Respect patient preferences

Summary by Sophie, patient et C.Bour, MD

March 28, 2022

Patient Preferences for Outcomes Following DCIS Management Strategies: A Discrete Choice Experiment*

Chapman BM, Yang JC, Gonzalez JM, Havrilesky L, Reed SD, Hwang ES.

JCO Oncol Pract. 2021 Nov;17(11):e1639-e1648. doi: 10.1200/OP.20.00614. Epub 2021 Mar 12. PMID: 33710917.
https://ascopubs.org/doi/10.1200/OP.20.00614

*The Discrete Choice Method (DCM) analyzes consumer choices. Under specific behavioral hypotheses, it makes it possible to explain the trade-offs individuals make between the various attributes of a good or service.

Summary:

Ductal carcinoma in situ (DCIS) is more frequent as it is routinely screened; estimates indicate that 80% of DCIS are of good prognosis and do not threaten women's health. They thus contribute significantly to the overdiagnosis of breast cancer, i.e., needless diagnoses of lesions that, if they had not been found, would not have impacted either the health or the life of women.
But almost all DCIS are treated aggressively by surgery, often combined with radiotherapy and/or hormonal therapy, depending on the management guidelines in each country. In some countries, active surveillance is proposed; in others, like France, DCIS are treated with the same aggressiveness as "true" invasive cancers.

However, there are few studies on patients' preferences for treatment options.

Here the question asked is: What trade-offs are women willing to make between side effects of treatment for ductal carcinoma in situ (DCIS) and future risk of invasive cancer?

Main result: A majority of women (71%) were willing to accept a small increase in future risk of invasive cancer for treatment scenarios that offered a reduction in treatment-related side effects.

The results of this study underscore the importance of shared decision making, weighing risks and benefits, between the patient and the caregiver managing a low-risk condition.

Background

The term "overtreatment" has been used to characterize treatment for conditions that look like early cancer but are not destined to cause symptoms during a patient's lifetime or to be a cause of death. It has been estimated that as many as one in four patients with breast cancer detected by screening may be subject to overdiagnosis and overtreatment.
Much of this burden relates to treating ductal carcinoma in situ (DCIS or preinvasive breast cancer).
In fact, almost all CCIS are treated aggressively with surgery, radiotherapy, and/or endocrine therapy, especially in France.

The 10-year breast cancer–specific survival among women treated for DCIS is 98%-99%, implying that either current therapy is almost completely effective in eradicating breast cancer mortality or many women with DCIS would not have progressed to invasive breast cancer and thus were overtreated.

The exceptionally high breast cancer–specific survival across alternative treatment options has raised concern that in patients who have an indolent form of DCIS, treatment imposes harm without offering significant benefit.

An alternative to standard guidelines that has been proposed is the active surveillance (AS) approach, as is currently offered for many men with early prostate cancer and for women with other conditions considered high risk for breast cancer, such as atypical ductal hyperplasia, lobular carcinoma in situ, or a hereditary deleterious mutation. An AS strategy would entail close monitoring, with the aim of intervening only upon evidence of disease progression.

At the international level, four active prospective clinical trials are testing the safety and benefits of this approach: the LORD trial, which still includes patients.

(Read here: https://clinicaltrials.gov/ct2/show/NCT02492607
-Since February 2019, are also accepted CIS grade II, in addition to grade I
-Since July 2020, the randomized trial has been transformed into a patient preference trial: women have the choice of the trial arm (either surveillance or conventional treatment)
-Estrogen receptor and HER2 testing has been added before patients are enrolled in the trial to rule out high-grade lesions, to make the trials even safer
-There are now 28 sites open in the Netherlands, 6 in Belgium, including a francophone site opened in Brussels : https://www.chu-brugmann.be/fr/research/trials/trial.asp?num=82
15 sites will open in other countries, including France, to come!)

As awaiting the results of these trials, it is important to discern whether AS might be an acceptable option to some women if they were offered the opportunity to evaluate the benefits and harms of alternative management options.

In other words, would women accept other options such as AS instead of standard treatments if the benefit/risk balance was well explained to them?
To test this hypothesis, this study elicited patient preferences to quantify how women are willing to accept trade-offs among the possible management options for CCIS, including AS.

Discrete choice experiments, as in this case, are survey-based instruments used to obtain information about preferences for different aspects of goods and services of interest.
In a discrete choice experiment, participants are asked to choose between two or more experimentally designed scenarios that require trade-offs across the features (termed "attributes") of a good or a service; here, the management of DCIS; by analyzing participants' choices across questions, it is possible to estimate the relative importance of features on choices and how this orients the choices that persons then make.
In oncology scenarios, this may include trade-offs among the additional survival afforded by a proposed cancer treatment and the side effects, inconveniences, or costs associated with that treatment.

Methods

To better understand patient preferences, using a "discrete choice experiment," Hwang and coauthors recruited 194 healthy women in a screening mammography clinic.

Participants were provided with informational videos about the diagnosis and clinical significance of CCIS.
Then the women were asked to imagine that they had been diagnosed with CCIS and then choose between several management scenarios that included the option of aggressive treatments, less aggressive treatments, which also included the estimated risk of cancer and the side effects of treatments.
Different criteria were defined, such as breast appearance, severity of infection in the first year, chronic pain, hot flashes, and risk of developing or dying from breast cancer within 10 years, to create clinical pictures or "health profiles" for the different scenarios, for a more concrete representation for women depending on the choice they would make.

Results:

Not surprisingly, future risk of breast cancer and its attendant risk of mortality were the most important factors when women evaluated hypothetical management options.
However, the study found that over two-thirds of participants were willing to accept some increase in future breast cancer risk to reduce the extent of surgery or the severity and/or duration of treatment-related side effects.

In other words, a majority of women were willing to accept a small increase in a possible future risk of invasive cancer for treatment scenarios that offered reduced treatment side effects.

Conclusion and implication in real life :

This indicates that there is likely a subset of women who, when diagnosed with DCIS, would prioritize a reduction in side effect burden or extent of surgery over future breast cancer risk in certain contexts,  researchers concluded.

