Methods of influencing the public to attend screenings

Categories of systematic influences applied to increase cancer screening participation: a literature review and analysis

Joseph Rahbek , Christian P. Jauernik, Thomas Ploug, John Brodersen
(more about the authors ==> see at the bottom of the article)

https://publichealth.ku.dk/staff/?pure=en%2Fpublications%2Fcategories-of-systematic-influences-applied-to-increase-cancer-screening-participation(2cfeab86-5b7c-47db-be7b-bdf04436a71f).html

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

April 20, 2021; 

Summary Dr C.Bour, with the help of our referent patient Sophie

Under this title the authors aim to analyze how health authorities can subtly influence citizens to participate in cancer screening programs.
The researchers identified and analyzed several "categories of influence", i.e., several methods of pushing the public to undergo screenings.
They point out that when influences become too severe, this is at the expense of citizens' ability to make a personal choice.

Methods of study

Two methods were chosen:

  • A systematic literature search was performed on three databases listing scientific articles and publications which are: PubMed, Embase and PsycINFO. In addition, a review of the so-called "grey" literature was carried out, i.e. information brochures and website content from regulatory authorities and patient organizations targeting general public.
  • Relevant experts were contacted via international email lists and asked to provide examples of systematic influences in cancer screening. These experts are members of independent groups and have expertise in cancer and the collateral damage of screening.

These include the following groups: EuroPrev (18 members),[1] Nordic Risk Group (24 members),[2] Preventing Overdiagnosis (27 members),[3] a Google group (breast-cancer-screening google group) with a special interest in screening mammography (42 members), and Wiser Healthcare (21 members).

Results

From the 19 articles included and the expert survey, six main categories of systematic influence were identified: (a) misleading presentation of statistics, (b) misrepresentation of harms versus benefits, (c) opt-out, (which consists in considering as passive consent the fact that a solicited patient does not object to the invitation to screen), (d) recommendation of participating, (e) fear appeals, (f) influence on general practitioners and other healthcare professionals. 

The authors provide examples for each category

a) Misleading presentation of statistics

This involves presenting mortality reduction data in an embellished way by using percentages of relative reduction in the risk of dying, instead of raw figures.

Editor’s note : For example, in the case of breast cancer screening, a mortality reduction of 20% is presented. This is a reduction in the risk of dying when comparing two groups, i.e. one group against another.
With this kind of presentation, one might think that 20 out of 100 people screened would die of cancer. This is not the case, explanation:
If out of 1000 screened women 4 die of breast cancer, and out of a group of unscreened women 5 die of breast cancer, the passage from 5 to 4 constitutes mathematically a reduction of 20% of mortality, but in absolute figures it only makes a difference of one woman... This is why it is important to always require a presentation in real data, and not in percentages, which embellishes the situation.

Often physicians and patients have a limited understanding of the statistics, and exposing risk reductions in relative numbers is likely to increase participation especially because citizens overrate the benefits of screening.[5]

b) Misrepresentation of harm compared to benefits:

This method of influence can be applied by presenting the benefits in relative figures, as we have just seen, and the harms in absolute figures. Alternatively, certain types of harms can be minimized and even omitted altogether.

The authors cite as an example a British information brochure on mammography screening in which the reduction in breast cancer mortality was emphasized, but a major harm such as overtreatment was omitted [6]. In addition, the same British brochure showed the risk of overdiagnosis after one round of screening, and the cumulative reduction in mortality after five rounds of screening, thus minimizing the harm while exaggerating the benefit.

Failure to inform correctly also addresses the omission of harms such as overdiagnosis and overtreatment.[6]

Editor's note: We will detail in a dedicated paragraph the very same shortcomings in the information given to women in France, which were denounced in this study, and which were also mentioned during the public consultation on screening in 2016 in France. We will come back to this.

c) Opt-out systems

This consists of assigning citizens a pre-booked appointment at the point of the invitation. If the person does not wish to participate, he/she must actively opt out. The non-refusal of the patient is considered de facto as acceptance to participate.

Editor's note: In France, we do not have this system of prebooked appointments, but the system of reminders is widely used if a patient does not show up for a screening mammography appointment (reminders by mail and sometimes SMS).

d) Recommendations of participation

A recommendation to participate in a health procedure does not provide evidence about the effectiveness or appropriateness or benefit of a screening program. Instead, it promotes one option (to participate) as the smartest or best, based on the authority of the source from which the injunction emanates. This is the argument from authority.[7]

Celebrity staging is also widely used in different countries to increase participation. Humorous examples are given in the article by Rahbek et al. In an Icelandic government video, after examining a citizen's rectum, the doctor slaps him on the bottom and exclaims, "More men should follow your example and take care of their own ass" - a recommendation, unaccompanied by factual data.

e) Fear appeals

This is a well-tried lever. By relying on the uncertainty of life and emphasizing the human fear of dying, it is easy to convince.

All of the above levers are illustrated in an excellent and pictorial way in the Cortecs media article: https://cortecs.org/2016/05/ (Editor's note)

f) Influence on general practitioners and other healthcare professionals

The most obvious one is the system of reward by remuneration when the professional encourages a patient to participate, called P4P (Pay for performance) or ROSP (Remuneration on public health objectives) in France.

g) Others

It is not used in France but is in force in Uruguay, and it was almost introduced in Germany: it is the legislative influence.

In Germany, in 2007, a law proposal suggested that if an individual did not participate in a cancer screening program and was subsequently diagnosed with the type of cancer for which he or she had been called for screening, then that individual would have to pay double the health tax - a law proposal that was finally rejected.

In total

The authors' analysis shows that there is a common point between the six main categories of influence detailed in the article: they work through psychological biases and and personal costs (i.e. time consumption or financial) on non-participation.

The article here focuses essentially on "nudging" populations, a term that refers to anything that predictably changes people's behavior by pushing them into what you want them to do, without any scruples, and even to the point of financial incentives.

Insofar as patient autonomy and informed choice are important, the authors say, the use of such influences is ethically questionable in cancer screening programs where the benefit/harm ratio is complex and scientifically contested.

Therefore, they argue, there is a need to find better ways to facilitate participation by willing citizens, without pushing reluctant citizens to participate. Instead of evaluating cancer screening programs on the basis of participation rates, programs should be evaluated on informed decision rates, regardless of participation or non-participation.

Key points

• This study finds six categories of systematic influences applied to increase participation in national cancer screening programmes.

• The categories of influences work through psychological biases and personal costs of non-participation and might not be compatible with the citizens’ informed choice.

• Research on how to properly implement informed decision models as not to complicate participation for otherwise willing citizens are needed.

Methods of pressure and manipulation by the sanitary structures in France, in particular for breast cancer screening by mammography

We will take up the six methods of influence described and analyse their application in France, specifically concerning breast cancer screening which is our subject of concern. The shortcomings of information in France have been very well identified and described in the report of the citizen and scientific consultation on breast cancer screening (2015/2016) which, let us remember, called for a halt to this screening[8] (observations of multiple failures in the information given to women).

It is important to underline the incredible cynicism of the National Cancer Institute which uses this same publication to improve the participation rate in screening!

Indeed, on the Institute's website, in the section intended for doctors (thematic access "health professionals") this publication is quoted as a basis for improving the participation rate, ignoring the denunciation of the unethical character of the influence techniques by the authors of the study

https://www.e-cancer.fr/Professionnels-de-sante/Veille-bibliographique/Nota-Bene-Cancer/Nota-Bene-Cancer-460/Categories-of-systematic-influences-applied-to-increase-cancer-screening-participation-a-literature-review-and-analysis

"Conducted on the basis of a systematic review of the literature (19 articles) and with the help of experts, this study identifies different types of influence allowing to improve the participation rate in screening programs." 

The critical analysis of the Rahbek et al. study is not mentioned at all...

Let's look at the information given to women according to the 6 categories of influence analyzed in the article.

a) Misleading presentation of statistics

Rahbek et al. cite the INCa booklet[9] in Table 5 of the supplements section of their study (TABLE 5. GREY LITERATURE SEARCH RESULTS) as an example of misleading presentation of statistical data, and they denounce the French booklet's presentation of mortality in terms of relative risks. In fact, in the French booklet, the reduction in the risk of dying from breast cancer (this so-called gain in mortality) is announced by INCa to be between 15 and 20%. We have also analysed this booklet and made the same observations about the misleading and embellishing information concerning the supposed gain in mortality from breast cancer screening [10].

When we visit the INCa website[11], which is supposed to guarantee proper information to the population, we immediately come across the same flaw denounced by the publication, here: https://cancersdusein.e-cancer.fr/infos/pourquoi-les-autorites-de-sante-recommandent-de-realiser-un-depistage/ : "International studies estimate that these programs can prevent between 15% and 21% of deaths from breast cancer."

The same presentation can be found again and always on the French Health Insurance website, in spite of the citizens' requests to avoid this pitfall, superbly ignored and scorned by these authorities, which are nevertheless heavily pinned for their failings, as can be seen on the website,

Here: https://www.ameli.fr/assure/sante/themes/cancer-sein/depistage-gratuit-50-74-ans

b) Misrepresentation of harms versus benefits

On the French Assurance Maladie website, it is impossible for a patient to obtain information on overdiagnosis or overtreatment. In the search box there are no hits.

But in the tab "organized breast cancer screening" you will find a video made by the INCa and a reference to the page of the Institute.

The benefits, on the official site of the INCa, are largely developed, and the harms are called here modestly the "limits of screening". In the small paragraph 'DIAGNOSIS AND TREATMENT OF SLOW PROGRESSIVE CANCER', overtreatment, a direct consequence of overdiagnosis for women, is never mentioned.

Overdiagnosis is indicated at a percentage of 10 to 20%, figures that are completely obsolete and have been revised upwards for a long time[12].

Even lower numbers appear on the page for professionals: "Based on published studies, overdiagnosis could be in the range of 1-10% or even 20%. " 

https://www.e-cancer.fr/Professionnels-de-sante/Depistage-et-detection-precoce/Depistage-du-cancer-du-sein/Les-reponses-a-vos-questions The same observation can be made on the site dedicated to breast cancer screening (Prevention and screening of breast cancer) where you will find exactly the same wording[13].

We had also carried out ourselves a quantitative evaluation of the informative value of this site where the inciting for screening is obvious[14].

The French brochures are again cited in the "supplements" of the Rahbek et al study, item 'MISREPRESENTATION OF HARMS VS BENEFITS'; the authors denounce the omission of overdiagnosis in the official brochures. To be more accurate, overdiagnosis is mentioned in the booklet but very much minimized, and the description of overtreatment, a corollary of overdiagnosis, is completely missing.

Still in the same section, Rahbek et al. denounce the omission by the official French brochures of the risk of exposure to ionizing radiation. We had also noted this point in the analysis of the booklet (reference 11). But in fact this point is really mentioned on page 12 of the INCa booklet, which states that: "the risk of death from radiation-induced cancer is of the order of 1 to 10 per 100,000 women who have had a mammogram every 2 years for 10 years."

This is true, but it should be pointed out that this risk increases with the repetition of examinations and incidences. Let us recall that 3 mSv are received on average with a mammography (between 2 and 3 images per breast depending on the needs), which corresponds to already 9 months of annual irradiation (which is 4.5 mSv per year for a French person). 

c) Opt-out system

As mentioned above, this system is not used in France. However, if a woman does not go for screening, she will be reminded several times, sometimes even by text message, giving women the impression that screening is mandatory. However, this is not the case, screening is not mandatory  and we have provided a pre-filled form on the home page that women who do not wish to undergo mammography screening can send to their departmental screening structure. 15]

At the end of the INCa booklet, it is clearly stated "You cannot or do not wish to be screened. Fill in the questionnaire in the invitation letter and return it to the address indicated. Please be aware that you can change your mind at any time. "

d) Recommendations for participation

The argument of authority is widely conveyed by opinion leaders, a radiologist speaks on the home page of the "breast cancer prevention and screening" website.

In the midst of the Covid pandemic, we saw a renowned oncologist calling on women to continue screening, scaring them and arguing loudly that breast cancer would kill more than the pandemic. When we read that the 100,000 mark was passed in one year (breast cancer causes 12,000 deaths/year), we realize how sordid these counts seem and especially how some media doctors do not hesitate to exaggerate in order to convey inciting and frightening messages.[16]

The stars in France are not to be forgotten, as shown by the TV show " Naked Stars " where celebrities unveil themselves for " the good cause " with messages that are intellectually indigent and insufficient in terms of scientific information.[17]

In 2011, Marie-Claire published multiple photos of French stars who let themselves be photographed naked to "raise awareness" of breast cancer screening, allowing this media a considerable and profitable increase in its sales.[18]

e) Fear appeals.

The organization Pink Ribbon, formerly 'Cancer-du-Sein-Parlons-en' , broadcast a spot in 2015 based on messages related to death (breast cancer, the most common, the most deadly).[19]

The INCa is not lagging behind and in 2018 was published this poster: "This cancer is at the same time the most frequent and the most deadliest in women. Yet if it is detected early, the treatments are generally less burdensome and the chances of recovery greater."

https://www.e-cancer.fr/Expertises-et-publications/Catalogue-des-publications/Depistage-du-cancer-du-sein-2018-Affiche-sans-zone-de-repiquage

Cancer is constantly associated with a verdict of death, so much so that the medical, societal and media messages are based on a military and bellicose jargon: cancer is an enemy that will inexorably invade the body. The patient either wins or succumbs, despite the "therapeutic arsenal" or the "fight" led by the patient. As soon as a cancer is diagnosed at the mammogram, the feverishness that the doctor shows in making appointments for his patient for other examinations and surgery reinforces the idea of imminent death for the patient. Each newly diagnosed woman feels banished from the world of "normality" and threatened with expulsion from the social system (work, family, insurance, bank, etc.). The stress that some women feel after the announcement is such that they lose all control over their lives, professionally, emotionally and in their families. And this is very well perceived by the other women in the family, friends or professional environment.

f) Influence on general practitioners and other health professionals

In France this is the ROSP system (remuneration on public health objectives)[20].

See here:

https://www.ameli.fr/seine-saint-denis/medecin/exercice-liberal/remuneration/remuneration-objectifs/medecin-traitant-adulte

Note that on the site dedicated to professionals [21], the risk of "unnecessary mutilation of women screened by excess" is well recognized, the controversy and the consultation of 2016 are mentioned, nevertheless the premium is maintained (according to web page of December 29, 2020).

But even worse is the financial incentive on the women themselves. Indeed, in 2020 the INCa organized a masquerade of consultation[22] where one item caught our attention, as it proposed to pay women this time in order to bring them to screening.

