Myths in medicine, but does their rebuttal make it possible to install the facts in a lasting way?

Cécile Bour, MD, May 24, 2020

During the Covid-19 pandemic that we have just experienced, science based on facts has been severely mistreated... General panic, mediocrity of the media combined with incredible assurance of a single researcher sounded the death knell of the serene search for facts, proclaimed as miraculous a treatment without having the proof, stepped on the principle of primum non nocere, (first do no harm), which is the foundation of our medical practice.

Independently of fundamental questions, which is not our subject, we can see that the urgency of a health situation facilitates drifts, sloppy studies, but also statements made by personalities who are not aware of scientific constraints, but who want to impose their convictions.

The interesting question is: does even strong evidence that can bury doubts and polemics have the power to put an end to myths and beliefs that are deeply rooted in medicine?

And above all, will they be tolerated in a context of serious illnesses, where public is asking for hope and where  scientific community and public authorities prefer to persist in a benevolent ideology, however fallacious?

Parallel of the epidemic situation with the myths conveyed during screening campaigns

Being a group focused on issues of public medical information and interference of non-medical stakeholders in scientific controversies, as we regularly experience during pro-cancer screening campaigns, we can draw parallels with history of breast cancer screening, where economic stakes and beliefs have prevailed over reasoning.

The public does not like uncertainty, and the tremendous desire to overcome major health threats enables the appearance and immoderate expression of promises of salvation and healing.

How was it possible to impose the mantra that screening is a preventive act, and that regular mammograms can drastically reduce the risk of dying from this disease?

To understand, a bit of history

At the very beginning of the history of screening, between the 1970s and 1980s and in various cities, counties and countries (Norway, Denmark, Canada, New York, Swedish counties, Malmö in Sweden,) women were included in so-called trials, meaning studies that consisted of simply comparing the outcome of screened women against that of unscreened women.

At that time this could be done, as women had never received an X-ray of their breasts before; they were what can be called "pure cohorts". And these early comparative studies claimed a tremendous decrease in mortality through screening, up to 30% reduction in the risk of dying from breast cancer.

 Presented in this way, this performance seemed very pleasing. In view of these results, it seemed intuitively obvious that breast cancer screening would allow earlier diagnosis, earlier treatment and thus a drastic reduction in mortality by eradicating the most serious forms.

But science is sometimes a colossus with feet of clay, and while some erected convenient convictions, other researchers, more scrupulous and suspicious, drove the stings of doubt into this base of certainties.

Indeed, it became quickly clear, (this is no longer contested by the scientific community), that these first trials had many biases, such as irregularities in method, in distribution of women between the two groups and in statistical analyses. The methodology of trials did not meet current quality criteria. For example, some of women "screened" by mammography had tumors that were already clinically palpable! Even the published results of the so-called trial in the two Swedish counties were incompatible with the data in the Swedish national file. The best results had been obtained with the less good mammograms, none of the equipment used then would be approved for use today.

While victorious publications multiply between 1992 and 2000, along with an important media and social relay on women, physicians and governments, Gotsche and Olsen, two independent Nordic researchers, proceed, in 2000-2001, to a meta-analysis according to the methodology of the independent Cochrane collective to which they belong.

And then it's a shock.

(Meta-analysis is a scientific method of combining the results of a series of studies on a given problem according to a reproducible protocol, here: does screening reduce mortality from disease. It allows a more precise analysis of the data by increasing the number of cases studied in order to draw a general conclusion. By grouping together the previous trials carried out, data on 800,000 women were obtained).

Gotsche and Olsen quickly realized that none of conducted trials were of high quality and that they all had biases, sometimes significant. By combining the best trials (the so-called Malmö 1, and the Canada 1 and 2 trials), it appears that there is no statistically significant difference in mortality between screened and unscreened women. Obviously, this is a colossal turnaround while enthusiasm for this public health procedure, which was supposed to solve the cancer problem once and for all, was in full swing.

Unfortunately for the researchers, they did not get authorization to publish their results in Cochrane reviews, and the powerful Cochrane "breast cancer group" forced them to include even biased trials in order to improve the results; after long negotiations, and with inclusion of the poorest trials, the authors still found only a very meagre and hypothetical benefit. They added at the end of their publication that the best trials show no decrease in mortality, and that the indicator "mortality from breast cancer" is unreliable.

About these negotiations that took place, read here : Trouble in the world of evidence

But in the end, the press preferred to retain the beautiful story of a life-saving screening, as did savant societies, women largely influenced by a glowing press, doctors, health authorities....[1]

However, other meta-analyses, the American USPTTF* in 2000 and the French independent review Prescrire in 2006 corroborate these equally disappointing results, even with different age groups studied, different observation periods and different cohorts.

* U.S. Prevention Services Working Group of primary care and prevention experts who review evidence of effectiveness to develop recommendations in the area of prevention.

The conflicts of interest that have plagued the whole history of breast cancer screening are very well documented on the Formindep website [2] [3], and are reported in the very complete report of the citizens' consultation (starting on page 63).

Conclusion

Science applies a method of doubt to beliefs and superstitions, and to itself as well, in well-done studies.

Uncertainty in the face of health dangers encourages beliefs and reassuring hopes, all the more so as this uncertainty is strong, not only on the magnitude of the threat itself, but also on the means of countering it.

The first bearer of good news becomes a hero, a savior. Any reasonable protester who applies his method of doubt becomes a public enemy.

With the history of screening we see how myths and intuitive ideas, simple to understand but false, once established, have a long way to go.

For three decades now, the myth of "preventive" screening, "life-saving for women", has been firmly anchored in people's minds, regularly promoted by the public authorities, the National Cancer Institute and the health authorities, valorized by public personalities who are committed to its promotion. Evidence of its ineffectiveness and, worse, of its deleterious effects, is little mediatized, has no right to be quoted; those who want to evoke it and warn women are called conspirators, incompetents, evildoers for the cause of women and are inaudible during the pink October campaigns.

Current Covid-19 crisis has revealed the fragility of science in relation to belief, and has highlighted all the possible excesses once we move away from the search for facts, act in haste, and adhere to convictions justified solely by their comforting character.