Most women were willing to make trade-offs between treatment-related effects and risk of invasive cancer, underscoring the need for shared decision making between patients and providers regarding treatment strategies for carcinoma in situ.

Although many discussions of management options for CCIS focus almost exclusively on future breast cancer risk and risk reduction, the results of this study confirm that women benefit if they are presented with detailed information about risks and treatment outcomes, allowing them to make a fully informed, personalized health decision.

The study confirms that treatment choice decisions for CCIS are highly sensitive to personal preferences, and that no a priori assumptions can be made about the trade-offs patients would be willing to consider when weighing the risks and side effects of treatment.

These complex considerations are fundamental to efforts to de-escalate treatments for low-risk conditions such as CCIS.

Advice for Oncologists, interview with principal author:

https://www.medpagetoday.com/reading-room/asco/breast-cancer/97547
By Jeff Minerd, MedPage Editor March 8, 2022

In an interview, the principal author provides advice to oncologists on how to discuss CCIS treatment options with patients in a thorough and balanced manner.
Shelley Hwang, MD, on Helping Patients Make DCIS Management Decisions/Excerpts

Ductal carcinoma in situ (DCIS) is common in the United States, but there are few studies of patient preferences for treatment options. Authors :
"Estimates indicate that only 30% of DCIS may progress to invasive cancer. Nevertheless, almost all DCIS is aggressively treated with surgery, often combined with radiation and/or endocrine therapy, according to guideline-concordant care."

To better understand patient preferences, using a "discrete choice experiment, "Hwang and co-authors recruited 194 women without breast cancer from a screening mammography clinic. The women were asked to imagine they had been diagnosed with DCIS and then asked to choose among several scenarios that included aggressive and less-aggressive forms of treatment, estimation of cancer risk, and side effects.
Not surprisingly, future risk of breast cancer and mortality were the most important factors when the women evaluated hypothetical management options. However, the study found that more than two-thirds of the participants were willing to accept some increase in future breast cancer risk to reduce the extent of surgery or the severity and/or duration of treatment-related side effects.

This indicates that there is likely a subset of women who, when diagnosed with DCIS, would prioritize a reduction in side effect burden or extent of surgery over future breast cancer risk in certain contexts," the researchers concluded.

In the following interview, Hwang elaborates on the details of the study and how to discuss treatment options with patients.

Do you have any advice for how oncologists can discuss treatment options for DCIS with patients in a thorough and balanced way?

Hwang: One key step is eliciting how much knowledge a patient has about her diagnosis and its implications. I think a surgical oncologist would tend to jump right in and say, it's a cancer, we need to remove it, these are the surgical options. That's always the easiest thing for us to do, but we sometimes neglect to spend time with the patient upfront talking about the diagnosis itself and what the clinical implications are.
And when you're dealing with a disease that has no immediate clinical or life-threatening implications, and specifically for DCIS when we don't even know if it will turn into cancer even if we don't intervene surgically, I think framing the diagnosis first and making sure the patient understands the implications of the diagnosis is important.

Your study used discrete choice experiments, which were first developed for market research. Can you briefly describe how these work?

Hwang: Discrete choice experiments have been used a lot in areas such as health economics to see how people make decisions and weigh pros and cons of all the different aspects of making that decision. So say you're about to buy a house, not only do you have to consider cost but also location, how many bedrooms it has --there are many different components that go into that decision.
It's never just one driver that makes an individual decide which house to buy. There are some very emotional aspects to that too. So a discrete choice experiment tries to come up with a set of attributes that are important for making a certain kind of decision.

In this case it was a diagnosis of DCIS and the decision about how to manage it. We tried to include attributes we thought would be meaningful for patients. So postoperative pain, for instance -- that's something people wonder about and are concerned about. We included different levels of pain in the experiment. Cosmesis and side effects of treatment are also important considerations. We created different scenarios where we mixed and matched these different attributes. We presented them to patients and asked them to choose which scenario most matched their preferences. That gave us an idea of what values patients considered most important when trying to make a decision about DCIS.

I think this is something that's becoming more and more relevant. Cancer screening detects precancers such as DCIS that have no immediate clinical implications. There are no symptoms, there are no mortality implications, there's just this concern, that we're trying to prevent cancers from occurring. And I think the better we are at screening, the more we're going to find ourselves in this position, not only with cancer but also with cardiac disease and metabolic diseases, where we diagnose a condition before the patient has any symptoms.

So I think balancing the pros and cons is a lot more relevant when you're not dealing with immediate life-threatening illnesses, and learning how to talk to patients about these scenarios will be an increasingly important skill.

Your study included women without an actual diagnosis of DCIS. Do you think this limits the generalizability of your results to the general DCIS population?

Hwang:That's a really good point. We didn't feel we could do this study with women who were diagnosed with DCIS, because we didn't know what information they would come in with already. If someone somewhere along the way said to them you have cancer and it needs to come out, that could certainly affect how they viewed their choices.
To do this discrete choice experiment, we needed a group of patients that didn't have a lot of other sources of information about the disease already.
...........

On the other hand, women in the study were coming in and presenting with an abnormality, or they were coming for a breast cancer screening, so they were  already thinking about what would happen if they did have a diagnosis. So we felt like it wasn't a stretch to use this population.

We as surgeons are taught to focus on cancer outcomes and mortality, and we should focus on those things. However, sometimes our training hasn't incorporated how to balance other things that patients care about and helping them apply these values to a treatment decision that's comfortable or preferable to them.

I've found that sometimes surgical oncologists, and oncologists in general, treat the cancer, but what we really need to do is holistically treat the patient along with the cancer. That's the take-home message of this study, underscoring how important it is to treat each person as a unique individual and someone who may not necessarily share the treating provider's belief system.

There is room in medicine to accommodate many differing views of risk and health.

For more information:

Surtraitement du CCIS du cancer du sein de stade 0

Perspective : Les risques de surdiagnostic - Nature

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.

A Modeling Study on Overdiagnosis

By the Cancer Rose Collective, March 12, 2022

https://www.acpjournals.org/doi/10.7326/M21-3577

According to a modeling study based on data from Breast Cancer Surveillance Consortium (BCSC), about one in six to seven screened breast cancer cases is overdiagnosed.