A citizen has expressed her concern in an article published in the JIM, denouncing the lack of ethical consideration in this proposal for "paid participation"[23].

The manipulation of women is a real scientific topic

To read here: https://cancer-rose.fr/en/2020/12/17/manipulation-of-information/

CONCLUSION

Rahbek et al have perfectly identified the shortcomings of the information provided to the public on screening in general, information that remains globally often inciting, which goes against the ethical objectives that we owe to the patient.

The shortcomings and failings of the official French brochures were noted, including those of the INCa, an institute that is supposed to protect the patient.

The booklet of the INCa, already quite imperfect, is sent to women eligible for screening only once at the time of their first convocation when they are 50 years old. In 2017, when the booklet was published, women aged 50 who were first called for screening received it, but women over 50 at that time will never receive it.

And what can be said about the INCa's multi-language brochure, which is even more succinct?

From our point of view, we can only be dismayed and distressed to see to what extent the demands of French citizens, who had, during the 2016 consultation, identified the same problems, have remained unheard and scorned by the French authorities.

ANNEX: 

You will find here a table annexed with the original publication, showing the research of the so-called 'grey' literature (brochures and information websites). French brochures are named in several items of misleading communication of data (yellow highlighting).

Table here:

https://cancer-rose.fr/wp-content/uploads/2021/04/tableau.pdf

We can also see the strong preferential communication on mammography screening (blue highlighting).

The authors

Joseph Rahbek

Master student Department of Public Health, Section of General Practice
Research Unit for General Practice, Section of General Practice, Department of Public Health, University of Copenhagen, Copenhagen K, Denmark

Christian P. Jauernik

The Research Unit for General Practice, Section of General Practice, Department of Public Health, University of Copenhagen, Copenhagen K, Denmark

Thomas Ploug

Thomas Ploug is Professor of ICT (Information and Communication Technology) Ethics at the Department of Communication and Psychology at Aalborg University in Copenhagen. He holds a Master of Philosophy from the University of Copenhagen and a PhD in ICT ethics from the University of Southern Denmark. His research interests and projects cover topics in different areas of applied ethics, such as ICT ethics, medical ethics and bioethics. He is currently involved in projects on online and offline consent behavior in the health context, and nudging in the health sector. He is head of the research group on communication and information studies, director of the Centre for Applied Ethics and Philosophy of Science, member of the Danish Council of Ethics and the clinical ethics committee of Rigshospitalet, Copenhagen.

John Brodersen, Professor, University of Copenhagen

https://publichealth.ku.dk/staff/?pure=en%2Fpersons%2Fjohn-brodersen(0f06ffbd-c5c4-4560-aac7-f0bfdf8e86e7).html

John Brodersen, the senior author of this article, is a general practitioner with more than ten years of experience in clinical practice. Dr. Brodersen holds a PhD in public health and psychometrics and works as an associate research professor in medical screening at the University of Copenhagen, Department of Public Health, Research Unit and Section of General Practice.

His work was used in the development of the 2020 WHO Screening Guide, which builds on the background papers written by John Brodersen for the 2019 WHO European Technical Consultation on Screening.

https://apps.who.int/iris/bitstream/handle/10665/330852/9789289054799-fre.pdf

He is also a co-author of the 2012 Cochrane booklet on mammographic screening.https://www.cochrane.dk/sites/cochrane.dk/files/public/uploads/images/mammography/mammografi-fr.pdf

He is a member of the Board and Scientific Committee of the non-profit organization "Preventing Overdiagnosis "https://www.preventingoverdiagnosis.net/?page_id=6

His research focuses on the development and validation of questionnaires to measure the psychosocial consequences of false positive screening results. Dr. Brodersen has published numerous articles in peer-reviewed journals.

In the area of self-diagnosis and screening, Dr. Brodersen specializes in the areas of sensitivity, specificity, predictive values, overdiagnosis, informed consent, and psychosocial consequences for healthy individuals when tested.

He also teaches nationally and internationally on evidence-based medicine.

PhD thesis:Brodersen, J 2006 , Measuring the psychosocial consequences of false positive screening results - breast cancer as an example, PhD thesis, Månedsskrift for Praktisk Lægegerning, Department of General Medicine, Institute of Public Health, Faculty of Health Sciences, University of Copenhagen. Copenhagen

REFERENCES

[1] European Network for Prevention and Health Promotion in Family Medicine and General Practice. Available at: http://europrev.woncaeurope.org/

[2] Nordic Risk Group. Available at: http://nordicriskgroup.net/

[3] Preventing Overdiagnosis. Available at: http://www.preventingoverdiagnosis.net/

[4] Wiser Healthcare. Available at: http://wiserhealthcare.org.au/

[5] https://cancer-rose.fr/en/2020/12/18/perception-and-reality-2/

[6] Gotzsche PC, Hartling OJ, Nielsen M, et al. Breast screening: the facts–or maybe not. BMJ 2009;338:b86.

[7] https://cancer-rose.fr/en/2021/04/02/screening-propaganda/ (part OPINION LEADERS AND MEDIA)

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

  • page 125, le constat d'une information inadaptée.
  • page 57 : les incitations financières
  • pages 85, 92, 93, 115 : la communication "lacunaire" de l'INCa
  • pages 95, 96 jusqu'à 100 : la communication 'simpliste' de l'Assurance Maladie
  • page 133 : les deux scénarios proposés par le comité de pilotage pour l'arrêt du dépistage mammographique.

[9] https://cancersdusein.e-cancer.fr/infos/un-livret-sur-le-depistage-pour-sinformer-et-decider/ ou https://www.e-cancer.fr/Expertises-et-publications/Catalogue-des-publications/Livret-d-information-sur-le-depistage-organise-du-cancer-du-sein

[10] https://cancer-rose.fr/en/2021/01/01/critical-analysis-of-the-new-inca-information-booklet/

[11] https://cancersdusein.e-cancer.fr/

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

[13] https://cancersdusein.e-cancer.fr/infos/les-benefices-et-les-limites-du-depistage/

[14] https://cancer-rose.fr/en/accueil-english/

[15] https://cancer-rose.fr/wp-content/uploads/2019/07/Droit-dopposition_Mammos.pdf

[16] https://cancer-rose.fr/en/2021/04/02/screening-propaganda/

[17] https://cancer-rose.fr/2020/02/06/ah-mais-quelle-aubaine-ce-cancer/

[18] https://cortecs.org/wp-content/uploads/2016/03/CorteX_mammo_sophie_davant.png

[19] https://www.youtube.com/watch?v=y7widbIFUb8

[20] https://cancer-rose.fr/2020/04/20/la-nouvelle-rosp-quel-changement-pour-le-medecin-concernant-le-depistage-du-cancer-du-sein/

[21] https://www.ameli.fr/seine-saint-denis/medecin/exercice-liberal/remuneration/remuneration-objectifs/medecin-traitant-adulte

[22] https://cancer-rose.fr/2020/12/17/la-concertation-citoyenne-de-linca-sur-le-futur-plan-cancer-une-mascarade/

[23] https://cancer-rose.fr/en/2021/02/14/getting-paid-to-be-screened/

[24] https://www.e-cancer.fr/Expertises-et-publications/Catalogue-des-publications/Depliant-d-information-en-langues-etrangeres-sur-le-depistage-organise-du-cancer-du-sein

 

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.

Self-selection bias, a study that illustrates it

March 21, 2021

Cécile Bour, MD

One of our faithful and wise readers, whom we thank, asked our opinion on a study by Tabar and Duffy, recently published but we had not mentioned. 

https://pubs.rsna.org/doi/10.1148/radiol.2021203935

According to this publication, there would be a significant reduction in mortality from breast cancer in patients who were monitored.

Here are our comments. We did not mention this study because there is a huge and well-known selection bias, namely that women who do not participate in screening are very different from those who do; and this bias can explain the results as well as the screening itself in this population.

On Medscape we can read:

https://www.medscape.org/viewarticle/933105

One of the experts who was approached by Medscape Medical News to comment on the new study, Philippe Autier, MPH, MD, PhD, from the University of Strathclyde Institute of Global Public Health at the International Prevention Research Institute, Dardilly, France, questioned the methodology of the study. "This method is incorrect simply because women attending screening are different from women not attending screening," he said. "The former are more health aware and have healthier behaviors than the latter, and this is a well-known fact and supported by the literature."

Dr Autier emphasized that it is practically impossible to control for that bias, which is known as confounding by indication.

"The statistical methods used for attenuating the so-called self-selection are very approximate and based on unverified assumptions," he said. "For this reason, the Handbook on Breast Cancer Screening produced by the International Agency for Research on Cancer clearly stated that 'observational studies based on individual screening history, no matter how well designed and conducted, should not be regarded as providing evidence for an effect of screening,' and the methodology in this paper has never been recommended by the [agency]."

A better way of conducting this type of study would have been to show the incidence trends of advanced-stage breast cancer in Sweden for the entire female population aged 40 years and older, he asserts. Dr Autier used that methodology in his own study in the Netherlands, as previously reported by Medscape Medical News.[4]That study foundt hat in the Netherlands, screening mammography over a period of 24 years among women aged 50 to 74 years had little effect on reducing rates of advanced breast cancer or mortality from the disease.

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.

Blind and Deaf

In the journal “Pratiques”, Dr Marc Gourmelon reviews the history of breast cancer screening in France, from the launch of organized screening campaign, through citizen consultation, until the current situation with the new 2021/2025 cancer plan endorsed by President Macron, in a climate of deafness of authorities to citizen demands and despite the failure of this screening. All of this is against women's right to fair information on the risk-benefit balance of this screening.

L’attribut alt de cette image est vide, son nom de fichier est aveugle-1-300x272.jpg.
Cliquer sur image pour version française/click on image for french version

Here this article translated

Marc Gourmelon, Medical doctor, member of the Cancer Rose collective

Where are we today in France, regarding breast cancer screening by mammography in women aged 50 to 74 years old without an increased risk of breast cancer?


Historical reminder of the introduction of breast cancer screening by mammography in France

Mammography (breast X-ray) is a radiological examination for diagnosis of any abnormalities detected in breast. It became common practice in the late 1960s with the arrival of the first mammograph in 1965. [1] [2]

Two randomized screening experiments are believed to have proven the effectiveness of mammography on mortality reduction.
These are the New York HIP trial (1963) and the study of two counties in Sweden (1985, 1997).

The published results were identical: a 30% reduction in mortality in the screened group compared to the control group in women over 50 years of age. This resulted in great enthusiasm leading several countries (United States, Sweden, Finland, United Kingdom, the Netherlands and others) to the decision to launch systematic screening campaigns by mammography.

In France, systematic breast cancer screening by mammography was first launched in ten pilot departments in 1989.

Thanks to this screening, it is believed that women would no longer have to die of breast cancer and the disease would be defeated on the basis of an a priori intuitive concept: the smaller or "in time" a cancer is caught, the less serious it is and the quicker it can be removed, thus the more advanced forms of cancer will be averted for women.

Starting in the 1990s, an increasing number of doctors began offering this imaging technique to detect breast cancer, and many studies were carried out in parallel on the subject.
A report from the French National Agency for Health Accreditation and Evaluation (ANAES) dated March 1999 assesses relevance in general population. It recommends the breast cancer screening for all women between 50 and 69 years of age, to be performed every two years. [3]

Based on this recommendation, the cancer plan 2003-2007 in its measure 21, notes:  "Fulfilling the commitment to generalize organized breast cancer screening by the end of 2003".[4] Organized screening of breast cancer by mammography, under the impetus of President Chirac, will then be generalized in France in 2004.

However, voices of national and international scientists have been raised, as early as 1987, urging caution, but inaudible in the climate of general euphoria. [5]

In 2001, the independent Nordic collective Cochrane published a meta-analysis, updated several times [6], which questions benefits of this screening.

Nevertheless, the French High Authority for Health (HAS), which evaluated this study in early 2002, refused to question the relevance of organized breast cancer screening. [7]

Despite the accumulation of studies and evaluations in recent years, today the organized screening of breast cancer by mammography is still recommended by the health authorities ( French High Health Authority, National Cancer Institute) on the basis of 2004 guidelines.
The objective is even to intensify it, because the participation targets for eligible women (50 to 74 years old) set at 70 or 80% have still not been reached.

In fact, participation in the organized breast cancer screening program represents only slightly more than 50% of women.

At the same time, the number of mammographers is constantly expanding and cutting-edge technology, such as tomosynthesis, a type of 3D imaging, is being studied to track down more and more small lesions, contributing to a surge in incidence of cancers without a significant reduction in mortality. (still 12,000 deaths/breast cancer/year).

Proponents of EBM (the concept of tripod-based medicine - scientific studies, physician's professional experience, and patient preferences and choices) advocate enlightened information and shared decision-making with the patient, who must be informed of the uncertainties of screening. This concept is defended in France by the independent journal Prescrire. In the United Kingdom and Canada, very detailed brochures are issued to patients, while in France this is not the case.

But what about the real effectiveness of this screening?

The effectiveness of cancer screening is defined by : 

- a drastic and significant reduction in mortality from the disease, 

- a reduction in incidence of advanced cancers, 

- a lightening of treatments.

The meta-analysis of the Cochrane collective that we have just mentioned above alerts us of an unexpected guest of screening, namely overdiagnosis. This concerns the discovery of cancerous and pre-cancerous lesions which, undetected, would not have endangered the woman's health or life, but which will all be treated with the same determination.

Together with false alarms, that is, suspected cancers that are not confirmed after further examinations of the patients, the risk-benefit balance of screening does not appear to be favorable. For the Cochrane, for every 2,000 women screened over 10 years, for one life saved, there will be 10 overdiagnosed and overtreated women and 200 false alarms. In the years following this publication, international and national studies on the benefit/risk of breast cancer screening by mammography have multiplied and have highlighted an important issue: an increasing overdiagnosis of small lesions (<2 cm) and precancerous lesions responsible for overtreatment, and a parallel reduction in mortality that is very minimal, little or not perceptible.  [8] [9] [10]

Indeed, when comparing populations of women subjected to different screening intensities, we find that among women screened, more cancers are found for identical survival in both groups. [11]

Overtreatment is the materialization of overdiagnosis for women, and it has destructive effects.

Women are doubly victims, in their body and in their illusions, convinced that they have been "saved" while they are suffering the stress of a ruined life and the potentially major adverse effects of treatment.
Treatments are primarily surgical, with an increase in total and partial mastectomies since screening, contesting the widespread myth of therapeutic lightening through screening. [12]
Women also undergo unnecessary radiation therapy with cardiac risks and an increased risk of hemopathy. [13] [14]
The quality of their lives is diminished; after being diagnosed with cancer, women suffer from anxiety and depression syndromes, some lose their jobs and become poorer. Their sexuality and self-image are altered, sometimes leading to suicide. [15]

Thus overdiagnosis leads to a number of deaths that are not reliably measured but which, when taken together, could be major, as a British study suggests. [16]
This problem of overdiagnosis took a long time to be recognized by health authorities in charge of organized screening.