References

1] All of this is documented in the report of the citizen and scientific consultation on screening in 2016, starting on page 51, see also https://cancer-rose.fr/wp-content/uploads/2019/07/depistage-cancer-sein-rapport-concertation-sept-2016.pdf.

As well as in Bernard Duperray book "Dépistage du cancer du sein, la grande illusion" published by Th Souccar, starting on page 26.

2] https://formindep.fr/les-cinquiemes-rencontres-du-formindep/

3] https://formindep.fr/?s=Tabar%2C+Lancet

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.

Blatant disregard for informed consent in screening

Summary by Cécile Bour, MD

September 18, 2020

BMJ: first published as 10.1136/bmj.m3592 on 17 September 2020.
Quote this as: BMJ 2020;370:m3592
Published: 17 September 2020
https://www.bmj.com/content/370/bmj.m3592

Hazel Thornton is a health science researcher at the University of Leicester.

She received her PhD in Science from the University of Leicester for her contributions to medicine and patient care. The award recognizes her work in advocating for patients and changing perceptions within the medical research and health care community.

The BMJ publishes her letter on the subject of patients' informed consent, which is often flouted, even though this is a right and a major ethical issue.

Hazel Thornton refers to a publication by Helen Haskell [1] [2], founder of Mothers Against Medical Errors, which reports the severe criticisms of the "Cumberlege Report" [3] on the British health care system, judged "disjointed, siloed, unresponsive, and defensive”.

The report points to the failure regarding the informed consent of healthy patients, whose non respect is a violation of human rights according to the Declaration of Helsinki [4].

What is of great concern is “the testimony from hundreds of patients reporting lack of informed consent.”

While health care professionals are supposed to work “in partnership with patients to make good clinical decisions," which is at “the heart of good medical practice".

Informed consent and screening

Hazel Thornton writes in her letter to the BMJ:

Asymptomatic people, too, are the target of health professionals in preventive medicine. Medical interventions used in screening are not without potential for harm, so properly informed consent must be sought. Not to do so is an abuse of human rights. Flouting the four basic principles of medical ethics—autonomy, beneficence, non-maleficence, and justice—must not go unchallenged. Incredibly, in the 21st century, blatant disregard for the right to proper consent is still occurring. Two examples clearly illustrate this.

The first is an experiment to determine the effects of manipulating invitation information provided to around 6000 asymptomatic women in the province of Messina, Sicily, “to increase uptake” into their breast cancer screening programme.[5] The second is the UK NHS breast screening programme AgeX trial, which was started in June 2009 and announced as “likely to be the largest randomised controlled trial ever undertaken in the world,” recruiting millions of women. Efforts to challenge this trial, with its flawed consent process, have met with “siloed, unresponsive and defensive” attitudes.[6] [7]

H.Haskell says, "How to change it is still an unsolved problem. There have been inquiries, reports, and recommendations over the years, but the fundamental issues around power, justice, and compassion are still with us. " What can be done to end these blatant abuses of the right to properly informed consent and tackle the lack of engagement ? 

Cancer Rose Reflections

Indeed, we have to draw a parallel with the European MyPEBS clinical trial on personalized breast cancer screening.

We have already reported its multiple shortcomings, which we denounced in a joint letter from 4 groups defending independence and integrity in health, a letter relayed among others in the BMJ.

Participants in this MyPEBS study are provided with a so-called consent brochure. The problem is that it does not comply with the law, which requires that this consent be based on fair, clear, complete and unbiased information.

We have summarized our concerns about the brochure for the MyPEPS study here (see point 3 ): https://cancer-rose.fr/my-pebs/2019/06/13/argument-english/

Over-treatment is not mentioned, with over-diagnosis indicated at its lowest range.

In conclusion, we have the same questions as Hazel Thornton:

After the French scientific and citizen consultation, which demands fair and complete information [8], how many laws, declarations, reports and investigations should we hope for in order to obtain the fundamental right to information and informed consent for the patient, and a firm and solid commitment from health authorities and governments to guarantee this right to the patient?

Références

References

[1] https://pubmed.ncbi.nlm.nih.gov/32763955/

[2] https://patientsafetymovement.org/advocacy/patients-and-families/patient-advocates/helen-haskell/Founder of Mothers Against Medical Error

[3] Haskell H. Cumberlege review exposes stubborn and dangerous flaws in healthcare. BMJ 2020;370:m3099.
doi: 10.1136/bmj.m3099 pmid: 32763955

[4] World Medical Association. Declaration of Helsinki. https://www.wma.net/fr/policies-post/declaration-dhelsinki-de-lamm-principes-ethiques-applicables-a-la-recherche-medicale-impliquant-des-etres-humains/

5] Italian study on the manipulation of women, we talk about it here :https://cancer-rose.fr/en/2020/12/17/manipulation-of-information/

[6] Bewley S, Blennerhassett M, Payne M. Cost of extending the NHS breast screening age range in England. BMJ 2019;365:l1293.
doi: 10.1136/bmj.l1293 pmid: 30971394

[7]We were talking about this trial

here : https://cancer-rose.fr/en/2020/12/29/cost-of-extending-the-nhs-breast-screening-age-range-in-england/ and here: https://cancer-rose.fr/en/2020/11/30/the-largest-clinical-trial-in-great-britain-on-breast-cancer-screening-was-halted/

[8] https://cancer-rose.fr/en/2020/12/30/citizen-and-scientific-consultation-on-breast-cancer-screening-in-france-steering-committee-report/

See at the end of the article the summary of the citizens' requests in red, first point being related to the quality of information

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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.

Vegetarianism and cancer

By Cancer Rose

1 December 2020

The fact that eating habits have an influence on the risk of developing cancer, and that the incidence of cancer among vegetarians in particular is lower than among people having a meat diet, has already been the subject of scientific studies [1].