This study first highlights that overdiagnosis in breast cancer screening is real.

Results of study

An average of 15.4% (95% CI: 9.4%-26.5%) of screened cancer cases were estimated to be overdiagnosed, reports lead author Marc D. Ryser* of Duke University in Durham, North Carolina, and colleagues.

* Ryser: Marc Daniel Ryser, Assistant Professor of Population Health Sciences. Dr. Marc Ryser is an expert in mathematical and statistical modeling. His research uses biological, clinical, and population-level data to inform and guide the early detection and prevention of cancer.

Below are the results by age group and type of cancer detected (Figure 3 and Table 3).

Beyond the average values, we can observe (Fig 3) that for all age groups, the rate of overdiagnosis can reach maximum values higher than 20%, and according to Table 3, the rate of overdiagnosis at the first screening reaches a maximum value of 28%, at 58 years 21.1%, at 66 years 25.4% and at 74 years 31.9%

In this model study, an interesting finding is that the rate of overdiagnosis increased with age and almost doubled depending on the age range analyzed: 11.5% (95% CI, 3.8%-28.3%) at the first screening at age 50 to 23.6% (95% CI, 17.7%-31.9%) at the last test at age 74.

Comparison with previous data

The authors note, "comparison of our estimates against those from other studies is not straightforward because of differences in overdiagnosis definitions and screening practices."

They conclude that their results regarding overdiagnosis are both higher than previous modeling studies (ranging from 1% to 12%, depending on the studies cited in the article) because of differences in screening practices, diagnostic practices, and modeling assumptions, but lower than other studies that have shown rates much higher than the average in this study.
For example, the Canadian screening trial estimated an overdiagnosis rate of 30% (Baines CJ, To T, Miller AB. Revised estimates of overdiagnosis from the Canadian National Breast Screening Study. Prev Med. 2016;90:66-71. [PMID: 27374944] doi:10.1016/j.ypmed.2016.06.033 ) for cancers detected by screening.
In a population-based study, Bleyer and Welch (Bleyer A, Welch HG. Effect of three decades of screening mammography on breast-cancer incidence. N Engl J Med. 2012;367:1998- 2005. [PMID: 23171096] doi:10.1056/NEJMoa1206809 ) estimated that 31% of all diagnosed breast cancer cases were overdiagnosed.

The authors conclude with the hope that their findings will join a consensus and facilitate decision-making regarding mammography screening.

Conclusions of the Editorial "Reducing the Burden of Overdiagnosis in Breast Cancer Screening and Beyond

The editorial published in conjunction with the study emphasizes the importance of informing women about what this overdiagnosis represents.
(Marcondes FO, Armstrong K. Reducing the Burden of Overdiagnosis in Breast Cancer Screening and Beyond. Ann Intern Med. 2022 March 1. doi: 10.7326/M22-0483. Epub ahead of print. PMID: 35226534.)

Authors underline: « Women who are considering having mammography screening should be counseled about the risk for unnecessary cancer treatment using this information."
Estimating that about 60% of the 280,000 cases of breast cancer diagnosed each year in the United States are discovered through mammography screening, eliminating overdiagnosis could save 25,000 women the cost and complications of unnecessary treatment.

"Substantial advances" in critical areas need to be made, according to the authors, including:
- Develop a better predictive capability to accurately identify tumors that will not progress
- Improve the accuracy of screening technologies to reduce the risk of overdiagnosis and improve the ability to detect breast cancer that has not been detected by mammography
-Implement prevention strategies to reduce the overall rate of breast cancer diagnosis, such as providing counseling on lifestyle changes and screening for genetic risk.

The authors of the editorial conclude: « Screening tests, whether for cancer or other conditions, can provide great benefit by detecting disease when it is more easily treatable. However, the risk of labeling millions of persons as having a disease without improving their outcomes is very real. For now, the key to navigating these tradeoffs remains open and effective physician–patient communication, rigorous evaluation of all proposed screening strategies, and continued investment in early detection research. We look forward to the day when making an early diagnosis always helps our patients achieve better outcomes. »

And the findings go beyond breast cancer screening.
"As screening and diagnostic testing continues to grow in clinical practice, the issue of overdiagnosis is being felt far beyond cancer screening. For some conditions, changing definitions have led patients to be labeled with a predisease state on the basis of a test result that was previously considered in the normal range. Although there are strong arguments in favor of early treatment to prevent long-term complications in many conditions, the reality is that, just as with cancer screening, there is little doubt that some patients diagnosed through a screening test would never have progressed and are likely to be receiving unnecessary treatment."

Comments and criticisms, opinion of Dr. V.Robert, statistician

1-A modeling study

The study remains a modeling study, which means that the results of a model depend on a chosen model and conditions of validity, at best unverifiable and at worst questionable. For example, the authors are obliged to consider that a breast cancer is either definitively non-evolving or inexorably evolving, with no possibility that the evolutionary status of cancer changes over time. It is not clear that things are that simple.

Another example is that the authors are obliged to build their model by considering that all progressive breast cancers evolve at the same rate and that this rate remains constant throughout the evolutionary period. In practice, there are most likely different distributions of progression rates for each type of breast cancer, and it is not clear that progression rates cannot vary over time.

2- The data on mortality from causes other than breast cancer used by the study do not seem well adapted.

On the one hand, after checking reference 25 of the study, which corresponds to the source of these data (Contribution of Breast Cancer to Overall Mortality for US Women): for a population of women aged 50 to 80 years, these data are not derived from direct measurements of mortality but from data estimated from projections (in other words, from models).

On the other hand, the data correspond to a cohort of women born in 1971. Since the median age of the women included in the study is 56 years, the cohort born in 1971 is adapted for the mortality of women included in 1971 + 56 = 2027. Or, if you prefer, the cohort adapted to have the mortality of women aged 56 in 2000-2018 should be born between 1944 and 1962. Whatever the reasoning, it is clear that the cohort considered to obtain the mortality data is too recent by at least a decade. This is not neutral since the tables in Reference 25 show a non-negligible decline in mortality over time.

