Author: Cancer Rose

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BOOK “IM-PATIENTE”

NOVEMBER 2, 2021 BY CANCER ROSE

BOOK “IM-PATIENTE”, a feminist exploration of breast cancer

Publisher First Editions

By Mounia El Kotni and Maëlle Sigonneau

Mounia El Kotni is an anthropologist specializing, among other subjects, in health issues.

Maëlle Sigonneau was an editor. She disappeared in 2019 due to metastatic breast cancer. We hear her speaking in a podcast of Impatientes for Nouvelles Ecoutes in 2019 (a series of podcasts was then produced around the theme of breast cancer to tackle the injunctions addressed to women more globally by the medical profession and society).
The book is a continuation of the podcast, and it addresses the social and feminist impact of the disease through the eyes and experience of Maëlle. It talks about medical mistreatment and administrative violence. It highlights the sexist injunctions aimed at not harming society and masking this disease, disguised in pink and glamorized in October Rose campaigns.

This powerful book goes beyond the sole theme of cancer to resonate with all those who suffer from chronic illness.

Injunctions to femininity

"Are you having chemotherapy? Then the most important thing is to moisturize your skin, ok ?"

Is this really a caring concern of the pharmacist? Or is it the reflection of a society afraid of disease that the image of a sick woman sends back to it? The patient just wants to live, survive, and grow old...like the rest of us.

"It's important not to let go!" Are men told not to let themselves go after an illness?

What if we told women that there are certainly available moisturizers, wigs, breast prostheses, but only if they want them. And they have the right to be tired, makeup-free, bald, and refuse breast reconstruction.

Injunctions to procreate

A visit to a fertility clinic is one of the first steps in the process for young women. Although oocyte preservation is not compulsory, the book explains how years of preparing women to be mothers push them to save their oocytes "just in case," even if they do not plan to have children.

This oocyte conservation project is offered within days of the announcement. The book underlines to what extent specific accesses in health (here fertility preservation) are made fast, fluid, and obvious when society considers it legitimate. At the same time, some categories of people (homosexual couples) encounter many obstacles and exclusions in their medically assisted procreation process.

Injunction to breast reconstruction

The deletion of the sick body also involves breast reconstruction. The prosthesis is often a way for women to return to "normal" to go back to the condition of "before cancer." This wish is encouraged by society; the presence of breasts in pairs seems indispensable.

However, 70% of patients abandon breast reconstruction for various reasons, including a lack of surgical options or budgetary constraints.

Injunction to screening, injunctions by Pink October

The book also talks about how women are solicited during the Pink October campaigns without giving them easier access to more measured and objective scientific information.

When a woman questions the relevance of this screening in societal, media, or medical messages, she is constantly criticized, either for being imprudent or inconsequential. On the other hand, she is called stupid or "indoctrinated" and uncritical when she strictly follows official recommendations.

Women's interests are frequently put second; for the manufacturers of screening tests and mammography machines, medicine is just a market, and the people who persuade politicians to make public health decisions are those who have something to sell and a stake in the pursuit of those public health policies.

Finally, women become permanent subjects of medical surveillance and disease and cancer detection, making them "walking" risk factors...
They do not benefit sufficiently from decision-making tools with balanced information, which our collective Cancer Rose continues to denounce.

Pink October has become a market; there is no real national campaign of information. There, too, the image of a naked woman is used to promote a product, even if it is a medical examination.
We always hear the same stories about women who have beaten cancer, but do we hear about women who have serious cancers from the start, metastatic cancers for which medicine is still rather helpless?
Behind the pink mask hides concealment of less pleasant and less "glamorous" facts.

Pink October is a marketing tool that allows products to be sold under the pink label, but the amount of money collected and donated to research and its use is rather obscure.

Injunction to beauty

Are the "beauty workshops" offered to women after their treatments of real benefit to patients, or is it a lucrative business? Often, the workshops are free, but as the saying goes, "when it's free, you're the product to sell."

The products are, most of the time, completely conventional. It is not because the product is offered that it is necessarily without ulterior motive. It is necessary to be cautious of what is proposed; the products are not necessarily "organic" or "natural," as one might expect.
The cost of these products adds up to a loss of income for many patients. Half of the people have an out-of-pocket expense; some dental care for dental conditions secondary to treatment are not covered.

30% of women over 50 years old do not return to work within two years, and 20% of those who return to work only return part-time.

Earnings drop

Within two years of being diagnosed, three out of every ten women lose or quit their job. Women who become ill are frequently concerned about being perceived as underperforming, and their self-esteem suffers as a result.

Despite financial support, 60% of women experience a drop in income at the end of a labyrinth of procedures.

Information about administrative procedures is also difficult to obtain, and there are numerous bureaucratic obstacles. This also causes a lot of stress for the patients.

Injunction to perform, including in the context of sexuality

Women with breast cancer must continue to fulfill their societal roles. They are not always supported at home or work. The cancer survivor is portrayed as a fighter, a warrior.
This puts a tremendous amount of pressure on women because this is frequently how she is portrayed: as a woman who has overcome the disease, returns to work, grows out of it, and resumes a normal love life.
These are significant injunctions that deprive women of being simply individuals, sick human beings who need the care of others.

After illness, a woman is six times more likely to be abandoned by her partner.
After two years, 21% of ill women had been abandoned by their partners, while only 3% of ill men had been separated.

Injunction to sexuality

To recover its "life as a woman "is a way of saying "to regain her sexuality. "And this injunction, the women are the ones who receive it.

"Do not let yourself go and remain desirable." The book asks the question, "...who are the real beneficiaries of these injunctions: the women or their (supposed) partner? Does "maintain sexuality" despite cancer suit women, or does it rather suit society?"

Making women feel guilty

The current discourse on cancer prevention is based on making women feel guilty, blaming their lifestyle. The fight against cancer is oriented, on the one hand, towards an injunction addressed to women to make "the right choices" and to live healthily, and on the other hand, towards a technological approach in early detection by mammography.

However, a third option is being overlooked: the implementation of ambitious environmental health policies.

In 2017, cancers represented the second largest health care expense for Social Security.  These changes and progression cannot be explained solely by aging or demographic change. Addressing real environmental problems is critical. However, prevention through environmental cleanup is costly, whereas so-called prevention, based on early cancer detection, is highly profitable for the imaging and pharmaceutical industries.

The charities

Maëlle denounces the sometimes clumsy and misplaced charity of organizations.

She feels that people in these organizations essentially solve their problems by making believe that they are helping. Maëlle denounces this intrusive and infantilizing help that she experienced, with the distribution of daffodils, for example, in the hospital's vicinity, at the end of her chemotherapy treatment...

Maëlle explains a need for adapted social care; the emergency is not the cancer that everyone talks about, with a good prognosis, curable. The priority for research should be on these serious, immediately metastatic cancers.

Feminism

For Maëlle, the fight is also a feminist one.

Men had succeeded in attracting the attention of public officials in the fight against AIDS. Metastatic breast cancer has less visibility in Maëlle's opinion because it affects women, who have less space to express themselves.

To break free from compassionate behaviors and the glamorization of cancer, we would need to boycott Pink October, replacing pink messages with large posters on endocrine disruptors; we could imagine a month where conferences on advanced and metastatic breast cancer would be organized, and where we would raise awareness about the carcinogenic effects of pesticides, for example...

Instead of covering up this disease with pink, we must demand ambitious public policies, mobilize research (more on the risks of dying from cancer than on the risks of knowing a cancer in one's life, on the genetic determinants and the association with obesity and with certain atypical breast hyperplasias, Editor's note), improve the difficult daily life of the sick women.

The theme of this courageous book goes beyond metastatic breast cancer. Chronic diseases are a silent epidemic that should push us all to get involved in the real issues of public health.

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.

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Screening can only detect slow cancers

NOVEMBER 5, 2021 BY CANCER ROSE

Observation of our colleague, Dr. Granger, Senology Specialist, November 2021Cancer with high invasive potential, Mrs. NP

Cancer with high invasive potential, Mrs. NP

Mrs. NP, 53 years old, consulted following her last breast assessment, classified ACR 4 due to discovering an attenuating ultrasound lesion in the left breast. There would finally be nothing suspicious after a quick micro biopsy and MRI.

Mrs. NP, wonders, however, what "truth" is hidden behind this "ACR 4" that has suddenly become "non-suspicious" and what follow-up I can provide her.

