A Guide to Health and Medicine from the GIJN

5 June 2021

Cécile Bour MD

Re-Check

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

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

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

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

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

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

Novelty of Re-Check

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

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

The guide

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

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

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

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

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

EBM

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

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

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

Levels of evidence

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

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

Presentation of data

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

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

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

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

The Grouvid study

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

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

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

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

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

Conclusion

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

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

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

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

It is a question of ethics, journalistic this time.

References

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

French consultation is discussed in JAMA

October 30, 2017

Viewpoint: https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2659560

Less Is More

Reform of the National Screening Mammography Program in France

Alexandra Barratt, MBBS, MPH, PhD Sydney School of Public Health, University of Sydney and Wiser Healthcare, Sydney Australia.
Karsten Juhl Jørgensen, MD
The Nordic Cochrane Centre, Rigshospitalet Department 7811, Blegdamsvej 9, DK-2100, Copenhagen, Denmark.
Philippe Autier, MD, International Prevention Research Institute, Lyon, France.
(Mr. Pr. P.Autier entrusted us with the French translation of the article reporting on the French citizen consultation.)

The authors summarize the conduct of the citizen inquiry

In October 2016 the French Minister of Health released the report of the independent consultation into mammography screening.
The report presented two options: ending the national breast cancer screening program, or ending the current program and implementing a radically reformed program. (1)

In 2004, after years of ad hoc screening, a national mammography screening program was introduced.
Every two years, women aged 50-74 receive invitations by mail for mammography screening, covered by health insurance. Over time, however, doubts have emerged about the program's reach, accessibility, effectiveness and potential adverse effects of overdiagnosis and overtreatment.

Why and how the French inquiry took place?

In September 2015, the Minister of Health announced what the French know as a "citizen and scientific inquiry," and appointed an independent steering committee to oversee it.

This committee brings together leading health professionals, (in oncology, general medicine, epidemiology, public health) and social science professionals (in anthropology, law, economics, history of science, and bioethics), all without financial or academic links to breast cancer screening.

In addition to reviewing evidence reviews on specific issues (provided by a technical committee of the French National Cancer Institute (Inca)), the committee also oversees a "civil dialogue," a concept inherited from the French Revolution of 1789.

A website provides information about the consultation and invites the public to submit their opinions. Two pillar consultations were set up: a citizen consultation of a group of 27 women from different regions of France and different socio-economic groups, and a parallel consultation of a group of 19 health professionals with relevant professional experience but no connection to breast cancer screening. Each of these consultations took place over 5 days of information, presentations, expert interviews, questions and discussions. Each focus group addressed four questions and developed a collective response to each. A final public meeting was held to present the recommendations and answer questions.

The steering committee considered the scientific controversy over mammography screening to be particularly intense, focusing on the uncertainty of its benefit and concerned with the issues of overdiagnosis and overtreatment. The national screening program had never been controversial, despite extensive discussion in the scientific literature.

The committee found that the evidence on breast cancer screening outcomes was limited, coming from old trials and studies, none of which had been conducted in France.
The committee members pointed out that knowledge of the natural history of breast cancer was incomplete, and that breast cancer screening therefore infringed a fundamental principle of screening (2), namely that the natural history of the disease from latent to declared disease should be adequately understood. In addition, the committee was critical of the information promoted during Pink October, or breast cancer awareness month, which the committee felt overstated the benefit of screening. The citizens concluded that they did not want to keep the breast cancer screening program as currently defined and implemented. They spoke of the difficulty of making recommendations without regular evaluation of the program, and the importance of measuring the impact of the program on quality of life (not just mortality). They noted the need for economic responsibility when a program is publicly funded. The health professionals consulted recommended continuing the program, but with major reforms including improvements in the quality of information, accessibility, and evaluation of the program.

The steering committee recommended that the program be discontinued, or that radical reforms be made.


If the program were to be continued, their key recommendations included:

  • - Providing neutral, comprehensive information for women, the public and physicians.
  •  - Acknowledgement of scientific controversy in information for women and physicians.
  •  - Training for doctors to better assist women in making an informed decision about breast cancer screening.
  •  - A research program into the natural history of breast cancer(s) and the effectiveness of new treatment approaches.
  • -An improved program evaluation to monitor the impact of screening on quality of life, mortality, and cost impact.
  • - An end to screening of women age 50 years or younger who are ar average risk
  • - Consideration of screening based on risk level, so that low-risk women could be screened less frequently or not at all, while higher-risk women could be followed more intensively.

The Minister of Health asked the French National Cancer Institute to develop a plan for reform.


April 2017 the Minister of Health published a plan composed of broad reforms intended to be implemented over several years (3).

The first immediate steps are focused on information for women so that they can make their own decisions with the help of their physician: a new medical consultation for every woman at age 50 to discuss cancer screening and prevention options (including primary prevention through lifestyle changes to reduce the risk of cancer); provision of comprehensive information in the form of a booklet accompanying screening invitations and also via an online decision aid; and additional tools and training to help physicians communicate about the benefit/risk balance and limitations of screening.

Other measures include improving access to the program, providing more support to women during the screening process, improving the technical quality of the program, and establishing a research program alongside the screening.

But the authors of the point of view in the JAMA underline that the plan does not detail how these measures will be evaluated.

What is the specificity of the French consultation?

The authors recall that this French consultation is the third independent evaluation of breast cancer screening in Europe, following those of Switzerland and the United Kingdom (4,5). All emphasized the need for comprehensive and balanced information, and all recognized overdiagnosis as a serious harm; two (the Swiss and French evaluations) made a recommendation to stop screening as currently proposed.
These results differ greatly from the recommendations of other panels, such as the US Task Force, the American Cancer Society, and the International Agency for Research on Cancer, which recently concluded that the benefits outweigh the harms of breast cancer screening and continue to recommend it. (6)

Where might these differences between different program reviews and recommendations come from?

The authors give several explanations :

1- Avoiding conflicts of interests

One explanation is that some panels may be compromised by conflicts of interest (7), something carefully avoided in the three European surveys.

2- A broader range of represented disciplines

It is also important that views from a broader range of disciplines be represented, so that panel members with expertise in the humanities and social sciences will be more likely to raise social, legal, and ethical considerations for discussion regarding population screening.

Juries making recommendations for medical treatment do not necessarily look for the values and preferences of citizens in making their recommendations. But screening programs do impact the lives of asymptomatic citizens, and so their choices are important in decision-making.

3- Inclusion of a citizen perspective

That the French consultation included a citizen perspective in its investigation and recommendation process is another possible explanation.

One approach to mammographic screening is to ask individuals to make their own informed decision to participate, with assistance in the form of shared decision making.
This approach, although often advocated (8), is challenging to obtain and sustain.(9)

Seeking the views of informed citizens and their preferences through a collective approach is an alternative that provides a sharp contrast to shared decision-making with one patient at a time.

In Conclusion

The authors share the view that community discussions, such as in the French inquiry, allow for the sharing of meaningful information and the exchange of opinions among citizens from diverse backgrounds. This kind of deliberative process offers advantages for developing actions with implications for other countries, well beyond breast cancer screening.(9,10) 

References :

1. Comité d’orientation de la concertation citoyenne et scientifique sur le dépistage du cancer du sein. Rapport du Comité d’Orientation. Boulogne-Billancourt, France: Institut National du Cancer; 2016. http://www.concertation-depistage .fr/. Accessed September 14, 2017.