3-The definition of screen-detected cancers is questionable.

Screen-detected cancers are considered to be those that meet the following two conditions: screening mammograms BI-RADS 3 to 5 + diagnosis of cancer within the next 12 months.
With criteria such as these, interval cancers are likely to be classified as screen-detected cancers (BI-RADS 3 + negative complementary examinations = screening showing no cancer; if a cancer occurs 11 months after the screening mammogram, it is an interval cancer, and yet it will be classified as a screened cancer). Even if these cases are not very frequent, they are part of the data used to adjust the parameters, and adjusting on "garbage in, garbage out" data can only give garbage results.

4- It is wrong to pretend that the study found that the overdiagnosis rate is 15%.

The reality is that the study shows that the overdiagnosis rate is somewhere between 9% and 27% (and any value within that range is possible, no more 15% than 9% or 27%).

Figure 3 from the study:

Depending on the age range, the percentage of overdiagnosis can vary up to 25% or even 32%.

Unfortunately, it is a very common mistake to take the result of a study (estimated rate from a sample) for the reality (real and unknown, rate in the population). And it is an even more common mistake to believe that the estimated rate is more likely to be close to the real rate than any other value in the confidence interval.

Conclusion

Based on such a study, we cannot arbitrarily consider that the debate on the frequency of overdiagnosis is closed, with a definitive frequency of 15%, as the study's authors would like.

On the other hand, the model may be interesting for answering questions about the evolution of the frequency of overdiagnosis as a function of the age of the women screened or about the evolution of the frequency of overdiagnosis as a function of the interval between two screening mammograms.    

Professor Alexandra Barrat of the University of Sydney, interviewed by Amanda Sheppeard, associate editor and reporter for Oncology Republic and The Medical Republic, said there are different methods for estimating the potential rate of overdiagnosis through breast cancer screening.
She said the study demonstrated the inevitability of overdiagnosis in screening for a number of cancers. "I think there is a need in the professional community for greater acceptance of what the evidence shows about breast cancer screening."
"We just need to recognize that this is inherent in a cancer screening program."

As a result, and beyond the evidence, according to A.Barrat, the study helped to underscore the importance of informed consent in breast cancer screening.

Conflicts of interests

Dr Ruth Etzioni - Individual investor and stock in Seno Medical  https://senomedical.com/clinical/product-applications

Seno’s first clinical product targets the diagnosis of breast cancer and will be used in addition to screening mammography, integrating opto-acoustics and ultrasound.

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.

Anatomopathology, possible uncertainties

Summary by Dr. C.Bour, 18 December 2021

Observation:

This case involves a 65-year-old woman who began mammograms at age 40 due to a family history of breast cancer (mother at age 80). She has already had biopsies, which revealed that she had a simple mastosis (benign condition of the breast, characterized by tension and pain in the breasts, as well as a "granular" consistency when palpating the breasts, in areas where the mammary gland is more present and dense).

A mammogram revealed two small foci of microcalcifications in one breast. A preliminary macrobiopsy was carried out, but it was unsuccessful due to difficulties in locating them. A few months later, a second macrobiopsy was performed.

The two biopsied sites revealed a carcinoma in situ (ductal carcinoma) and an "atypical hyperplasia" lesion. Due to the presence of two concomitant lesions, a complete mastectomy (complete removal) of the breast was recommended based on the pathology report.

Anatomopathology is not infallible

Breast biopsy samples can be difficult to analyze.

In a 2016 study published in the BMJ, American researchers assessed the effectiveness of 12 different strategies in reducing interpretation errors (second opinion requested for all samples, second opinion only in the case of atypia, or only in the case of the wish of the first pathologist or for first readers with less experience in breast pathology, etc...).

115 pathologists examined 240 breast biopsy specimens, one slide per case, and compared their observations to an expert consensus diagnosis.

This study revealed that pathologists who took part in the study disagreed with the expert panel's consensus about 25% of the time. Most of the disagreements were with specimens from difficult-to-interpret conditions, such as atypia, which occurs when cells appear abnormal but are not cancerous, and ductal carcinoma in situ (DCIS)

The conclusion of the study: except for invasive cancer cases where the second opinion rarely differs from the initial interpretation, ALL strategies requiring a second opinion improve diagnostic concordance and reduce misclassification rates of breast specimens from 24.7% to 18.1%, showing that variability in diagnosis is still only incompletely eliminated, especially for breast specimens with atypia.

A second opinion is thus recommended because it can mean the difference between a diagnosis of benign hyperplasia or carcinoma in situ, influencing surgical sanctions, the need for re-intervention, radiotherapy, and/or chemotherapy.

As a result, a second opinion can help patients make a therapeutic choice.

Why not propose a more systematic second reading of the biopsy?

In the case of a positive biopsy, the start of the disease is defined by this single examination of the tissue taken under the microscope (i.e., except for invasive cancer, where uncertainty is rarer) (histological diagnosis).

And it is astounding to note how, on the one hand, DCIS is considered a “stage 0” breast cancer with a very good prognosis, and how, on the other hand, the therapeutic sanctions for this DCIS and a fortiori for pre-cancerous lesions can be extremely aggressive, as aggressive as for a "true" invasive cancer.

The patient does not know the name of the person who read her biopsy; worse, she does not have the choice of the reader of her biopsy, the anatomopathologist, contrary to the choice she has for the general practitioner, the gynecologist, and even a surgeon if necessary.

This pathological anatomy report is never communicated to the patient, although it is strictly necessary and mandatory for treatment to begin. It determines the course of treatment and the therapeutic options available.

On the other hand, the pathology report is part of the patient's file and can thus be requested by the patient.

Recommendations for patients if carcinoma in situ or a borderline or atypical lesion is found.

First and foremost, don't panic; take your time. You have the following options:

1- Request that the biopsy results be sent to you physician.

2- In the event of a failure, request a complete copy of the medical file (mandatory within 8 days)

3- If you are unsuccessful, request that the Medical Council intervene to obtain it for you. You are the owner of the medical file.

4- With the result, it is legitimate to ask for a revision of the anatomopathology slides. You can even have the file re-examined by an expert (your general practitioner just has to ask for it).