A more recent publication [2] than the above-mentioned one, analyzing 86 cross-sectional studies and 10 prospective cohort studies, reports a significant protective effect of a vegetarian diet on the incidence and mortality of ischemic heart disease (-25%), and on overall cancer incidence (-8%). The vegetarian diet was found to significantly reduce the overall risk (-15%) of developing cancer.

But a post by the physician essayist and novelist, Dr. Luc Perino, whose articles [3] we often relay, testifies to another aspect of the behavior of vegetarians and vegans that could have an effect on the reduced incidence of cancer among this group of people, namely the lower participation in screening.

Non-carcinogenic diet and participation in screening / opinion column by Luc Perino

We publish here, with the kind permission of Dr. Perino, the post that you can read, among many others, on the author's blog [4]:

There is no longer need to conduct studies in order to prove that lower meat consumption reduces the incidence of cardiovascular disease. The subject is no longer under debate since half a century. Decreased meat consumption and physical exercise have contributed to the new gains in life expectancy observed in recent decades. 

We also know that low-meat diets reduce the risk of colon cancer. In recent years, the large number of vegetarians has made it possible to carry out studies of greater statistical value on the effects of such diets on health. The question of cancers has obviously been addressed and it appears that in addition to colon cancer, the vegetarian diet also reduces cancers as unexpected like breast and prostate cancer. Generally speaking, all cancer risks are reduced to a greater or lesser extent.

Confounding factors such as tobacco have obviously been taken into account, and some studies went so far as to consider other confounding factors such as personality traits and other elements of a reasonable vegetarian lifestyle (excluding fanatical vegans). For example, vegetarian women take fewer hormone treatments during menopause and further reduce their risk of breast cancer.

The funny thing, if I dare to phrase it this way, is that vegetarians participate much less in organized cancer screening programs. Some will conclude that they are carriers of unknown cancers that will develop sooner or later. This hasty conclusion, somewhat tainted by pro-screening ideology, is contradicted by lower overall cancer mortality among vegetarians of all ages who are followed for a long time.

This is explained by the fact that many of the cancers detected are either false positives or cancers that would never have had a clinical manifestation before death from another cause.

Vegetarians therefore have fewer clinical cancers, fewer detected cancers and fewer virtual or sub-clinical cancers. The health benefit of this triple protection is even greater than that already observed in the reduction of mortality. Indeed, the anxiety associated with all screening and the biographical stigma associated with a cancer diagnosis aggravates morbidity and mortality. We know that all cancers, whether clinical, screened or virtual, have the same psychological and biographical repercussions.

We will not go so far as to encourage vegetarians in their diagnostic recklessness, as this could shock the academy. Nevertheless, we must congratulate them for their sanitary perspicacity and their serenity in the face of pathological destiny, without forgetting to praise their climatic altruism.

Study on participation in screening

In the bibliography of this post, cited by the author, we find a study published in the BMJ in 2017 on health behaviors according to population groups following specific diets [5].

31,260 participants were studied from four diet groups (18,155 meat eaters, 5,012 fish eaters, 7,179 vegetarians, 914 vegans) in the British EPIC-Oxford cohort [6]. 

Compared to meat eaters, vegetarian and vegan women reported lower participation in breast cancer screening, and vegetarian men were less likely to undergo PSA testing for prostate cancer. 

No difference was observed in women for cervical cancer screening. 

For women in all non-meat eating groups there was also a lower consumption of hormone replacement therapy for menopause compared to meat eaters. 

Less use was observed for any kind of medication in general among participants in all no-meat groups. 

Conclusion

Behavioral differences, rather in the sense of lower participation in breast cancer screening, prostate cancer screening, lower hormone replacement therapy and overall drug use were observed in the non-meat diet groups. Apparently these population groups are thus less exposed to the risk of developing cancers, less exposed to clinical cancers (revealed by symptoms), and to sub-clinical cancers (not symptomatic), whose over-detection unbridled by mass screening feeds over-diagnosis, and all this in a context of less anxiety, less morbidity and less premature mortality among vegetarians, observed even in the long term, probably in relation to a healthier general life behavior, and not only due to vegetarianism alone [7].

References

[1] https://academic.oup.com/ajcn/article/89/5/1620S/4596951?searchresult=1

[2] https://pubmed.ncbi.nlm.nih.gov/26853923/

[3] https://cancer-rose.fr/2017/07/04/les-billets-de-luc-perino/

[4] https://lucperino.com/715/vegetariens-et-cancers.html

[5] https://bmjopen.bmj.com/content/7/12/e018245

[6] The Oxford Component of the European Prospective Investigation into Cancer and Nutrition (EPIC) is a prospective cohort of 65,000 men and women living in the UK, many of whom are vegetarians.

[7] https://theconversation.com/les-vegetariens-vivent-ils-plus-longtemps-probablement-mais-pas-parce-quils-sont-vegetariens-72929

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Cancer diagnosis: the bone of death or symbolic effectiveness

Annette LEXA, PhD Toxicology (Eurotox)

Expert Regulatory Toxicologist-Environmental Health Risk Assessor

22 February 2016

In today's health care system, a cancer diagnosis can be the most traumatic announcement that a patient will ever experience. And for some people, the announcement will be even more deadly than the cancer itself or its treatment. This is what a cohort study published in 2012 in the New England Journal of Medicine has masterfully demonstrated. The follow-up of this historical cohort of 6 million Swedes between 1991 and 2006, examined the link between cancer diagnosis and the immediate risk of suicide or death from a cardiovascular accident. In the first week after the announcement, the relative risk of committing suicide was 12.6 and the relative risk of dying from a cardiac accident was 5.6 compared to the control group without a cancer diagnosis. This indisputable result is observed equally in men and women.

According to the authors, a negative attitude from the healthcare professional, his or her beliefs around a diagnosis, will cause a deep distress to the patient, especially for cancers with a poor prognosis, leading to death within a week of diagnosis.

The major public health campaigns, the health system and the health professionals themselves, who are part of this dreaded particular colloquium, should be better consider this syndrome in their decision-making process based on the benefit-risk analysis, this potentially fatal psycho-physiological stress induced by the diagnosis itself.