2. WilsonJMG,JungnerG.PrinciplesandPracticeof Screening for Disease. Geneva, Switzerland: World Health Organization; 1968.

3. Plan d’action pour la rénovation du dépistage organisé du cancer du sein: Ministère des Affaires Sociales et de la Santé; 2017.

4. MarmotMG,AltmanDG,CameronDA,Dewar JA, Thompson SG, Wilcox M. The benefits and harms of breast cancer screening: an independent review. Br J Cancer. 2013;108(11):2205-2240. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3693450/

5. Chiolero A, Rodondi N. Lessons from the Swiss Medical Board recommendation against mammography screening programs. JAMA Intern Med. 2014;174(10):1541-1542.

6. Jørgensen KJ, Kalager M, Barratt A, et al. Overview of guidelines on breast screening: Why recommendations differ and what to do about it. Breast. 2017;31:261-269.

7. NorrisSL,BurdaBU,HolmerHK,etal.Author's specialty ans conflicts of interest contribute to conflicting guidelines for screening mammography. J Clin Epidemiol. 2012;65(7):725-733.

8. ElmoreJG,KramerBS.Breastcancerscreening: towardinformeddecisions.JAMA.2014;311(13): 1298-1299.

9. IrwigL,GlasziouP.Informedconsentfor screening by community sampling. Eff Clin Pract. 2000;3(1):47-50.

10. RychetnikL,CarterSM,AbelsonJ,etal. Enhancing citizen engagement in cancer screening through deliberative democracy. J Natl Cancer Inst. 2013;105(6):380-386.

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.

Inequalities of screening during Covid-19, interview with V.Prasad

June 3, 2021 synthesis by Dr. C.Bour

Video and interview with V.Prasad, American hematologist-oncologist and health researcher, associate professor at the University of California, San Francisco

An article has just been published in JAMA Network Open entitled "Socioeconomic and Racial Inequities in Breast Cancer Screening during the COVID-19 Pandemic in Washington State."

The authors note the disruption of so-called preventive care, a disruption that has been highlighted by several international studies in Europe and the United States, with a decrease in the uptake of mammography screening.

Inequalities

Yet, while all people suffered from COVID-19, say the authors, it hit harder in some places and disrupted routine care differently.

The authors report the number of women who had mammograms in 2018, 2019 and 2020. And it seems that during COVID-19, there were half as many mammograms as the previous year, namely a reduction of 49%, so almost by half.

This reduction was more likely to affect individuals by racial and socioeconomic status.

Specifically, among Hispanic women there was a greater reduction in mammography usage during COVID-19.

Then, explains Vinay Prasad in the video, Americans Indian were affected, then Asians, then black populations, and finally white populations. Whites had the smallest change in their use of mammographic tests compared to 2019.

Rural areas also experienced a greater decline in mammography screening.

Finally, the authors also looked at insurance status. Those who were forced to pay by themselves for care had a greater decline in screening use, logically enough.

What does it all mean?

The study, according to Prasad, essentially and interestingly shows that cancer prevention service use declined significantly during the pandemic, but that it did not decline equally for everyone.

People are much more likely to decrease their use of so-called preventive care if they are Hispanic, if they pay for it themselves, and if they live in rural areas, he said.

According to V. Prasad, it will be a lot more difficult to disambiguate the effect of mammography screening from the effect of all the other socioeconomic variables that exist and come into play here.

Clearly, it will be very difficult to see any effect of effectiveness or ineffectiveness of screening because of the socio-economic biases that pollute the analysis.

There is evidence that health care is disrupted, and more so along socio-economic and racial dimensions, but, says V. Prasad, once this is noted, it does not mean that women who do not get their mammograms are suffering disproportionately.

Already in May 2020, Gil Welch and V.PRasad wrote an article (CNN opinion) titled "The Unexpected Side Effect of COVID-19," which we discussed on Cancer Rose, and they prophesied this dramatic reduction in routine care that would allow to examine its impact.

Decreasing this routine care would allow, among other things, to examine the effect on overdiagnosis and boldly ask the question: would reducing these preventive tests maybe be better? Is this a bad thing or a good thing?

Conclusion

The Covid-19 pandemic was swift and frightening, and it forces us to rethink what is most important in public health, and obliges us to examine what is valuable and what is not.

Shouldn't we focus on the problems of unequal access to care, depending on geographical area or socio-professional category, and put priority public health problems into perspective?

We must simply think, not always about the 'damage' of not using screening, but rather about the potential bonus of 'non-damage' , thanks precisely to the avoidance of many tests whose effectiveness and relevance are not always proven.

In this context, we should mention a study that is currently underway to evaluate overdiagnosis through the "natural experiment" of reduced screening during the pandemic.

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.

Quaternary prevention

May 22, 2021,

Cécile Bour, MD

A point of view in The Guardian

A researcher, Dr Ranjana Srivastava, Australian oncologist and author (book "A better death"), shares in The Guardian her personal experience at the end of her training and the questions she had regarding the systematic tests offered to patients, and which imply the responsibility of the doctors, although they are not always aware of it.

As the author explains in her testimony, every test is supposed to have a clinical rationale, and poses (or it should pose) an ethical dilemma for the prescriber.

This point of view of the author was motivated by the death of a woman (in Melbourne, Victoria, April 2021) following a coronary CT angiogram. This examination, performed routinely, was offered by the company where the woman worked and was not justified by any clinical indication. The examination was complicated by the occurrence of anaphylactic shock after the injection of the contrast medium. 

This case appears to be unthinkable and, according to Dr. Srivastava, provides a major lesson to us, health professionals, but also to patients, who are increasingly anxious, carcinophobic and seeking routine examinations.

We are living in a society where people want to feel good and have access to simple ways of preventing disease and its consequences. The public is misled by media messages that are very often enthusiastic and lacking in discernment, and that praise routine screening to "be safe". Pink October is the emblematic example.

The author of the article warns of a very real risk: with the profusion of medical tests marketed as "convenient" and also for many "non-invasive", it is tempting for the public to consider them as an alternative to well-proven, but more difficult to follow recommendations, such as eating with moderation, exercising and working on bad hygienic and dietary habits. 

Actually, it is somewhat the same kind of concern that one encounters for the promoted but very controversial screening of lung cancer by low-dose CT scans, and the french Academy of Medicine has raised the argument that a good primary prevention campaign is certainly more relevant.

It is difficult for the public to understand how anything labeled "medical" can be harmful to health, yet there is ample evidence that unnecessary testing can cause harm.

The scientist cites the example of South Korea, which has introduced a national screening program for certain cancers, including thyroid cancer. Thyroid cancer diagnoses have increased 15-fold in 20 years, while mortality has remained stable, according to a study in the New England Journal of Medicine

Indeed, one third of adults are believed to have tiny papillary thyroid cancers that remain asymptomatic throughout life. But almost the entire population of South Korea that has been diagnosed with thyroid cancer through screening has undergone major surgery or radioactive iodine treatment, each with potentially serious complications. 

This is why it is important for doctors and patients to understand the benefits and risks of a screening test before recommending it.