5-It is also possible to ask for a second opinion from another surgeon, possibly located in another region.

The therapeutic choice can be discussed: a less aggressive intervention or even simply "careful monitoring," knowing that unfortunately in France, for the moment, very few practitioners are adept at this wait-and-see approach which is being studied in several large European trials, including the LORD trial which is still including patients.

Read here: https://www.dcisprecision.org/clinical-trials/lord/https://www.dcisprecision.org/clinical-trials/lord/

(-Since February 2019 are also accepted CIS grade II, in addition to grade I

-Since July 2020, the randomized trial has been transformed into a patient preference trial: women have the choice of the trial arm (either surveillance or conventional treatment)

Estrogen receptor and HER2 testing has been added before patients are enrolled in the trial to rule out high-grade lesions, to provide even greater safety in the trial

-There are now 28 sites open in the Netherlands, 6 in Belgium, and 15 sites will open in other countries (France, to come!)

Conclusion

An anatomopathological diagnosis should be reviewed and discussed by caregivers, rather than being accepted as a "gold standard" because it may trigger a series of aggressive treatments, the usefulness of which should be discussed with the patient.

Read more :

https://newsroom.uw.edu/story/second-opinions-notably-reduce-breast-biopsy-misdiagnoses

Website DCIS

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.

Explanation of the Cancer Rose Decision Support Tool

By Cancer Rose, November 27, 2021

The decision aid describes the number of cancers, the number of deaths from cancer, and the number of false alarms estimated in 2 cohorts of 2,000 women starting at age 50:

- One cohort participates in organized screening until age 59 and has 5 screening mammograms (at age 50, 52, 54, 56, and 58)

- The other cohort does not participate (0 screening mammograms).

The calculations are based on:

- French epidemiological data available (in October 2021) on the Santé Publique France website 1,2

- An assumption of 65% of the women concerned getting screened (50% through organized screening + 15% through screening on individual initiative). This hypothesis is consistent with the figures announced by INCa 3

- A hypothesis of overdiagnosis representing 20% of cancers detected in a population of screened women. This hypothesis is in the middle of the range of published values and is compatible with the range of values accepted by INCa (1 to 20%) 4

- An assumption of a 15% reduction in mortality through screening. This assumption is in the middle of the range of published values and is consistent with the range of values accepted by the INCa (15 to 21%)4

1-Estimation of the number of cancers

The epidemiological data used are presented in the table below extracted from reference 1.

click on image

The incidences shown above are expressed as the number of breast cancers per 100,000 women.

For 2.000 women, we have :

- for women aged 50-54:

285.1*2000/100000 = 5.702 cancers / 2.000 women

- for women aged 55-59:

273.1*2000/100000 = 5.462 cancers / 2,000 women

In a cohort of 2,000 women, we would observe:

5.702 cancers when the cohort is 50 years old

5.702 cancers when the cohort is 51 years old

5.702 cancers when the cohort is 52 years old

5.702 cancers when the cohort is 53 years old

5.702 cancers when the cohort is 54 years old

5.462 cancers when the cohort is 55 years old

5.462 cancers when the cohort is 56 years old

5.462 cancers when the cohort is 57 years old

5.462 cancers when the cohort is 58 years old

5.462 cancers when the cohort is 59 years old

This means a total of 55.82 cancers (rounded to 56)

This incidence, cumulated over 10 years, of 56 cancers per 2,000 women corresponds to a cohort representative of the French population. This population comprises screened women and women who are not getting screened.

In other words, the 56 cancers are the sum of cancers that affect women who get screened + cancers that affect women who do not get screened.

This can be expressed as 56 = PD*CD + PN*CN

where CD  = cumulative incidence of cancer in women who are screened

        C = cumulative incidence of cancers in women who are not screened

       PD  = proportion of women who are screened

       PN = proportion of women who are not screened

With our assumption of 65% of women being screened: PD  = 0.65 and  PN = 0.35.

We therefore have: 56 = 0,65*C+ 0,35*CN  (equation 1)

With our hypothesis of 20% overdiagnosis of cancer among women who are screened, we have: overdiagnosis = CD - C= 0,2*C       d'où   CN = 0,8*CD   (equation 2)

Combining equations 2 and 1, we obtain: 56 = 0,65*CD + 0,35*0,8*C  soit : 56 = 0,65*CD + 0,28*CD  

hence : 56 = 0,93*CD      hence :  CD = 56/0,93 = 60,22     and : CN = 0,8*CD = 0,8*60,22 = 48,18

In summary:

- the number of expected cancers in the screened cohort can be estimated at 60

- the number of expected cancers in the non-screened cohort can be estimated at 48

- the number of overdiagnoses in the screenedcohort can be estimated at 12.

2- Estimating the number of deaths

The epidemiological data used are presented in the table below taken from reference 2.

click on image

The data for women aged 50 and 60 allows us to draw Graph 1 below.

This graph suggests that survival tends to stabilize at around 70% over time. Therefore, the lethality associated with breast cancer can be estimated at approximately 30% (by lethality, we mean the proportion of women with breast cancer who will die).

To have at least 20 years of hindsight in 2018, the data come from cancers diagnosed before 1998, therefore, before the organized screening. We can therefore consider that this 30% lethality concerns unscreened women.

The number of deaths in the unscreened cohort can be estimated by applying this 30% case fatality rate to the 48 breast cancers expected in this cohort.

Thus: number of deaths among women not screened = 48*0.3 = 14.4 (rounded to 14)

Assuming a 15% reduction in mortality in the screening cohort, the number of deaths in this cohort equals 85% of the number of deaths in the unscreened cohort.

Thus: number of deaths in the screening cohort = 14.4*0.85 = 12.24 (rounded to 12)

In summary:

- The expected number of breast cancer deaths in the unscreened cohort can be estimated at 14

- the number of breast cancer deaths expected in the screening cohort can be estimated at 12

- the number of breast cancer deaths prevented by screening can be estimated at 2.

3- Sensitivity analysis

The assumption of 65% of women being screened is questionable. A sensitivity analysis, using a proportion of women being screened ranging from 50% to 90%, in 10% increments, gives the following results.