Marcel Mauss and the death bone 

This study, which followed the standards of Evidence Based Medicine, confirms what ethnologists such as Claude Levy-Strauss in 1946 or Marcel Mauss in 1926 had already studied in the 20th century. This fatal syndrome is better known as "bone-pointing syndrome". This ancestral practice has been described among the first peoples of Australia, New Zealand and Polynesia. It consists in condemning a person to die after pointing towards to him a few meters away, a thin bone (often a kangaroo or emu femur of about 45 cm). This ritual is still at use today in Australia where health professionals are trained to face these fearsome situations, where the strength of beliefs prevails to the point of making the victim die from panic fear that disrupts the instinct of conservation, life itself. It is not a death of starvation where the individual would have let himself die of hunger and thirst, no, it is a panic fear that leads to a very rapid death that is not a deliberate choice of the individual or a death due to pre-existing psychological disorders, which the researchers verified in the Swedish study.

Marcel Mauss (1872-1950) wrote the following in 1926: "The Australians consider to be natural only those deaths that we call violent . (...) All the other deaths have a magical or religious origin (...). Mr. Mac Alpine employed a young Kurnai in 1856-57. This young boy was very healthy. One day, he fell ill. He explained that he had done what he shouldn't have done. He had stolen a female opossum before having permission to eat it. The old men had found out about it. He knew that he would not grow any more. He went to bed, practically under the effect of this belief; he never stood up again and died within three weeks. 

(…) Two recent observers, one of whom is a doctor, tell how people die from the death bone among the Wonkanguru: they are very scared. If this bone is found, the bewitched one gets better; if not, he gets worse. European medicine does not inspire confidence. It can do nothing (...) "

Mauss quotes Sir Barry Tuke, a physician who attests to having known "a healthy individual with a Herculean constitution". He died of this "melancholy" in less than three days. Another, "in excellent appearance, and certainly without any lesions of the thoracic viscera, was grieved by life: he said he was going to die and died in 10 days". In most of the cases studied by the doctor, the period was two or three days.

Marcel Mauss reminds us that sociology, like psychology, is only part of biology. Ideas that haunt the social body (death by cancer) have an immense capacity for development and persistence in individual consciousness. It is at the level of biology, of the psychophysiology of the individual that the collective suggestion crystallizes; the consciousness is entirely invaded by ideas and feelings that associate cancer and inevitable death and that are entirely of collective origin. Individuals die "by enchantment". Our human societies are animal societies, highly evolved indeed, but animal societies above all. And man is only a symbolic social mammal for whom language and symbols are powers that sustain his impulse of life and death.

Claude Lévy-Strauss and symbolic effectiveness

Claude Levy Strauss (1908-2009) later formulated the concept of symbolic effectiveness, based on the work of the American physiologist Waler Bradford Cannon (1871-1935). Cannon theorized the famous principle of the fight-or-flight response. In the face of a threat, if fighting or fleeing is no longer possible, physiological stress puts the organism in danger (illness, death). "An individual conscious of being the object of an evil spell is intimately persuaded, by the most solemn traditions of his group, that he is condemned: parents and friends share this certainty. From then on, the community retracts: one moves away from the cursed one, one behaves towards him as if he were not only already dead, but a source of danger for all those around him...".

Of course, there has to be a belief in "magic". This symbolic power implies a macabre ballet of three: the sorcerer, the victim and the group, all must share the same belief, the same trust and the same requirement. The fundamental problem is the relationship of a certain type of individual that we might qualify as easily influenced by certain requirements and beliefs of the group (cancer is an inexorably deadly and horrible disease that threatens and terrorizes us all).

Announcement consultation or "the pink bone".

The passive patient-victim and the active doctor-shaman then engage in this macabre dance orchestrated by the health care system around the panic fear of cancer: the doctor must at all costs fight this modern-day plague that threatens the entire community. His feverishness in making appointments for further tests and treatments reinforces the idea of imminent death. Some patients are convinced that they are already, in a way, banished from the world of the living. Society as a whole is threatened by cancer (how else to explain this collective obsession to "fight against cancer"?) and each new diagnosis is threatened with expulsion from the social body (work, family, insurance, bank...). Her stress is such that some of them can lose control of their lives, all choice. Their metabolic, psychophysiological and even vital functions are in danger. The victim succumbs without having been able to fight or flee: they die of a heart attack if their constitution allows it, otherwise they commit suicide under the effect of the dramatic collapse of their neurotransmitter balance.

The obsession with breast cancer screening, with its lot of over-diagnoses, stems from this hysterized macabre dance, linking women, doctors and the social body: terrified at the idea of being socially banished, how many pre-cancerous or cancerous women have already been victims of this disastrous fate by the collapse of their vital defenses? Nobody knows it and nobody wants to know it, the important thing is to fight cancer at all costs, isn't it? Without going as far as to the death, the announcement of the presence of a cancerous tumor can trigger in some women the collapse of their psycho-neuro-immunological defenses, making even more difficult the medical fight to be carried out during heavy treatments sometimes engaged in excess (surgery, radio- and chemotherapy) and accepted because they seem to be the price to pay to continue to keep its place among the living.

The society tries to exonerate itself and save face by multiplying "empathic" campaigns aiming to give "tips and tricks" on how to "live well with cancer while remaining feminine and keeping one's morale, energy and smile", but some victims, once they have received the ACR4 mark, are not as fortunate as others to have a mind of steel when faced with the symbolic effectiveness of the pink bone.

Bibliography

Cannon W.C., Voodoo death, American anthropologist, 1942, 44(2), 169-181.

Gaudard P.Y.,  Suggestion of the idea of death in Marcel Mauss, acute fatal catatonia, phobia and symbolic modalities, Journal français de psychiatrie, 2010/4 (n°39)

Marcel Mauss, Definition of the collective suggestion of the idea of death. In Sociology and Anthropology, 313-320

Suicide and Cardiovascular Death after a Cancer Diagnosis, Fang Fang et al, N Engl J Med 2012;366:1310-8.

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.

What if you would benefit from stopping screening ?