In another example, oncology researchers have just reported their disappointment with the results of a three-decade study on ovarian cancer[1] [2] [3] involving more than 200,000 women, which found that screening for ovarian cancer via a blood test and ultrasound provided early detection but no survival benefit.
Ovarian cancer is almost always diagnosed at a late stage and associated with poor survival.
The researchers explained educationally that diagnosing ovarian cancer at an early stage does not change when patients die, because the cancer is inherently more aggressive.[4] 
However, they point to many recent advances in cancer treatment, including symptom management, targeted therapies, and the hope of using knowledge about evolution of the disease, to create better screening tests in  future, and to conduct further studies. 

Dr. Srivastava emphasizes the professionalism of these researchers and oncologists, which neither feeds the hype nor extinguishes hope. This is what every physician should seek.

Patients have a legitimate right to expect information, says the scientist.

One organization, Choosing Wisely Australia, has come up with a list of five questions that every patient should keep in mind before deciding to accept a routine test: Do I need this test? What are the risks? Is there an alternative? What is the cost (financial, emotional or time cost)? What happens if I do nothing? 

It's that last question, the option of doing nothing, that so few patients ask, says Dr. Srivastava, because they have tremendous faith in their doctor's knowledge and ability to do the "best" thing.

We need to learn the lesson of moderation and never let a patient suffer through an unnecessary test.

From overdiagnosis to overtreatment

The reason why we are alerting patients to the lack of information about overdiagnosis in breast cancer, which is blatantly absent from the official documents given to women invited to breast cancer screening[5] [6], is that this overdiagnosis has a materialization, a perceptible concretization for the patients in their body. And that is overtreatment.

This concerns surgical procedures, mastectomies, which have been constantly increasing since the introduction of screening, contrary to the "therapeutic reduction" promised to women. But this is not all.

Radiotherapy treatments are also on the rise, and a recent article in the French magazine Que Choisir warns about the poorly evaluated side effects of radiotherapy.

The nature and quantification of the side effects of these treatments is difficult to know, the article says, because no authority lists the side effects of ionizing radiation in a systematic way.

Professor Jean-Luc Perrot, dermatologist at the University Hospital of Saint-Etienne, raises the problem of evaluating the relevance of a treatment when we do not know all of the undesirable effects that this treatment generates. This question emerges in the face of the observation of skin cancers, obviously radiation-induced, in people who have been irradiated for other cancers.

According to this practitioner, a centre recording the effects, even late, of radiotherapy would be indispensable, but the proposal for a dedicated observatory, relayed by the ISRN (Institute for Radiation Protection and Nuclear Safety) more than 10 years ago, has never been followed up.

The assertion of "less heavy" treatments promised to women thanks to screening, as presented on the official INCa website (french national cancer institute), appears all the more cynical as overdiagnosis is barely explained. Over-treatment, although mentioned in the title of the paragraph, is nowhere explained on the site[7]. And to suffer the heavy consequences of a possibly useless radiotherapy is intolerable.

In this context, it is impossible not to mention the thorny issue of carcinoma in situ, a particular entity of breast cancer, largely over-detected by screening and treated by radiotherapy. Their treatment and the treatment of their recurrence do not reduce the number of deaths due to invasive breast carcinoma.

The question is not to propose a "light" treatment whose lightness is relative, or a more "targeted" radiotherapy. The question is rather to not propose a treatment at all to women  who are going to be treated because of an unnecessary detection of cancer that would never have affected them in the absence of screening.

Quaternary prevention

This point of view brings us to quaternary prevention.

This term has recently changed its meaning; initially used for all palliative care of a patient who has exceeded the curative stage, it now designates all actions carried out to prevent patients and more generally populations from over-medicalization, avoiding invasive medical interventions by favouring ethically and medically acceptable procedures and care.

The central precept is primum non nocere.

The means are narrative-based medicine and evidence-based medicine (EBM).

    - Narrative-based medicine

This is listening to the patient and involves adapting the "medically possible" to the person's needs and demands.

    - Evidence-based medicine

EBM is based on a tripod:

1) external experience, which basically refers to scientific studies

2) Internal experience: what we learn from our professional practice

3) patients' preferences and values.

This notion of quaternary prevention will undoubtedly be at the center of public health concerns in the future, because over-medicalization, which is costly both in terms of health care and human lives, also raises the question of the financial costs absorbed by this unnecessary medicine, which creates needs and encumbers the field of "prevention".

On this subject, it is worth reading the article co-authored by several doctors in 2011 which makes quaternary prevention one of the essential tasks of the doctor: Quaternary prevention, a task of the general practitioner

In 2020, an article[8] was published proposing recommendations to limit and stop unnecessary routine examinations in primary care, which we have previously covered.
https://cancer-rose.fr/en/2021/01/20/scaling-back-in-health-care-more-shared-decision-making-and-thoughtful-consideration-of-recommendations/

In conclusion

It is essential that all health professionals become aware of the importance of quaternary prevention, i.e. the protection of populations from deleterious overmedicalization.

At the same time , public health education is also needed, but unfortunately there is a lack of official and media support. It is necessary to make people understand that it is in the interest of patients to conceive medicine within a relevant approach to care, without abuse, and above all towards a de-escalation of irrelevant routine care.

References

[1] https://www.news-medical.net/news/20210517/Early-detection-of-ovarian-cancer-does-not-translate-into-saving-lives.aspx

[2] https://www.lapresse.ca/actualites/sante/2021-05-18/depistage-du-cancer-de-l-ovaire-deception.php#

[3] https://www.theage.com.au/national/desperately-disappointing-setback-for-ovarian-cancer-screening-hopes-20210512-p57reg.html?btis

[4] We have now learned that cancer does not develop in a linear manner, but that there are a multitude of possibilities, with slow, even nonprogressive cancers, while others may evolve quite fast, and are intrinsically immediately aggressive, due to their molecular characteristics. Read here: https://cancer-rose.fr/en/2020/11/30/how-does-a-cancer-develop/

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

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

[7] https://cancersdusein.e-cancer.fr/questions/surdiagnostic-surtraitement-quest-ce-que-cest/

[8] https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2770724

Read more : The dark side of early detection

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


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

Screening propaganda

Marc Gourmelon, MD, November, 1st, 2020

"1 lie repeated 1000 times becomes the truth”.

This is one of the well-known principles of propaganda. (1)

It has been well studied in political field and more particularly in dictatorships. The sentence in the title is historically attributed to Joseph Goebbels, who headed the Ministry of People' s Education and Propaganda under the Nazi regime.

But propaganda is not a prerogative of totalitarian regimes, whether of the right or the left. As Noam Chomsky writes, "Propaganda is for democracies what violence is for dictatorships. "Propaganda is a concept designating a set of persuasion techniques, implemented to propagate with all available means, an idea, an opinion, an ideology or a doctrine and to stimulate the adoption of behaviors within a target public. These techniques are exercised on a population in order to influence it, even to indoctrinate it. " (2)

Clearly, the insistence on promoting breast cancer screening by mammography is propaganda. Indeed, there is an intention to "propagate a doctrine" according to which screening saves lives and this is in total contradiction with what independent scientific studies tell us.