Today, this has been done, but this crucial issue, which must be taken into account when assessing the risk-benefit balance of screening, is greatly minimized.
In the 2015 HAS document [17], overdiagnosis is well mentioned, but, taking up only a few lines of the nearly one hundred pages of the report, it is completely drowned out in explanations of the value of screening; therefore, it goes unnoticed.

Furthermore, when it comes to independent scientific studies questioning the value of screening, the HAS document uses the terms "controversy" and "polemical", which inexpensively discredits the debate on the subject.

The document is still in force today, and is very poor in terms of bibliography supporting the interest in pursuing organized screening.
This makes it a very partial document, contrary to what should be expected from a state agency.

The INCa (National Cancer Institute) has also continued throughout these years the same shortcomings in the information provided to women on the subject.

We have just seen that for health authorities, for politicians who decide on successive cancer plans, the question regarding effectiveness of breast cancer screening by mammography is not raised.

They do not question the effectiveness of this screening and they are aiming to intensify it, even though independent meta-analyses, international studies and epidemiological data from the countries where screening takes place tend to show that the objectives of screening effectiveness are not being met : 

- Not only does screening significantly increase the incidence of cancer without significantly decreasing the risk of dying from breast cancer,  -but also does not make it possible to treat less aggressively, or to reduce advanced forms of cancer that desperately remain at an unchanged rate, in all countries where screening is in place.

The citizen consultation on breast cancer screening by mammography in 2015

Several observations prompted the Minister of Health at the time, Marisol Touraine, to initiate in 2015 a scientific and citizen consultation on breast cancer screening:

- The stagnation of the participation rate of women, which does not exceed 50% instead of the initial 70% objective.

- The variability of participation according to territories and socio-economic groups.

- The growing extent of the debate on benefits and risks of screening, both within scientific and medical spheres and among general public, regularly covered by mass media.


The Cancer Rose collective, of which I am a member, was auditioned during two round tables, one with citizens and the other with health professionals.
Our collective, made up of doctors and a toxicologist, came together with the objective of providing women and healthcare professionals with all independent and recent scientific information available.
Thus, we have developed and launched an website that aims to convey information that will allow women to make an informed decision on the stakes of screening, in an objective manner, without being influenced by media and promoters of the pink campaign.
This collaboration has already led to the development of an information brochure as well as various informative and educational materials.

The report of the scientific and citizen consultation was published at the end of 2016. [18]
The conclusion is very clear: the organized screening program should be stopped based on the two proposed scenarios (see page 132 of the report [19]):

Scenario 1: discontinuation of the organized screening program, relevance of mammography being assessed in the context of an individualized medical relationship.

Scenario 2: Cessation of organized screening as it exists today and implementation of a new organized screening, profoundly modified.

Following the release of this report, INCa sent a letter to Minister Marisol Touraine, dated September 16, although we only became publicly aware of the report on October 2. Professor Ifrah, President of INCa, calls Scenario 1 in this letter a "textbook case" and dismissed it out of hand, thus reducing half of the work to a negligible amount. [20]

Voices were raised, scandalized by such a denial of health democracy. [21]

An action plan is then published by Mrs. Marisol Touraine who entrusts the renovation of the screening to... INCa, the same institute whose lack of information for women was heavily criticized throughout the consultation report.

Currently, in 2020, the citizens' demand of 2015 to stop the current screening is still unheard, the pink campaigns are going well, and this public health program is therefore continuing according to the 2004 plan.

The implementation of a "new, profoundly modified organized screening" based on individual risk is underway with the launch of the MyPeBS study [22].
This is a randomized, non-inferiority study comparing women randomly divided into two groups. One group will consist of women who are routinely screened according to current official recommendations, and the other group will consist of women who are individually screened based on an assessment of their personal risk of developing invasive cancer during their lifetime.
This study poses many problems, ethical (consent form given to women omitting overtreatment and minimizing overdiagnosis), and methodological (absence of a "no screening" arm of the study, recruitment of women as young as 40 years old with annual mammograms for risk groups without information on radiotoxicity), software for calculating individual risk without scientific validation .

And since 2015?

Nothing has happened, apart from continuity in the promotion of organized screening.

Breast cancer screening is still included in the Public Health Objectives Remuneration ( ROSP), but it must be recognized that the objective asked to the general practitioner (between 60 and 70% participation of patients) is very difficult to reach in order to get the maximum of this remuneration.

Every year, October month turns pink with multiple incentives for women to be screened. 2020 was no exception to the rule.
Broadcasts for general public (Stars à nues) on TV channels are making an unbridled and uncontrolled promotion of the screenings without any authority being concerned, nor the CSA Higher Council for Audiovisual that we had alerted.

What are the observations arising from these facts?

It was decided by the authorities to set up organized breast cancer screening by mammography in 2004 when already early warners were expressing their doubts. Fifteen years later, knowledge on the subject has been enhanced. A large number of studies have been published that are consistent on a perceptible lack of benefit from breast cancer screening by mammography, and on the presence of risks whose reality is tangible and accountable. According to the most recent studies, overdiagnosis now concerns one-third to one-half of the cancers detected by mammography [23].

According to the journal Prescrire, for every 1,000 women over the age of 50 participating over a period of 20 years, there are approximately 1,000 false alarms in France, leading to 150 to 200 biopsies, sometimes several on the same woman during her successive screenings [24].

So why is it important for the French authorities to continue this screening, since women who undergo it do not gain any conclusive benefit from it?

Several possibilities can be evoked. 

- After having literally conjured up women, for three decades, to get screened, through slogans and media campaigns, it seems difficult for the health authorities and opinion leaders promoting it to disregard it. 

- Conflicts of interest among certain actors in the field of screening cannot be denied and weigh heavily on the omerta that reigns over the scientific debate in France [25] [26]. 

- Beliefs based on intuitive concepts are often easier to anchor ("sooner is better", "finding earlier saves lives") than explanations of the much more complex natural history of cancers in real life. This requires a longer pedagogy and explanatory development, to make people understand why some cancers remain indolent for a lifetime, why people can die with their cancer but not because of it, why others are fast and kill their host no matter is done, screened or not. 

- Obvious laziness in tackling true prevention contributes to the persistent buzzing of well-oiled pink campaigns. 

- Primary prevention remains the weak side of public health in France. Smoking, alcohol, but also obesity and a sedentary lifestyle are among the risk factors for cancer in general.

In addition to many other social factors, such as poverty, night work, certain professional environments are well known as risk factors for developing breast cancer and other cancers.
But few resources are invested in massive campaigns to combat smoking, alcoholism, obesity and these socio-professional factors.

They would certainly be more relevant than Pink October campaigns or health fair shows that are inflicted on women with coercive and scary messages.

In this respect, the latest cancer plan 2021/2025 announced by President Macron on February 4, 2021 is symptomatic: even if it talks about tobacco and alcohol, it largely confuses prevention and screening, giving the latter a clear advantage at the expense of prevention policies worthy of this name [27].

Conclusions

It is particularly difficult for the public, faced with opposing opinions and a highly technical debate, to get a clear idea of realities at hand.
The health sector has seen in this year 2020, during the coronavirus crisis, medical "clashes" with diametrically opposed opinions.

How can one cope as a layperson who has no expertise on the subject?
This is exactly the problem that every woman who is asked to get screened has to face.
This is all the more difficult for her, since the authorities are "Blind" with regard to the scientific knowledge they have acquired, and "Deaf" to all questions on the subject.

This is why I think it is necessary that all women be aware of this simple infographics, based on the evaluation of the Cochrane review, in concordance with other audited evaluations, whose results have never been contested by the international scientific community [28].

This simple visual, summarizing the entire issue of screening, must be given to women BEFORE they undergo the organized screening test for breast cancer.

L’attribut alt de cette image est vide, son nom de fichier est Harding.jpg.

References

[1] Tabar L, VitakB, Chen HH et al.The Swedish Two-County Trial twenty years later. Updated mortality results and new insights from long-term follow-up, Radiol Clin North Am 2 000 ; 38:625-51.

[2] Efficacy of screening mammography : Kerlikowske K, Grady D, Rubin S M, Sandrock C, Ernster V L. Efficacy of screening mammography : a meta-analysis. JAMA 1995 ; 273(2) : 149-154.

[3https://has-sante.fr/upload/docs/application/pdf/mamo.pdf

Recommendations :

Routine screening is recommended in the 50-69 age group.

In the general population, the benefit of breast cancer screening in terms of avoided mortality is demonstrated in the 50-69 age group. Therefore, in this age group, routine screening is recommended.

In the 70-74 age group, the incidence of breast cancer is high, but data on mass screening are scarce. Taking into account the large-scale organizational difficulties, extending screening to this age group currently seems premature in France. On the other hand, it is logical to recommend the continuation of screening between the ages of 70 and 74 for women previously included in the systematic screening program between the ages of 50 and 69.

[4https://www.e-cancer.fr/content/download/59052/537324/file/Plan_cancer_2003-2007_MILC.pdf

5] In 1998, Professor Paul Schäffer of the Bas-Rhin Laboratory of Epidemiology and Public Health (faculté́ de médecine de Strasbourg), in charge of the evaluation of screening, published an article in the French Medical Council's Bulletin 19.

"Tumour screening campaigns: caution is needed. "Screening should not be harmful. If it can bring health benefits, its potential to harm individuals should not be forgotten.For reasons of efficiency and ethics, preventive action should not have major disadvantages.

[6https://www.cochrane.org/fr/CD001877/BREASTCA_depistage-du-cancer-du-sein-par-mammographie

7] "Gotzsche and Olsen's meta-analysis challenges the consensus on the effectiveness of breast cancer screening. "and : "The evaluation of Gotzsche and Olsen's meta-analysis, carried out by ANAES with the help of a multidisciplinary group of experts, concludes that it is not legitimate to question ANAES' recommendations in favour of breast cancer screening. »

(https://www.has-sante.fr/jcms/c_433803/fr/depistage-du-cancer-du-sein-par-mammographie-evaluation-de-la-meta-analyse-de-gotzsche-et-olsen)

[8] Breast Cancer Screening, Incidence, and Mortality Across US Counties,Charles Harding, AB ; Francesco Pompei, PhD ; Dmitriy Burmistrov, PhD ; et alH. Gilbert Welch, MD, MPH ; Rediet Abebe, MASt ; Richard Wilson, DPhil, JAMAIntern Med. 2015 ;175(9):1483-1489. doi:10.1001/jamainternmed.2015.3043

The results of this 2015 study : 

- An increase in the number of breast cancer diagnoses (+16% for a 10% increase in screening participation), mainly by tumors smaller than 2 cm. 

- No reduction in breast cancer mortality. 

- No reduction in the number of advanced breast cancers. 

- No reduction in mastectomies.

[9RevuePrescrire 2006 https://www.prescrire.org/aLaUne/dossierKcSeinDepSyn.php

"In terms of total mortality, a benefit of mammographic screening in the general population has not been demonstrated. If there is an effect (positive or negative) on total mortality, it is small. »

10] Mammography screening: A major issue in medicine, Philippe Autier, Mathieu Boniol, Eur J Cancer, 2018 Feb ;90:34-62. doi : 10.1016/j.ejca.2017.11.002.

The strong points :

- After 20 to 30 years of mammography screening, the incidence rates of advanced and metastatic breast cancer have remained stable.

Breast cancer mortality rates have not declined more rapidly in areas where screening mammography has been in place since the late 1980s.

- One-third to one-half of breast cancers detected by mammography are estimated not to be symptomatic during a lifetime (overdiagnosis).

- Randomized trials of breast cancer screening have adopted distinctive methods that have led to exaggerated screening effectiveness.

- The influence of mammography screening on mortality decreases with the increasing effectiveness of cancer therapies.

11] Twenty year follow-up for breast cancer incidence and mortality of the Canadian National Breast Screening Study: randomised screening trial, Miller AB, Wall C, Baines CJ, Sun P, To T, Narod SA, The BmJ, 2014 Feb 11;348:g366.

Conclusions :

- No difference in mortality between the two groups (mortality = number of deaths relative to the total number of people screened).

- Survival rates are identical, regardless of the stage of the tumour at the time of detection (by screening for some, by a symptom for others).

22% over-diagnosis

- No difference between the two groups in the rate of fatal cancers.

[12] Le dépistage organisé permet-il réellement d’alléger le traitement chirurgical des cancers du sein ?, Vincent Robert, Jean Doubovetzky, Annette Lexa, Philippe Nicot, Cécile Bour, Revue Médecine, Volume 13, numéro 8, octobre 2017.
https://www.jle.com/fr/revues/med/e-docs/le_depistage_organise_permet_il_reellement_dalleger_le_traitement_chirurgical_des_cancers_du_sein__310529/article.phtml

[13] Causes of death after breast cancer diagnosis : A US population‐based analysais, Ahmed M. Afifi MBBCh, Anas M. Saad MD, Muneer J. Al‐Husseini MD, Ahmed Osama Elmehrath, Donald W. Northfelt MD, Mohamad Bassam Sonbol MD, ACS Journal, 16 December 2019
https://doi.org/10.1002/cncr.32648

[14] Evaluation of the Incidence of Hematologic Malignant Neoplasms Among Breast Cancer Survivors in France, Marie Joëlle Jabagi, PharmD, MPH, Norbert Vey, MD, PhD, Anthony Goncalves, MD, PhD, Thien Le Tri, MSc, Mahmoud Zureik, MD, PhD, and Rosemary Dray-Spira, MD, PhD, JAMA Netw Open, 2019 Jan ; 2(1) : e187147.
Published online 2019 Jan 18. doi : 10.1001/jamanetworkopen.2018.7147

[15] Bouhnik AD et Mancini J, « Sexualité, vie affective et conjugale » In La vie deux ans après un diagnostic de cancer - De l’annonce à l’après cancer, collection Études et enquêtes, INCa, juin 2014, 454 pages.