Cécile Bour MD, 15 June 2020


The question was asked by Quebec scientists in the newspaper Le Devoir.
https://www.ledevoir.com/opinion/idees/580791/et-si-la-covid-19-vous-avait-sauve-e

Not everyone benefits from screening, especially if it is a screening whose risk-benefit balance is increasingly questioned in view of the cumulative risks, and in view of the benefit that is less and less proven with the hindsight we now have on breast cancer screening campaigns.
This pause in screening could be an opportunity for research, to reflect on information for women without alarmism or threats towards them, to ask the right questions about the use of financial resources in health care towards procedures and tools that are proven beneficial to populations, as the Quebec signatories conclude:
"The current context must be used to question more broadly our choices in the offer of clinical services in order to prioritize interventions that have demonstrated effectiveness and concrete benefits for patients.”

Read also the analysis of :
-Welsch/Prasad https://edition.cnn.com/2020/05/27/opinions/unexpected-side-effect-less-medical-care-covid-19-welch-prasad/index.html
-Judith Garber https://lowninstitute.org/reduced-cancer-screenings-in-covid-19/
-Susan Bewley https://blogs.bmj.com/bmj/2020/04/14/susan-bewley-things-should-never-be-the-same-again-in-the-screening-world/
-John Horgan https://blogs.scientificamerican.com/cross-check/the-cancer-industry-hype-vs-reality/

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.

Reduction in the number of cancer screenings during the Covid-19 period, what are the expected consequences ?

Article by Judith Garber, May 9, 2020
https://lowninstitute.org/reduced-cancer-screenings-in-covid-19/
Abstract Dr. Cécile Bour MD

Judith Garber is a scientist in political science and health policy at the Lown Institute. (The Lown Institute based in Massachusetts, United States, is a non-profit organization, a "non-partisan think tank that advocates innovative ideas for a fair and caring health system").
Screening procedures and routine medical visits have declined since the Covid-19 pandemic. According to the author, this trend is not necessarily deleterious, as there will likely be a decrease in unnecessary and harmful care.

A recent analysis conducted by the EPIC* Health Research Network used electronic health record data from 2.7 million patients in the U.S. and compared the rates of cervical, breast and colon cancer in the pre-Covid period with the current Covid period. They found that screening appointments in March 2020 decreased by 86-94% compared to the average number of screening appointments that occurred monthly from January 1, 2017 through January 19, 2020.
*EPIC: The Epic Community is a global community of healthcare organizations.

What effect would this drastic decrease in screening have on patient health? The authors of the EPIC report claim that it will be disastrous….
But is this grim prediction likely? According to J.Garber, several points need to be considered.

Mortality by disease vs. all-cause mortality

Although there is some evidence that cancer screening can reduce specific mortality, i.e. mortality from specific cancers, there is much less evidence of benefit on all-cause mortality (the risk of dying overall).

Editor's note: In the above cited study, the effect of screening with fecal occult-blood testing on colorectal-cancer mortality persists after 30 years but does not influence all-cause mortality. 
( Note that the interest in all-cause mortality is that it includes both mortality from the disease and mortality from treatment of the disease.
If there is an impact with decreased all-cause mortality, it means that screening (and treatment) are effective. The overall mortality thus serves as a warning signal; e.g., if there is an abnormal offset between overall and disease-specific mortality, this should raise the question of whether an adverse effect of screening may have been insufficiently taken into account. Overall mortality is not generally used as a judgement criterion, which is regrettable because it implies a loss of information. Editor's note)

In 12 randomized screening trials, reviewed by Dr. Vinay Prasad and colleagues in an article published in the BMJ, seven failed to show a decrease in overall mortality, despite lower rate of disease-specific mortality. In some cases, overall mortality in the screening group was therefore higher than in the non-screened group. What is the reason for this?
The possible explanation is that the negative effects of screening, in these cases, may counteract the benefits. While cancer screening reduces mortality for some cancers, for others it leads to many more false positives with unnecessary biopsies, as well as over-diagnosis and over-treatment. Thus unnecessary surgery and complications of diagnostic and therapeutic tests and procedures have a negative effect on health in screened groups. See also [1].
The authors of the EPIC report should therefore have included in their alarming conclusion not only potential cancer deaths due to lack of screening, but also potential false positives and cascade of events avoided (over-diagnosis followed by over-treatment), and should also have taken into account the lack of evidence regarding the overall benefits of screening on overall mortality.

Not everyone benefits from screening


Not everyone is equally likely to benefit from cancer screening explains J.Garber. The likelihood of a young adult developing cancer is very low, making them more likely to be exposed to screening damage than actually helped.

At the same time, at a very advanced age, cancer screening also becomes less beneficial because older people no longer have the life expectancy to benefit from screening, but on the other hand are more susceptible to the harmful complications of testing and treatment that result from the detections. For example, the US Preventive Services Task Force (an independent US agency that reviews health devices) recommends colorectal cancer screening only between the ages of 50 and 75.

Yet many people are being screened for cancer outside the recommended ages, even though they are unlikely to benefit from it, the author explains.
In one 2014 study published in JAMA, among elderly patients with a very high mortality risk , 37.5% were screened for breast cancer, 30% were screened for cervical cancer and 40% were screened for colorectal cancer. Among women who had previously undergone a hysterectomy but did not have cancer, 34% to 56% still had been screened for cervical cancer within past three years.
Although cervical cancer screening is not recommended for young women aged 15 to 20, an estimated 1.6 million Pap tests (smears) are performed unnecessarily on women in this age group each year.
In the EPIC Network's analysis above, these are not considered. If most of the people who missed out on screening in March 2020 were those at lowest risk, then a reduction in screening participation may not be such a bad thing overall - especially if it was the number of obviously inappropriate screenings that was decreasing.
However, with the information we do have, we do not know which patients have avoided screening, making it impossible to estimate the real number of lives lost or damage reduced in this 'Covid pause' from screening.

