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".
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.
[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/
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.
In the Journal of The National Institute Volume 113, Number 1, January 2021, is published an article of 2020 on an important meta-analysis. It discusses the contribution of digital mammography in breast cancer screening, a publication that we had relayed here: https://cancer-rose.fr/2020/06/28/la-mammographie-numerique-pas-plus-efficace-dans-la-reduction-des-cancers-les-plus-graves-selon-meta-analyse-australienne/
Digital mammography, approved in 2000 by the American FDA, is also widely used in France.
Studies suggested that the new technology is equivalent to the old analog film technology for cancer detection.
A short technical description
Analog mammography produces an image printed directly on silver film.
Digital sensor radiography (CR), which has now completely replaced the analog one, is an indirect mammography technique that captures the image on a reusable plate. This receptor of image contains a photostimulated luminophore, the X-rays cause an excitation of luminescent molecules which convert the X-rays to light. An analog-to-digital converter then produces a digital image that can be archived.
Direct Digital Radiography (DR) does not use reusable plates. Sensors convert the X-ray stream directly into an electrical signal which is then digitized and transferred to the screen. The image is visible and can be analyzed on the screen directly by the radiologist. The image can then be enhanced if it is over or underexposed for a better visualization. In this case too, the images can be stored as digital files in a computerized archiving system.
The article
In the article published in the National Institute's journal, authors Otis W Brawley (oncologist and epidemiologist in Baltimore, USA) and Channing J Paller (oncologist and urologist in Baltimore, USA) first recall the results of this important meta-analysis.
Digital mammography is certainly justified by easier storage and handling of images. There is also a possibility of computer-assisted diagnosis and better performance for the exploration of dense breasts. Digital mammography also has a lower radiation exposure than film mammography, provided that the number of images is not increased unreasonably... More on this later.
For effective screening, the authors point out, three objectives must be met: more localized tumors found at the same time as a decrease in interval cancers (tumors diagnosed between two screenings), and a decrease in the incidence of advanced cancers.
Regrettably, the Australian meta-analysis by Faber et al. (Sydney School of Public Health, Australia) confirms the problem of increased overdiagnosis with this method, which allows more detection of small lesions, particularly carcinomas in situ, the vast majority of which do not affect the life of the woman diagnosed, but there is no difference in the detection rate of invasive cancers.
The study suggests that 11% of cancers detected by digital mammography are overdiagnosed. However, other analyses cited in the article are much more pessimistic about the rate of overdiagnosis attributable to the digital system [1].
The digital technique also has no effect on interval cancers, which are not reduced.
In the United States, the age-adjusted incidence rate (new diagnoses) of breast cancer increased by more than 30% from 1975 to 2000, while the incidence of advanced breast cancer at the time of diagnosis was stable for the 25 years, instead of decreasing as expected.[2]
Most importantly, the recall rate is significantly increased with digital technology because of the increase in false positives, which means that the claim of less radiation with digital technology is questionable, since these women recalled because of false suspicion of cancer will undergo, among other examinations, new X-rays.
Highlights from the article
Two interesting points are made by Brawley and Channing in relation to the results that can be extracted from the Australian meta-analysis:
1. The true measure of the value of effective screening at the population level is a reduction in cancer mortality and unnecessary treatment.
Screening should not justify its apparent success on the discovery of more and more cancers, many of which are unnecessary detections, but rather on the detection of more cancers that are important to find because they are clinically dangerous to the women who develop them. But digital mammography is not more discriminating for these forms and overdetects a large number of cancers that would not have caused any consequence.
2. It is human nature to think that the new technology is always the best, and many experts felt that digital mammography would lead to better health outcomes.
Sometimes we have to face the fact that the truth is different from what experts have put forward. These results demonstrate, according to the authors, the importance of post-marketing evaluation and open-mindedness.
These results also show the biological variations of breast cancer, and confirm a non-linear natural history of the pathology: some cancers are useless to find because they regress or do not progress, others are immediately aggressive and develop between two screening mammograms without any possibility of stopping their occurrence.
Our commentary
We invite our readers to read the work of Bernard Junod and Dr Bernard Duperray on overdiagnosis. The natural history of cancer is of paramount importance, without this knowledge we will never be able to understand the problem of overdiagnosis and interval cancers.