[16] 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 - https://www.bmj.com/content/346/bmj.f385
Michael Baum, professor emeritus of surgery, Division of Surgery and Interventional Science, University College London, London WC1E 6BT, UK

[17https://www.has-sante.fr/jcms/c_2024559/fr/depistage-et-prevention-du-cancer-du-sein

[18https://www.e-cancer.fr/Institut-national-du-cancer/Democratie-sanitaire/Concertation-citoyenne-sur-le-depistage-du-cancer-du-sein

[19http://www.concertation-depistage.fr/wp-content/uploads/2016/10/depistage-cancer-sein-rapport-concertation-sept-2016.pdf (read: https://cancer-rose.fr/en/2020/12/14/final-report-of-the-citizen-consultation-report-of-the-steering-committee/)

[20https://www.atoute.org/n/IMG/pdf/Courrier-Ministre-concertation-depistage-cancer-sein---.pdf

[21https://formindep.fr/cancer-du-sein-la-concertation-confisquee/

[22https://cancer-rose.fr/my-pebs/ (read: https://cancer-rose.fr/my-pebs/2019/06/13/argument-english/)

23] Mammography screening : A major issue in medicine, Philippe Autier, Mathieu Boniol,
Eur J Cancer, 2018 Feb ;90:34-62. doi : 10.1016/j.ejca.2017.11.002.

[24Revue Prescrire, février 2015/Tome 35 N°376.

[25https://www.atoute.org/n/article308.html

[26] MitcHell ap, BascH em, Dusetzina sB. Financial Relationships With Industry Among National Comprehensive Cancer Network Guideline Authors, JAMA Oncology, 2016 Dec 1 ;2(12):1628-1631.

[27https://cancer-rose.fr/2021/02/08/nouveau-plan-cancer-2021-2030-une-planification-sovietique/

[28https://www.hardingcenter.de/en/early-detection-breast-cancer-mammography-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.

Cancer and the frightening abyss of death

The tree that hides the forest

Annette Lexa, PhD Toxicology

It is easy to see in this frenzy of screening and explosion of patient recruitment in clinical trials a fool's game that primarily serves industry.
However, it is almost certain that reality is more complex, and this angle of analysis is not only one that can explain this situation, it is only a consequence and not the primary cause.

It seems more and more certain that this much promoted early detection indiscriminately detects cancers with good and poor prognosis. The problem is just that treatments which follow don't discriminate either ("We are going to cure you of a disease that you don't have yet", says a doctor in the France 5 documentary, « In the name of all breasts »).

This leads to over-treating a number of patients with new supposedly "innovative" anti-cancer drugs, extremely expensive and no more effective than those already on the market and whose serious side effects (death, second cancer) are largely unknown to general public.

In terms of public policy, cancer is receiving a great deal of attention, with a certain tropism for women's cancers, partly due to a captive and docile clientele (see on this same site "Breast cancer screening, the latest avatar of medical misogyny").

There are equally serious deadly diseases such as multiple sclerosis, cardiovascular disease, AIDS, diabetes that do not receive the same attention as cancer through its major National Cancer Plans.  And we are not talking about nosocomial and iatrogenic diseases. It is not a question here of a silence of the body but of a societal silence or even of an indifference or a kind of fatality difficult to explain, assuming that the State' s vocation in health care is to reduce premature mortality and increase life expectancy of its citizens.

Unlike other pathologies, even the most serious and deadly, cancer is treated apart as if it was " the devil, the invincible predator ". Because cancer is more than a disease, it is a symbol of extraordinary power.

It replaced plague of the Middle Ages, tuberculosis and syphilis of our ancestors. It represents the devious evil, the silent killer, it seems to arise without any obvious cause (except the proven cases of smoker's cancer). For experts, it remains extremely difficult to prove causal link between exposure to a substance and appearance of a cancer, as environment and genetics seem to interfere and create favourable conditions for its development until metastasis and death.

Medical imaging tools have only been available for a few decades to confirm diagnosis. In the past, we would die without really knowing what caused the death. Now we still die, but we know from what, and the prognosis is even announced with a staggering techno-scientific coldness ("you only have 6 months to live").

Medicine has made great progress in oncology, that is not the point. What is important here is to recognize that this progress had little impact on what we modestly call cancers with a poor prognosis (lung cancer, gliomas, sarcomas, acute leukemia, certain skin cancers...). .

So why do we continue to focus so much on the "fight against cancer" all around? There are many equally deadly diseases where we could make huge progress through prevention alone or simply by focusing more on research and national plans.

The fear of the nothingness of death

Cancer collectively crystallizes all our thoughts and taboos about death. Yet our societies have "killed" death by killing God.
Existentialism and atheism (with secularism, which became the state religion in France) have become modern philosophies, markers of progress in the flow of History.

In a materialistic vision, when we consider that there is nothing after death, this death having lost all meaning; all that remains is the fight against this absolute "injustice". And the fight against cancer has become the latest eschatological fight (concerning the ultimate destiny of  human race) of the postmodern crusaders in a society that has lost any project and common sense.

There are even post-humanist currents of thought that promise disappearance of death (cloning, freezing, transfer of thought from brain to hard disk...).

The discussion about death is therefore now reduced to the "right to" and not to existential questions about meaning of death, whether individual or collective. The individual, the new Man, necessarily emancipated, is supposed to be sent back to himself in the name of his personal convictions about death. And the individual has not necessarily acquired the psychic tools enabling him to take up this personal challenge. He is alone and he is afraid, very afraid and wherever he turns, he no longer finds a satisfactory answer.

If he finds a religion that offers him a turnkey life path, he sometimes signs without hesitation. Is he right? Is he wrong? In any case, we can't blame him too much in front of sidereal void.

In a completely different vision, which we will call "spiritual" (and not religious) of existence, death is a passage and this deep conviction is lived serenely, calmly, with much less anguish. It creates another relationship of trust in relation to life and death. We may feel sorrow at no longer seeing those we love, of course, but we are convinced that something of ourselves survives beyond the disappearance of our body and our self and we attach extreme moral importance to it, for example. It is a 360° vision of Life from birth to death.

Today, terror, fear is no longer in front of the Last Judgment, like our ancestors from the Middle Ages to 19th century, but in front of the void, the nothingness of death: contemporary funerals are the result (absence of rites, ...). This is an unprecedented situation knowing that burial rituals, the first sepultures date back 100,000 years and are the first markers of civilization (even Neanderthal buried his dead).

Asserting that death is nothing like Epicurus, is not true collectively. Individually and collectively it has been the stumbling block to all human life on Earth since Man became aware of his own death. As long as our societies have not transcended this drama that death has become in contemporary societies, we will not be able to get out of this teenage individualism that wants everything right away and especially not to die. There will be no turning back (with the return of traditional religions as they are) but it will be necessary that our societies include and transcend the great monotheistic religions and the other world visions transmitted by the first peoples.

If we are in a position to make this observation, we have no collective answer to date, each one being sent back to himself in front of this dizzying existential question. Death has become a personal matter to which society tries to respond as best it can. And frantic screening for cancer is a technocratic and economic societal response to calm the fear of death.

Biomedicine is still a combat medicine that works on "masculine" war premises. The exorbitant price of anti-cancer drugs, the major cancer plans and their share of "innovative" actions tinged with totalitarian desires that sometimes become ridiculous through obstinacy in reality of death, are result of this vision of the world.

The excesses of obsessive screening aimed at tracking down the slightest allegedly cancerous cell in everyone and by all means of medical imaging in order to "fight" it; are the result of the domination of the small self of the possessive individual, who wants to control everything, anguished by death he cannot control. Worse, like immature teenagers, we have wrapped this too warlike, too virile "fight against cancer" in a dripping pink emotional and regressive marshmallow, aiming to mask the lack of preparation of individuals in the face of death, their daily occupations having totally exempted them from having to reflect on the meaning of their life and death.

Our lives, our distant descent from our Cro-Magnon ancestors, the challenges that await tomorrow's humanity on a planet that will soon reach 10 billion people, deserve better than that. If, instead of turning inward and allowing ourselves to be taken over by a paternalistic state and a monopolistic economy, each of us starts to find the meaning of our lives, the courage to live, common sense in the face of individual and collective destinies, our Western societies will emerge stronger and will know how to restore meaning in the face of death. Otherwise, scenarios such as The Best of the World await us. We still have the choice, it is up to us to choose today and without delay.

Bibliography guide: 

Bertrand VERGELY , Entretien au bord de la mort , 2015

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.

NOCEBO EFFECT: WORDS AND PAINS

WHEN PREDICTION RHYMES WITH CURSE

By Annette Lexa, PhD Toxicology
Regulatory Toxicologist-Environmental Health Risk Assessor Expert (Eurotox)

A medicine that neglects the link between body and mind

Modern medicine maintains the idea that it is a rational, objective practice, resulting from a scientific approach, in constant progress and in which belief does not enter into account. It relies more and more on state-of-the-art technical tools, on computers, on statistics... It is based on the reductionist postulate that therapeutic activity is purely a molecular pharmacological activity, targeted on the diseased area (by replacing, preventing, regulating or stimulating the synthesis or release of an endogenous molecule).

Medication or therapeutic act is administered to a biological body that is supposed to be "inert", and ignores patient's living body, much like adding oil to an engine or tightening a bolt. It relies on measurement of biological parameters, using standardized anatomical-pathological criteria to diagnose or evaluate effectiveness of a treatment. And it often only addresses an effect, a consequence, but rarely the root cause.

This system of thought has made possible to make great discoveries and achieve major advances (pain, infections, surgery...). But it has also distanced us from common sense, pragmatism and the obvious. Our long dualistic tradition, inherited from Descartes, has separated body and mind and this separation maintains confusion: emotions, thoughts would have no consistency, no biological reality (if it is not by the trace of a nervous influx passage) and no influence on biological body.

This conception of the body suggests that the "spirit" would be an entity separate from the body and would have no connection with the body. This is one of the paradoxes of scientism.

Yet it is science itself that has confirmed what we have always known, that body and mind are intimately intertwined, with mind influencing body and body influencing mind, in a constant back and forth.

The placebo effect conveys hope

Medicine has introduced the placebo effect in clinical trials to evaluate therapeutic efficacy, but continues to largely ignore and underestimate this effect for ethical, dogmatic and economic reasons.

The placebo effect, which has been known for a long time, has often been ridiculed. It remains insufficiently studied for its therapeutic potential. All we know is that it acts by influencing physiological defense mechanisms of the body (pain, depression, Parkinson's disease...), brain secreting endogenous substances which in turn are capable of influencing pain circuits for example. It can even cause release of dopamine in Parkinson's patients with a dopaminergic deficit.

 But to this day, the initial mechanism (belief, emotion) that led to triggering the biochemical pathway, that ultimately results in the production of dopamine, remains a mystery to science.

And if the placebo effect, whose origin is still poorly known, is that of an object that conveys hope, the nocebo effect is even more mysterious.

 When prediction rhymes with curse 

The definition of the nocebo effect is what causes the disease by anticipation of the disease in a favorable emotional context. The subject expects a well-defined negative event via social, media, professional, popular messages, etc., and this event will occur. Of course, not everyone is sensitive to this nocebo effect. It will depend on mental state, the person's inner world, his or her way of being in the world, beliefs, capacity for self-analysis, time and social context in which this person lives.

 This is the case of voodoo death described by the first anthropologists, or closer to our societies, collective hysteria or categorization of pathologies (you are pre-menopausal, bipolar, pre-hypertensive, your child is dyslexic, he has an attention disorder with hyperactivity ...).

The nocebo effect is based on 3 main mechanisms of the mind:

  • a suggestion: negative messages and attitudes from caregivers, autosuggestion,
  •  conditioning and belief,
  •  symbolic representation: white coat effect, collective symbolic representations.

I believe, you believe, we believe... 

We have forgotten how much we are symbolic animals. Animals because we are gifted with reflexive learning abilities, symbolic because we need strong representations and signs that make sense.

We are capable of autosuggestion and suggestion (Coué method, hypnosis...), capable of mental manipulation (Mesmer's tub and magnetism, voodoo death...) and we neglect to what extent medical visit, white coat and red or blue pill, imaging devices have replaced these curious rituals which seem to us to come from another time and seem ridiculous. We have forgotten how reality is constructed by our minds and that we all need to believe and convince ourselves.

The American philosopher Charles Sanders Peirce helps us to understand how our beliefs, such as the belief that "the earlier a cancer is caught, the better the chance of a cure:

  • by tenacity (repetition) which allows us to avoid wasting time, even if it means persisting in bad faith,
  • by the a priori (it's likely so it must be true, even if it is not demonstrable), this method dispenses with any effort,
  • through the use of authority argument (intellectual manipulation, emotional extortion, physical coercion) which allows to organize crowds by discharging them from doubt and reflection,
  • by scientific approach, which is more demanding but allows for criticism of method and results.

The play "Doctor Knock or the triumph of medicine" by Jules Romain is a perfect example of the effect of convictions on health. He denounces the manipulation of a medicine that has become so powerful that it transforms all healthy people into patients who ignore themselves. Yet this dated comedy is totally modern, since today we are witnessing the creation of diseases and pre-diseases everywhere (disease mongering) and everyone wins... except the healthy individual surrounded on all sides (and still amazed to be alive in the face of so many diseases) and the real patient that an overwhelmed medicine ends up not being able to treat properly, because of an inflation of non-patients and pre-diseases cluttering up the waiting rooms.

The response to physiological stress: a possible explanation of nocebo effect

Faced with an anxiety-provoking situation, we have three options: suffer, flee or fight. If we cannot flee, we can fight. If we cannot fight, we are doomed to suffer. During stressful situations that we cannot avoid either by fleeing or by fighting (moral harassment for example), our body secretes chemical messengers, such as cortisol, which end up causing pathologies: immune system overload, heart attack, hypertension, psychic disorders (memory loss, fatigue, insomnia, anxiety, depression), infections and cancers due to immune system collapse, suicide, death.

The role of cholecystokinin (a neuropeptide secreted by the duodenum but also by the brain) is evoked: it provokes a reaction of pain in a person who is afraid (as well as nausea). The deactivation of the endogenous dopamine and opiate systems are also involved in pain.

A poorly known and largely underestimated effect

A search of the PubMed database in 2011 revealed that the keyword "nocebo" was indexed to 151 publications. In comparison, more than 150,000 were linked to the keyword "placebo". 2200 studies were related to the placebo effect while only 151 publications were related to the nocebo effect of which 20% were empirical studies, the rest being letters to the editor, comments, editorials and reviews.

Main tool for verifying the effectiveness of a therapy is a randomized, double-blind clinical trial. Two cohorts of patients are randomly selected (matched by age or other criteria), with the patient and the physician not knowing whether the therapy is placebo or active ingredient. It is easy to understand that it is ethically impossible for medicine to do harm (primum non nocere) and that the nocebo effect cannot be studied in a case of randomized clinical trials.