Clinically, her breasts are soft and regular, with no discernible nodules. There was no discharge or adenopathy. The mammogram reveals dense fibrosis: if the images were considered "normal," they are very uninformative due to the opacity of the tissues, and we can only note the absence of calcifications. Ultrasound confirmed the presence of multiple disseminated hypoechoic areas. At the intersection of the left external quadrants, the most important one is effectively attenuating and evokes in priority an old cystic structure, rounded and finely echogenic. Puncture under ultrasound guidance with an 18 G needle allows evacuation of a pasty serosa perfectly translucent and homogeneous on the slide: a simple gel cyst.

Conclusion: a typical gel cyst (cytology of the smear will confirm). A one-year ultrasound examination is recommended.

Monitoring was uneventful for 4 years. Then a new check-up revealed the appearance of a hypoechogenic lacuna with irregular contours about 5 mm in diameter, of very doubtful appearance, in the right supra-internal part (i.e., contralateral to the initial cystic image): its puncture under the guidance, was poor, a slide was taken for cytological analysis. This puncture will be acellular, therefore not informative: further investigations are necessary.

The 3-month check-up by palpation revealed the presence of a slightly firmer and poorly bounded area, which had not previously been noted. The hypoechogenic lacuna was verticalized on some sections (a significant sign of malignancy), absorbing, measuring 3 to 6 mm depending on the section axis, and most likely mitotic.

Conclusion: the presence of a very suspicious ultrasound lesion in the right supra-internal region which needs to be excised after ultrasound localization. Because the lesion was so small, a micro biopsy was not performed to avoid diluting it for a proper definitive histological examination (instructions from my anatomo-pathologist).

The chosen surgeon will agree to proceed "the old way" based solely on my ultrasound imaging. Histological diagnosis: infiltrating lobular carcinoma with two foci of 2 and 4 mm, separated by less than 5 mm, moderately differentiated (SBR 2), and peri-nervous sheathing. The lymph node dissection involves the removal of two massively metastatic lymph nodes. Chemotherapy, radiotherapy, and hormone therapy will be used in the treatment.

The first nine years are a "remission" phase. After that, there was a significant increase in CA 15-3, from 28 (normal value for the laboratory) to 48 U/ml in one year. A PET scan revealed a single hypermetabolic lesion of the scapula. Biopsy confirmed the lesion's metastatic nature, which is consistent with its known breast origin. A focused EBRT was carried out (inclusion in the STEREO-OS trial).

After 3 months, monitoring PET scans will reveal the appearance of new iliac, costal, and clavicular hypermetabolic foci.

This observation, which is still ongoing, raises at least two particular points for Senology practice and Screening.

1 - The initial senological evaluation classified as ACR 4 immediately triggered micro biopsy and MRI: this heavy artillery, set off and organized by the radiologist himself, without any concertation, may have "reassured" him... but not the patient, who was left without a precise diagnosis of the anomaly.

One simple procedure was needed to clarify the problem: a puncture with a fine needle under ultrasound guidance.

This overlooked technique often provides the correct answer: a simple glance at the slide with a light spot is reassuring, revealing a thin, homogeneous, and translucent layer pathognomonic of an old gel cyst. As a reminder: a simple blue needle (6/10th of external diameter, i.e., 23G) is all that is needed; the procedure is painless, much less invasive than a micro-biopsy, and twice as less expensive in the nomenclature of medical procedures).

If this puncture is performed with an 18G needle, the cyst is usually completely evacuated, depending on the degree of cyst gelation. And this immediately reassures everyone, including the patient, even before the subsequent laboratory reading.

This point concludes that our response must be graduated to avoid turning a simple, functional detail - breast cysts being extremely common during the menopausal period - into a nightmare for the patient and ruin for the health insurance system.

2 - The discovery of an abnormality in the other breast four years later did not result in such a simple diagnosis. The clinical examination and mammography were normal, as they had been the last time, but the ultrasound was suspect. The puncture proved inconclusive, necessitating close monitoring.

I would like to point out that 3 months later, the clinical status had become clear, and the imaging was more obvious. The surgery done at the same time showed a very progressive cancer since it was bifocal from the start, although small, with two massively invaded lymph nodes and phenomena of nerve sheathing, with a poor prognosis. After a few asymptomatic years, a series of bone localizations appeared quickly after the first one, confirming an all-sided evolution. The remission was only apparent; the cancer was preparing to explode.

This observation illustrates a case of cancer with high invasive potential: these cancers are always one step ahead, and we just follow their galloping tracks. They constantly put us in failure, and it is indeed against this type of cancer that a screening, even very voluntarist, is ineffective.

Screening, like all screenings, can only detect slowly progressing cancers with a good spontaneous prognosis.



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.

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Why does INCa instrumentalize women’s fear of having breast cancer and dying from it?

November 5, 2021

By Dr. Alain Rauss, MD, Biostatistician, for the Cancer Rose collective

INCa and Cancer Rose have been at odds for years over the usefulness of breast cancer screening. Furthermore, Cancer Rose's criticism is directed at the INCa's failure to provide clear, objective, and neutral information to women, trapping them in a process initiated by the INCa based on successive cancer plans [1].
However, the question is not to favor or against screening but rather to allow each woman to make a personal decision based on her history and fears, rather than a decision guided by factors other than sanitary ones.
Finally, it appears that the issue is elsewhere. Why frighten people and use methods that are more akin to manipulation and propaganda?

Instrumentalization of fear

Today, if we look closely, we can see that INCa uses the fear of having breast cancer and dying to achieve its goals.

The fear of death has enabled us to live, save our lives, and arrive here. Despite all our societies' evolutions, we still have this fear in us. On the other hand, playing on fear is a shameful attitude because when fear is present, it becomes more difficult to use discernment, which is the problem. As previously stated, playing on people's fears is manipulation.

Awareness of all risks

There are numerous risks of dying throughout one's life, one of which is breast cancer. The INCa's hype of breast cancer causes at least a part of the population to lose sight of the fact that there are numerous other risks in life. This hype leads us to stop relativizing and consider that if screening is implemented, it will somehow make the woman "immortal."

The table below shows the total causes of death for men and women and changes between 2015 and 2016. Notably, of the 290,300 deaths observed in women in 2016, breast cancer is the 8th leading cause of death. Before the mortality from breast cancer, there were other causes, nervous system diseases, respiratory system diseases, cerebrovascular diseases, mental and behavioral disorders, external causes, and ischemic heart disease.

Thus, breast cancer mortality, although not negligible, represents only 4.27% of women's deaths. In contrast, the first 7 causes of death represent 48.5% of deaths (and we are not counting the other causes of death of the circulatory system that are not precisely individualized, representing 44,000 deaths per year, i.e., nearly 15% of deaths).

If women had to feel all their fears to the level that the INCa tries to bring out for breast cancer (as shown in the box in the latest INCa leaflet below), a woman's life would quickly become unbearable. With the risk of dying from another cause nearly 25 times higher, everyday life with this pressure on the risk of death would quickly become intolerable.

Taking advantage of a situation in which there is no consciousness of all the risks

We can see that INCa takes advantage of the fact that all other sources of risk of dying are absent from the media hype, leaving the field open for INCa on breast cancer and highlighting a fear that can stimulate irrationality in a woman's attitude toward breast cancer screening.

The INCA takes up 1 MONTH of the year in the media space for 4.2% of the deaths, with this month's "Pink October" being enormous. Imagine what life would be like if we had a particular month for one or another risk that kills more than breast cancer?

It is evident that if fields of cardiology, neurology, or pneumology put forward the risk of dying from cardiovascular disease, nervous system disease, or respiratory disease with tenfold means in light of the risks that may exist, the "noise" about breast cancer would be stifled.

However, on closer examination for these causes, which account for most deaths, prevention exists in many instances instead of screening. This means that it is possible to implement measures that will significantly reduce the risk, potentially saving hundreds of lives (as opposed to a battle over 1 or 2 fewer deaths over a 10-year follow-up in the case of breast cancer screening in 1000 women).

Thus, INCa takes advantage of a situation in France that could be described as monopolistic in terms of the fear of dying.

Reducing the fear of dying from breast cancer

All of this seems to indicate that it is critical to be aware of the numerous risks of death!

Women have multiple risks of dying in everyday life, not just from breast cancer, far from it. We accept risky behaviors that are responsible for many deaths, such as smoking and drinking. The rise and decline of cancer deaths follow those of smoking, with a few decades lag. Smoking increases the risk of many cancers, particularly lung cancer, which is by far the deadliest, accounting for more deaths than colon, breast, and prostate cancer combined. [2]

Is it reasonable to be afraid of dying from breast cancer and being manipulated but not be scared of dying due to our risky behaviors?

