screening-failure-in-a-publication/

[5]https://cancersdusein.e-cancer.fr/infos/pourquoi-les-autorites-de-sante-recommandent-de-realiser-un-depistage/

[6] In this regard, read our article: methods of influencing the public to participate in screening

Reduction of breast cancer mortality only expressed as relative risk reduction by the French national screening agency in the 2019 information brochure, this represents a method of influence used by the authorities to increase participation in screening. The authors point out that the use of these types of influence remains ethically dubious in cancer screening programs where the benefit-harm ratio is complex and scientifically contested.

[7] Non-exhaustive list of all the media that relayed this information to the public in a misleading manner:

https://www.francetvinfo.fr/sante/cancer/covid-19-les-retards-de-depistage-du-cancer-de-sein-vont-entrainer-une-augmentation-de-la-mortalite-entre-1-et-5-dans-les-dix-ans-qui-viennent-selon-la-fondation-arc_4124525.html#xtref=https://mobile.francetvinf

https://www.sudouest.fr/2020/10/24/cancer-du-sein-axel-kahn-lance-un-cri-d-alarme-pour-inciter-au-depistage-8000781-4696.php

https://fr.news.yahoo.com/octobre-rose-axel-kahn-implore-085353145.html

https://www.europe1.fr/societe/debut-doctobre-rose-axel-kahn-alerte-sur-les-retards-de-diagnostic-des-cancers-du-sein-3995432

https://www.topsante.com/medecine/cancers/cancer/covid-19-depistage-cancer-639344

https://www.la-croix.com/Sciences-et-ethique/Deprogrammation-doperations-Linquietude-immense-malades-cancer-2020-10-27-1201121508

http://www.francesoir.fr/opinions-tribunes/chronique-covid-ndeg34-le-geneticien-axel-kahn-president-de-la-ligue-contre-le

https://www.lemonde.fr/planete/article/2020/10/26/cancers-infarctus-avc-ces-pathologies-victimes-indirectes-du-covid-19_6057437_3244.html

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.

Sophie’s testimony

June 6, 2021

By Sophie, testimony and point of view

Ethics of screening, information for women, training of professionals on breast cancer screening: what is the strategy of the new Cancer Plan?

A testimonial

...Before age of 50, I had a breast cancer screening test prescribed by my doctor as part of a health check-up, for no particular reason, just to be reassured. I showed up at the radiology center with a simple prescription, without the least information on the radiation, nor on the additional examinations, or the consequences of the test in case of abnormality, just as I would have a blood test for a general check-up. I was not given any information about what they were really looking for in the absence of symptoms, nor about the fact that they will be using a super-powerful tomosynthesis technology that detects the smallest anomaly of a few millimeters, for which no one can tell the outcome, nor on the doses of radiation delivered by the ten x-ray images with enlargements, with a total dose (16.5 mGy) of radiation four times higher than the dose delivered by a classic mammographic examination (3-4 mGy), and that I will have to repeat in 6 months, then 12 months and then 24 months. If all goes well, if not something else will happen?

If I were to draw a parallel with a drug, I would have had an information leaflet listing potential side effects.  But a mammogram is considered a harmless, banal examination.  I don't have any doubt about my doctor's good intentions, but unfortunately the tests and the anxious waiting were  overwhelming, then came the regret of having  this exam which should better not have been done.
I should have been able to decide, with the right information, but I didn't have it.

I may be told that this is a test done to save my life, although studies by independent researchers from the Cochrane organization have shown that for every 2000 women invited for screening throughout 10 years, one will avoid dying of breast cancer and 10 healthy women, who would not have been diagnosed if there had not been screening, will be treated unnecessarily. 
Would I be that lucky one, although I did not feel in any imminent danger, I had no particular concern for breast cancer, nor any family history of it, I was not even 50 years old, which is the starting age for screening mammography in France? Or on the other side, could I be one of the other 10 women unnecessarily treated ? In any case, it was up to me to weigh the benefits and risks and choose. And it's not fair that I didn't get all this information in advance.