However, nocebo effect has been observed when switching from drugs to generics. And it was studied because there were economic stakes. The content of excipients changes, appearance of capsule and its color change, engraving, size, taste, speed of dissolution under the tongue ... Yet active ingredient remains unchanged. And yet  reporting rate of adverse reactions explodes.

I will harm myself, you will harm me, we will harm each other... 

There is no need to look for someone else to take responsibility for your own actions to harm yourself sometimes:

  • Narcissistic injury, humiliation, resentment, feeling of uselessness...
  •  Unconscious family loyalty
  • Birthday syndrome
  •  " Programmed " death
  •  Habit to obey, to be assisted, lack of audacity, of courage…

Medical profession bears its share of responsibility, often unconsciously or negligently, for certain words, silences, acts or gestures:

  • Diagnosis or prognosis (self-fulfilling prophecy) announced by the physician (aggravated by the obsession with the right to know enshrined in law)
  • Named, catalogued condition,
  • A caregiver's abrupt and clumsy verbal suggestion ("If you don't take my treatment, by Christmas, you're dead"),
  • Reading summaries of 'product characteristics' provided to patients (adverse reactions),
  • Wild decoding of conflicts by inexperienced therapists generating perverse and iatrogenic effects (theory of Doctor Hamer, known as "New Germanic Medicine"),
  • Routine practices, harmful relational interactions between patients and caregivers in hospital (lack of sensorial and emotional interactions, negative thinking).

Finally, at collective level, nocebo effect is well known:

  • Voodoo death, collective hysteria
  •  Hospital institutions: denial of suffering, hyperactivity to avoid patient relationship, mind/body cleavage, excessive security seeking, routine, mothering, regression
  • Risk of a nocebo effect on healthy ("ignorant" patients) and their descendants, a risk linked to personalized predictive medicine, "disease mongering" (creation of diseases), vaccine obsession, obsession with normality, screening for cancer, incurable Alzheimer's disease, etc.

Nocebo effect and breast cancer screening 

Systematic breast cancer screening, which is performed on a massive number of women in Western countries, most of whom will never die of breast cancer, poses an ethical dilemma for medical profession and community: by trying too hard to "do well", to "save lives", are we not doing the opposite?

Should the taboo that surrounds the panic fear of a de-spiritualized society, that has nothing left to offer other than over-medicalization to calm existential anxieties, continue to hold normative categories of populations hostage (such as women between 50 and 74 years of age for example)? Should economic criteria lead medical profession to betray one of its main precepts, primum non nocere?

How can a truly targeted and effective screening be carried out, while avoiding inducing a long-term nocebo effect on healthy women who may be over-diagnosed and over-treated (30% over-diagnosis, or even 50% in the case of ductal cancers in situ) and on their descendants? This is the question that professionals in healthcare system should be asking themselves today.

Because the impact of early detection of breast cancer on overall quality of life of women concerned (their well-being) is underestimated, denied and not studied at all in risk-benefit balances. And yet...

  • Chronic stress of "terror of cancer" maintained by medical profession relayed by media,
  •  Painful exams, anxiety-provoking, anxious expectations of exams and results every 2 years, misdiagnosis and diagnostic escalation,
  • Physical and psychic impacts of "preventive" breast removal, radiotherapy sessions and chemotherapy practiced in excess,
  •  Complications of surgical procedures and invasive diagnostics, nosocomial diseases,
  •  Secondary cancers induced by repeated exposure to ionizing radiation from mammograms and radiotherapy,
  • Transgenerational nocebo effect on daughters and granddaughters of women who have had breast cancer in their family.

All these consequences are not taken into account in what should be a global benefit-risk assessment in terms not only of mortality reduction, but also in terms of quality of life.

He who makes the angel makes the beast

Well-being (physical and mental) is at center of all concerns. The smallest psychological unit is set up in case of more or less traumatic events. Except apparently when it is a question of enlisting entire female populations, without any special care or precautions, in organized breast cancer screening.

This repeated examination generates chronic discomfort for a certain number of women, a discomfort that is denied and underestimated by social and medical institutions, which nevertheless try to "play it down" and trivialize it, even though it carries within itself potentially devastating individual and intimate consequences. It is somewhat as if society accepted such a price to pay, such sacrifices in name of medical progress.

We live in an anxious society, creating pathologies and spending crazy energy to repair the diseases and pollutions it has created itself (so-called diseases of civilization including diabetes, cardiovascular diseases, autoimmune diseases, cancers ...) and while our fundamental knowledge on development (and regression) of cancers by an organism is still at a standstill.

Words are a powerful tool at the disposal of modern medicine. But words are double-edged weapons that can cure but they can also kill. And medical personnel are neither prepared nor encouraged to use this formidable therapeutic tool.

Medicine, through its managerial and judicial obsession (Kouchner's law) has entered into a vicious circle that is aggressive, regressive, generating anguish and fear by creating pathologies through excessive interventionism. However, it could find its way back to the path of common sense and pragmatism, and this in interest of real patients who should be able to benefit from all the attention.

To do so, medicine could :

  • Treat both pathology and 'lived' body of patient.
  • Reclaiming a place for symbolic meaning, the word that heals and the representations of illness experienced in care practices.
  •  Ensuring symbolic effectiveness throughout diagnostic and care pathway
  • Recovering the benefits of lying (the right not to know)
  •  Avoid creating diseases by obsession with the norm
  • Discreetly practice predictive medicine based on genetic determinism, underestimating the role of epigenetics, environment and chance in the development of a pathology.
  • Above all, being pragmatic, regaining common sense (it is true what succeeds).

Finally, women, who are too docile and submissive to medical profession, should take care to reconnect with their intelligence and intuition and not rush into the spiral of screening, not to submit to it without first serenely weighing personal, intimate advantages and disadvantages that it represents for themselves.

Finally, medicine and society should ask themselves questions about meaning of life and death other than through techno-scientific answer: recognize the place of medicine, which does not make it absolute master of life and death of individuals, find meaning elsewhere without waiting, and ask medicine for more than it can give.

Beyond capture of the topic by "experts", the limits of screening open us all to exciting reflections on our fears, our fragilities, our limits, our weaknesses, our freedoms. On the meaning of our life and death. In reality, a beautiful challenge.

Bibliography 

Nocebo, la toxicité symbolique, ouvrage collectif, Collection Thériaka, remèdes et rationnalités, Jacques André Editeur, 2010, 231p.

Thierry Janssen, La maladie a-t-elle un sens, Ed Fayard, 2008, 351p.

Disease mongering ou stratégie de knock

http://docteurdu16.blogspot.fr/2009/02/disease-mongering-ou-la-strategie-de.html

The patient paradox. Why sexed-up medicine is bad for your health. Margaret McCartney.

http://docteurdu16.blogspot.fr/2015/12/the-patient-paradox-why-sexed-up.html

Raul de la Fuente-Fernandez et al. , Expectation and Dopamine Release: Mechanism of the Placebo Effect in Parkinson’s Disease, Science 10 August 2001 ,Vol. 293 no. 5532 pp. 1164-1166

Winfried Häuser et al, Nocebo Phenomena in Medicine, Their Relevance in Everyday Clinical Practice, Dtsch Arztebl Int. Jun 2012; 109(26): 459–46

Annette Lexa, Le dépistage du cancer du sein, dernier avatar de la misogynie médicale 

http://cancer-rose.fr/qui-fait-quoi/le-depistage-du-cancer-du-sein-dernier-avatar-de-la-misogynie-medicale/

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.

Breast Cancer Screening, the Latest Avatar of Medical Misogyny

ANNETTE LEXA - August 21, 2015

Value of breast cancer screening is not scientifically proven

Breast cancer screening seems obvious to women and we have all been lulled by these "evidences": breast cancer is the first cause of death in women, cancer is a horrible disease that threatens us all, the earlier a cancer is detected, the more it is cured, screening can detect small cancers that can be treated, if we do it early we will have fewer mutilating ablations.

However, contrary to what is asserted everywhere, and even on institutional sites when they intend to promote DOCS (organized breast cancer screening), women die much more in France from cardiovascular diseases 1. While breast cancer mortality has decreased slightly (from 4% to 3%), colon and lung cancer deaths have not changed over the same period [1] .

This small decrease is mainly due to the fact that women have become more attentive and better informed and that surgical and radiotherapy treatments have made great progress.

Since 2009, a scientific controversy (here, here, here, here) has developed around the risk/benefit balance of breast cancer screening, presented as the medical examination of choice that is supposed to reduce this mortality. This controversy has arisen from large epidemiological studies in various Western countries (not in France where epidemiology is a politically incorrect science to be avoided). This controversy is currently heating up with this recent American study (here) which demonstrates more masterfully that early detection not only did not reduce mortality that had become stable, but also did not reduce breast ablations.

Screening's 'assets' continue to be praised with its double reading (in France) in case of a negative result, which would be the top of the top of scientific rigor. Whereas no one seems to matter this simple question of common sense: "why not double reading in case of a positive result? ». What an arrogant and asymmetrical confidence in the infallible reading of the specialist! The risk of false positives (false cancers) with its heavy and disabling prescriptions and the risk of false negatives (with the recurrent discovery by women themselves of the famous "interval cancers" between two examinations) are systematically underestimated. And finally, the risk of developing cancer through an excess of examinations and radiotherapy (here) is most certainly underestimated, whereas recent work (here) should on the contrary incite the greatest caution with radiosensitive women.

But, obviously, the sacrosanct principle of precaution - especially when the risk-benefit balance is not proven - is much more scrupulously applied for chickens, steaks or cereals than for bodies of healthy women (not to mention the use of contraceptive pill, hormone treatment for menopause, breast prostheses, caesarean sections, periodical tampons, etc.).

Manipulative techniques to impose screening on a docile and captive female audience

 But then why have we been witnessing for years this veritable military operation of quasi-Stalinist national recruitment [2] of women to the depths of the most remote campaigns and by all means?  Doctors, institutions, associations, politicians, all enlisted for the Great National Cause with the numerical objective of bringing recruitment ideally to 70 or even 80%.  We go so far as to use "mammobiles" that travel around the Hérault department in the most remote villages to overcome the "reluctance" of "vulnerable" women and "women with a bad self-image" (I'm not exaggerating, go read here) and offer a free "useful" exam to women as early as 40).

Every year, we are entitled to the trickery of the Pink October campaign with the surge of indecent, manipulative, guilt-ridden, infantile messages, to reach women through the emotional supposed to be their main vector of communication and aiming to turn them all into cancerous ninnies ignoring themselves. Even if it means crushing individual lives, intimacy, and fulfilled sexuality, destroying couples and families (overtreating cancer is not a trivial event without risk, it is a personal drama) and leaving women in insurmountable financial difficulties because they are definitively labeled ex-cancerous (job loss, credit insurance...).

Treasures of imagination will be deployed to improve the self-image of the healthy women who are to be recruited by all means. But this does not really seem to be a priority anymore for a ex-cancer patient over 50 years old who must consider herself lucky to still be alive.

You will tell me that men also have their Movember to "fight prostate cancer". The PSA blood screening campaign was a failure and its interest was quickly questioned. It's true that men (including doctors), who care about their virility more than anything else, quickly understood the risk of overdiagnosis and overtreatment with its share of impotence and incontinence.... don't touch my virility.

Women's body control through medicine: a long history 

I will answer that this relentlessness to control women's bodies is not new in French medicine:

- The 19th century saw the invention of Charcot's hysteria, all feminine, which became the sexual neurosis of women who were believed to be deprived of a penis according to Freud.

André Brouillet, Dr. Charcot at the Salpêtrière

- With the praiseworthy aim of fighting syphilis, Pasteurian hygienism led to the control of captive prostitutes in brothels who had to undergo monthly degrading medical visits that clients never had to undergo, even though they were themselves just as vectors (of  transmission) of bacteria.

The medical visit , Toulouse Lautrec

- The control of childbirth by men from beginning of the 19th century resulted in a hecatomb of deaths in labour caused by the excessive hubris of hospital doctors who had taken over the childbirth. This hecatomb lasted until the 1930s. While 80% of pregnancies are normal, we then witnessed the increasing medicalization of pregnancy and childbirth, whose anxiety-provoking, cold and dehumanized nature did not escape any woman who experienced this event. In addition, there was an obsession with the control and normalization of this natural act with its share of episiotomies, epidurals and caesarean sections. It should be noted that this medical hypertechnicalization has not been accompanied by a decrease in maternal mortality in France.

- The invention of the oral contraceptive "pill" for women (why not for men?) became the symbol of female emancipation, of sexual liberation. However, for 4 decades, the medical profession has minimized and under-informed women about the side effects of this drug taken by women who are not ill. Yet this drug is a real endocrine disruptor classified as a group 1 carcinogen (definite carcinogen) by the IARC in 2012. The list of side effects that women docilely accept the risk of is as long as a poem à la Prévert: weight gain, cellulite, acne, headaches, depression, decreased libido, fatal venous and thrombo-embolic problems, slight increase in breast cancer and uterine cancer, etc. 

Yet no feminist, after the euphoria of the 70s and 80s, seemed to see the symbolic violence of this medicalization of women's bodies and sexuality.  In a terrible relational asymmetry, men were thus able to dispose of the bodies of women and very young girls brought by their own mothers in a irresponsible manner, and regularly complied with the medical visit to "their" gynecologist, demanding for the most scrupulous among them regular blood tests to monitor their cholesterol levels, accepting without flinching this control of their bodies and their sexuality, and sometimes serious undesirable effects of this constraining intake.

How can we speak of women's liberation ("my body belongs to me") with this passage from patriarchal submission to medical submission and to the desire of men since they are supposed to be 100% "available" from now on, and in case of a decrease in libido caused by taking the pill, they will blame themselves near their doctor-trust-sexologist? Recently, there has been concern about the urinary discharge of pill metabolites (17β-estradiol) present in aquatic environments at a concentration of around ng/L and responsible from this dose for fertility disorders and hermaphrodism in fish.

French society has not ceased to be worried about the impact of certain pesticides, brominated flame retardants, phthalates, glycol ethers, nonylphenol, Bisphenol A (a molecule that mimics estrogenic hormones) in food plastics, phytoestrogens, etc..,  on the reproductive system of humans and animals) but it continues to authorize the sale of oral contraceptives "under medical supervision" when it does not give them free of charge to teenagers who have just reached puberty in secondary school, prepared by official Natural Sciences classes where the pill is presented as a simple means of having regular periods [4] ... figure it out. Finally, how many women, struggling to start a pregnancy after 10 years or more of oral contraception, without asking themselves more than that, are complying with heavy methods of medically assisted procreation (MAP) whose violence and constraint have nothing to envy to what has just been described? What is to be thought of a Ministry of Health that advertises oocyte donation[5] without mentioning the heaviness of hormonal treatment and its possible consequences? What about companies such as Facebook and Google that encourage their employees to freeze their oocytes to fight against the biological clock by trivializing hormonal treatments of retrieval and reimplantation?