A return to common sense appears to be necessary to ease the stress that the INCa places on women, especially since it focuses on one single cancer.

The right to choose AFTER adequate information

Each woman must evaluate all the risks of death for her based on clear, reliable, complete, and honest information. Each woman must be able to determine which risks she is willing to accept and which she is not.

Her decision will then be in harmony with her history, her preferences, her environment... This choice is her own, and it should not be influenced by anyone, especially not by the medical profession or any other organization. This is what every woman should require from our health authorities:information and respect for her choices.

If there was only the fear of dying

In this screening propaganda, INCa is not only playing on the fear of death by cancer but also on the fear of developing breast cancer. The fear of losing her identity and her femininity is perhaps even more devastating for a woman. Without even thinking about death, the psychological consequences for this particular cancer are enormous. Many healthy women believe that by getting regular screenings, they will be able to avoid breast cancer.

Arguments such as "The earlier breast cancer is detected, the better the chances of recovery" or "I participate in organized breast cancer screening every two years. It has finally become a habit, and it reassures me and my family " are only there to instill the idea that by participating in screening regularly, healthy women will avoid damage to their bodies and of their identity as women. INCa lies to them exploits their naivety on the subject and especially their fear.

The appeal to fear is an influence technique used to increase screening participation, as detailed in an academic article outlining all the methods used to persuade women to undergo screening; we had discussed it[3] [4].

A culture of understanding risk

Living today without understanding the risk (as we have just seen with the INCa play without any notion of relativization) exposes the population to a climate of fear easily exploitable by unscrupulous people who want to achieve their goals.

 Because of this lack of explanation of what a risk is, these ultimately ill-intended people can use a kind of "hysteria" around risk.

As we mentioned earlier, without understanding the risk, fear arises, and discernment becomes extremely difficult to exercise.

Gerd Gigerenzer, a Berlin psychologist and author of "Thinking about Risk - Living with Uncertainty," denounces the misuse and torture of statistical data that occurs every pink October in every country.[5]

Let us defend the end of the use of fear to guide women's decisions, let us support clear information about the risks (without catastrophism)

References

[1] https://cancer-rose.fr/en/2021/02/08/new-french-cancer-plan-2021-2030-a-soviet-plan/

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

[3] https://cancer-rose.fr/en/2021/04/20/methods-of-influencing-the-public-to-attend-screenings/

[4]  https://cancer-rose.fr/wp-content/uploads/2021/04/Supplementary-Tables-Rahbak-et-al-210421.pdf

(summary table of institutions using influence methods).

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.

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Increasing the importance of early clinical diagnosis

NOVEMBER 5, 2021 BY CANCER ROSE

A Lancet study

Duggan C., Trapani D., Ilbawi A., Fidarova E., Laversanne M., Curigliano G. et al.
National health system characteristics, breast cancer stage at diagnosis, and breast cancer mortality: a population-based analysis
DOI:https://doi.org/10.1016/S1470-2045(21)00462-9

Concept of early clinical diagnosis

The authors make a distinction in their article between screening and early detection of breast cancer symptoms.

We therefore distinguish :

-Anticipated diagnosis = screening, which is based on repeated mammograms, as practiced in many countries.

- Early clinical diagnosis = the earliest possible detection of the first symptoms of breast cancer; this detection relies on the training and information of women and physicians and/or midwives (caregivers in general), on the one hand by raising their awareness (remembering to look for the symptom in the breast), and on the other hand by educating them on 'what' to look for.

- This concept of early clinical diagnosis contrasts with a late diagnosis due to the presence of symptoms of existing cancer that have been neglected for a long period due to a lack of information for women and a lack of training for caregivers.

The authors note that some countries do as well with early symptom detection as countries that use screening.

The Lancet article suggests that early diagnosis may work as well as screening.

Indeed, the WHO promotes early clinical diagnosis as an alternative to screening in countries that lack the resources for mass screening, which is not the case in France. We talked about it here: https://cancer-rose.fr/en/2021/09/04/screening-campaigns-a-move-toward-greater-caution/

Ukraine appears to have chosen this option, which is appropriate for developing countries that cannot afford routine mammography screening.

However, we can draw a pertinent question and a lesson from these findings for our countries where campaigns are in full swing, with mammographic screening, which no longer demonstrates its effectiveness and has drawbacks: What if early detection had a better benefit/risk ratio than routine mammographic screening?

Reducing breast cancer mortality with less overdiagnosis

The findings of the study, published in The Lancet Oncology, support the WHO recommendation, implying that early clinical diagnosis may be as effective as screening in avoiding advanced cancers and lowering mortality from breast cancer. 

The benefit-risk balance of early diagnosis may be better than that of mass screening because it eliminates overdiagnosis and overtreatment caused by mammographic screening.

A serious alternative

As explained in detail on the website of Dr. Vincent Robert, statistician, this is an alternative to both screening and "doing nothing."

The idea, promoted by the WHO and confirmed by the Lancet study, is to offer this option to women to broaden their range of options and allow them to choose the path that appears to be most suitable for them, with full knowledge of the facts.

Read: https://mypebs-en-question.fr/actus/duggan_lancet.php#ref



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.

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Bad statistic of the month October

https://www.hardingcenter.de/en/node/285

https://www.rwi-essen.de/unstatistik/120/

Translation by Cancer Rose, nov 5, 2021

Bad statistic of the month October: Breast cancer month October - Pink ribbons instead of information

Bad Statistic of the Month

Berlin psychologist Gerd Gigerenzer, economist Thomas Bauer from Bochum, and statistician Walter Krämer from Dortmund began publishing the “Bad Statistic of the Month” (“Unstatistik des Monats”) in 2012. Katharina Schüller, managing director and founder of STAT-UP, joined the team in August 2018. Every month they question recently published statistics and their interpretations. Their underlying aim is to help the public deal with data and facts more rationally, interpret numerical representations of reality correctly, and describe an increasingly complex world more adequately. Further information on this initiative can be found at www.unstatistik.de  and on the Twitter account @unstatistik.

October is Breast Cancer Awareness Month. You would think that women would be particularly well informed during this month. To do this, we typed "Breast Cancer Month October 2021" into Google and looked at the entries on the first page. All of them promote early detection, but none of them report what the scientific studies have found about its benefits and harms. Before we look at the entries, it's good to take a look at the results of scientific studies involving more than 500,000 women so far.

They show: When 1,000 women age 50 and older go for screening, 4 of the women die of breast cancer within about 11 years, and for women who don't go for screening, 5. So one fewer woman dies of breast cancer for every 1,000.

However, the total number of women dying from any cancer (including breast cancer) does not change; 22 in both groups. That is, one fewer woman in the screening group dies with a diagnosis of breast cancer, but one more woman dies of another cancer. So, overall, there is no evidence that screening saves or prolongs lives.

But women who go for screening face two harms. One in 100 out of 1,000 receive unnecessary biopsies due to false alarms, and 5 women have part or all of their breast removed unnecessarily. This information should be delivered in October, Breast Cancer Awareness Month, so that women can make an informed decision for or against early detection (see also the "Fact Box on Early Breast Cancer Detection through Mammography Screening"  „Faktenbox zur Brustkrebs-Früherkennung durch Mammographie-Screening“
by the Harding Center for Risk Literacy, led by "statistician" Prof. Dr. Gerd Gigerenzer).
https://www.hardingcenter.de/en/early-detection-of-cancer/early-detection-of-breast-cancer-by-mammography-screening

Google hit pages provide almost no information about the benefits and harms of screening

So what do the Google search results or web pages tell us? Euronews.com gives no information at all about the benefits and harms of screening. Instead, the website promotes pink ribbons and a pink duck parade. The womens.es website, on the other hand, gives a figure: Early detection "reduces the likelihood of death by 25 percent." Does that mean that for every 100 women, 25 fewer will die of breast cancer? No. This figure is found by reporting the reduction from 5 to 4 in 1,000 women as "20 percent less" and rounding it up to 25 percent. Here, I suspect readers are unaware of the difference between a relative risk (25 percent less) and an absolute risk (1 in 1,000). Indeed, studies show that many women (and men) do not see through this trick.