The goal: "adoption of behaviors within a target audience", in this case, to perform a screening mammogram within the women target population. It is noteworthy that the desire to promote breast cancer screening by mammography has been a steady feature over the past 20 years, and has been accentuated with the adoption of the organized screening program in 2004, following the 2003 cancer plan. (3)

However, as early as 2015, following the consultation of French citizens on the topic, organized screening should have been stopped in France. However, this was not the case because conclusions of this consultation were "confiscated" to allow the continuation of this screening. (4)

All means are good to promote it. The Pink October campaigns that come back year after year are proof of this. All means are good to promote it.

But the propaganda goes farther.

PUBLIC AGENCIES

The latest report of the IGAS-General Inspection of Social Affairs, an independent organization, recommends "encouraging the use of screening, regardless of the methods used". (5)

OPINION LEADERS AND MEDIA

But also, any "open mic", any offer to speak in the media, be it radio or television or the written press, allows many doctors to spread the propaganda for screening.

We recently heard Professor Axel KAHN, a medical expert and president of the Ligue contre le cancer (League against cancer), sounding the alarm on France Info radio channel, in favor of this screening (6).

Many techniques of propaganda are therefore found in this " call " (2)

- fear

- call to authority

- false statement: "Covid-19 is much less serious than cancer”

- “Media influence: radio, television, press, advertising, internet " is also present because this call is relayed by : the newspaper Sud Ouest (7), Yahoo actualité (8), Europe 1 (9) Top Santé (10) La Croix (11) France Soir (12), and this a non-exhaustive list.

Here, the COVID19 crisis, although far from being related to the problem of breast cancer, is used to promote screening. In a similar way, we read in an article in Le Monde on 26 October 2020 (13) the following comments:

"The figures are also worrying when it comes to screening, which has stopped for twelve weeks. The number of mammograms within the framework of organized breast cancer screening for 50 to 74 year olds has totally collapsed. On the Ile de France and Hauts¬ de France regions alone, their number went from about 14,000 and 9,000 respectively from mid-March to early May 2019 to zero during the lockdown, according to the French Society of Radiology."

This collapse of screening, which worries Prof. Axel Kahn so much, allows a national daily newspaper of large edition to affirm once again a lie: there is nothing to worry about if a screening which has not shown its benefit, is not carried out anymore.

MEDICAL ACTORS

It should be noted that many of doctors promoting screening have very strong ties of interest with it.

The French Society of Radiology finds it disturbing that the number of screening mammograms has totally collapsed. But is the health of women their concern? Or are there other, non-medical concerns that are preoccupying this learned society? (14)

CONCLUSION

We should not let ourselves be "blinded" by propaganda. We must remain lucid and recognize in these repetitions, carried by media more concerned by " buzz " than by a critical work, a propaganda effect, again and again.

Will this propaganda and disinformation ever stop? One can doubt it considering the last news. (5)

Yet the well-being and health of women are at stake.

Références

(1) https://nospensees.fr/mensonge-repete-mille-se-transforme-t-verite/

(2) https://fr.wikipedia.org/wiki/Propagande#Techniques_de_propagande

(3) https://cancer-rose.fr/2020/10/19/histoire-du-depistage-mammographique/

(4) https://formindep.fr/cancer-du-sein-la-concertation-confisquee/

(5) https://cancer-rose.fr/2020/10/21/ligas-recommande-le-maintien-de-la-promotion-du-depistage-du-cancer-du-sein-par-mammographie-en-lintensifiant/

(6) https://www.francetvinfo.fr/sante/maladie/coronavirus/video-octobre-rose-axel-kahn-implore-les-femmes-de-se-faire-depister-le-covid-19-est-beaucoup-moins-grave-que-le-cancer-du-sein_4154331.html

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

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

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

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

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

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

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

(14) https://www.cairn.info/revue-les-tribunes-de-la-sante1-2016-3-page-21.htm#

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


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

The anguish of pink advocates in the face of declining participation in screening

October 6, 2020

Cécile Bour, MD

https://www.lequotidiendumedecin.fr/specialites/cancerologie/face-une-baisse-du-depistage-du-cancer-du-sein-linca-lance-une-campagne-loccasion-doctobre-rose

and

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

The anxiety-provoking communication of Pink October tries to surf on the wave of concern that the epidemic has caused among oncologists, and now tries to emphasize screening. The world of pink is worried, women who have long been manipulated[1], shamelessly incited[2] all of a sudden seem to be less enthusiastic about running and even less about running for screening.

"We need to encourage everyone to continue with screening campaigns", assures Mr. Pr. Eric Solary, president of the scientific council of the ARC foundation for cancer research. "Models indicate that the increase in breast cancer mortality will be between 1 and 5% in the next ten years."

"Faced with a decline in breast cancer screening, INCa is launching a campaign on the occasion of Pink October," proclaims the Quotidien du Médecin.

What's going on? Is the pink house burning?

Analysis

Let's analyze calmly the ever feverish messages of our institutes and health authorities, anxious, tormented, frightened and in a perpetual trance that women may turn away from their precious pink toy.

1. Assuming that there is indeed an excess of cancer deaths linked to COVID, in the years to come, it is obvious that the cause will not only be the lesser adherence to routine breast cancer screening but above all a delay in therapeutic management (by cancelling non-urgent interventions, by fear of patients being contaminated by going to the hospital or in doctors' waiting rooms), as Mr Solary admits in the article.

2. The main argument in opposition to the view of Mr. Solary is that the same model announces an increase of 2 to 5% in cancer mortality, this announced increase will concern all cancers, not only breast cancer [3].

This is the Grouvid study:

"Delays in diagnosis and treatment of cancers, linked to the first wave of coronavirus, could result in an excess of cancer mortality of 2 to 5%, five years after the start of management, according to a French study made public on Friday, September 18. These are the delays and postponements of patients' visits that have the most consequences, shows the research presented by statistician Aurélie Bardet of the Gustave-Roussy Institute in Villejuif (Val-de-Marne)."

"These delays could result in a "minimum 2% increase in cancer deaths" five years after diagnosis. This excess mortality would mainly affect liver, sarcoma and head and neck cancers. This research is based on a mathematical model that allowed an assessment of the effects of the Covid-19 pandemic on the organization of cancer care and the consequences on prognosis, taking into account the lags related to lockdown." (Grouvid study)

https://mobile.francetvinfo.fr/sante/maladie/coronavirus/coronavirus-une-surmortalite-par-cancers-de-2-a-5-liee-a-la-premiere-vague-de-l-epidemie-de-covid-19-selon-une-etude_4110821.html

Mr. Solary maintains that "The models indicate". But here we are, as far as screening and the Pink October campaign are concerned, we are mostly in communication and very little in science.

Which models, with which data in input?

"The models indicate", it ends up sounding like Kaa's song from the Jungle Book: " trust me, believe me...".

And that is difficult, because after all the misinformation of women we become doubtful to be able to trust blindly anyone...

Références

[1]https://cancer-rose.fr/en/2020/12/17/manipulation-of-information/

[2] https://cortecs.org/2016/05/

[3] https://mobile.francetvinfo.fr/sante/maladie/coronavirus/coronavirus-une-surmortalite-par-cancers-de-2-a-5-liee-a-la-premiere-vague-de-l-epidemie-de-covid-19-selon-une-etude_4110821.html

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


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

Pandemia and Screening – Short summary of what you’ve been told

March 16, 2021 C.Bour MD

October 2020

The anxiogenic communication of Pink October campaign tries to surf on the wave of anxiety caused by the epidemic, through oncologists, and now attempts to put emphasis on screening. The world of pink is worried, women who have long been manipulated, shamelessly incited, suddenly seem to be less enthusiastic to run and even less to run for screening.