[2]Welch HG, Gorski DH, Albertsen PC. Trends in metastatic breast and prostate cancer–lessons in cancer dynamics. N Engl J Med. 2015;373(18):1685–1687.
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.
This "researchers' letter" is from Australian scientists including Prof. A. Barratt, Professor of Public Health at the University of Sydney and Dr. Ray Moynihan, Australian researcher at Bond University and health journalist, focuses on the media coverage of screening tests. It was published in JAMA on April 5, 2021. The authors of the publication study the way in which the balance of benefits and harms of 5 tests are treated in the media.
Media is key to promoting testing of asymptomatic individuals in the population, and might play an important role in encouraging realistic reporting of the benefits and harms of screening, including unnecessary diagnoses.
But data suggest that medical media coverage tends to exaggerate benefits, minimize harms, and ignore conflicts of interest.
Methods
The authors studied all English-language narratives from 2016 to 2019 in LexisNexis (a publishing and professional information company), ProQuest (a global company providing tools for content search and management from dissertations, theses, books, newspapers, periodicals, etc.) and Google News.
All types of non-fiction articles from newspapers, blogs, magazines, and broadcast transcripts were included as long as they mentioned or implied benefit or harm from medical testing, with or without disclosure of conflicts of interest of the narrators involved.
The stories were reviewed for health benefits (early treatment, saving lives) and harms (false positives, overdiagnosis), and reflected views expressed by the commentators according to their agreement or disagreement.
Five early detection tests were targeted by this review: liquid biopsies, tomosynthesis also known as three-dimensional mammography (discussed on this site [1] [2]), electrocardiogram recording using the Apple Watch Series4 app, blood biomarkers for dementia, and artificial intelligence technology in dementia.
Results
Overall, media coverage focuses much more on the benefits of early detection testing than on the harms, and the risk of overdiagnosis was poorly covered.
Overall, 97% of the narratives reported benefits, 37% reported harms, and only 34% reported both benefits and harms.
63% of stories reported only benefits, while only 3% reported only harms.
Overdiagnosis was mentioned in only 57 of the 432 stories, making only 13% of all content that mentioned harms, or 5% of stories in the entire set.
In total
This study confirms the results of other similar studies on the subject of health media coverage[3] [4] [5].
The authors suggest that improved media communication would encourage a healthier skepticism about the health options available to populations, and reduce the problem of overdiagnosis (or overdetection).
They argue that strategies are urgently needed to improve media coverage so that professionals, patients and the public receive more balanced information about early detection tests.
Comments
In the past, we have repeatedly expressed our alarm at the biased reporting of scientific facts in the media.
In the case of screening mammography, easy slogans are used, facilitated by the impossibility for women to make an informed decision since they are fallaciously informed, as shown in a previous study[6].
A commentary published following the Australian study in JAMA was of particular interest to us[7]. It is that of Dr. Diamandis[8], head biochemist of the University Health Network and 'Toronto Medical Laboratories' and also division head of clinical biochemistry in the department of pathobiology at the University of Toronto in Ontario, Canada.
Indeed, we can remember the unbridled media hype and enthusiasm, as early as 2015, about "liquid biopsies"[9]. The "woman who would beat cancer", "the heroine of modern times" was presented on many television platforms and several more or less glamorous media. She was Mrs. Patrizia Paterlini-Bréchot, a scientist who worked on the development of liquid biopsies. [10][11] [12] [13] [14] [15] [16] [17]
But studies and publications that are less media-friendly[18] [19] dampen this enthusiasm about the possibility of using liquid biopsies more widely as routine population-based screening. Indeed, in addition to its high cost and complexity, these tests on circulating tumor DNA seem to suffer from the same problems of low sensitivity and specificity as traditional biomarkers if we try to use them for screening in an asymptomatic and a priori healthy population. This means that we are heading for over-diagnosis, large numbers of false positives, with panic in the population and cascades of additional examinations for those who test positive (for a better understanding of these notions, see here: https://cancer-rose.fr/2016/11/13/cancer-du-sein-un-peu-de-technique/).