On their website, the Cancer League of Eastern Switzerland Krebsliga Ostschweiz encourages mammography screening, giving many figures (like the number of women and men who have breast cancer) but none about benefits and harms.  The Ministry of Social Affairs, Health, Integration, and Consumer Protection in Brandenburg Webseite again advises early detection on its website. It reports many figures, such as the average age at which women are diagnosed, but none that allows an informed decision - quite different from that in the fact box. Among other things, the company health insurer HMR advises self-testing of the breast by palpation, without mentioning that studies show that this does not reduce breast cancer mortality but can raise false alarms and unnecessary fears. The website also recommends mammography, again without information about benefits and harms.

Early detection is also mislabeled as "prevention," - which is widespread and one of the reasons why many people think that mammography prevents cancer. Vaccination is prevention and prevents diseases; early detection, on the other hand, means that an already existing disease is detected. On the rest of the web pages, it went on like this - entirely without information about benefits and harms, but with celebrities, pink ribbons, teddy bears, and flamingos.

Since different users get different results on the first page of a Google search, you should try it yourself. However, most of us find reliable information only on the later pages, and about 90 percent of all clicks reach the first page only.

In 2021, "Breast Cancer Awareness Month" still fails to provide balanced information

In October 2014, we had already reported on Breast Cancer Awareness Month's commercialization and the missing or misleading figures on benefits and harms. In October 2021, it's the same. In a society where people argue about gender stereotypes, at the same time, they tolerate the practice of withholding the scientific results about early detection from women. Women and women's organizations should be the ones to tear the pink ribbons and not tolerate this finally. Every woman should make her own informed decisions instead of being emotionally controlled by teddy bears and commercial interests.

Your contact for more information:

Prof. Dr. Gerd Gigerenzer Tel.: (030) 805 88 519

Sabine Weiler (Communications RWI), Tel.: (0201) 8149-213, sabine.weiler@rwi-essen.de 

Unstatistics author Katharina Schüller is also a co-initiator of the "Data Literacy Charter," which promotes comprehensive data literacy education. The charter is available at www.data-literacy-charta.de.

RWI - Leibniz Institute for Economic Research

https://en.rwi-essen.de/das-rwi/

RWI - Leibniz Institute for Economic Research (formerly Rheinisch-Westfälisches Institut für Wirtschaftsforschung) is a leading centre for economic research and evidence-based policy advice in Germany. 

Harding Center for Risk Literacy

https://hardingcenter.de/en/the-harding-center/about

University of Potsdam-Faculty of Health Sciences

„Our aim is to study how people behave in risk situations. We believe that our work can contribute towards the ideal of a society that knows how to calculate risks and live with them." 
Gerd Gigerenzer, Director

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.

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INCa still outrageously dishonest and unethical

15th of October, 2021 

https://www.e-cancer.fr/Expertises-et-publications/Catalogue-des-publications/DEPLIANT-Depistage-des-cancers-du-sein.-Guide-pratique

In June 2021, the French National Cancer Institute (INCa) issued a new leaflet, in addition to the brochure published in 2017, sent to women one time for their first screening appointment at the age of 50. This new leaflet will be distributed to all women for the following appointments, beginning at the age of 52. 

here: PDF of the leaflet

 REMINDER: 

1) The 2015 citizen and scientific consultation [1] allowed for the expression of two scenarios: "Scenario 1: Termination of the organized screening program..."; "Scenario 2: Discontinuation of organized screening as it exists today [2],..." and the claim for women concerned by breast cancer screening to have "balanced and complete information." [3]

2) It took two years for the French National Cancer Institute to publish in 2017 a very insufficient brochure [4], barely mentioning the harms of screening (pain during the examination, overdiagnosis, etc.) but not detailing them, focusing mainly on the very meager benefits, which are advantageously put forward.

3) In an international study, INCa's lack of objective information and manipulative nature were questioned [5], as was already the case for the citizen and scientific consultation report.

Today, six years after the citizen consultation, INCa persists and signs.

The proof is this new leaflet, which will be included in future biennial invitations sent to women aged 52 and over.

Analysis

The poor informative content of this leaflet allows a rapid analysis: NONE of the adverse effects of screening are mentioned. 

Instead, it states:

"This early detection increases the chances of a cure: it allows 99 out of 100 women to be alive 5 years after diagnosis."

CAUTION: Being alive 5 years after a diagnosis does not imply that you have been "cured." 
What about this generously promoted survival? 
First and foremost, it would be more accurate to present the 5-year survival rates of 100 women who were screened and 100 who were not screened.

Here's an insightful article that explains what survival means and why it isn't a reliable indicator of screening effectiveness https://formindep.fr/cancer-des-chiffres-et-des-hommes/

This is what survival means:

 "Survival" measures the length of time the cancer is present or the length of time a patient lives with cancer, but it does not measure the longevity or life expectancy. 
Screening creates an optical illusion by anticipating the date of cancer onset by detecting it before any symptoms appear. While the result is the same, i.e., death regardless of the time of diagnosis, this creates the impression that the patient's life is being prolonged. In reality, screening does not affect t women's longevity; it simply shifts the "window of observation" in the disease's history.

A diagram from the WHO screening guide, page 47, illustrates this lead-time bias [6] :

Or in this diagram: [7]

"Lead-time bias occurs when screening finds cancer earlier than that cancer would have been diagnosed because of symptoms, but the earlier diagnosis does nothing to change the course of the disease" (National Institute of Cancer (NIH) USA).

To illustrate the situation differently, let's use an analogy: a train heading for Paris derails in Orleans at 3 p.m., causing the death of all passengers. If I boarded at Tours, I would have a survival of 30 minutes; if I boarded at Bordeaux, I would survive 2 hours. Artificially, we can say that people who boarded at Bordeaux have longer survival than those who boarded at Tours, even though they did the same thing: boarding the train at a given moment.

Thus, the extension of survival is the result of two phenomena: the efficacy of treatments that would extend the life of a cancer patient and the anticipation and detection of several lesions that would not have caused the death anyway. Nonetheless, not all over-diagnosed women die! As a result, there is an illusion of success in the case of breast cancer because we are diagnosing numerous lesions that would never have caused the death...

"Survival" is a poor indicator because it is used to describe something that it cannot: the effectiveness of screening.

The only indicators of the effectiveness of screening are the decrease in mortality and the reduction of advanced cancers. However, it is not enough to say: "THE EARLIER A BREAST CANCER IS SCREENED, THE GREATER THE CHANCES OF CURE," it is necessary to prove with data and the INCa, carefully omits this point in the leaflet...

Why is this leaflet outrageously dishonest and unethical?

1. Again, French women are not receiving the critical neutral information to which women in other countries are entitled. This is a serious breach of ethics.  Women citizens were indeed asking for easy-to-understand decision aids (pictograms). [8]

2. The information on the risks of screening is not directly available. The word "risk" is never even mentioned, which is a deceitful way to make this information as inaccessible as possible.

Indeed, we can read on one of the leaflet's pages, "To learn more, talk to your doctor or go to "cancersdusein.e-cancer.fr." 

If the woman invited to the screening wants to know the unfavorable effects, she must go to this website [9] and look for the section(s) dealing with these adverse effects herself. 

Overdiagnosis is never mentioned as a title on this website's home page; the risks of screening can be found by clicking on the inserts "the benefits and limits of screening" and "breast cancer screening, risk 0 or not?"

The word "limits" is misleading and not appropriate. In its French version of the guide, the WHO uses the term "effets nocifs" (in English: harms) of screening, which weighs against the benefits. [10]. 

For a woman to say that screening has limitations means that screening is not completely effective and that there are probably cancers that are missed. But this term does not imply that screening has risks.

3. Addressing citizens' requests does not mean that INCa can disseminate deliberately truncated, false, misleading, and incomplete information, embellishing the benefits and concealing the risks at the same time as the letter of invitation. This is yet another example of disregard for women who will never have access to the truthful information to which they are entitled.

4. This process, which is repeated every two years, is, of course, a strong incentive because of its repetition.

5. The initial brochure was incomplete and has not been modified since 2018 despite its shortcomings [4]. But at least it addressed the possibility of overdiagnosis. The 2017 brochure is aimed at women aged 50 who are invited to perform breast cancer screening for the first time. It is only sent for the first screening, so women who turned 50 before 2017, now aged 55 or older, have never received it and will have to rely on this misleading and incomplete leaflet issued in 2021.

6. This new leaflet is supposedly "based" on the 2017 brochure, misleading, as overdiagnosis is never mentioned.

7. The new leaflet says: "to know more, talk to your doctor or go to the website...". The general practitioner can certainly be contacted, but in reality, the woman makes an appointment directly with the radiology office, mainly because the information in the leaflet focuses all its communication on the benefits of screening, leaving the practitioner no opportunity to properly inform the patients before they go for mammography screening. In any case, what question would a woman ask her practitioner since the notion of "risk" does not appear anywhere in the brochure?