Decryption here: https://cancer-rose.fr/en/2021/04/02/the-anguish-of-pink-advocates-in-the-face-of-declining-participation-in-screening/

November 2020

The pro-screening propaganda is intensifying in the middle of the Covid pandemic, however, with a privileged targeting of women: https://cancer-rose.fr/en/2021/04/02/screening-propaganda/

A study models an increase of cancers to be expected in the next years due to delays in cancer treatment, there is no mention of screening in this study, yet the media and opinion leaders make a false amalgam and present the delays in screening as main factor of an expected excess of mortality: https://cancer-rose.fr/en/2021/01/18/covid-19-pandemic-and-cancer-management/

February 2021

What if it would be the other way around? What if holding off on screening would be beneficial by reducing over-diagnosis and unnecessary treatment? What if we would study this?
A project is emerging: https://cancer-rose.fr/en/2021/02/26/drop-in-cancer-screening-during-covid-19-may-aid-research-on-overdiagnosis/

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.

Drop in cancer screening during COVID-19 may aid research on overdiagnosis

An article published on February 11 in the journal STAT tells us about a study project that consists of examining a "natural experiment" to evaluate data such as mortality or overdiagnosis in cancer screening. 

This natural experiment concerns the decline in screening tests during the pandemic. We could then examine and gauge the overdiagnosis of cancers, the real burden of screening, since it throws healthy people into the hell of the disease.

This examination would thus be done at the end of the pandemic, which seems more ethical than a prospective study where patients would have to be randomized in order to be subjected to screening or not.

(Editor's note: however, such a study seems to us to be quite feasible with good information for participants, but more costly and more complicated to set up[1]. It can just be considered that conducting a randomized study on overdiagnosis with two groups of people, perfectly informed before participation in the study, is certainly more ethical than subjecting entire populations, as is currently the case, to highly controversial screenings as to their effectiveness, without any fair information on the benefit-risk balance. This is the case for prostate cancer screening (many men are prescribed a PSA dosage without any explanation) and for breast cancer (many women, uninformed, believe that breast cancer screening is mandatory and will save their lives)).

The author of the article, Ms. E. Cooney, is a general assignment journalist at STAT, a journal of biotechnology, pharmaceutical, policy and life sciences analysis, which she joined in 2017. Previously, she was a blogger at the Boston Globe, before moving to the science editor at the Broad Institute of MIT and Harvard (a biomedical and genomics research center located in Cambridge, Massachusetts, U.S.A.).

Background

Ned Sharpless, current director of the U.S. National Cancer Institute (NCI) and professor of medicine and genetics, was alarmed by the sharp drop in the number of screenings by colonoscopies, mammograms and other cancer screening tests. His concern was motivated by models predicting an explosion in cancer rates if screening was not performed. (In France, we also had our national cancer centres forecasting the worst consequences in the event of non-screening[2]).

However, it will be the delays and postponements in the arrival of patients that will have the most consequences, according to the Grouvid study[3] presented by the statistician Aurélie Bardet of the Gustave-Roussy Institute in Villejuif (Val-de-Marne).

But in January of this year, Mr. Sharpless questioned the downside of early detection: overdiagnosis, when asymptomatic cancers that may not develop and harm the patient are detected, and the overtreatment that accompanies it. The pandemic, he says, could be an opportunity to resolve a long-standing controversy over the extent to which the disadvantages of cancer screening outweigh its benefits. "Knowing the extent to which overdiagnosis and overtreatment actually occur during cancer screening is a very complicated subject," he said. For him, the pandemic has provided an interesting natural experiment, where we could examine some of these tumours, diagnosed later. Is the fate of patients really less favorable because of a later diagnosis of their tumor?

If delays in screening - depending on the cancer and the screening test - do not lead to worse outcomes for most patients, then they could provide valuable information when we will emerge from the pandemic. To demonstrate that non-use of screening is not detrimental, the decline in screening rates should lead to a decrease in overdiagnosis, and not concomitantly result in a significant increase in the number of patients developing disabling or fatal cancers.

(Editor's note: Caution, raw rate data should be examined. In fact, if overdiagnosis could be completely eliminated, the part, i.e., the proportion of serious cancers, would then appear to be greater in the total number of cancers minus overdiagnoses, which usually amplify the total number of cancers. In fact, the proportion of serious cancers is diluted in the total cancer figure when the contribution of overdiagnosis is included in the total cancer figure. 

It is therefore necessary to look at the crude rate and not at the percentage of serious cancers in the total number of cancers identified).

For Mr. Sharpless, the time has come to examine more closely the natural history of cancers during the postponement period, and overtreatments.

Observations already available

For Clifford Hudis, a breast cancer specialist and CEO of the American Society of Clinical Oncology, tests such as colonoscopy are clearly useful. But for other cancers, the impact on survival has been less obvious.
Mr. Hudis emphasizes the difference between screening a person with no symptoms and diagnosing a person with clinical signs. ( It is obvious that under no circumstances consultation should be postponed in case of a clinical symptom).
For him, the evidence is irrefutable: Pap smears and HPV tests to detect precancerous cells in the cervix have significantly reduced mortality rates. Colonoscopy and other screening tests for colorectal cancer in adults have been similarly successful, to the point where an expert panel is recommending screening for colorectal cancer in younger people.
(Editor's note: this opinion is much more nuanced according to experts and studies [4] Perhaps we are still lacking hindsight).

There is much less certainty about the effectiveness of mammography and CT screening for lung cancer, while the use of PSA screening for prostate cancer continues to be controversial[5]. Yet we have "natural experience" with this screening.
Routine PSA testing opened the door to a sharp increase in the incidence of prostate cancer diagnoses, which rose by about 16% per year from 1988 to 1992, then by 9% per year until it stabilized in the late 1990s.
After the U.S. Preventive Services Task Force (USPSTF) changed its recommendation in 2012 to advise men against routine PSA testing, the incidence of prostate cancer has finally stabilized, in contrast to what was happening before widespread testing. And mortality has not changed!

Cooney also relates the position of Barnett Kramer, former director of the NCI's Division of Cancer Prevention: "It's not just prostate cancer where over-diagnosis and over-treatment are a concern," he says. « There are other slow-growing cancers that would never cause suffering during a patient's natural lifetime, and there are also cancers that never progress ».
“You introduce a screening test, in this case for thyroid cancer, kidney cancer, and melanoma, and you dramatically increase the incidence of cancer and prevalence of those cancers,” he declared in front of an association of health journalists.
“There are more and more people that are diagnosed with cancers, and yet you make very little impact on the mortality. They are cured. But they never would have gone on to die of the cancer anyway.”

For instance, while Mr. Kramer sees real harm in overdiagnosis, he does not want this message to encourage people to avoid seeking medical care for symptomatic cancer. “People should be alerted to making sure they seek medical attention at the earliest signs of symptoms,” he said. « We do know that ignoring advancing symptomatic disease is harmful.”