... Among close contacts of mine, a woman had a screening mammogram at her age of 72, without any information except invitation letters. She gave in to the reminder letters and decided to undergo the exam so that, she would be left in peace. Similarly, after the mammography followed additional tests and anxious waiting of results for the whole family, with regrets for having done this exam without being properly informed.

Once again, lack of honesty and transparency…

......Another woman I know, in her forties, with no particular risk factors, had pressure from her gynecologist to have a mammogram, with no particular reason, and  without receiving any information. She tries to hold on and hope to not upset her gynecologist, because it is difficult to find another one.

Where is the information?

And there are many such cases... Here, we are talking about healthy women with no symptoms suggestive of breast cancer. It’s not about women who have a symptom and who should consult, because in this case the mammography is necessary.

These cases show the lack of information and training of professionals, whether it is the GP, the radiologist or the gynaecologist, who focus on mammographic screening examinations to find existing, hypothetical or future breast cancers in healthy women, forgetting to inform them correctly and without taking into account their autonomy of decision.

And yet it could be done better. Information on the benefits and risks of breast cancer screening, in the case of a healthy woman with no particular symptoms, is a due to women: it is up to them to choose according to their own values and preferences if they wish to undergo it or not, especially since the benefits are not clear; the controversy between the benefits and the real damage has been going on for 40 years now.

This was also one of the first recommendations of the steering committee following the 2016 citizen and scientific consultation on breast cancer screening in France :  "The consideration of controversy in the information provided to women and in the information and training (initial and continuous) of professionals in this area, so that women concerned by breast cancer screening are provided with balanced and complete information, and that professionals involved in breast cancer screening are trained to acquire the relevant knowledge to accompany women, offering them adequate support to make their decision" (1).

Why women are not told the truth, why doctors do not humbly acknowledge their doubts about the appropriateness of this exam in the absence of any symptoms? They prefer to put forward benefits that they are not sure of, forgetting everything else, including informed consent and patient autonomy.

A new cancer plan, situation in France

The ten-year strategy of the new cancer plan has been adopted by decree (2).

We expected measures to improve information for women while respecting the autonomy of patients, as is done in Great Britain, Australia, Canada and Germany. Elsewhere, the objective is to inform and not to persuade, the emphasis is on the women's decision without making them feel guilty, by providing decision support tools, which correctly communicate risks in absolute numbers and not in percentages by minimizing them.

As for this decision aid in Canada (3) which states:

« Why is shared decision making important? 
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. »

Click to enlarge

Instead of developing such tools, in France the focus is on the number of screenings and the participation rate, without the slightest concern for informed consent, the objective of the Cancer Plan being "to achieve one million more screenings by 2025 for the three screening programs, including organized breast cancer screening and to exceed the coverage targets recommended at the European level in terms of screening and join the leading group in terms of adherence with a participation rate of 70% for organized breast cancer screening, while today the participation rate announced for 2018-2019 is : 49.3% + 10-15% (organized + individual). "((2), action sheet I.12, p.20)

And yet the rate of participation in screenings should not be a goal of these programs. The real goal should be related to informed patient decision. As danish researchers (Rahbek et al, 2021) point out, instead of evaluating cancer screening programs on the basis of participation rates, the measure of engagement could be the rate of informed decisions, regardless of participation or non-participation (4). The authors note that authorities assume that for most citizens, participation is the right choice. This view is not necessarily shared by informed citizens. Indeed, current evidence suggests that the more informed citizens are, the less likely they are to participate in cancer screening (4). (see also : https://cancer-rose.fr/en/2021/01/24/objective-information-and-less-acceptance-of-screening-by-women/ )

Yet the 2020 WHO guide (5) on screening provides very clear information on the principles to be followed. The guide points out that the risk of these measures to increase participation rates is that people's autonomy to make an informed decision is threatened.

To avoid this, the guide recommends taking care to enable informed consent and to protect individual autonomy.