Click on image

There is slight variation in the results, particularly in overdiagnosis estimates and avoided deaths.

The assumption of a 30% case fatality in women not being screened is also questionable. A sensitivity analysis, re-running the calculation with a case fatality ranging from 10% to 50% in 5% increments, gives the results below.

click on image

The estimate of deaths is sensitive to the value chosen for the case fatality. In particular, with the problem of rounding, an underestimation of the case fatality, even a modest one (30% rather than 35%), could lead to underestimating the deaths prevented.

However, this underestimation is unlikely because the epidemiological data correspond to cancers diagnosed more than 20 years ago. The therapeutic progress made since then suggests that our estimate of 30% is more likely to be overestimated than underestimated.

4-Two other decision aids

The hypotheses used for the frequency of overdiagnosis (20%) and the reduction in mortality (15%) correspond to median hypotheses and are compatible with the ranges accepted by the INCa. However, it is interesting to look at the outcome of the decision aid based on other assumptions.

Decision aid with assumptions favorable to screening: overdiagnosis = 10% - reduction in mortality = 25%.

click on image

Decision-aid with unfavorable assumptions for screening: overdiagnosis = 40% - mortality reduction = 5%.

Click on image

Références

  1. Defossez G, Le Guyader‑Peyrou S, Uhry Z, Grosclaude P, Colonna M, Dantony E, et al. Estimations
    nationales de l’incidence et de la mortalité par cancer en France métropolitaine entre 1990 et 2018. Volume 1 – Tumeurs solides
    . Saint‑Maurice (Fra) : Santé publique France, 2019. 372p.
    https://www.santepubliquefrance.fr/maladies-et-traumatismes/cancers/cancer-du-sein/documents/enquetes-etudes/survie-des-personnes-atteintes-de-cancer-en-france-metropolitaine-1989-2018-sein
  2. Molinié F, Trétarre B, Arveux P, Woronoff A-S, Lecoffre C, Lafay L et al. Survie des personnes atteintes de cancer en France métropolitaine 1989-2018 – Sein. Boulogne-Billancourt : Institut national du cancer, septembre 2020, 12 p.
    https://www.santepubliquefrance.fr/maladies-et-traumatismes/cancers/cancer-du-sein/documents/enquetes-etudes/survie-des-personnes-atteintes-de-cancer-en-france-metropolitaine-1989-2018-sein
  3. https://www.e-cancer.fr/Professionnels-de-sante/Depistage-et-detection-precoce/Depistage-du-cancer-du-sein/Le-programme-de-depistage-organise
  4. https://www.e-cancer.fr/Professionnels-de-sante/Depistage-et-detection-precoce/Depistage-du-cancer-du-sein/Les-reponses-a-vos-questions

5-Number of positive screenings

Source: "Indicateurs nationaux de performance du programme de dépistage du cancer du sein sur la période 2017-2018. Updated July 12, 2021. Open access on the Santé Publique France website - https://psite.santepubliquefrance.fr/ Last access on September 17, 2021.

https://www.santepubliquefrance.fr/maladies-et-traumatismes/cancers/cancer-du-sein/articles/indicateurs-nationaux-de-performance-du-programme-de-depistage-du-cancer-du-sein-sur-la-periode-2017-2018

During 2017-2018:

- among women aged 50 to 54, 1,131,008 screenings were performed (N01)

- In women aged 55-59, 1,043,554 screenings were performed (N01)

Calculation of what happens to 2000 women aged 50 who start screening without having had any mammograms before and who continue for 10 years, i.e. 5 screening cycles

Number of positive screenings (N05)

A cohort of 2,000 women aged 50 years and exposed to screening for 10 years:

"number of positive L1 or L2 screens before the assessment"

(N05) / number of women screened (N01) x 2,000

50 years old, Initial screening 50-54

23,310 / 150,107 x 2000 = 311 positive tests.

Remaining 2000 - 311 = 1689 women without a positive test.

52 years old, subsequent screening 50-54 years

42,351 / 526,619 x 1689 = 136 positive tests.

Remaining 1689 - 136 = 1553 women without positive test results

54 years old, subsequent screening 50-54 range

42,351 / 526,619 x 1553 = 125 positive tests.

Remain 1553 - 125 = 1428 women without positive test results

56 years old, subsequent screening 55-59

68 566 / 943 696 x 1428 = 104 positive tests

Remain 1428 - 104 = 1324 women without positive test results

58 years old, subsequent screening 55-59

68,566 / 943,696 x 1324 = 96 positive tests.

Remain 1324 - 96 = 1228 women without positive test results

Number of women with at least one positive test after 5 cycles (10 years): 2000 - 1228 = 772

This number was rounded to 770 to avoid giving a false impression of accuracy and precision.

6-Number of interval cancers

Source : Exbrayat C. et coll. "Sensibilité et spécificité du programme de dépistage organisé du cancer du sein à partir des données de cinq départements français, 2002-2006" BEH 2012 ; (35-36-37) : 404-406.

As of November 2011, there is no more comprehensive or recent French data to our knowledge.

In this study of 5 French departments from 2002 to 2006, there were:

414,432 mammograms resulting in 3082 screened cancers plus 638 interval cancers.

The percentage of interval cancers among all breast cancers is therefore :

638 / (3082 + 638) = 638 / 3720 = 17,15 %

Out of 60 cancers, we have 60 x 17.5/100 = 10.29 interval cancers, rounded to 10.

 - - - - - - - - - - - - - - - - - - - - - - - - - - - -- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

7-Number of true positives

Since there are 60 breast cancers, of which 10 are interval cancers, the number of true positive cancers detected by mammography is 60 - 10 = 50.

 - - - - - - - - - - - - - - - - - - - - - - - - - - - -- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

8-Number of non-overdiagnosed cancers detected

Since there are 12 overdiagnosed cancers (20% of 60), the number of true positive non-overdiagnosed cancers detected by mammography is 50 - 12 = 38.

 - - - - - - - - - - - - - - - - - - - - - - - - - - - -- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

9-Number of false positives

Since there are 770 positive screenings, of which 50 are true positives, there are 770 - 50 = 720 false positives.