An opportunity for research

The authors of the EPIC report explain the issues that seem clear to them, namely the 'lives lost' due to reduced screening. However, it is very likely that this number is overestimated, given the high rates of inappropriate screening in the real world, as well as the potential negative and unaddressed effects of screening on overall mortality.
Although the true impact of the sudden halt in screening due to Covid-19 remains unknown, according to J. Garber we have an opportunity to find out.
Such a drastic change in screening is unusual, so we must take advantage of this unique event and follow the results of this historical experiment to better understand the actual health effects - both beneficial and harmful - of cancer screening.

Editor’s note

A few cautions: this monitoring of data will depend on the evolution of the outbreak and whether or not screening is resumed. Two months of interruption, as is the case in France, may be insufficient to draw these conclusions or to discern real variations in cancer incidence and mortality rates. This can be made even more complicated and the conclusions even more hazardous if the resumption of screening is not carried out in a uniform and homogenous manner in all regions of France, depending on the persistence here and there of Covid clusters that curb the public's willingness to attend the various screenings. Only if the interruption of screening would continue for a few more months, either because of the persistence or resurgence of the outbreak, or because of public resistance (fear of going to the doctor's office or of having to undergo a colonoscopy in the context of an epidemic), the situation would be quite different and results could emerge.

Reference :

1] https://cancer-rose.fr/2019/08/08/synthese-detudes-un-exces-de-mortalite-imputable-aux-traitements-lemportant-sur-le-benefice-du-depistage/

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 cancer business

https://blogs.scientificamerican.com/cross-check/the-cancer-industry-hype-vs-reality/

February 12, 2020 Par John Horgan 12 février 2020
John Horgan is a science journalist who manages Stevens Institute of Technology 's Science Writing Center. We are going to try to summarize the key points of his article here. Summary by Cécile Bour, MD

Cancer medicine generates enormous revenues, but marginal benefits for patients.


According to the author, there is a huge gap between the sad reality of cancer medicine in the United States and the optimistic claims made by the cancer industry and its media catalysts.
Cancer has spawned a huge industrial complex, including government agencies, pharmaceutical and biomedical companies, hospitals and clinics, universities, professional societies, non-profit foundations and the media.
Cancer-industry boosters claim that research, screening and treatment investments have led to "incredible progress" and millions of "cancer deaths averted," as claimed on the American Cancer Society's home page, a non-profit organization that receives money from biomedical companies.
Cancer experts and the media often describe new treatments with laudatory terms such as "medical breakthrough," "revolutionary," "miraculous," ("innovative," often heard in France, Editor’s note).
Cancer centers “frequently promote cancer therapy with emotional appeals that evoke hope and fear while rarely providing information about risks, benefits, costs, or insurance availability.” (as in the French Cancer League and the numerous cancer institutes, Editor’s note). These highlighted therapeutic achievements concern particular forms or rare cancers, which, according to the author, are exceptional in the midst of a "litany of failures".

Mortality rate

The best way to measure progress against cancer is to look at mortality rates, the number of people who succumb to cancer per unit of population per year.

As the average life span of a population grows (because of advances against heart and respiratory disorders, infectious disease and so on), so does the cancer mortality rate. To calculate mortality trends over time, therefore, researchers adjust for the aging of the population.
With this adjustment—which, to be kept in mind, presents cancer medicine in a more favorable light — mortality rates have declined almost 30 percent since 1991.

This trend, according to cancer-industry boosters, shows that investments in research, tests and treatments have paid off. What boosters often fail to mention is that recent declines in cancer mortality follow at least 60 years of increases. The current age-adjusted mortality rate for all cancers in the U.S. is just under what it was in 1930!
Editor’s note: See the book "Dépistage du cancer du sein, la grande illusion" published by Thierry Souccar Editor[1] for a more detailed explanation of this mechanism concerning breast cancer.
In reality, the rise and fall of cancer deaths track the rise and fall of smoking, with a lag of a couple of decades. Smoking raises the risk of many cancers but especially of lung cancer, which is by far the biggest killer, accounting for more deaths than colon, breast and prostate cancer combined.
It was concluded that without reductions in smoking "there would have been virtually no reduction in overall cancer mortality in either men or women since the early 1990s.”

New treatments yield small benefits, big costs

Clinical cancer trials “have the highest failure rate compared with other therapeutic areas”.
Pharmaceutical companies keep bringing new drugs to market.
But one study [2] found that 72 new anticancer drugs approved by the FDA [3] between 2004 and 2014 prolonged survival for an average of only 2.1 months… A 2017 study concluded that “most cancer drug approvals have not been shown to, or do not, improve clinically relevant end points,” including survival and quality of life.
The authors worried that “the FDA may be approving many costly, toxic drugs that do not improve overall survival”.

Screening leads to overdiagnosis and overtreatment

The cancer industry, aided by celebrities who claim that tests saved their lives, has convinced the public that screening for cancer is beneficial. The earlier we can detect cancerous cells, the more likely it is that treatment will succeed, John Horgan explains here one of the most significant findings of the past decade which is overdiagnosis. Many people have cancerous or pre-cancerous cells that, if left untreated, would never have compromised their health. Autopsies studies shown [4] that many people who die of unrelated causes harbor cancerous tissue.

Tests cannot reliably distinguish between harmful and harmless cancers. As a result, widespread testing has led to widespread overdiagnosis, the flagging of non-harmful cancerous cells. Overdiagnosis leads in turn to unnecessary chemotherapy, radiation and surgery.

Gilbert Welch was one of the first who brought the overdiagnosis to the light and called it « unfortunate side effect of our irrational exuberance for early detection.”
Editors’s note : In France, Bernard Junod [5], an epidemiologist, teacher and researcher at the Ecole des Hautes Etudes de Santé Publique de Rennes, was, together with Dr Bernard Duperray, a whistleblower on over-diagnosis in France concerning breast cancer screening. Mammograms and prostate specific antigen (PSA) tests have led to particularly high rates of over-diagnosis and over-treatment of breast and prostate cancer.
Adding together the harmful and lethal effects of screening, any benefits of screening "are outweighed by the deadly damage due to over-diagnosis and false positives" according to breast cancer specialist Michael Baum [6], co-founder of the screening programme in the UK, who is currently calling for the discontinuation of these programmes, which he believes could shorten more lives than they prolong.