However, none of the actions in the roadmap of the Cancer Plan address the improvement of information to the population on the benefits and risks of screening, as recommended by the WHO 2020 guide. Similarly, there is no measure on the training of professionals in risk communication as recommended by the WHO. Yet the WHO guide gives as examples tools such as infographics, videos and decision aids can facilitate understanding and promote informed consent as well as evidence-based practices. And it points out that both lay people and clinical physicians tend to overestimate the benefits of screening and underestimate its harms. (see also https://cancer-rose.fr/en/2020/12/18/perception-and-reality-2/)

The WHO guide also indicates the principles that must be respected in a screening policy: 

« 1. Respect for dignity and autonomy. Autonomy is the capacity to make an informed and uncoerced decision. »

2.Non-maleficence and beneficence. Non-maleficence means doing no harm to people; beneficence aims to do good for people.

3.Justice and equity. In health care, justice concerns fair allocation of resources and that resources are allocated proportionate to the need.

4.Prudence and precaution. The precautionary principle requires foresight, planning for the potential outcomes of screening and making wise judgements based on these future concerns.

5.Honesty and transparency. This requires clear and transparent communica- tion, thus promoting accountability. » One may wonder whether these fundamental ethical principles will be respected in the new roadmap of the Cancer Plan, which focuses as much on the participation rate, with the ambition of exceeding the European objectives, but without worrying about information to the population and the training of professionals

How to make an informed decision when information is not provided or is incomplete and biased (see :

https://cancer-rose.fr/en/2021/01/01/critical-analysis-of-the-new-inca-information-booklet/ )?

The INCA booklet should be reviewed, particularly with regard to the targets for participation rates. It should be produced by an independent committee without conflict of interest and with the involvement of a panel of women as was done by the National Health Service in the UK and described by Forbes et al, 2014 (6). The 25 women on the panel, aged 47 to 73 years and recruited from the streets of London, came from a variety of professional and ethnic backgrounds. The NHS brochure does not seek to encourage screening or ask citizens to make decisions without guidance. And the committee that wrote UK brochure states that :  « policy of judging the performance of cancer screening only on measures of uptake is, arguably, inconsistent with the policy of supporting informed choice. » (6)

How can the principle of non-maleficence be respected when some women suffer the effects of overdiagnosis, without being properly informed of these risks beforehand?

Concerning the principle of honesty and transparency, danish researchers in screening (Rahbek et al, 2021 (4)) have cited the official INCA brochure as an example of presenting statistics in a misleading way, such as relative % reduction in mortality. And according to these scientists, this misrepresentation is an influence technique to increase participation in screening. The bias introduced by these relative mortality reduction values is also explained and criticized in the GIJN guide developed by RecheckHealth for investigative journalists reporting on health affairs and issues (7).

According to Rahbek et al, 2021 (4) insofar as patient autonomy and informed choice are important, the use of these types of influence remains ethically dubious in cancer screening programs where the benefit/harm ratio is complex and scientifically contested.

In addition, this INCA brochure, even if biased and incomplete, is not transmitted to all women, since it is sent only one time at age of 50, so women who were over the age of 50 in 2017, when the brochure started to be sent, have not received it.

Conclusion

Elsewhere than in France, efforts are being made to provide better information. Increasingly, the scientific literature emphasizes the need to inform citizens in order to make an informed decision about the benefits and harmful effects of screening for healthy people.

Especially this is the case in screening programs where the benefit/harm ratio is complex and scientifically contested and where the consequences of screening are complex and require personal choice, as in the case of breast cancer screening.

The ten-year strategy could have taken this into account in France as well, but it missed this opportunity, at the cost of a lack of information for women and training for professionals. 

References

  • (1) Citizen and scientific consultation, 2016

Report Key points Translated in English https://cancer-rose.fr/en/2021/03/16/citizen-and-scientific-inquiry-report/

https://www.re-check.ch/wordpress/en/projects/gijn-guide/

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.