8. In the "key information" section, it is stated that mammography is "reliable." This information is again misleading since mammography exposes women to false positives (suspected cancers that are not confirmed) and false negatives (cancers that are hidden or develop between two mammograms and are, therefore, "missed" by screening).

Why is INCa so consistent in providing promotional information about mammography breast cancer screening? 

Why has INCa's biased promotional communication remained unchanged over the years? This is a question that everyone should ask.

Since the introduction of organized screening for breast cancer in 2004, scientific knowledge about mammography screening has advanced, but INCa's "communication" has not changed. INCa still presents screening as very beneficial to women, as it does in this leaflet, without mentioning what is debated in France and worldwide. The major benefit is still asserted even though it is increasingly being questioned.

Furthermore, many risks have been updated, but this brochure does not even use "risk," implying that they do not exist. The INCa replaces the term "risk" with "limit," which is never used in the scientific literature on the subject.

Why is this mode of communication being used? 

For all of its years, INCa has focused its communication on promoting breast cancer screening by mammography. This communication is very different from what is done in other countries. [8]

INCa's goal is not to correctly inform women about organized breast cancer screening by mammography but to intensify it to "win the European competition." And this is done blatantly, disregarding scientific knowledge on the subject. 

As proof: in its detailed report "Ten-year strategy 2021/2030 to fight cancer," we read INCa objectives on p20, "Achieve one million more screenings by 2025. It is up to us to exceed the coverage targets recommended at the European level in terms of screening and to join the leading group in terms of adherence (70% for the Organized Breast Cancer Screening ......., ". [11] 

The INCa appears to be only following orders from the authorities. On the other hand, citizens have the right to expect objective information from such a health authority rather than "propaganda." 

Why is it critical for citizens to have access to information that INCa does not provide?

INCa's role was defined at the time of its creation (article L1415-2 of the Public Health Code); it was given two contradictory missions: to inform (paragraph 3) and to promote screening (paragraph 6). 

"Informing" means providing unbiased information about the benefits and disadvantages of a public health system. "Promoting" means ensuring that the public is effectively influenced to adhere to it, which contradicts neutral information because it tends to conceal anything that dissuades people.

As a result, there is an irreconcilable incompatibility between these two missions, as well as a clear conflict of interest when, as with this unworthy leaflet, INCa can congratulate itself for responding to citizens' requests for information while ensuring that this information remains outrageously biased.

This is precisely what the INCa is doing with this brochure, which is akin to infantilizing women by maintaining them in ignorance, assuming their inability to make an independent choice.

According to a French publication, in order to increase screening participation, women who are called upon to undergo it should not be given information.[12]

Given this situation, doctors and patients will have to adapt and seek the information necessary for everyone to make informed decisions outside the communication of the French health authorities.

Example of a brochure

It is not surprising that this manipulative information comes from an institute that does not hesitate to label the scientific debate on screening as "Infox" or "Fake news." [13]

Our Cancer Rose collective began delivering more balanced information in a leaflet several years ago without any financial outlay. It is in A5 format, downloadable and foldable, and is intended for women and doctors to distribute to patients at the end of their consultation.

Our collective will make a point of informing the leaders of the INCa's International Scientific Council. We will notify international actors and groups fighting in many countries for women to be recognized as intelligent beings deserving of information to ensure their choices and autonomy in health matters within the framework of informed consent.

References

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

[2] page 132-133 du rapport https://cancer-rose.fr/wp-content/uploads/2019/07/depistage-cancer-sein-rapport-concertation-sept-2016.pdf

Two scenarios proposed, both contain the words "stopping screening".

[3] page 128 du rapport https://cancer-rose.fr/wp-content/uploads/2019/07/depistage-cancer-sein-rapport-concertation-sept-2016.pdf

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

[5] https://cancer-rose.fr/en/2021/04/20/methods-of-influencing-the-public-to-attend-screenings/

[6] https://apps.who.int/iris/handle/10665/330852?locale-attribute=en&

[7] https://www.cancer.gov/about-cancer/screening/research/what-screening-statistics-mean 

[8] https://cancer-rose.fr/en/2021/06/28/other-information-tools/

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

[10] https://apps.who.int/iris/handle/10665/330852

[11] https://solidarites-sante.gouv.fr/IMG/pdf/feuille_de_route_-_strategie_decennale_de_lutte_contre_les_cancers.pdf

[12] https://cancer-rose.fr/en/2021/01/24/objective-information-and-less-acceptance-of-screening-by-women/

[13] https://cancer-rose.fr/en/2021/07/13/the-national-institute-of-cancer-in-france-inca-relegates-the-question-of-the-benefit-risk-of-organized-breast-cancer-screening-to-the-fake-news-rubric/

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.

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Mrs. PL, 22 years of shared life with breast cancer, or the fight from a fierce “NO” to a half-hearted “YES.”

Testimony from the practice of Dr. M. Granger, Senologist, October 2, 2021

February 1999: Mrs. PL, 58 years old, consulted for a nodule in her right breast, which had existed for two years, but which had recently undergone an inflammatory change. Clinically this nodule is typically a sebaceous cyst located on her right breast.

However, the mammogram showed, in addition to an oval subcutaneous opacity very well limited and in agreement with the clinical diagnosis, a cluster of punctiform and dusty calcifications, at a distance from this nodule, distributed in half a dozen small foci with numerous tight elements, without densification or associated architectural distortion. The conclusion of this first encounter, for a benign pattern, is the probable presence of a "right retro-mammary intraductal carcinoma, a histology is necessary."

As this lady was followed by a homeopathic doctor who was very close to his patients, no instructions for treatment were given, except for the conclusion reported above. Without any news during the following months, I wrote to my colleague: Mrs. PL was indeed undergone surgery, and the answer was "positive."

Having obtained the operative and histological reports, I learned that it was a 6 mm infiltrating ductal carcinoma, with more than 2 mm clean surgical margins. The peripheral intra-ductal contingent had fine regular calcifications, and it comes into contact with the limits of the excision. The second stage dissection (no initial extemporaneous examination, as this was a simple surgical biopsy of micro-calcifications [we were in 1999]), associated with the resection of the tumor bed, showed: no tumor residue and a negative dissection of the 3 layers (0/15).

September 1999: first postoperative follow-up at 6 months. This examination was satisfactory, with a trivial area of steatonecrosis at the surgical site. A new appointment is given at 6 months, classical surveillance.

June 2000: follow-up 14 months after the initial surgery.

Mrs. PL stated that she had not consulted an oncologist. She was afraid of radiation and would not do it, advised by her homeopathic doctor, who considered it useless to do radiation "for nothing" as the results of the tumour bed resection and curage were normal.

Mrs. PL will then scrupulously return, every year in June, for 12 years. In 2011, she informed me that she was getting divorced. The following year the imaging was transformed: a micro opacity, not significant until then, doubled in volume, appeared spiculated, and measured 6 mm on ultrasound. Same breast, close to the initial bed. The cytopunction immediately shows a cellular mass characteristic of carcinoma, and it is, therefore, a recurrence in situ. Reoperation is necessary.

July 2012: Mrs. PL chooses not to see her initial surgeon again and to consult a Parisian celebrity. The surgery performed in July 2012 will be limited to a "large quadrantectomy," as the patient refused the recommended mastectomy. Despite this, the histology of the surgical specimen is... negative: the pathologist did not find any tumor proliferation.

October 2012: when Mrs. PL comes back for a new postoperative check-up at 3 months, I discover this "discrepancy": I question - Mrs. PL also finds out, and I end up choking... Because I have absolute faith in my puncture method and the accurate reading of my cytopathologist, trained at the Zajdela school of the Curie Institute: where is the error? The MRI will show the persistence of an intense and early enhancement corresponding to the sought-after lesion. My ultrasound found the mitotic gap, unchanged, of 6 mm. The conclusion is evident with a sigh: the lesion has remained in place.

November 2012: the patient is then reoperated in the same Parisian clinic: "right hemi-mastectomy," taking away the spotting hook. One could see in this hemi-mastectomy either a certain " broadness " of the surgeon, perhaps embarrassed by this involuntary reoperation, or a poorly mastered spotting technique? What is certain is that the histological analysis still does not show the tumour lesion but rather ordinary inflammatory changes. This recurrent discordance still does not raise any metaphysical question.