- In the aftermath, women were convinced that menopause was a pathology and medicalization of menopause was invented with hormone replacement therapy which was supposed to have a preventive role against a host of future diseases. Still today, TSH is too often given to treat simple transitory disorders sometimes felt at this time like hot flashes, night sweats, low libido or vaginal dryness, or even it is given (and claimed by some women) as a "preventive" with the promise of staying young.  Let us recall all the same that the treatment of menopause is classified as carcinogenic and that even  health authorities today encourage the greatest caution in its use.

Women were made to believe that, now that they lacked hormones, it was natural for them to suffer all sorts of inconveniences that needed to be corrected if they wanted to continue to appear socially young and sexually desirable (unless they naturally questioned at that age about their emotional life, the departure of their children, their desire and sexuality, etc.) . As each woman is unique and is her own witness, none of them can boast of the real effectiveness of TSH on her menopause and it is more than likely that a good part of effectiveness felt is a kisscool effect.

- As soon as craze for TSH waned, we witnessed the mass submission, sometimes from the age of 40, to mammography screening, a painful and anxiety-provoking examination of uncertain benefit to reduce mortality, and which only resulted in a dizzying increase in the number of small cancers that would not have developed, or very slowly or would have regressed, and the number of unnecessary and traumatic breast ablations.
It should be noted that these last two acts of violence against women's bodies concern the "not so-youngest" who no longer represent the ideal of youth and fertility of the young woman, the eternal object of male fantasy, and to which the 50+ woman must comply.

- The trivialization of heavy, painful and sometimes dangerous surgical procedures to have silicone breast implants in order to improve their self-image, to conform to a totally constructed social norm (the very thin woman with very large breasts) and to respond to male fantasies. Would we imagine for one moment 400,000 men in France undergoing surgery to inflate their penis or testicles?

- The submission to cervical cancer vaccines of uncertain benefit, with great reinforcement of campaigns blaming the mothers of young teenagers. Here again, why should women be the main vector of the papillomavirus in question? Why has a mixed campaign not been launched targeting both young heterosexual boys - and homosexuals particularly concerned - and young girls, if not because the medical world has a captive market with women and their daughters, docile, easy to make feel guilty and educated to obey?

Social control and submission to standards 

This docility of women with regard to medical world has changed little in spite of women's emancipation. And corporations and advertisers in charge of promotional campaigns are well aware of this, when they illustrate the importance of breast cancer screening by using images of young women with perfect bust, when they are not using guilty messages depicting family and "good friends". They continue to go running "against breast cancer" (who would be for, I ask you??) wearing a pink pin, dreadful gendered color, and don't hesitate to attend Tupperware meetings stamped Pink October to convince their reluctant girlfriends to go to the nearest mammobile.

Why this excessive relentlessness of medicine with the complicity of highest authorities of the State and their squads of civil servants in Regions to want to control the normality of breasts of women and to submit them down to their intimacy?

Why can we not find the beginning of an equivalent such control of the male body and such submission in men? Why doesn't medicine strive with same deployment of means to reduce mortality from cardiovascular disease in women, which represents almost 7 times more deaths per year than from breast cancer?  Or to lower female mortality from lung and colon cancer?  It is true that the heart, lung and colon are organs that are much less sexed. Women, contrary to what they claim, have not emancipated themselves from society's control over their bodies and sexuality. They have swapped one Master (father, husband, priest...) for another, representing the Promethean techno-scientific power supposed to watch over their bodies, which are inevitably disturbed, easily maladjusted, and which, if they are not careful, are the seat of all sorts of frightening feminine pathologies, this submission obscuring the perspective of a life as a woman, as a lover, as a mother in full bloom. Worse, women are women's worst enemies: making a daughter take the pill, recruiting her good friends is tantamount to making themselves accomplices in their submission, just as women are accomplices in the excision of the youngest in other cultures.

Some (here and here) have recently questioned the misogyny of the French medical profession, but paradoxically these theses have not seduced our journalists from women's magazines, who are nevertheless quick to liberate the sexuality of their readers.  This thesis did not seem to please the various feminist movements either, refusing to see in this pseudo-emancipation another form of alienation, as Marc Girard has very well demonstrated. There is in this submission an absolute unthought, a taboo, a blind spot that the struggle for women's emancipation has been unable to see.

Still today, the majority of women are not very curious and critical of recommendations that are made to them: submissive, constrained or outright exalted followers of the Church of Depistology (Europa Donna and other Pink October with the support of Sephora, Tupperware and Esthé Lauder), they do not go to critical blogs (to those previously mentioned, I will add here and there) to have another point of view and to reflect by themselves.

Control by Church 

Even though we live today in a secularized society, the past influence of the Church still unconsciously permeates our morals and mentalities. For centuries, the Catholic Church - like all monotheistic religious institutions - has sought to insist on the inferiority of women. She has sought to control the bodies and minds of women, for whom she has always had contradictory feelings: at once docile, submissive, modest and maternal, women remain for Church also a whore temptress, a witch or a fool incapable of judgment and decision by herself. Without going back very far, let's go back some 150 years. The few progressive women of the time are often put forward, but this is to forget that in the 19th century, while the predominantly male republican minds attacked the Church, the vast majority of women continued to be kept apart from the world, confined to their role as mothers, consolers, and social workers. Fear, restraint, modesty, devotion, virtue, these were the main qualities demanded of women who had only to please God and their husbands. Education was forbidden or very limited, and it was believed that she was incapable of intellectual life. Put aside from leisure, sport and study, women were considered weak and society had to protect them from themselves.

The adulterous woman was guilty when the man could act the most natural way in the world.  The woman was excluded from any religious function, unable to relate to transcendence and easily perverted by the Devil. For a long time, menstruation, the mystery of gestation, seduction and sexual attraction, the power of women over domestic life (where she had been locked up) frightened men terribly.

Still at the beginning of the 20th century, priests questioned young teenage girls about their violently prohibited masturbation practices (testimony of my own mother who lived through this in the 1930s at the age of 10).

Since the weakening of warlike societies and religious power, women have gradually been emancipated and immense progress has been made in recent decades. Has misogyny disappeared for all that? Nothing is less certain. Today, women study, divorce, work, have children they want, can have abortions, vote and know in theory the same rights as men. But differences still exist, reminiscent of a past, paternalistic, misogynistic world that still survives in the medical world where difference in treatment between men and women, although having taken a less coercive and more inciting form, remains glaring.

Medicine and Church  

For a long time medicine and religion were confounded, in the same fear of death .

The Age of Enlightenment saw the seeds of a new medicine that was meant to be rational. Did not the doctor with his new rites of medical examination replace the priest in his immense faith in medical progress and science, his interest in so-called ethical questions, his obsession with the control of female bodies from birth to death, whether in physiological, psychological, psychiatric or psychoanalytical field? Church saw woman of the 19th century as a layer, constantly pregnant or nursing. For the past 50 years, she has been put in a chemical straitjacket in a state of constant artificial sterility, now required to live a permanent sexual life where any drop in libido is experienced as suspect. She is also told not to complain about adverse effects ("it's in their head"). Any progress? In a sense yes, of course, but it is not certain that woman has not swapped her dependence for another alienation. And that male body of society is not yet consciously or unconsciously trying to control these bodies, so different from that of men, by their formidable cyclical capacity to seduce, to engender life.

Saint, whore, witch and Ninni, the four women of God, isn't that what contemporary diktats demand of women? At the same time to be a submissive and ignorant virgin, but also a temptress and seducer.

The era of biopower

Today we have entered the era of biopower, of state control of bodies from birth to death. Public health is a vast operation of planning, a series of recommendations that seeks to control any form of epidemic (with its vaccine obsession) or the development of aggressive factors (such as cancer); for this, it must also control medical power, doctors.

By necessity of management, the biopower has equipped itself with performance tools. There are no longer individuals, there are only medical images, protocols, populations, statistics. Worse, this biopower is tainted by cynical and soulless consumerism and it knows perfectly well how to talk to "health care consumers" under the guise of simplistic, soft and guilt-ridden arguments mixing fear, security and precaution and enjoining individual well-being as the only eschatological horizon.

The right to say "NO" 

Yet, no, we are not condemned to live our lives as women under a medical sword of Damocles, tetanized by fertility and menopause disorders, female cancers and medicalized pregnancies.

No, we are not condemned to live our lives after 50 years cahin-caha, depressed and petrified with anxiety between a mammogram and a biopsy, with the fear of one day finding ourselves mutilated (and rebuilt?), while swallowing our TSH with a glass of alcohol to pass.

We can re-appropriate our bodies in all their beauty and their fertile and erotic power.

We have the freedom not to accept to be a pre-cancerous woman who ignored herself, not to accept to give in to fatalism, fear and control, to the overbidding of long, painful, sometimes humiliating, sometimes dangerous tests, and we can build our lives with our companions in a complementary, responsible and respectful relationship without relying on misinformed doctors who have been trained only to answer our questions as normal and healthy women with tests and prescriptions.

We can demand respect for our values and preferences, in a dignified and respectful relationship with doctors.

For this, there is a wonderful natural remedy called trust in Life.

References

1] In France (latest available source: INSEE, 2011), where the life expectancy of a woman is 85 years, the main causes of mortality in women are as follows:

73,842 of cardiovascular diseases (28% compared to 36% in 1996)

16,106 lung diseases (6% compared to 8% in 1996)

10,286 of digestive diseases (4% versus 5% in 1996)

5,800 of infectious and parasitic diseases (2% compared to 2% in 1996)

and for cancers :

7,734 in respiratory tract and lung cancer (3% vs. 3% in 1996)

8,113 of cancer of the colon, rectum, anus (3% compared to 3% in 1996)

11,623 women died of breast cancer (2% compared to 4% in 1996).

2] the suppression of the Individual Screening has even been imagined by the High Authority of Health in 2011 (here)

3] France, with its 2.3 deaths per 1000 births is in 17th position in Europe in 2013.

4] http://svt.ac-creteil.fr/IMG/pdf/4emecauseregles-.pdf

5] Campaign of the Biomedicine Agency "Become a Happiness Donor".

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 chemotherapy: a fool’s market

ANNETTE LEXA , PhD in Toxicology

MARCH 8, 2016 

A priori, if we believe official messages communicated through the national cancer plan 2014-2019 (1) , we are witnessing real progress in the domain of anti-cancer therapies, and society (via patient associations) is ready to make it possible for everyone - in the name of the sacrosanct "equality of opportunity" - to have access to the best treatments, especially experimental ones. Otherwise, society and patient associations will even consider that this would be a "loss of opportunity".

Faced with the boom in oral chemotherapy, the 2014-2019 national cancer plan - which is silent on the origin of this boom - gives great importance (much more than to prevention) to improving "compliance (adherence to treatment) and management of adverse events" of new "innovative" anti-cancer therapies.

The term "compliance" (page 16 of the report) is scary and says a lot about the managerial necessity to make them accepted at all costs to the body and psyche of reticent patients by "securing" their care "pathway".

For the past 10-15 years, we have been witnessing an almost frenetic rush to bring new anti-cancer molecules to market. At the same time, the price of these new molecules is exploding. Patients are almost constrained to be enrolled in therapeutic trials.

What patients don't know is that there is no correlation between price, cost to market and efficacy in terms of survival rates. Moreover, these new molecules are not subject to rigorous clinical trials or to the search for proof of efficacy. Their efficacy - if it exists - is purely statistical and it is the standardization of treatments that prevails by type of cancer and not by type of patient. A careful reading of the scientific articles published on this subject in recent years even suggests that it is more important to put them on the market than to ensure their effectiveness and safety (3).

These drugs benefit from a fast-track marketing procedure. However, it has been proven that these drugs placed on the market prematurely have more serious adverse effects than those placed on the market more rigorously. Worse, once a molecule is placed on the market (such as bevacizumab), it is difficult to withdraw it from the market.

In the United States, of the 71 compounds approved by the FDA (Food and Drug Administration) between 2002 and 2014, the improvement in survival for all cancers combined is 2 months (5). For solid tumors, a review by the EMA (European Medicines Agency) shows an improvement of 1.5 months (3).

Currently, in Europe and in the USA, the regulatory agencies accept non-randomized trials, trials without controls, biased protocols, phase III trials when phase II was not convincing and they turn a blind eye to the quality of publications of these trials.
Worse, they accept as proof of "efficacy" new "innovative" molecules, "surrogate end points", measurements of biochemical sub-parameters, which are less costly to implement and which replace the only criterion that should prevail in oncology, survival, as a criterion of efficacy. It doesn't matter if you die in 10 days, the oncologist will look with satisfaction at your biomarkers rising.

The sky is getting a little darker when we learn (9) that a serious setback is announced in the new health law in the USA (21st Century Cures Act) whose stated objective is to make the best possible return on investment by reducing the time and number of patients in clinical trials, or even to abolish all clinical trials and replace them with "surrogate end points" (biochemical sub-parameters), in vitro and in silico studies. The USA is paving the way for a regression that is all the more serious since currently, in the USA, one third of drugs are approved after trials lasting less than 6 months and the average number of patients is 760. Underhanded negotiations around the future transatlantic treaty make this scenario increasingly likely as far as we are concerned.

In the USA, a number of oncology experts even believe that the moral red line between reasonable profits and profits has been crossed (3, 6). Partly because the poorest cannot afford to pay, as they no longer have medical insurance (a cancer treatment costs the insured about 20,000 to 30,000 dollars).

In France, costs are the same but we don't realize it because we are all covered by health insurance and optimal reimbursement.

In terms of "fight against cancer", it is also important to remember that 85% of the research is public and therefore financed by taxpayers and donations, the oligopolistic market (which relates to the oligopoly, a market characterized by a small number of sellers against a large number of buyers) of these pharmaceutical companies spending only 1.5% of its revenues on this research, between 5 to 13% on clinical trials and between 20 to 45% on marketing.

After this little clarification, we have a very different reading of the latest 2014-2019 cancer plan: the explosion of patient recruitment in early phase clinical trials of "innovative" drugs (do they really have a choice?), the public financial participation in this forced march, which is duly praised, leaves a strange bitter taste: is it the health of patients or the market that takes precedence? Not only are patients being lied to, but it is seriously damaging to both patients and research. For their safety alone, patients and physicians must demand greater rigour. Balanced health care budgets are also at stake.