For one man whose life is prolonged, many others will experience false positive results with subsequent additional tests, eventual prostate biopsy, over-diagnosis and over-treatment, and treatment complications such as incontinence and erectile dysfunction.
The prostate specific antigen discoverer, pathologist Richard Ablin, called the PSA test a "profit-motivated public health disaster."

All-cause versus specific mortality and « torturing the data »

Studies of tests for a specific cancer generally look at mortality attributed to that cancer. Mammograms are thus deemed effective if women who get mammograms die less often from breast cancer than women who do not get mammograms. This method can overstate the benefits of tests, because it might omit deaths resulting, directly or indirectly, from the diagnosis. After all, surgery, chemotherapy and radiation can have devastating iatrogenic effects, including heart disease, opportunistic infections, other forms of cancer and suicide.

Rather, reference should be made to studies that measure "all-cause" mortality, as they account for the deleterious effects of treatment. A 2015 [7] meta-analysis by epidemiologist John Ioannidis (renowned for bringing the scientific replication crisis to light) and others found no reductions in all-cause mortality from tests for cancer of the breast, prostate, colon, lung, cervix, mouth or ovaries for asymptomatic patients.

In a recent editorial in the European Journal of Clinical Investigation, Ioannidis and four co-authors argue that cancer screening (especially mammograms and PSA tests) does more harm than good and should be abandoned. [8]

Survival rate

Often are pointed out improvements in survival rates, the length of time between diagnosis and death.
Survival rates for some cancers have indeed grown as a result of more widespread and higher-resolution testing, which detects cancer earlier.
But this doesn’t mean that people live longer as a result of early detection. They simply live longer with a diagnosis of cancer, with all its harmful emotional, economic and physiological consequences. (Explanation of survival rate here [9])
Using survival rates to promote tests is an example of what is have called “torturing the data» and for this article’s author, this a case of monstrous malpractice.

Corruption in the cancer industry


At USA, according to oncologist Vinay Prasad (@VPrasadMDMPH ; very active on twitter, Editor’s note) many cancer specialists accept payments from firms whose drugs they prescribe.
This practice "leads us to celebrate marginal drugs as if they were game-changers," Prasad argues. "It leads experts to ignore or downplay flaws and deficits in cancer clinical trials. ”
The desire of oncologists to produce monetizable findings might also compromise the quality of their research. A 2012 study of 53 “landmark” cancer studies found that only six could be reproduced.

Solution? Gentle cancer medecine?


The author pleads in favor of a medecine that adopt new therapies “when the benefit is clear and the evidence strong and unbiased.”
He pleads in favor of what some will call as conservative medicine that defines itself as a medicine that resists what is commonly and historically established, that knows how to say "stop" and arm itself with a lot of patience for those who want more medicine in a time where nobody is in favor of this attitude.
This meaning less testing, treatment, fear-mongering, military-style rhetoric and hype.
It would recognize the limits of medicine, and it would honor the Hippocratic oath: first, do no harm.
The patients must help these conservative physicians. We must recognize the limits of medicine and the healing capacities of our bodies, (dormant, non-evolving, spontaneously regressive cancers).
We must resist tests and treatments that have marginal benefits, at best.
We may never cure cancer, which stems from the collision of our complex biology with entropy, the tendency of all systems toward disorder.
But if we can curtail our fear and greed, our cancer care will surely improve.

According to Horgan, the fact to recognize the human body’s “inherent healing properties" and to acknowledge “how little effect the clinician has on outcomes” will make that physicians will thus protect themselves against their greatest foe—hubris, which is vanity.

References


[1] Extract from book of Bernard Duperray
Epidemiologists have the choice between two reference populations, the population of Europe or the world. The choice of the standard (“Europe” or “World”) induces wide variations in mortality.
“World” rates based on a younger population are generally lower than “Europe” rates reflecting an older population.
Depending on the standard chosen, the rate for the same population appears more or less high.

In France, the rates used most often by the InVs are the «Monde» rates (purple curve on the figure). The «Monde» standard tends to minimize the mortality rate for a country like France because it does not correspond to the structure of the French population. Moreover, according to Bernard Junod, age standardisation is subject to caution in describing a variation in mortality when the variations for the same age group are not uniform.
To assess the evolution of mortality in France in the fairest possible way, Bernard Junod chose to take as «standard» the age distribution of the population residing in France in 1992, that is to say in the middle of the period studied (1980 to 2005).
It thus obtained a standardized annual mortality rate by age in France per 100,000 women of 32.6 in 1980 and 32.9 in 2005, thus stable over this period.

In summary, here is what can be unquestionably retained from Figures 13 and 14:
• Between 1950 and today, the annual number of deaths and the crude rate of mortality from breast cancer have not decreased;
• Standardized rates “World” (purple curve fig 14) and “Europe” (blue curve fig 14) continuously increase in France until 1993 and then decrease while the crude rate stabilizes.

Let us now look again at figure 14. A surprising fact concerns us. The standardised “World” and “Europe” mortality rates of today, while falling, are still higher than those of the 1950s. Some would argue that comparing the current rates with those of 1950 is questionable because of the unreliability of the data at that time. It is possible, but then what about the fact that the standardized rates in 2006 were at the same level as those in 1970 according to the death registry which refers since 1968 (date of the creation of CépiDc, the Centre for Epidemiology on Medical Causes of Death)?

[2] https://jamanetwork.com/journals/jamaotolaryngology/article-abstract/1891387
[3] https://www.fda.gov/
[4] https://cancer-rose.fr/2017/12/14/frequence-des-cancers-latents-de-decouverte-fortuite/
[5] https://formindep.fr/apparence-et-protestation/
[6] https://cancer-rose.fr/2019/08/08/synthese-detudes-un-exces-de-mortalite-imputable-aux-traitements-lemportant-sur-le-benefice-du-depistage/
[7] https://www.researchgate.net/publication/271022752_Does_screening_for_disease_save_lives_in_asymptomatic_adults_Systematic_review_of_meta-analyses_and_randomized_trials
[8] https://onlinelibrary.wiley.com/doi/full/10.1111/eci.13062
[9] https://cancer-rose.fr/2019/05/21/peurs-et-croyances-histoire-naturelle-de-la-maladie-survie/

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.