 - - - - - - - - - - - - - - - - - - - - - - - - - - - -- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

10-Number of women who had at least one biopsy

Source:

https://www.santepubliquefrance.fr/maladies-et-traumatismes/cancers/cancer-du-sein/articles/indicateurs-nationaux-de-performance-du-programme-de-depistage-du-cancer-du-sein-sur-la-periode-2017-2018

File: "tableaux de l'ensemble des indicateurs nationaux pour les années 2017 et 2018 cumulées, déclinés par rang published on July 12, 2021. Last access on November 27, 2021.

"Number of surgical biopsies or tumor resection performed (N10)

+ Number of micro or macro biopsies performed (N11)

(N10+N11) / number of women screened (N01) x 2,000

50 years old, initial screening 50-54

N10 + N11 = 1863 + 3711 = 5574

5574 / 150 107 x 2000 = 74 biopsies

Remaining 2000 - 74 = 1926 women without biopsy

52 years old, subsequent screening 50-54 years

N10 + N11 = 3335 + 6330 = 9665

9665 / 526 619 x 1926 = 35 biopsies

Remaining 1926 - 35 = 1891 women without biopsy

54 years old, subsequent screening 50-54

N10 + N11 = 3335 + 6330 = 9665

9665 / 526 619 x 1891 = 35 biopsies

Remaining 1891 - 35 = 1856 women without biopsy

56 years old, subsequent screening 55-59

N10 + N11 = 6438 + 10659 = 17097

17097 / 943 696 x 1856 = 34 biopsies

Remaining 1856 - 34 = 1822 women without biopsy

58 years old, subsequent screening 55-59

N10 + N11 = 6438 + 10659 = 17097

17097 / 943 696 x 1822 = 33 biopsies

Remaining 1822 - 33 = 1789 women without biopsy

Number of women with at least one biopsy after 5 cycles (10 years):

2000 - 1789 = 211 rounded to 210. Of these 210 biopsies, 50 resulted in cancer diagnoses, and therefore there are 210 - 50 = 160 biopsies for women who had a false positive.

Estimation of deaths due to overdiagnosis - Dr. V. Robert

Overdiagnosis is treated in the same way as progressive breast cancer. They, therefore, generate unnecessary treatments (= overtreatments). Like all treatments, overtreatment leads to side effects, some of which can be fatal. This is particularly true of radiotherapy, which can cause lung cancer or heart complications.

It is therefore indisputable that overdiagnosis and its treatment cause deaths. However, it is impossible to quantify these deaths precisely in the absence of reliable epidemiological data.

All clinical trials concluded that there is no significant difference in overall mortality (all causes) between women who are screened and those who are not screened.

This finding can be interpreted in 3 ways:

  • either there is no difference in overall mortality. In this case, the breast cancer deaths prevented by screening have to be compensated by an equivalent excess of deaths from other causes. Applied to our cohort of 2,000 screened women, this means that the 2 breast cancer deaths prevented are compensated by an excess of 2 deaths from other causes due to the 12 overdiagnoses.
  • or there is a decrease in overall mortality among screened women, which does not appear statistically significant due to a lack of power in the clinical trials. At most, this decrease in overall mortality could be equal to the decrease in breast cancer mortality. This assumes that there are no excess deaths from other causes. Applied to our cohort of 2,000 screened women, this means that there are 2 breast cancer deaths avoided and 0 deaths due to overdiagnosis.
  • or there is an increase in overall mortality in screened women, which does not appear to be statistically significant because of a lack of power in clinical trials. In this case, deaths due to overdiagnosis must outnumber breast cancer deaths prevented by screening. Applied to our cohort of 2,000 screened women, this means that the 12 overdiagnoses should account for more than 2 deaths. More than 2 deaths per 12 overdiagnoses means that overdiagnosis would cause death in more than 17% of cases. Due solely to side effects, such high case fatality seems unlikely. We do not support this hypothesis.

In summary: It is not possible to quantify precisely the deaths due to the 12 overdiagnoses, but it is likely that these deaths are between 0 and 2.

Deaths from screening and overdiagnosis - Dr. J. Doubovetzky

Randomized controlled trials have not shown a statistically significant decrease in the number of deaths due to screening. Neither have epidemiological studies (historical or geographic comparisons).

Since the introduction of screening, there has been an overall decrease in breast cancer mortality, but this is mainly attributed to improved treatment and reduction of certain risks (e.g., "preventive" hormonal treatments for menopausal disorders).

As long as it is not demonstrated that screening decreases mortality, it is normal to include the lack of mortality decrease in the assumptions.

Plausible explanatory hypotheses support this view.

There are many potentially fatal adverse effects of screening mammography and overdiagnosis. Unfortunately, these adverse events have never been thoroughly evaluated, so their mortality is not quantifiable.

These potentially fatal adverse effects include:

- The direct effects of ionizing radiation from mammography. To estimate them, we rely on indirect data such as the data from Hiroshima, the impact of the former X-ray monitoring of tuberculosis patients, or even the historical treatment of dermatological diseases by radiation. Linear mathematical models are used, which are known to be wrong.

- Suicides, cardiovascular deaths, and road accidents following the announcement of a cancer diagnosis. Their existence is demonstrated for the first two but not quantified. It is probable for the third. As far as we know, this risk is all the higher when cancer in question is perceived as serious (which is what the pro-screening campaigns contribute to). But we don't have precise figures.

- Anesthetic and infectious complications of biopsies and surgical treatments (known, poorly quantified)

- Cardiac and cancerous complications of over-treatment with radiotherapy.

- Adverse effects of treatments. For example, the undesirable effects of heart failure treatments due to overdiagnosis of radiotherapy. Or the undesirable effects of psychiatric treatments linked to anxiety and depression secondary to overdiagnosis (for example, rhythm disorders secondary to antidepressants by prolongation of the QT interval, or falls or accidents linked to benzodiazepines, partially overlapping with the previous item). These effects have been demonstrated but not quantified. They also depend on prescribing habits, which vary from country to country...