The author also quotes Otis Brawley, former Medical and Scientific Director of the American Cancer Society and now a professor at Johns Hopkins University: “There are cancers that don’t need to be cured. And that’s at least 60% of all prostate cancers and maybe 20% of breast cancers don’t need to be cured.”
(Editor's note: the 20% estimate concerns invasive carcinoma according to the first randomized studies on Canadian trials for example [8], but on the one hand these estimates are now being revised upwards, and on the other hand, if we add carcinomas in situ, 80% of which would not need to be treated, the over-diagnosis of breast cancer is estimated at almost 50%, which means that it could concern one cancer in two detected by mammographic screening [9]).

According to Dr. Sharpless, most cancers are discovered following the appearance of symptoms.
Nevertheless for him “there are plenty of people alive today because they had an asymptomatic lesion detected on some screening exam that was removed, resected, treated, and they’re cured of what would’ve been a very symptomatic cancer. The opposite argument is true, too.”, meaning: many of the living people treated by removing, resecting lesions that would never have become symptomatic.

Another factor to consider is that cancer therapies have improved. Some may be diagnosed at a later stage with delayed screening, but they are curable with effective therapies," says Sharpless. So the higher grades can be apprehended by new therapeutic approaches.

(Editor's note: P. Autier's study noted: The influence of mammography screening on mortality declines with the increasing effectiveness of cancer therapies.)

Which method for evaluation?

Eric Feuer, founder and leader of the NCI Cancer Surveillance Modeling Network Evaluation Project, has worked on NCI models predicting excess mortality from breast and colorectal cancer due to delayed screening. 
He stated that the widespread use of the PSA test was also a natural experiment.
“When screening goes up rapidly, you’re taking cases from the future,” Feuer said. « Some of those cases never would have caused symptoms, but they made incidence rise. The problem is that the PSA test doesn’t accurately predict which cancers, with or without symptoms, will be harmful and which won’t. »

For breast and colorectal cancer, Dr. Feuer will examine data from the Surveillance, Epidemiology, and End Results program (SEER) and other NCI data to see if the decline in screening rates has been followed by a decline and then an increase in incidence. He will monitor rates of positive screening tests, the stage of confirmed cancer diagnosis, and mortality data.
In addition to the SEER, the Population-based Research to Optimize the Screening Process (PROSPR) observational database will also be used to discern the effects that decreased cancer screening may have on the stage at which cancer is diagnosed, among other measures.

All this is supposed to allow the estimation of overdiagnosis, if the data return is powerful enough.

Mr. Kramer (former director of the NCI's Division of Cancer Prevention) has requested that PSA be removed from his usual blood test panel.

Professor Brawley (Johns Hopkins University professor) thinks Covid-19 is the imminent danger we should consider now. His hospital has cancelled elective operations, including radical prostatectomies.

The natural experiment on screening tests will take some time to show results.

“We’ll know in 10 years,” NCI’s Feuer said.

Meanwhile....

The director of the Canadian Breast Imaging Society said her group already has a study underway. The full transcript of the interview can be found at this link: https://www.cbc.ca/radio/thecurrent/the-current-for-feb-9-2021-1.5906730/february-9-2021-episode-transcript-1.5907645

MATT GALLOWAY: Tell me more about that. I mean, in the six months that this pandemic would have perhaps derailed or slowed down or stopped screening, what would be the change in that in terms of, you know, where cancer might be, but also, as you say, survival rates?

JEAN SEELY: Well, it's too early for us to know. And we're starting a study to look at this because we believe that this is a factor that's happening across the country. There was a modelling study done by the group at Sunnybrook, and they used a mathematical model called OncoSim, where they estimated that a six-month delay in screening would lead to 670 more advanced breast cancers in Canada and 250 more breast cancer deaths in the next 10 years. And delaying that even more than six months, which may happen with people stopping or naturally not referring themselves, would lead to an even higher number of deaths. So we are seeing this across the country.

So we can easily imagine how breast medical imaging experts will design the research to their advantage, and how they will promote it. The debate will never end, and a battle of "models" will be engaged.

Opinion of Dr. Vincent Robert, our medical statistician :

"Apart from the fact that this is only a model (and with another model we would certainly find something else), which statistician, and with which tool, would be able to spot an increase of 250 deaths among the random fluctuations of the annual number of deaths (with 12000 deaths per year on average, the confidence interval of the annual number of deaths in France has an amplitude of about 500 deaths, i.e. the annual number of deaths naturally fluctuates by much more than 250; or, if you prefer, an increase of 250 deaths will not appear to be statistically significant). "

To be continued..…

References

[1] https://cancer-rose.fr/my-pebs/methodologie/ - choose article: "l'étude dont on rêvait"

[2] https://cancer-rose.fr/2020/10/06/langoisse-des-thuriferaires-du-rose-face-a-la-decroissance-de-participation/

[3] https://cancer-rose.fr/en/2021/01/18/covid-19-pandemic-and-cancer-management/

[4] https://bmjopen.bmj.com/content/9/10/e032773

[5] https://cancer-rose.fr/en/2021/02/11/parallel-to-breast-screening-prostate-screening-overdiagnosis-as-well/

[6] https://cancer-rose.fr/en/2021/02/01/overdiagnosis-of-thyroid-cancer-another-womans-concern/

[7] https://www.youtube.com/watch?v=068KMIe-gys&feature=emb_logo
Dr. Adewole Adamson's observation is frightening: no reduction in mortality and massive overdiagnosis due to the fact that the tolerance thresholds of dermatologists and anatomo-pathologists are lowered in front of skin lesions.

Dermatologists are increasingly and rapidly asking for biopsies, while anatomical pathologists prefer to upgrade their diagnosis of lesions examined under the microscope (i.e., when in doubt, classify as malignant lesions that are simply dubious and that could only be monitored), giving rise to an apparent melanoma epidemic with even more artificial "survivors".The vicious circle is endless, prompting patients and doctors to do more and more routine skin examinations.

[8] https://cancer-rose.fr/en/2021/01/06/miller-study/

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

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.

Being a woman and smoking: radiation in perspective

Lung cancer screening by low-dose CT scan, or the history of a pre-announced disappointment.

In February 2020, a medical imaging  journal[1] triumphed in publishing the results of a clinical trial on lung cancer screening by low-dose chest CT, which was then widely reported in press, promoting this high technology as a systematic screening method in smoking population.

This is a scanning technique using low doses, similar to those delivered by a simple chest X-ray (in two incidences, face and profile, equivalent to 20-40 µSv, instead of 5.8 mSv for a standard chest CT), giving a slightly more degraded image, not very efficient for the analysis of interstitial pneumopathies, but sufficient for a diagnosis of small nodules.

The article in this review concluded as follows: "This study therefore seems to be in favor of organized lung cancer screening, at a time when the procedures have reached very low irradiation levels".

But what is it actually about?

Essentially two trials (there have been several studies) are supposed to provide evidence of a significant decrease in specific mortality from bronchopulmonary cancer. These are the US National Lung Screening Trial (NLST), and the NELSON trial conducted in Belgium and the Netherlands.

Already in 2014, in a guidance brief, the HAS [2] noted: ".... it is likely that the low specificity of low-dose CT screening will remain a major obstacle to the implementation of screening in clinical practice and of a screening program".
"Disadvantages and risks associated with low-dose CT screening include radiation exposures ranging from 0.61 to 1.5 mSv, a certain degree of over-diagnosis that varies between studies, and a high rate of false positive tests, usually explored with more imaging".