An unexpected side effect of the covid epidemic-19

The following is the view of two researchers regarding the long-term contribution of suspending cancer screening, to the advancement of cancer knowledge.


Gilbert Welch (Centre for Surgery and Public Health at Brigham and Women's Hospital and author of "Less Medicine, More Health")
And Vinay Prasad (oncologist, Associate Professor of Medicine in Oregon Health and Science University et auteur de "Malignant: How Bad Policy and Bad Medicine Harm People With Cancer")
https://edition.cnn.com/2020/05/27/opinions/unexpected-side-effect-less-medical-care-covid-19-welch-prasad/index.html


Synthesis by Cécile Bour, MD, 28/05/2020


We had already recently reported the views of Judith Garber, a political and health policy scientist at the Lown Institute, and also whose of Susan Bewley, Professor Emeritus of Obstetrics and Women's Health at King's College London and President of HealthWatch.

According to the authors, due to the fact that medical care services were overwhelmed by the epidemic, some patients certainly suffered harm on their health.
For others, though, the two authors suggest that the delay may have been beneficial.
In addition to the effect of the decrease in surgical interventions, emergency room admissions, requests for additional biological and radiological examinations, and the increase in telemedicine, the two researchers review the impact of suspending cancer screening.
Previous research on the global effects of physician strikes has suggested a decrease in mortality concomitant with reduced medical consumption. It therefore seems relevant to carefully study mortality trends in 2020 and to disentangle Covid-related deaths from other causes of death. It would be just as important to look at inequalities according to socio-economic background: the interruption of medical care may reduce mortality among the over-medicated wealthy, but the opposite phenomenon is feared among the poorest.

The screening area

Suspending cancer screening is one of the areas to be studied according to Welsch and Prasad. For them, there is no doubt that the decline in mammography will lead to a decrease in the number of breast cancers diagnosed. But is this a bad or a good thing?
This is a good opportunity to study what will happen in American cancer statistics when screening resumes, in the opinion of these authors.
They expect one of two observations:

  • Breast cancer rates might "catch up" with the delay in diagnosis, meaning the deficit in cancer diagnoses during the pandemic would be matched for by a surplus of cancers in subsequent years. In other words, any cancers not detected in patients during the pandemic would eventually be found afterwards.
  • The alternative would be that breast cancer diagnoses would never catch up…
    Why ?
    Years ago, researchers observed this phenomenon in Norway. Welsch and Prasad refer here to the famous Oslo Institute study of 2008: in a group, women aged 50-64 years had three mammograms in six years, and at the end of six years it turned out that they had more invasive breast cancers detected than women in the comparison group, who had only one mammogram after six years. If all breast cancers were expected to become symptomatic, there would have been as many in both groups. There is no reason why there should be fewer in the group that was not regularly screened, except that breast tumors that never expressed themselves and even regressed spontaneously were detected in excess in the group that had more frequently mammography. This study was at the origin of the demonstration and quantification of overdiagnosis. (See our brochure).

A mammographic procedure done later and less frequently therefore leads to fewer breast cancer diagnoses. It could be argued that this deficit eventually manifests itself in undetected tumors appearing within a longer time frame, around 5, 10 or 25 years. However, this is not the case; this deficit is never caught up even after 25 years of follow-up, as Miller's study shows.
The results of the 2008 Oslo study suggest that some small cancers regress on their own. Question: could this be happening now during the Covid-19 pandemic? And could it be highlighted?

In the article the authors also look at the decline in heart attacks and strokes observed during this period. These diseases were either under-diagnosed or there were actually fewer of them?
Who benefited from this period of less medicalization, and who lost?

Conclusion of the authors

We won't find the benefits unless we look for them, say Prasad and Welsch. We need physician-researchers who are willing to ask hard questions about the services they provide - questions that may threaten their own professional/financial interests.

Covid-19 provides a once in a lifetime opportunity to study what happens when the well-oiled machine of medical care downshifts from high to low volume in order to focus on acutely ill patients. It will be comfortable for physician researchers to study what was lost. It will be courageous for them to study what was gained.

Our opinion

Here, the two researchers present and highlight the question of overdiagnosis and discuss its causes (spontaneous regression of a slow-growing/null tumor), rather than trying to quantify it.
Indeed, the period of suspending screening is likely to be too short for examining its impact reliably. For that it would require that the interruption last two or three years or more (as in the Oslo study comparison group, where the time period for mammography non-examination in the comparison group was 6 years), and that this interruption concerns people who would have been eligible within that time period, according to the initial schedule, as well as that there be no attempt to catch up with the delay.
In our situation, only a few months of over-diagnosed cancers will disappear.
Already in our country the INCa has been rushing, although the epidemic is not yet totally behind us, to send a note to the ARSs (Regional Health Agency) asking to set up a timetable to catch up with the screenings not carried out! (Page 2)
"A plan to catch up on screening not carried out will be established by each CRCDC (regional coordination centers for cancer screening), depending on the estimated number of screenings not carried out and on the epidemiological situation in the territories, its own resources and the methods for resuming activity".
It should be noted that there is an obsessively technocratic concern about the activity indicators of the screening centers, there is no question of reflecting on the possibility of a study based on the data collected during the suspension of screening period, no, it is a question of catching up on indicators that would have lagged behind schedule for the last three months.
A Danish physician colleague confirms that in Denmark, as well, the reactivation has also taken place, and it is not lagging behind….


Another reflection is that if we will find only a slight reduction in incidence due to the short duration of suspending cancer screening, it will be very difficult to detect reliably the eventual compensatory increase mentioned by the authors, or on the contrary the absence of a compensatory increase, not to mention the fact that tumors that disappear by themselves (the over-diagnosed) need nevertheless at least several months, if not years, to disappear.

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.