April 2013: new control examination, difficult. The breast is disfigured, the scar is stuck after a very large postoperative hematoma. Doubt about the persistence of the initial anomaly, still at the union of the external quadrants of the right breast. A new MRI will, however, come back normal. OUF, the tribulations of this cancer seem to be over (?), but with the bitter taste of not having understood everything: where did this 6 mm tumor disappear?

October 2013: six months later, Mrs. PL reveals that she is being followed in Belgium and taking 2LC1-N to support her immunity. She will, however, accept my regular follow-up.

May 2016: I see her regularly, every year now. In May 2016, she reported a small intradermal granule at the union of the external quadrants of the right breast, thus always in the exact localization. The cytology is... stubbornly malignant. This time, a bit tired of all these missteps, I explain loud and clear that the choices made have not solved the problem and that it would be appropriate to do a "real" mastectomy associated with a radiotherapy of the chest wall. This opinion is confirmed by the Faculty (University Hospital of P...). However, Mrs. PL continues to refuse both the micro biopsy and the mastectomy.

September 2016: under pressure from another university hospital (T...), Mrs. PL will accept the biopsy removal of her nodule: the carcinoma is this time infiltrating ductal carcinoma is well stamped, the hormone receptors are strongly positive. A mastectomy was scheduled: it was refused, as was hormone therapy. As well as radiotherapy, once again.

March 2017: the nodule will recur again, after its localized removal, at the same place... A new puncture (malignant) will finally convince the patient... A simple mastectomy, without radiotherapy, will eventually be performed in May 2017, that is to say, 18 years after the first lumpectomy, and three "conservative" operations which had already largely damaged the breast...

October 2020: three and a half years later. After this (final?) episode, Mrs. PL is doing well; she is now 80 years old, she remains a gentle and pleasant person. She is getting used to her mastectomy scar. She never had a word of doubt about her Parisian surgeon or pathologist, nor about the successive disfigurements that were imposed on her.

This observation has several salient points, to say the least: what can we learn from it for the Defense and Illustration of Senology?

1- How can we respond to this homeopathic colleague who wonders about the interest of radiotherapy "for nothing"?

First of all: that there is no "nothing" since his patient has invasive cancer, certainly not very locally developed, at least in appearance. But can one know in advance and with certainty the evolutionary potential of cancer? History has proven its high potential for recurrence.

Secondly, the fact that the surgical margins were healthy at the initial surgery was undoubtedly good news. Still, it did not in any way prejudge the biological reality, which was inaccessible to the pathologist. The notion of the carcinogenesis field confronts us with this obvious fact: in 2021, we still cannot know the biological boundaries of a carcinogenesis process. Surgery is, therefore, necessarily approximate.

In the context of conservative treatment, radiotherapy is the preferred weapon to drastically reduce the incidence of local recurrence, which would otherwise be almost systematic. In summary: conservative surgical treatment should necessarily be associated with adjuvant radiotherapy.

Finally, we must agree with this colleague that the patients of a homeopathic doctor always have great "faith" in the method and that his doubts have fed, knowingly or unknowingly, the phobia of the X-ray of Mrs. PL.

2- Like everything else, this history must follow a logical pattern: if a diagnosis of malignant recurrence has been made and the histology of the operative specimen is normal, there is a contradiction and, therefore, an error somewhere, which must be resolved. This error can be the initial diagnosis (false positive of one of the techniques used...), the operative methodology (location of the area to be biopsied, topography/extent of the sample...), or the histological analysis itself (identification difficulties, number of slices taken... [cuts every 5 mm may miss the smallest tumors]).

Unfortunately, this investigation was not done after the first recurrence... This case was not the judiciary, so we will not know the end of the story.

A word about the initial diagnosis: it did not include a micro biopsy which, as we know, has become the grail of oncologists, because the patient refuses it. However, it must be admitted that fine-needle aspiration, a straightforward technique, usually provides very rich and unambiguous cytology for a trained cytopathologist. I do not know of any false positives in my experience. In this story, all the cytologies were characteristic, and the final diagnosis proved them correct. So it was not the initial diagnosis that was wrong.

3- The constant attitude of Mrs. PL questions us, the physicians, on the level of risk we place on our patients. A very anxious and/or very enterprising radiologist, who wishes to macrobiopsy the slightest grouping of microcalcifications (without waiting for the test of minimal surveillance, which would make it possible to judge their change), and Mrs. PL, who waited until the 4th local recurrence to be persuaded, merely to undertake the recommended treatment, are living in radically opposed and incompatible medical worlds.

4- It did come to your attention that Mrs. PL's first recurrence appeared the year after her divorce. In contrast, the first 12 years of her follow-up had gone smoothly, despite an incomplete initial treatment, radiotherapy having been rejected. Once again, cancer is shown in its true light, that of a psycho-somatic disease, the psyche being most often the initiator/accelerator of this process.

Cancer Rose Commentary

We would add another lesson from this observation, and that is "the lesson of humility."

Women are often made to feel the urgency of the situation as soon as a cancerous lesion is diagnosed as if every minute counts. Everyone is running, busy, panicking; we must act, react, operate as quickly as possible! However, in this case, the patient has been living with cancer for years, and she has reached the age of 80 without losing her life!

So it's never too late to do the right thing; it's never too late to treat and cure.

So, where is the urgency in which we propel the diagnosed women? If the cancer is metastatic, it is so immediately; in most cases, it is clear that there is no need to panic women as we do, and we are not a minute away. Yes, we can sometimes give ourselves time for surveillance (the ACR3 classifications (simple surveillance) have almost disappeared; in our emergency, we immediately consider taking samples and performing interventions).

Yes, we must treat, of course, but without panicking! Cancer does not metastasize in 5 minutes (unless it has already done so, and in that case, we are a step behind); it does not kill on the spot; we are not going to die tomorrow!

This case shows us the humility that the medical profession should have and shows us that it is necessary to leave the 'panic' and the 'emergency' that we inflict on women when we find them cancer, giving them the impression of imminent death, but that we are going to save their life because we have been quick.

The fate of the patients is not in our hands as great "saviors." It is never "too late" to treat and heal.

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.

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Health screening needs independent regular re-evaluation

October 2, 2021, Dr. C. Bour

BMJ 2021 ; 374 doi : https://doi.org/10.1136/bmj.n2049 (Publié le 27 septembre 2021)
https://www.bmj.com/content/374/bmj.n2049

Authors:

Fabienne G Ropers, consultant, Department of General Paediatrics, Willem Alexander Children's Hospital, Leiden University Medical Center, Leiden, Netherlands Alexandra Barratt, professor, Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia

Timothy J Wilt, professor, Minneapolis VA Center for Care Delivery and Outcomes Research and the University of Minnesota, Minneapolis, MN, USA

Stuart G Nicholls, researcher, Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Canada

Sian Taylor-Phillips, professor, Warwick Medical School, Coventry, UK

Barnett S Kramer, consultant, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, USA

Laura J Esserman, professor, Helen Diller Family Comprehensive Cancer Center, University of California San Francisco, San Francisco, CA, USA

Susan L Norris, doctor, Oregon Health and Science University, Portland, OR, USA

Lorna M Gibson, consultant, Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK

Russell P Harris, emeritus professor, School of Medicine, University of North Carolina at Chapel Hill, NC, USA

Stacy M Carter, director, Australian Centre for Health Engagement, Evidence and Values, University of Wollongong, Wollongong, NSW, Australia Gemma Jacklyn, consultant, Sydney School of Public Health, University of Sydney, Sydney, New South Wales, Australia

Karsten Juhl Jørgensen, chief physician, Centre for Evidence-Based Medicine Odense (CEBMO) and Cochrane Denmark, Department of Clinical Research, University of Southern Denmark, Odense, Denmark 

According to the authors (researchers, medical professors, physicians, etc.), new circumstances that differ from the initial context in which screening programs were implemented may alter the benefit and risk profile of screening programmes

From the early beginnings of screening, intended to detect disease or risk factors before symptoms appeared, there is evidence that screening delivers health benefits but also harms and costs. It is important to note that these outcomes are not constants: they change with new evidence, vary between contexts, and over time.

Screening practices (whether organised as programmes or not) tend to be slow to react to these changes; alterations are often resisted and controversial.

According to the authors, reasons for resistance to change in established and entrenched programs include both financial interests (of individuals, groups, or lobbies with a vested interest in continued screening), attention to sunk costs,[1] and lack of evidence of high certainty or proper evaluation of existing evidence. But there is also a problematic belief that early detection is always better, and simply inertia or preference for the status quo. 