Finally, it is questionable whether health agencies are serving the interests of patients or laboratories: in light of the appointment of Professor Agnès Buzyn as head of the Haute Autorité de Santé, it is reasonable to wonder (7, 8). Health agencies should regain their primary vocation, which is to ensure the protection of the public, and they should provide clear and transparent information to the public.

REFERENCES 

1. Plan Cancer 2014-2019 , LE RAPPORT AU PRÉSIDENT DE LA RÉPUBLIQUE , Février 2016

2. Au nom de tous les seins, documentaire France 5

3. Light D.W., Lexchin J., Editorials, Why do cancer drugs get such an easy ride? Rushed approvals result in a poor deal for both patients and cancer research , BMJ 2015;350:h2068

4. Prasad V et coll., The Strength of Association Between Surrogate End Points and Survival in Oncology: A Systematic Review of Trial-Level Meta-analyses. JAMA Intern Med. 2015 Aug;175(8):1389-98

5.Fojo T, Mailankody S, Lo A. Unintended consequences of expensive cancer therapeutics

- the pursuit of marginal indications and a me-too mentality that stifles innovation and

creativity, JAMA Otolaryngol Head Neck Surg 2014;140:1225-36.

6. Hagop Kantarjian et coll., High Cancer Drug Prices in the United States: Reasons and Proposed Solutions J Oncol Pract 2014 Jul 6;10(4):e208-11.

7. Les petits arrangements de la nouvelle présidente de la Haute autorité de santé (7 mars 2016) https://www.mediapart.fr/journal/france/070316/les-petits-arrangements-de-la-nouvelle-presidente-de-la-haute-autorite-de-sante

8. Le professeur Agnès Buzyn nommée Directeur de la HAS. La victoire de big onco (8 mars 2016) http://docteurdu16.blogspot.fr/2016/03/le-professeur-agnes-buzyn-nommee.html 9. Avorn J and Kesselheim A.S., The 21st Century Cures Act — Will It Take Us Back in Time? N Engl J Med 2015; 372:2473-2475

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.

Breast cancer, night work and gender inequality in the workplace

Annette LEXA

Doctor in Toxicology EUROTOX

The topic of breast cancer risk in workplace is a neglected subject

While, according to European statistics, approximately 7% of employees in the EU work at night (7.2% in France in 2010), studies on the risk of breast cancer in the workplace receive little attention. There is little scientific literature on this subject. This lack of interest is all the more paradoxical since early detection of breast cancer in women has been the subject of extreme - even meticulous - attention by technocrats and their battalions of territorial health officials since ministerial order of 2006 .

In France, primary prevention in the workplace, improvement of working conditions, occupational medicine monitoring of women at risk (night work, flight attendants) are not part of the cancer plan or the 2006 order 3 .

However, since 2008, night shift work (with irregularly alternating periods of day and night work) has been classified by the International Agency for Research on Cancer (IARC) as a probable human carcinogen. The IARC relied on animal models and epidemiological studies of jetlagged night nurses and flight attendants. These studies show an increased risk of developing breast cancer among these women compared to those who work in conventional workplaces. Night work is thought to disrupt the internal biological clock that regulates the alternation of sleep and wakefulness. In the long term, night-time exposure to light blocks the synthesis of melatonin (sleep hormone) and this leads to a decrease of immune defenses.

It is also thought that this exposure to light could alter the expression of certain genes that can lead to formation of cancer cells. The role of melatonin on estrogens is thought to explain the excess risk of breast cancer 1 and 6. On the other hand, the role of occupational exposures in the development of breast cancer in men (the male individual) has been known for a long time (solvents, ionizing radiation).

Sociologist Marie Ménoret goes further: "Zeneca Pharmaceutical, the world's largest seller of anti-cancer drugs for breast cancer, thanks to its patent for Tamoxifen, is also a producer of pesticides and other deleterious products, known to be carcinogenic. »

According to a study conducted by the Breast Cancer Fund in 2015, the risk of developing breast cancer is increased by 50% among nurses. It is multiplied by 5 in hairdressers and beauticians as well as in the food industry. It is multiplied by 5 among dry cleaning and laundry workers and by 4 among workers in the paper and graphic arts industry as well as in the production of rubber and plastic products. The risk factors are multiple and can be added to each other: job stress is pointed out, night work and frequent time differences, ionizing radiation and chemical substances such as benzene, organic solvents, polycyclic aromatic hydrocarbons, pesticides and many endocrine disruptors poorly or not at all identified by regulations.

A professional prevention for women on the cheap 

In France 2, 61% of employees report being familiar with the CHSCT ( Committee for Safety, Hygiene and Working Conditions) but 62.7% of men compared to only 59% of women. Women are therefore less well informed. Only 35% of male employees are aware of the existence of the risk assessment document, compared with 24% of female employees. This figure must be much lower when it comes to knowledge of the individual exposure form, even though it is mandatory. Worse, being a woman doubles the probability of being overlooked by occupational medicine (probably because it considers that women consult more easily in private practice). And this situation of denial makes the recognition of breast cancer as an occupational disease even more complicated - if not impossible.

"Think Breast Cancer Politically".

The invisibility of specific risks of breast cancer for women in the workplace is a glaring demonstration of the gender inequality of occupational risk prevention policies, while millions of women in Europe, often employed in small, poorly informed and inadequately monitored workplaces, are exposed to chemicals, night shifts, ionising radiation (including in medical diagnosis) and the stress of the double day 5 , which is all the more distressing for women in single-parent families.

To paraphrase Marie Ménoret, breast cancer is definitely a political issue that feminists have totally forgotten to address. The lives of women themselves are at stake. It is urgent that the younger generations take control of it.

References

1/ Travailleurs de nuit : des travailleurs en rupture, HESA Mag n°5 , 1er semestre 2012, 31-35

2/ « Chausser les lunettes du genre » pour comprendre les conditions de travail, Laurent Vigel, HESA mag,N°12, 2e semestre 2015, 12-17

3/ Arrêté du 29 septembre 2006 relatif aux programmes de dépistage des cancers

4/ Ménoret M., 2006, « Prévention du cancer du sein : cachez ce politique que je ne saurais voir », Nouvelles questions féministes, 25(2), 32-47.

5)The average working week for women is 64 hours compared to 53.4% for men. The difference comes from unpaid domestic work (26.4 hours for women compared to 8.8 hours for men).

6/ Document pdf « Travail posté de nuit et cancers » par  M. Druet-Cabanac, Y. Aubert, D. Dumont, Consultation de Pathologies Professionnelles, CHU de Limoges

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.

Mass screening for breast cancer disregards ethical values and fundamental principles of radiation protection system

By ANNETTE LEXA, Toxicologist PhD

OCTOBER 20, 2019

Mass screening for breast cancer is a technocratic monster inscribed in the law by ministerial order.

It is supposed to be based on the 9 pillars of public health policies. In its wording itself, it flouts the principle of knowledge [1] according to which objectives and actions must take into account the best available knowledge and, conversely, knowledge must meet the need for information to enlighten decisions. However, to date no study has confirmed the effectiveness of screening, based exclusively on the dogma "the earlier a cancer is detected, the better it is cured", which has not been validated in reality as mortality has not decreased since the system was introduced more than 25 years ago.

But it is even worse. The ministerial decree strongly encourages healthy women aged 50 and over to be regularly exposed to ionizing radiation from medical imaging (mammography and synthetic tomography).

The International Commission on Radiological Protection (ICRP) has established principles and values of radiation protection in order to protect populations and individuals [2]. These major principles and values are based on the regulatory use of the linear no-threshold model, which remains a conservative but contested basis [3] in view of recent discoveries in radiobiology. This probabilistic model is based on the dose-response relationship, which postulates that the number of radiation-induced cancers varies linearly with the dose received in an irreversible and cumulative manner and "without threshold" below which an exposure could be considered as having no effect.

Each ionizing particle passing through an organism has a certain probability of hitting the DNA; each impact causes a mutation that has a probability of moving to a stage leading to the initiation of cancerous proliferation. Therefore, overall probability of observing a cancer can only increase linearly with the dose received. Today we know that there is a fundamental inequality between individuals. Each individual has his or her own specific threshold of tolerance to ionizing radiation. Delivering the same dose to all while a non-negligible fraction (5 to 20%) of population has a risk of radiation-induced cancer 10 times higher than the norm is not acceptable. [4]

What are the currently recommended doses?

The recommended doses were enacted in 1991 by the International Commission on Radiological Protection (ICRP). They are valid for entire human population and do not take into account invidual susceptibilities. The commission estimates natural irradiation (radon, telluric, cosmic) at 2.5 mSv/year, average medical irradiation at 1.2 to 2 mSv/year and civil nuclear at 0.2 mSv/year.

Not everyone is equal because there are radon regions and others are not, with radon alone representing 1.2 mSv/year.

In addition, the consumption of medical imaging procedures is exploding with 70 million procedures in France per year (3), and, again for France, the annual dose received for medical diagnosis is 1 mSv/ inhabitant/year on average but can reach 20 mSv/year according to the Academy of Medicine itself, which does not hide its concern [5]. Women undergo more than men, due to the societal obsession with the breast, an accessible but sensitive organ. In the context of breast cancer screening, a woman who is not ill and is still young can also receive a much more radiant tomosynthesis exam, in a doctor's office without being warned of the risk involved. And many women are exposed from the age of 25-30 years by careless practitioners.

For the population, the dose is limited to 5 mSv per year, the maximum tolerable lifetime dose is 70 mSv.

However, doses received during medical imaging exams can lead to an excess of this limit, without taking into account individual susceptibility. For example, the monitoring of scoliosis in young girls in the past generated a dose of 0.11 Sv to the mammary gland.

Perez A-F, et al. Low radiation doses: towards a new reading of risk assessment? Bull Cancer (2015), http://dx.doi.org/10.1016/j.bulcan.2015.03.019

Mammography generates 2 x 2 mGy images spaced 3 minutes apart. Double-strand breaks (DSB) - a source of gene instability leading to the development of cancer - appear as early as 1mGy and the effect is significant around 100-300 mGy. Radiosusceptible individuals with delayed transit of the ATM repair protein simply cannot repair or poorly repair these DSBs in less than 3 minutes, and thus DSBs accumulate during mammography. The risk is all the higher the younger woman is, the more she is unaware of her radiosusceptibility status, and the more the examination is repeated every year or every 2 years. 6] (see the bibliography of Nicolas FORAY's work).

THREE MAIN PRINCIPLES OF THE RADIATION PROTECTION SYSTEM

- The rationale that states that any decision to subject a person to even the weakest possible source of ionizing radiation should do more good than harm. A sufficient benefit must be obtained to offset any costs or negative consequences. Ionizing radiation sources should not be used if there are other alternatives (e.g., no radiography if similar results are obtained with an ultrasound, it is up to physician and radiologist to make the trade-off between benefit and risk, the benefit a person receives from examination must outweigh radiological risk). Practitioners remain primarily responsible for justifying procedures they request or perform.

- The optimization of exposures to these radiations which must be at the lowest possible level;

- The limitation stating that individual exposures must not exceed dose limits recommended by the ICRP in order to avoid occurrence of stochastic (= random) effects. Each country defines regulatory limits based on ICRP recommendations.

ESSENTIAL ETHICAL VALUES UNDERLYING THE RADIATION PROTECTION SYSTEM (2) [7] [7]

Beneficence and non-maleficence 

Beneficence means doing good, and non-maleficence means not doing harm. These two related ethical values have a long history in moral philosophy, going back to the Hippocratic Oath, which requires a physician to do good and avoid harm. The use of radiation, although coupled with certain risks, can undoubtedly have desirable consequences, such as improved diagnosis and cancer therapy in medicine. But these must be weighed against harmful consequences. One of the main challenges in beneficence and non-maleficence is how to measure  benefits versus harm and risks involved. Moreover, such an assessment must be done in a transparent manner.

Prudence

Prudence is the ability to make informed and carefully considered choices in full knowledge of the implications and consequences of actions. It is also the ability to choose and act on what is in our power to do and not do.

Justice 

Justice is generally defined as fairness in distribution of advantages and disadvantages: fair compensation for losses (reparation), fairness of rules and procedures in decision-making processes. First, the principle of fairness in situations reflects personal circumstances in which individuals are involved. This is the role of regulatory dose limits, of compliance with protocols in order to reduce exposures in individuals subjected to the same radiation exposure (see the Toul irradiated persons case).

Inequality can also be seen as the inequity between the doses received by screened non-sick women, especially the youngest, compared to non-sick and unscreened women who are therefore less irradiated.

Dignity

Dignity is an attribute of human condition. It means that every individual deserves unconditional respect, regardless of age, gender, health, social status, ethnic origin, and/or religion. It is the principle of the Universal Declaration of Human Rights which states that all people are born free and equal in dignity and rights.

Personal autonomy is a corollary of human dignity: individuals have the capacity to act freely in order to be able to make informed decisions. This principle is found in "informed consent" in medicine, a principle that states that a person has the right to accept risk voluntarily and has an equal right not to accept it. This informed consent is of paramount importance when it comes to patients who are not seriously ill but are still young and healthy and who are being incited to be screened for cancer and the likelihood of  being affected is very low.

PROCEDURAL VALUES OF THE RADIATION PROTECTION SYSTEM

- Responsibility: individuals responsible for making decisions are accountable for their actions to all those who may be affected by these actions. In terms of governance, this means the obligation of individuals or organizations to account for their activities, to take responsibility and to be prepared to be accountable.

==> The sponsors of the MyPebs study, which aims to recruit women aged 40 and over to compare mass screening with a personalized form of screening, will be accountable in terms of radiation protection and will assume their responsibility when the time comes (and we will make sure they do).

- Transparency means "openness to decisions and activities that affect society, economy, and environment and willingness to communicate them clearly, precisely, quickly, honestly".

Transparency does not simply mean communication or consultation, it means accessibility to information about activities, deliberations and decisions involved and honesty with which this information is conveyed. This transparency implies that all relevant information is provided to persons concerned.

Thus, informed consent has been developed in the context of medical ethics. The prerequisites of informed consent include :

- information (which should be appropriate and sufficient)

- understanding

- volunteering (avoid undue influence)

- all of this associated with the right of refusal and withdrawal (without any prejudice such as the idea that had germinated in the sick brains of a few in the 90s, to withdraw the social rights of women who would not get screened).

For vulnerable people with limited or diminished abilities (people with disabilities, in prison, interned in psychiatric hospitals, etc.), for weak people under the influence of extorting or threatening doctors, for pregnant women, additional protection both in terms of consent and strict evaluation of the benefit/risk ratio is doubly necessary.