In his commentary to the Australian team's study, Dr. Diamandis writes:
"More recently, as the authors pointed out, we have seen a strong push by academic researchers and companies for DNA tests of circulating tumors for early cancer detection. However, our calculations showed that this test will only be able to detect large symptomatic tumors. We further stressed the need for newspapers to provide a space for healthy debate on such controversial issues. Since: biased reporting favoring the good news, but not the bad news..."
[3] MoynihanR,BeroL,Ross-DegnanD,etal.Coveragebythenewsmediaof the benefits and risks of medications. N Engl J Med. 2000;342(22):1645-1650.
[4] MoynihanRN,ClarkJ,AlbarqouniL.Mediacoverageofthebenefitsand harms of the 2017 expanded definition of high blood pressure. JAMA Intern Med. 2019;179(2):272-273.
[5] Walsh-ChildersK,BraddockJ,RabazaC,SchwitzerG.Onestepforward,one step back: changes in news coverage of medical interventions. Health Commun. 2018;33(2):174-187.
[9]Liquid biopsy consists, schematically, in taking a blood sample to detect as early as possible material released into the blood by cancerous tumors. Three tools can be used: detection of circulating tumor DNA, circulating tumor RNA, circulating tumor cells.
For the moment, this is considered to be an interesting avenue for research. But a person who does not have cancer and is simply concerned about his or her health cannot, today, benefit from this type of blood test.
[18] Fiala C, Diamandis EP. Utility of circulating tumor DNA in cancer diagnostics with emphasis on early detection. BMC Med. 2018 Oct 2;16(1):166. doi: 10.1186/s12916-018-1157-9. PMID: 30285732; PMCID: PMC6167864.
"The use of CTCs or tcDNA as tools for early detection of primary tumor or recurrence remains a very active area of clinical research, but is not, in the absence of clinical evidence, routinely applicable."
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.
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 participation, (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.
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 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.
"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,
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%. "
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 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."
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 recognized 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].
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 offered to 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
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).
We have selected for presentation in our article only the examples concerning breast cancer screening, by mammography.
We found that these examples account for about 60% of the total number of examples for all cancers combined: prostate, breast, cervical and colorectal. We can conclude that there is a preferential communication, a hype around breast cancer screening, compared to other cancers.
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
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.
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/
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Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.
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.
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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)
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...
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Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.
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.
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.
Cancer Rose launches a new media library for general public and professionals who want to learn more about breast cancer and its screening, as well as about our activities on information and education. You will find it integrated in the menu, among the other categories of the website Cancer Rose.
The new design of our bilingual media library provides improved navigation to help our visitors find information easily. Visitors can conveniently browse content, read and download all open-access documents, and view videos.
For professionals, the media library offers the courses of Dr. Bernard Duperray, lecturer at the Faculty of Medicine Paris Descartes, within the inter-university diploma of breast pathology, as well as a library of clinical cases.
In addition, the media library provides access to Cancer Rose press releases and articles, as well as to presentations given at various events and conferences in France and abroad, since the Association was founded.
Links to Cancer Rose's social networks and the possibility of sharing any content you wish on your favourite social network are present at all times when you browse the media library.
Cancer Rose is a Non-Profit Organization under French law made up of independent Medical Doctors, a Doctor in Toxicology and a patient representative, with the goal of providing fair, transparent and objective information for women on mass screening for breast cancer, based on scientific evidence.Members of Cancer Rose have no sponsorships, honoraria, monetary support or conflict of interest from any commercial sources. They dedicate their time to this activity on a voluntary basis. The funds necessary for the functioning of this website and production of information materials (educational videos, brochures, posters) are generated by individual donations and members contributions.
Cancer Rose est un collectif de professionnels de la santé, rassemblés en association. Cancer Rose fonctionne sans publicité, sans conflit d’intérêt, sans subvention. Merci de soutenir notre action sur HelloAsso.
Cancer Rose is a French non-profit organization of health care professionals. Cancer Rose performs its activity without advertising, conflict of interest, subsidies. Thank you to support our activity on HelloAsso.
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.
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/
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.
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.
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.
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.
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.
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.
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. »
[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.
"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.
[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
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.
[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.
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