Screening programmes are often financed within finite collective healthcare budgets. They target asymptomatic people, most of whom are not those who need healthcare most. 

Therefore, continuing screening in the face of changing circumstances deserves careful consideration, as it potentially leads to harm to healthy citizens and wastes scarce resources.

While there are well-established principles for starting screening, none exist for stopping it.

As experts who have worked on screening over many years, the authors see an urgent need for clear, agreed methods for actively re-evaluating existing practices.

Why screening practices need re-evaluation

The value of screening may be changed by several factors, including changes in disease incidence, advances in diagnosis and treatment, evidence from ongoing programmes, and preventive possibilities.

For example, in some cases, so-called primary prevention, i.e., prevention before the disease occurs, may decrease disease incidence and thus the absolute benefit from screening.

New data showing that therapeutic advances contribute more than screening to the reduction of mortality by the disease are, of course, essential.

In the context of breast cancer

This article is, of course, "up to date" at the dawn of the pink October wave. Since the year 2000, early whistleblowers, epidemiologists, for the most part, have been warning about the harmful effects of breast cancer screening, of which it is imperative to inform women.

According to several reviews, the adverse effects prevail when the harmful effects attributable to screening and overtreatment are included in calculating mortality and morbidity[2].

In all cases, and according to independent evaluations, the benefit of screening is always minimal compared to the added harms it exposes. As a result, several countries have decided to inform women through decision support tools [3]. At the same time, the French communication relentlessly continues its promotion in the media with untruths, as in the magazine Dr. Good where we also learn that mammography delivers UV [4]...

Or in the show 'Envoyé Spécial' where "awareness" of screening seems to be a major concern rather than objective information.

John Horgan, an American science journalist, wrote an excellent summary of the enormous gap between reality and the almost industrial promotion of screenings and certain treatments based on distortions of scientific data.[5]

We are now well aware of the problems of over-diagnosis[6] and over-treatment that screening at any cost leads to, in the face of a non-significant reduction in mortality[7], particularly for breast cancer. It is becoming urgent to consider this modern knowledge when questioning the relevance of low-contribution screening such as that for breast cancer.

Reactions to BMJ article

1° Reaction of Pr.M.Baum

Michael Baum

Professor emeritus of surgery and visiting professor of medical humanities UCL-London

He comments:

"Their mantra, "catch it early and save a life" has led to the wastage of huge human and technical resources, delayed the introduction of more valuable public health initiatives, and harmed countless asymptomatic individuals by over-diagnosis and over-treatment. As the ultimate reductio ad absurdum, there has been a very high profile of a screening programme using liquid biopsies to identify 30 different cancers in the last week. (see this link; https://www.annalsofoncology.org/article/S0923-7534(21)02046-9/fulltext ). It reaches the point of farce when they claim the highest sensitivity for metastatic cancers with unknown primaries. I hate to think how much damage was done to the patient in the frantic research for the primary. I would humbly suggest that the first agenda item for this new committee would be to nip this in the bud."

We talked about liquid biopsies, which quickly showed their limits in terms of screening. Indeed, finding a circulating cell does not make the individual a cancerous person in the future. What will we do with all these "findings" in people who complain of nothing and who will have to undergo heavy and repetitive complementary explorations to find something or nothing at all one day hypothetically? [8]

If applied to cancer screening in an asymptomatic population, these circulating tumor DNA tests will have the same problems of sensitivity and specificity as traditional biomarkers, in addition to their high cost and complexity.

2. Reaction of Dr. Shyan Goh

Orthopaedic Surgeon-Sydney, Australia

Dr. Goh cites the WHO document, a guide on screening programs that we also present in our webpages [9], which can be downloaded in French for interested readers [10].

This paper on population-based screening, Dr. Goh explains, is full of examples of how a screening idea does not necessarily work the same way in an international setting.
One important premise of population-based screening is that "the benefits of screening outweigh the potential harms."

The question here is, says the author, what are the "potential harms" of screening?

Many clinicians advocate various screening programmes based on the focus upon potential harms caused by the disease being screened, often in the form of mortality rates from the disease.

Others and much of the public looked at overall mortality and morbidities of the screening programme, including deaths from the diseases as well as of other causes including complications of screening (e.g., biopsy for mammography screening in case of false alarm, Editor's note)

Conclusion

We conclude with Dr. Goh's pertinent question: which viewpoint is more important, that of the clinicians focused on the search for more and more cases, or that of the public more interested in overall mortality and morbidity, the one that also captures the harms of screening?

In 2021, after several decades of errors and controversies, the current data no longer show the superiority of the breast cancer screening program.

When, but when, and after how many infantilizing pink campaigns will the public authorities and health authorities finally find the courage, with the support of the media, to inform women?

References

[1] In behavioral economics, sunk costs are costs that have already been paid definitively; they are neither refundable nor recoverable in any other way.

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

[3] https://cancer-rose.fr/en/2021/06/28/other-information-tools/

[4] http://link.mag.nl.drgoodletter.com/m/view/200101/501233/kztFMyVWSJxvreVukpVatg==

Interview with Dr. Pierre-Yves Pierga "Finally, regarding exposure to UV rays, if we add up all the mammograms performed in a lifetime as part of the screening, it represents less than a CT scan. So the exposure remains reduced."

We have pointed out the error to the editors; it is indeed X-rays.

[5] https://cancer-rose.fr/en/2020/12/14/the-cancer-business/

[6] https://cancer-rose.fr/en/2020/11/30/what-is-overdiagnosis/

[7] https://cancer-rose.fr/en/2020/11/30/what-is-an-effective-screening/

[8] https://cancer-rose.fr/en/2021/04/22/media-coverage-of-screenings/

[9] https://cancer-rose.fr/en/2021/06/28/other-information-tools/

The WHO guide is the third decision support tool in the article, from the top[10]https://www.euro.who.int/en/publications/abstracts/screening-programmes-a-short-guide.-increase-effectiveness,-maximize-benefits-and-minimize-harm-2020

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.

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Screening campaigns: a move toward greater caution?

Analysis by

Sophie, referent patient,
Dr. M.Gourmelon,
Dr. C.Bour

September 2, 2021

We may be witnessing a shift in certain countries and the World Health Organization's standpoint on breast cancer screening campaigns. The example is given by Ukraine, which opts, with the help of the WHO, for an "early diagnosis" programme for breast cancer control plan rather than classical screening.

This more cost-effective policy is discussed in the following article “Better than screening: with WHO’s help Ukraine chose a cost-efficient policy to prevent breast cancer” https://www.euro.who.int/en/countries/ukraine/news/news/2021/3/better-than-screening-with-whos-help-ukraine-chose-a-cost-efficient-policy-to-prevent-breast-cancer

According to the WHO: « Given the major improvements in breast cancer treatment in the past decades, in cases when breast cancer is diagnosed at early palpable stage, the rates of secure cure are very high.”

Thus, an early and rapid diagnosis procedure for women with symptoms would be preferred rather than a mass screening that would indiscriminately target the entire healthy women population [1].

According to the WHO, this is an "inspiring story" about searching for the best way of fighting breast cancer. The WHO recognizes the effectiveness of this new approach and suggests taking it as an example as it will save thousands of lives and millions of euros in loans in Ukraine.

The concept of "early diagnosis”

But what does this "early diagnosis", put forward by the WHO, mean?

Early diagnosis is based on the rapid identification of cancer in patients who present symptoms of the disease to offer them a complete and rapid diagnostic follow-up.
In low-resource countries such as Ukraine, the problem is that symptomatic women, who already have a breast cancer symptom and do not seek medical attention early enough, present too late for care.
France was ready to lend Ukraine $24 million to equip it with mammography equipment for a screening program. Still, with WHO support, Ukraine chose a less expensive and more prudent strategy, claiming that the country already had enough mammography equipment to launch an effective early breast cancer diagnosis program.

A detailed explanation of this concept is given in the following document: https://apps.who.int/iris/bitstream/handle/10665/254500/9789241511940-eng.pdf?sequence=1, starting on page 8.

To summarize, the two procedures that are being weighed up here are as follows:

- early diagnosis, only for patients with symptoms  

- systematic screening: applied to the entire healthy population

According to the document:

“After consultation with WHO/Europe experts, Ukraine’s authorities became interested in another WHO-recommended cancer prevention strategy – the early diagnosis programme. It is based on the rapid identification of cancer in patients who have symptoms of the disease and rapid full diagnosis follow-up. Given the major improvements in breast cancer treatment in the past decades, in cases when breast cancer is diagnosed at early palpable stage, the rates of secure cure are very high.”