However, the 2006 Order [8] (7) went so far as to incite territorial officials to recruit, without information on the radio risk involved, women living in the Guyanese forest, handicapped, in prison, in order to increase the percentage of participation in mass screening for breast cancer, which is an obvious abuse of weakness.

==> By not communicating with women concerned in an honest and transparent manner about the radiation-induced risk and the intrinsic inequality of associated individual risk, mass screening for breast cancer does not respect this ethical value.

Worse, the My Pebs study (https://cancer-rose.fr/my-pebs/), funded by public money at the European level, does not respect this elementary ethical value, since it is to date impossible to freely dispose of the protocol and  women recruited are not informed of the radio-induced individual risk, all the more so as they are younger (inclusion planned from the age of 40).

-Inclusivity 

This is stakeholder participation, which involves all parties concerned in the decision-making processes related to radiation protection.

==> The 2016 citizens' consultation obviously did not respect this fundamental value of radiation protection.

CONCLUSION

By exposing women who are not ill, to ionizing radiation (mammography, tomosynthesis...), mass screening flouts the principles of justification, optimization and limitation of the radiation protection system as they currently exist, i.e. without taking into account individual inequality.

So obsessed with the promise of a fantasized benefit, screening has become blind to the inconsiderate risk it poses to non-ill women by subjecting them to unnecessary examinations, dangerous technologies (tomosynthesis) and without taking into account other possible doses received during the year.

Mass screening - and its uncontrolled extension to young women - flouts the fundamental ethical values of the radiation protection system, which are non-maleficence, prudence, justice (individual inequality in relation to radiation), transparency (lack of communication about individual risk) and inclusiveness in the participation processes.

The same is true of the My Pebs study, which intends to recruit 85,000 so-called "volunteer" women without informing them faithfully of the radiation risk involved, in defiance of the most elementary values of the radiation protection system.

  - But why so much malevolence and so little ethics, we can ask?

    - Because nature hates emptiness,

    - Because idea of doing nothing is unbearable in our mercantile society,

    - Because France hates the idea of citizens having  ability to act freely in order to make informed decisions,

    - Because  lure of gain ignores the principle of non-maleficence, prudence, dignity and equality regarding radio-induced risk.

    - Because there are lobbies (Europa Donna, etc.)

    - Because women have a propensity to subordinate themselves to medical authority from which they are struggling to emancipate themselves, and the market knows it.

Bibliography

[1] Plaidoyer pour l’abrogation de l’arrêté ministériel du 29 septembre 2006 encadrant le dépistage du cancer du sein , Annette LEXA, 2016.

[2] ICRP, 201X. Ethical foundations of the system of 37 radiological protection. ICRP Publication 1XX. Ann. ICRP XX(X), 1–XX.

http://www.icrp.org/docs/TG94%20Draft%20for%20Public%20Consultation%20(20April2017).pdf

[3] https://fr.wikipedia.org/wiki/Lin%C3%A9aire_sans_seuil

   - Argument in favor of the linear no-threshold model: Epidemiological studies have shown an increased risk of cancer at doses of 10 mGy. The carcinogenic effect of doses of the order of 10 mSv is proven in humans. From 10 mGy, the linear no-threshold relationship correctly reflects the dose-response relationship in the Hiroshima and Nagasaki cohort. At doses below 10 mSv, the irradiated cells are crossed by only one trajectory and the effect of each trajectory is an independent stochastic event. The nature of the lesions thus caused and the probability of repair and elimination of the damaged cells do not depend on the dose or the flow rate. The probability that an initiated cell will give rise to cancer is not influenced by lesions in neighboring cells or adjacent tissues.

- Some of the arguments in its favour have lost some of their value, in particular due to numerous results from radiobiology laboratories: Even if ionizations are independent, there may be group effects via cellular communication mechanisms; The efficiency of chromosomal damage repair is directly dependent on the dose rate, with the possibility of hypersensitivity to very low rate radiation; The development of cancer depends not only on an isolated cell but also on the surrounding tissues, which may contribute to its evasion of the immune system; The effects of one irradiation at a given time may depend on previous irradiations (adaptive response).

To these arguments against, we must now add individual susceptibility (genetic and epigenetic) leading a non-negligible part of the population (about 20%) to a risk of radio-induced cancer according to its own tolerance threshold, previously neglected in studies mixing radio-induced and spontaneous cancer with age.

[4] MODULE NATIONAL D'ENSEIGNEMENT DE RADIOPROTECTION DU DES DE RADIOLOGIE, Principes et mise en œuvre de la radioprotection, Drs J.F. Chateil, H. Ducou Le Pointe et D. Sirinelli, 2010. http://www.sfrnet.org/data/upload/files/10_objectifs_et_principes.pdf

[5] De l’usage des Rayons X en radiologie (diagnostique et interventionnelle), à l’exclusion de la radiothérapie. Rapport et recommandations. Dubousset J., Académie Nationale de Médecine, 2016. http://www.academie-medecine.fr/de-lusage-des-rayons-x-en-radiologie-diagnostique-et-interventionnelle-a-lexclusion-de-la-radiotherapie-rapport-et-recommandations/

[6] https://cancer-rose.fr/en/2020/12/29/predictive-test-for-radiotherapy-reactions-women-at-high-risk/

[7] https://cancer-rose.fr/en/2020/12/15/radiotoxicity-and-breast-cancer-screening-caution-caution-caution/

[8] Arrêté du 29 septembre 2006 relatif aux programmes de dépistage des cancers

https://www.legifrance.gouv.fr/affichTexte.do?cidTexte=JORFTEXT000000460656

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.

Secondary hematological cancers after treated breast cancer

September 19, 2019

Article from January 2019, Summary by Cécile Bour, MD

Evaluation of the Incidence of Hematologic Malignant Neoplasms Among Breast Cancer Survivors in France

JAMA Network Open. 2019;2(1):e187147. doi:10.1001/jamanetworkopen.2018.7147

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6484549/

download PDF 

Authors :

Marie Joelle Jabagi, PharmD, MPH; Norbert Vey, MD, PhD; Anthony Goncalves, MD, PhD; Thien Le Tri, MSc; Mahmoud Zureik, MD, PhD; Rosemary Dray-Spira, MD, PhD

About this study

This is a cohort study. All French women between the ages of 20 and 85 years who were diagnosed with breast cancer and did not die (referred to as "survivors"), between 2006 and 2015, were included and were followed up until the onset of hematological cancer, or until death, or until loss of follow-up, as the case may be. Comparisons were made with all French women in general population enrolled in general health insurance plan each year from 2007 to 2016. Data from the SNDS (containing data from the PMSI and the CepiDC) were analyzed.

Results

The different types of hematological neoplasia considered were acute myeloid leukemia, myelodysplastic syndrome, myeloproliferative neoplasms, multiple myeloma, Hodgkin's lymphoma or non-Hodgkin's lymphoma, acute lymphoblastic leukemia, lymphocytic lymphoma. The incidence (number of new cases) of these different types was estimated and compared to the incidence in women in general population.

In this study of 439,704 French women, women with a diagnosis of breast cancer who had not died from it, had a statistically standardized higher incidence of acute myeloid leukemia and myelodysplastic syndrome compared to women in general population. There was a slight increase in the incidence of multiple myeloma and acute lymphoblastic leukemia.

French women participating in the study who had breast cancer in the last decade were 3X more likely to develop acute myeloid leukemia and five times more likely to develop myelodysplastic syndrome than women in  general population. Several previous studies have linked these pathologies to chemotherapeutic agents, radiotherapy, and taxotere therapy (adjuvant treatment of breast cancer, see HAS 2015 advisory). (See studies [1])

It cannot be ignored that hematological risk of malignant neoplasm reaches peaks within specific time frames after breast cancer.

The annual incidence of acute myeloid leukemia in these patients from this study, increased during the first few years following diagnosis of breast cancer, with an early peak around year three and a subsequent peak around year eight. This finding is consistent with previous studies indicating the presence of 2 types of acute lymphocytic leukemia associated with treatment.

The authors suggest that the latency of onset may depend on the age of the patient at diagnosis, type of therapy and dosage regimen, and also on the limited time of follow-up in the study (even later cases may occur that have not been reported here).

The majority of secondary leukemias are of the myeloid type, but it is estimated that acute secondary lymphoblastic leukemias account for 10% to 12% of all secondary leukemias, with breast cancer being the most common cancer causing these secondary pathologies. In this study, there was a two-fold increase in the incidence of acute lymphocytic leukemia in breast cancer "survivors". Some studies showed that irradiation and chemotherapy were associated with pathogenesis [2], while other studies suggested that prior therapy plays a less important role in secondary acute lymphocytic leukemia than genetic predisposition [3].

A 50% increase in the incidence of multiple myeloma was observed in breast cancer survivors in this study. This slight increase has not been reported and needs to be further investigated, particularly the role of susceptibility due to heredity in BCRA1 and BCRA2 mutation carriers. [4]

Conclusion

This study reveals that acute myeloid leukemia, myelodysplastic syndrome and acute lymphoblastic leukemia are more common in treated women who do not die from breast cancer than in women in the general population; this is of concern and according to the authors, ongoing surveillance of hematological malignancies and further research into the underlying mechanisms of these diseases is needed.

This study is intended to better inform practicing oncologists; patients with a history of breast cancer should be informed of the increased risk of developing certain hematologic malignancies after their first cancer diagnosis.

Recent discovery of genetic signatures that guide treatment decisions in early stages of breast cancer could reduce the number of patients exposed to cytotoxic chemotherapy and its complications, including hematological cancers[5].

It is therefore necessary to continue monitoring trends in the occurrence of hematological cancers, especially as approaches to cancer treatment are evolving rapidly. Further research is also needed to evaluate  treatment modality in cases of genetic predisposition to secondary malignancies.

Comments :

(EDITOR'S NOTE)

Concerns about overdiagnosis are all the more justified because women, some of whom are at high risk and unaware of it [6], may be receiving radiation therapy that they would not have needed, and are being precipitated by screening for a disease they would not have had in its absence, with potential risks inherent in treatment, including secondary hematological diseases.

This has been shown in studies that suggest that risks of treatment may outweigh the expected benefit of screening. [7]

As our dotted poster on the home page of the site (bottom of the page, "poster") shows, the benefit/risk balance in screened women is far from being in favor of benefit, due to overdiagnosis, radiation-induced cancers, radiation-induced coronaritis, surgical and anesthetic accidents, post-treatment thromboembolism, and secondary hematopathies.

The Cancer Rose Collective regrets that these elements are not explicitly detailed in the information brochure given to women who are part of the new study on personalized screening, the MyPebs study. Overdiagnosis is minimized at rates that are currently obsolete, overtreatment, a tangible consequence resulting from overdiagnosis for women, is not stated, and consequences of treatment are not mentioned[8].

References

[1] Studies about relation between breast cancer treatment and Hematologic Malignant Neoplasms:

  • SmithRE,BryantJ,DeCillisA,AndersonS;National Surgical Adjuvant Breast and Bowel Project Experience. Acute myeloid leukemia and myelodysplastic syndrome after doxorubicin-cyclophosphamide adjuvant therapy for operable breast cancer: the National Surgical Adjuvant Breast and Bowel Project Experience. J Clin Oncol. 2003;21 (7):1195-1204. doi:1200/JCO.2003.03.114
  • PragaC,BerghJ,BlissJ,etal.Risk of acute myeloid leukemia and myelodysplastic syndrome in trials of adjuvant epirubicin for early breast cancer: correlation with doses of epirubicin and cyclophosphamide. J Clin Oncol. 2005;23(18):4179-4191. doi:1200/JCO.2005.05.029
  • BeadleG,BaadeP,FritschiL.Acute myeloid leukemia after breast cancer:a population-based comparison with hematological malignancies and other cancers. Ann Oncol. 2009;20(1):103-109. doi:1093/annonc/mdn530
  • Le Deley M-C, Suzan F, Cutuli B, et al. Anthracyclines, mitoxantrone, radiotherapy, and granulocyte colony- stimulating factor: risk factors for leukemia and myelodysplastic syndrome after breast cancer. J Clin Oncol. 2007; 25(3):292-300. doi:1200/JCO.2006.05.9048
  • Galper S, Gelman R, Recht A, et al. Second non breast malignancies after conservative surgery and radiation therapy for early-stage breast cancer. Int J Radiat Oncol Biol Phys. 2002;52(2):406-414. doi:1016/S0360-3016 (01)02661-X
  • RenellaR,VerkooijenHM,FiorettaG,etal.Increased risk of acute myeloid leukaemia after treatment for breast cancer. Breast. 2006;15(5):614-619. doi:1016/j.breast.2005.11.007
  • CurtisRE,BoiceJDJr,StovallM,FlanneryJT,MoloneyWC.Leukemia risk following radiotherapy for breast cancer. J Clin Oncol. 1989;7(1):21-29. doi:1200/JCO.1989.7.1.21

[2]

  • HsuW-L,PrestonDL,SodaM,etal.The incidence of leukemia,lymphoma and multiple myeloma among atomic bomb survivors: 1950-2001. Radiat Res. 2013;179(3):361-382. doi:1667/RR2892.1
  • AndersenMK,ChristiansenDH,JensenBA,ErnstP,HaugeG,Pedersen-BjergaardJ.Therapy-related acute lymphoblastic leukaemia with MLL rearrangements following DNA topoisomerase II inhibitors, an increasing problem: report on two new cases and review of the literature since 1992. Br J Haematol. 2001;114(3):539-543. doi:1046/j.1365-2141.2001.03000.x

[3] GanzelC,DevlinS,DouerD,RoweJM,SteinEM,TallmanMS.Secondary acute lymphoblastic leukaemiais

constitutional and probably not related to prior therapy. Br J Haematol. 2015;170(1):50-55. doi:10.1111/bjh.13386

[4] StruewingJP,HartgeP,WacholderS,etal.The risk of cancer associated with specific mutations of BRCA1and

BRCA2 among Ashkenazi Jews. N Engl J Med. 1997;336(20):1401-1408. doi:10.1056/NEJM199705153362001

[5]

  • CardosoF,van’tVeerLJ,BogaertsJ,etal;MINDACTInvestigators.70-Gene signature as an aid to treatment decisions in early-stage breast cancer. N Engl J Med. 2016;375(8):717-729. doi:1056/NEJMoa1602253
  • SparanoJA,GrayRJ,MakowerDF,etal.Adjuvant chemotherapy guided by a21-gene expression assay in breast cancer. N Engl J Med. 2018;379(2):111-121. doi:1056/NEJMoa1804710

[6]

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

[8] https://cancer-rose.fr/my-pebs/wp-content/uploads/2019/02/Formulaire-consentement-dorigine.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.