When we examine the study published in the NEJM [3] on the NELSON trial, the last line of Table 4 reads as follows: All-cause mortality - deaths per 1000 person-yr 13.93 (screening group) 13.76 (control group) RR 1.01 (0.92-1.11).
This clearly means that there is no impact on all-cause mortality, and this is the only data that should be of interest to the public and the media when reporting the results of such a study.

Remember that the "overall mortality" data includes everything, cancer, its treatment and its non-treatment, and reflects more adequately the "real life" data.
This information is rarely put forward, as the promoters of screening preferentially report the gain in terms of specific mortality, i.e. by the disease alone [4].

But the Academy of Medicine has retained it, and in a published report it expresses its concerns [5] [6]. The Academy notes several problems that prevent this screening from being generalized:

    - The two main trials on lung cancer screening with low-dose CT scans greatly underestimated potential harmful effects (false positives, over-diagnosis, false negatives, irradiation and over-treatment). The magnitude of  benefit and risks are unknown, and even if a 25% cure rate is achieved among subjects included in the study, the majority of patients will die early from other smoking pathologies (other cancers, heart disease, emphysema etc...) without increasing their life expectancy.

- For a screening to be effective, it is necessary to have cancers with a sufficiently long latency to be caught during a screening test (therefore as few interval cancers as possible); yet the proportion of cancers with a long latency in the lung is low.

-"These cancers are mainly due to active smoking and, marginally, to passive smoking: more than 85% of cases can be attributed to tobacco. The progressive decrease in smoking among men (from 60% of smokers in the 1960s to 33% currently) is reflected in the decrease in incidence and mortality due to these cancers", which is equivalent to saying that this cancer is simply accessible to effective primary prevention campaigns and incentives to stop the main risk factor, tobacco.

"The natural and evolutionary history of the disease must be known and the various forms defined"." Between ages of 50 and 74, lung cancers are therefore mainly composed of adenocarcinomas, which seem to be the most easily detectable. For example, in the European NELSON trial, 61% of cancers in the screened group are adenocarcinomas compared to 44% in the control group, which could explain a better effect of screening in women," explains the Academy.

    - Unknowns: on target population, on appropriate participation rate, frequency of scans, therapeutic indications for cancers discovered during the scan, acceptability by patients, motivation and compliance with smoking cessation, etc...

    - People who participate in the trials are not representative of entire population eligible for screening at a later date, which may lead to an overestimation of efficacy in the Nelson study.

    - Economic evaluation is also necessary, with the Academy correctly pointing out that primary prevention is certainly more effective and less costly.

To rebound on the arguments of the Academy of Medicine, it is necessary to bear in mind economic stakes of this screening, not only of the initial examination but also the high cost of iterative examinations in case of intermediate nodules (which must be followed over years to monitor their evolution). Bronchial cancer screening by CT would be 4 times more expensive than breast cancer screening and 10 times more expensive than colorectal cancer screening.

Specifically concerning women

The results on the effectiveness of low-dose CT screening at 10 years are more variable and difficult to interpret in women. The Academy also has reservations, particularly in the NELSON trial, pointing out that they are not significant because of the small number of women included in the two trials and followed up in 10 years.

For our part, we emphasize that this screening, if it is launched in the female smoking population, will be superimposed on the biennial mammography, again in total ignorance of the effect of cumulative doses of iterative examinations [7] [8] for an unproven reduction in mortality [9].

Irradiation draws attention again

Once again, and just as for breast cancer screening, let's keep in mind that we are inflicting radiation, even in low doses, on people who have no complaints, who are a priori healthy, and this radiation will be repeated.

For suspicious (5 to 10 mm) and undetermined nodules, a check-up will be carried out at 3 months. Nodules that increase in volume (+ 25% in volume in 3 months) and nodules larger than 10 mm must be investigated immediately (biopsy or surgery). Stable nodules will be controlled for 3 years.

Some semi-solid nodules may be slow-growing and will be followed for a longer period of time, for 5 years.

All this for a zero gain in terms of overall mortality.

Ionizing radiation induces two types of effects: "deterministic effect", i.e. conditioned directly and with certainty according to the dose of radiation received, for example if a certain threshold is exceeded as in the case of a nuclear catastrophe or during radiotherapy treatments.

The other effect is "random" (appearance of cancers with a certain probability for an individual but without certainty, without a known threshold, depending on individual radiosensitivity).

For diagnostic radiology, the doses used are certainly much lower compared to radiotherapy, but the exposure, especially repetitive, could be harmful in a "probabilistic" way, by an accumulation of alterations of cellular DNA and individual sensitivity. Since most estimates are based on extrapolations of risks observed from nuclear and atomic accidents, long-term effects of even minimal and repeated doses are certainly very variable depending on the individual, and definitely still unknown at the present.

On this subject, read the work of N. Foray, radiobiologist, INSERM.

https://www.sfmn.org/drive/CONGRES/JFMN/2016%20GRENOBLE/SCIENTIFIQUE/CommunicationsOrales/N._FORAY_MembreWeb.pdf

et https://its.aviesan.fr/getlibrarypublicfile.php/cd704e89988a4e3bcf2e1217566876cf/inserm/_/collection_library/201800012/0001/J1-098ITS-2017.foray.lyon.ITMO.TS..21.nov.2017.pdf.pdf

To conclude

For academics, the most important thing is the fight against the main risk factor: smoking, and acceptance of its reduction is the very condition for candidates selected for eventual regular screening.

Chest CT scans could then serve as a motivation for smoking patients to make a decision to quit.

It will then no longer be a matter of systematic screening of an entire population, but rather of using imaging as part of a smoker's health check-up, and as part of the singular colloquium within the medical consultation.

Finally, in the context of recognized occupational exposures, low-dose chest CT scans could be a method of monitoring exposed subjects.

Reactions

They were not long in coming, an APM dispatch of February 24, 2021 informs us that three learned societies are taking a stand.

"The three learned societies are the Francophone Thoracic Cancer Intergroup, the French Lung Society and the Thoracic Imaging Society.

In this text, which updates previous recommendations, the learned societies reaffirm their position in favor of individual screening by low-dose thoracic CT scan without injection of contrast agent, for which they specify the modalities." ......
" Contrary to the Academy of Medicine, which proposes a low-dose scanner once, during a smoker's health check-up, learned societies envisage a recurrent examination. They believe that there should be 2 CT scans one year apart and then one every 2 years, except in the case of risk factors or a previous exam with an intermediate result or it should continue every year.
And this screening should be continued "for a minimum period of at least 5.5 to 10 years".

Again, we note the regrettable and not very scientific reaction of the president of the National Federation of Radiological Doctors:

His text :

"Incompetence or senility? The National Academy of Medicine has rendered a verdict against the use of low-dose CT scanners for the detection of bronchopulmonary cancer. The scanner would contribute to the health assessment of smokers and help them quit smoking."

References

[1] http://www.thema-radiologie.fr/actualites/2592/l-etude-nelson-promeut-le-depistage-du-cancer-du-poumon-par-scanner.html

[2] https://www.has-sante.fr/upload/docs/application/pdf/2014-12/note_de_cadrage_cancer_du_poumon.pdf

[3] https://www.nejm.org/doi/full/10.1056/NEJMoa1911793

[4] This "gain" is often expressed as a relative reduction in the risk of dying, i.e. by comparing a screened group with an unscreened group.