“In comparison to mammography screening programme, centralization of advanced centers providing high-quality early diagnosis of breast cancer is more efficient, economical and sustainable in a setting with limited resources,” said Dr Olga Trusova, a leading Belarusian mammography expert who took part in the BELMED project aimed at implementation of breast cancer screening in Belarus. BELMED was funded by the EU and implemented by WHO/Europe and IARC since 2016.

These quotes are meaningful because they implicitly acknowledge that screening:

1. carries risks that are inflicted on healthy populations,

2. has not been as successful as expected,

3. is very costly compared to the expected population benefits, and

4. once a disease is treated with significant efficacy in symptomatic forms, screening becomes obsolete. This is precisely one of the observations made by P. Autier, professor of epidemiology at IPRI: the ability to reduce breast cancer mortality attributable to treatment makes the ability to screen even more negligible and non-existent, and more women would have to be screened to achieve the number of deaths avoided that would be truly attributable to screening, with all the concomitant over-diagnosis and false alarms.
https://cancer-rose.fr/en/2020/12/17/mammography-screening-a-major-issue-in-medicine/
The more effective the treatments, the less likely screening will be useful.

Screening would be limited to cancers for which it appears to be effective, such as cervical cancer. “Early detection" seems to be a less expensive option with less negative impact for certain cancers, such as breast cancer. Early detection is effective for cancers that can be identified in early stages and cured with immediate treatment; this is true for breast cancer.

The WHO technical consultation on screening

To understand this shift toward a more measured and reasoned approach, we must go back a bit to the time of the WHO's technical consultation on screening for countries in the European region, which was held in Copenhagen in 2019:

https://www.euro.who.int/__data/assets/pdf_file/0017/408005/WHO-European-Technical-Consultation-on-Screening.pdf

The goal of this consultation, namely to limit the harmful effects of screening on the population, inconveniences that are frequently ignored and underestimated by the population, is clearly stated from the start:

“In recent years, countries in the WHO European Region have been introducing new screening programmes for conditions and health checks along the life-course. However, policy-makers, health professionals, and the public are not adequately aware of the potential harms of screening as well as the costs and requirements of implementing an effective screening programme. With this in mind, the WHO Regional Office for Europe held a Technical Consultation inCopenhagen on 26–27 February 2019 aimed at clarifying the harms and benefits of screening in the light of recent scientific evidence and countries’ experience. This Consultation constituted the first step in an initiative by the Regional Office to improve policy decision-making for screening. It was attended by 55 experts from 16 countries, including academics and observers from nongovernmental organizations.”

At the end of 2020, the WHO published the screening guide; concerning breast cancer in particular (page 38), the guide points out the harmful issues of screening (overdiagnosis and false alarms) and emphasizes informed information, an intangible ethical principle, before inciting populations to screening.
https://www.euro.who.int/fr/publications/abstracts/screening-programmes-a-short-guide.-increase-effectiveness,-maximize-benefits-and-minimize-harm-2020

In this logic, the WHO titles in March 2021:
“Better than screening: with WHO’s help Ukraine chose a cost-efficient policy to prevent breast cancer.”

Early diagnosis, why not in France?

Often the question is asked: "But what to do instead of the current screening?"

It is now recognized that mass screening causes more harms than benefits, it does not reduce mortality substantially and induces many overdiagnoses with their consequences of over-treatment, and leads to unnecessary illness. Although very much in favour of screening, the Marmot report alleges 3 overdiagnoses for a life lengthened by screening [2]. The Cochrane review mentions 10 overdiagnoses for one life saved [3].

In France, we have a sufficient number of mammography machines to be able to adopt this policy of early diagnosis, which is more respectful of women, while at the same time providing them with correct and neutral information on breast cancer and the means to fight it, as called for by the public consultation.

But, in practice, this is what we already know! In our country, women are generally vigilant about the health of their breasts; screened or not, women are made aware of breast cancer by the media and the medical profession, and they have the reflex to consult without delay when they perceive abnormal symptoms. Our health care system has vast economic and human resources and does not have the problems of under-resourcing that Ukraine and other European countries have. A symptomatic woman here receives prompt care and has all chances to be correctly treated and followed up.

Early diagnosis instead of costly mass screening procedures: an "inspiring story," says the WHO, an effective tool in the fight against cancer, allowing health resources to be allocated more appropriately.

So, instead of blindly and indiscriminately urging women to undergo routine screening in disregard of balanced information, a screening that is more likely to expose them to an unnecessary disease than to save lives, why don't we make this inspiring story our own?

Is there a necessity for mistrust?

« The early diagnosis approach for breast cancer was recognized as more appropriate for Ukraine than mammography screening. It is less resource-intensive and allows Ukrainian health system to better prepare for future screening measures if needed.”

This line from the first document we mentioned at the start of the post makes us wonder...

We must ensure that the concept of "early diagnosis" is not misused and that it does not serve as a "foot in the door" for pro-heavy imaging and pro-testing lobbies to rush into larger ambitions and to deploy insatiable appetites toward more and more medicine, directed at more and more individuals, many of whom would not have needed it and will not benefit from it.

References

[1] As a reminder, a basic notion of knowing the difference between screening mammography and diagnostic mammography:

Screening mammography is the routine mammography that women are asked to have every two years from the age of 50, even in the absence of any symptoms.

Diagnostic mammography is the one that is motivated by the appearance of a sign, a symptom in the breast (swelling, retraction, deformation, etc.). This symptom then requires a mammography exploration to identify and diagnose the problem in the breast.

[2] Marmot M.G., et al. The benefits and harms of breast cancer screening: an independent review. Br J Cancer. 2013 Jun 11; 108(11): 2205–2240
https://pubmed.ncbi.nlm.nih.gov/23744281/

[3] https://www.cochrane.dk/sites/cochrane.dk/files/public/uploads/images/mammography/mammografi-fr.pdf

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


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

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Mammo or not mammo?

In August 2021, publishing of the book "Mammo or not mammo?" by Dr. Cécile Bour, Radiologist

  • A radiologist outlines the benefits and risks of screening mammography.
  • A guide based on questions asked by Dr. Bour's patients brings together information and decision-making tools based on objective scientific data.

The media, health insurance, and doctors make all women aware of the benefits of breast cancer screening... but how many are aware that having a mammogram every two years carries risks

Be informed before deciding

Indeed, there are numerous risks, beginning with the risk of overdiagnosis, which can result in unnecessary and distressing examinations and treatments. Other consequences that can be harmful to women's health should also be considered: false alarms, radiation exposure, treatment side effects,...

These risks are such that mammography screening is now the subject of a lively controversy in the scientific community. Women are kept out of this debate...

Because they were never given balanced data, some readers are likely to discover only now that the appropriateness of breast cancer screening is scientifically debatable.

Dr. Cécile Bour

In this benevolent book, the author rightly reminds us that the decision to undergo screening is a personal choice, which needs to be thought through.

My own experiences as a radiologist and discussions in the privacy of my consultations have made it clear that a woman's decision to attend or not screening cannot be made in a clear-cut manner but is the result of a process. As a matter of fairness and ethics, it is indeed necessary to properly inform every woman.

Dr. Cécile Bour

Objective information to help each woman make HER own choice

This book is for all women who have questions about breast cancer screening or consider screening on their own or their doctor's initiative. Based on patient questions, it provides the necessary information to aid each woman in better understanding the stakes of this screening, knowing its disadvantages, and discussing it with her doctor.

Among the questions addressed in the book:

"Is that all right? You'd have seen it if there was anything there, right?"

"You're sure you'll see everything if you get a mammogram, an ultrasound, or an MRI, right?" "There are ten women at my workplace. We all have screening mammograms because one of us will get it. I've heard it's one in every eight! Is that correct?"

"I read that the cure rate for breast cancer is 90%. Is this true?"

"The radiologist informed me that it was a very small cancer. Isn't it true that the earlier it's discovered, the better?"

 "Shouldn't mammograms be done earlier, before the age of 50?"

 "What is overdiagnosis?" "Is it really so bad to detect harmless cancers?"

The author

Cécile Bour is a Radiologist in the Metz region.

She is the president of the association Cancer Rose, which advocates for women to have access to independent and adequate information about breast cancer screening.

Download the press release (french)

Editor's website

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.