In the case of breast cancer, the manipulation is to express this gain repeatedly, in particular in the media, in percentages. Thus you are told that breast cancer screening reduces mortality by 20%, everyone understands that 20 people out of every 100 screened die of this cancer, but this is not the case, in absolute figures there is only one life saved. Out of a group of 2000 women screened in 10 years, there is one death from breast cancer, out of a group of 2000 women not screened in 10 years, there are 5 deaths, the reduction from 5 to 4 is indeed a reduction of 20%, but in real life, it is only one person.…

[5] https://www.academie-medecine.fr/le-depistage-du-cancer-du-poumon-par-scanner-thoracique-faible-dose-stfd-reste-non-justifie-mais-peut-etre-utile-pour-un-bilan-de-sante-des-fumeurs/

[6] https://cancer-rose.fr/wp-content/uploads/2021/02/RAPPORT-Académie-de-médecine.pdf

[7] http://agora.qc.ca/documents/radiation_des_depistages_aux_accidents_nucleaires

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

[9]https://cancer-rose.fr/2019/10/20/le-depistage-de-masse-du-cancer-du-sein-bafoue-les-valeurs-ethiques-et-les-principes-fondamentaux-du-systeme-de-radioprotection/

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.

Getting paid to be screened?

Cécile Bour, MD, February 13, 2021

That is the question asked in the JIM[1] of February 13 by a citizen, Mrs. Mirela Colleoni, a participant in the INCA[2] citizen consultation organized to " put an end to cancers".

Mrs. Mirela Colleoni gives her opinion on an item proposed by the INCa which seemed to her to be particularly unethical.

Mrs. Colleoni is an agri-food engineer with a PhD in Life and Health Sciences. 
She speaks jointly with two other scientists, Dr. Theodore Bartholomew, a physician at the Royal Surrey County Public Hospital in Great Britain and holder of a Master's degree in Bioethics, and Dr. Harald Schmidt, Assistant Professor at the Department of Medical Ethics and Health Policy and Research Associate at the Center for Health Incentives and Behavioral Economics, at the University of Pennsylvania, in the United States.

We have already expressed our concern about this citizen consultation supposed to support the next ten-year cancer plan, through two articles [3] [4] published at the time of its launch where we denounced the collusion with pharmaceutical industry and very low citizen participation despite the dithyrambic presentation of the INCa communicators.

Not only citizens have been able to vote just for fallaciously formulated items (see our articles), without prior information on the ins and outs of certain proposed measures, but the participation rate is in no way representative of the French population (2478 effective participants for 3. 8 million people affected by cancer in France, and 47 million French citizens registered on the electoral rolls...), thus denying the "adequacy" that would exist between "the objectives and measures presented and the expectations of our fellow citizens" proclaimed by the INCa communicators.

And we were already astonished by this item[5] in particular, which also retained attention of the three authors in the JIM :

Experimenting with material incentives to facilitate people's participation in screening :

Incentive mechanisms such as financial motivation or payment of expenses (transportation, childcare, work), which have been very little used to date, will be experimented with in order to evaluate their contribution to the development of participation in the program.

Adherence to screening programs or procedures also requires the mobilization of professionals, whether in the carrying out of the act or in the informing and raising awareness on screening, otherwise by incentivizing.

This is not without recalling similar measures already in place in the United States, where many private health insurance companies incentivize women to perform screening mammograms by offering compensation in various forms.

What do the authors denounce in the article?

This French citizen and the two co-authors denounce together the cynicism of this financial incentive measure proposed by the INCa, which ignores the demands of the true citizen consultation [6] dedicated to breast cancer screening and organized in 2016, that called, in addition to the cessation of this screening, for better information given to women on the benefit-risk balance of this breast cancer screening ("Taking into consideration the controversy in the information provided to women and in the information and training of professionals").


This is the point made by the three authors, who recall that the issue at stake is to inform women about the risk-benefit balance of screening, in particular the risks of overdiagnosis, in order to enable them to make a better choice, one that is optimal for each of them: "The risk of these incentives is that the decision-making process is short-circuited, that women make decisions they will regret and that they would not have made in the absence of incentives".

The authors point out the unethical nature of this item: "... the choice of screening should be made by properly informed women and not by their physicians, nor by health insurers, public health policy makers or other actors. This initiative should not be promoted, but rather ensuring that women have access to truly useful information on the advantages and disadvantages of screening. Rather, we advocate encouraging active and informed choice by encouraging women to use evidence-based decision support tools".

At the beginning of the article, the authors recall the Cochrane Collaboration review[7] and the risk of overdiagnosis inherent in this screening, which should be known by each woman before engaging in screening. And they ask a very logical question:  "Instead of trying at all costs to strengthen screening as foreseen in the new ten-year cancer plan, why not mobilise more resources for equal access for all women to informative materials and documents on the risk-benefit balance of this screening, to enable them to make a conscious decision on whether or not to participate in mammography screening"?

 Citizen's demands heard? Is informing the population a concern of the new plan?

No, not at all.

The proposed measure on financial incentives for women to increase their participation is further proof that the National Cancer Institute is doing just what it wants to do, promoting the pursuit of its obsolete objectives, formulating the items in such a way that citizens can only approve due to lack of explanation, and burying the demands of the citizens of 2016 in anti-democratic brutality.

We also noticed that in the small group of 24 people who concocted these items of the consultation, we find the representative of the drug companies (LEEM) Mr. Eric Baseilhac, director of economic affairs.

The sad consequence of all this is formulated in the new European cancer plan, published shortly after this "citizens' consultation" supposedly based on citizens' opinions but in advance elaborated a long time ago, and which proclaims the intensification of screening:

https://ec.europa.eu/commission/presscorner/detail/en/ip_21_342

« ...ensuring that 90% of the EU population who qualify for breast, cervical and colorectal cancer screenings are offered screening by 2025. To support achieving this, a new EU-supported Cancer Screening Scheme will be put forward ».

The pharmaceutical and medical imaging industry can rub their hands :

« In addition, to support new technologies, research and innovation, a new Knowledge Centre on Cancer will be launched to help coordinate scientific and technical cancer-related initiatives at EU level. A European Cancer Imaging Initiative will be set up to support the development of new computer-aided tools to improve personalised medicine and innovative solutions »

Everything continues as planned, all is going well in the best of all worlds.

Références

[1] https://www.jim.fr/medecin/debats/e-docs/des_incitations_financieres_pour_le_depistage_du_cancer_du_sein_sont_contraires_a_l_ethique_186433/document_edito.phtml?reagir=1#formulaire-reaction

[2] https://consultation-cancer.fr/

[3] https://cancer-rose.fr/2020/12/15/inca-une-consultation-citoyenne-pourquoi/

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

[5] https://consultation-cancer.fr/consultations/axe-1-ameliorer-la-prevention/consultation/consultation/opinions/12-ameliorer-lacces-aux-depistages/mesures-proposees/experimenter-des-incitatifs-materiels-pour-faciliter-la-participation-des-personnes-au-depistage

[6] https://cancer-rose.fr/en/2020/12/14/final-report-of-the-citizen-consultation-report-of-the-steering-committee/

[7] https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001877.pub5/full

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.