While each of these numbers may seem small, no one can assess the total impact of these adverse events. Any assessment of "I think it is a lot" or "I think it is not a lot" is purely subjective. The only true expression of this risk is "between zero and equivalent to the benefit." Or even more. Some authors have made calculations and projections that the mortality due to the adverse effects of screening and overtreatment would be greater than the gain in mortality made possible by mammography.

For example, Professor Baum estimated that for every life saved by screening, between 1 and 3 lives would be shortened by the adverse effects of overdiagnosis ([1]).

Therefore, the range we have chosen (0 to 2 deaths due to adverse effects of screening and overdiagnosis) is reasonable.


[1]Baum M "Harms from breast cancer screening outweigh benefit if death caused by treatment is included" Br Med J 2013; 346: f385. Doi: 10.1136/BMJ.f385

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.

Detailed information for women

This decision support tool is a simplified and practical representation of the balance between the benefits and risks of screening.

To understand the advantages and disadvantages of screening and to make an informed personal choice, the potential impact of screening on your life must be highlighted.

Not everything can be quantified in terms of mortality. Some non-fatal risks are never discussed in communications about screening, even though they will impact and alter your life.

Thus, in addition to the scientific data on mortality that we present to you visually, your personal decision about whether or not to undergo screening will be influenced by the value and weight you place on the benefits and the harms that we will discuss below.

Only a thorough presentation of all the harms and risks of screening will allow you to understand the impact of screening in "real life."

According to the importance you give to each option, you can independently decide whether or not to participate in screening based on your life experience, convictions, the vision of life, and disease.

There is no right or wrong choice, and there is your choice.

Below, we will cover the different elements that are essential for your choice:

1°- Harmful treatment side effects

Often you will hear that screened women can hope for a "less aggressive" treatment.  First and foremost, the issue is not having a "less aggressive treatment," but rather no treatment at all if it is unnecessary. Any treatment administered in the case of an unnecessary diagnosis (we'll come back to this notion) will be excessive.

Then, the "less aggressiveness" of the treatments is entirely relative, and their consequences are never mentioned as if they don't exist. However, all treatments following a breast cancer diagnosis have significant side effects, affecting the women treated in their dignity as women and their daily activities. Some of these side effects can be severe enough to require hospitalization.

First and foremost, there is surgery.

When a breast cancer diagnosis is made, you should know that either a lumpectomy or a mammectomy is performed. This means either an excision on your breast to remove the tumor, or your breast will be removed entirely (with possibly another surgery to reconstruct your breast artificially). Any surgery carries potential risks (infection, post-surgical complications, poor healing).

Contrary to some messages that claim less invasive surgeries, surgical procedures are on the rise.

Therefore, we cannot tell women that less surgery is being performed. Since the screening is being done, more breasts are being removed. 1] [2] [3] [4] [5]

Second, there are all the consequences of radiotherapy to consider.

Local effects, more or less late:

*Skin effects from superficial redness to radiodermatitis

*Lung fibrosis, which causes lung tissue to lose elasticity

*Coronary artery damage, cardiac rhythm disorders, cardiac disorders, and congestive heart failure [6].

*Radiation-induced secondary cancers in the esophagus, lung, skin, and ribs[7].

And general effects:

*Fatigue

*Anemia

*Inappetence

*Low blood cell count and blood system diseases [8]

Third, there are chemotherapies.

Chemotherapy drugs, like any effective drug, have various side effects.

-Some are very rare:

*another tumor occurrence,

*Pituitary hemorrhages (small brain gland),

*Psychotic disorders...,

-Others are rare:

*Anaphylactic reactions

*Alteration of the mood...,

-Some are more frequent:

*Depression,

*Paresthesias (unpleasant sensations in the extremities),

*Rashes,

*Increased weight,

*Spinal cord compression,

*Diminished glucose tolerance,

*Heart failure, myocardial infarction,

*Bone pain,

*Thrombocytopenia,   

And finally, some are very common:

*Vasomotor flushes (redness on the face),

*Diminished libido,

*Anorexia,

*Alopecia ( loss of hair),

*Dyspnea (breathing difficulties),

*Nausea,

*Vomiting,

*Diarrhea,

*Asthenia,

*Myalgia (pain in the muscles),

*Infections (sometimes severe),

*Neutropenia (low white blood cell count),

*Anemia (low red blood cell count),

*Neuropathies (neurological disorders)...

Chemotherapy is rarely a single drug, which means that you may experience a "combination" of adverse side effects depending on the proposed combinations.

2° The concrete outcome of overdiagnosis is fundamentally overtreatment

Overdiagnosis [9] is the unnecessary diagnosis of cancer that would never have endangered your life or health. It is a negative side effect of all screenings. It is difficult to quantify it. Overdiagnosis is not identifiable at the individual level. You will never know whether or not you have been diagnosed unnecessarily. There is only "one diagnosis" for both the doctor and yourself. Then any lesion will be treated.

Screening is an implicit contract with no return for the woman who participates. Accepting to participate in the screening implies that you accept all its consequences.

Indeed, when something has been detected, and it turns out to be cancer, even a small one, even a low-grade one, there is no way of knowing whether it will not progress.

Once the lesion is seen and identified as cancer by biopsy, it will be treated without any distinction being made between a cancer that would develop or a cancer that is harmless and therefore unnecessarily treated (an overdiagnosis). There is no turning back.

It should not be forgotten that even so-called "borderline" lesions are treated with the same aggressiveness.

3°The "compensation" for all of these disadvantages of screening might be a reduction in mortality or disease severity, but what is the reality?

Although screening has been in place for decades, demonstrating a reduction in mortality due to screening has proven difficult. If it existed, it would certainly be minimal.

The "lead time to diagnosis" [10] is misleading in terms of screening effectiveness because screening anticipates the "starting point" of a cancer, bringing forward the diagnosis of cancer that would have manifested itself later without screening.

This makes the cancer patient's life appear longer but not affect your longevity or life expectancy.

The more effective treatments become, the less useful the screening.

The all-cause mortality rate is never communicated, but overall mortality is not decreasing. This means that deaths from other causes may offset the meager benefit of screening. Among these other causes are the harmful and sometimes fatal effects of treatments. Finally, where is the true benefit [11]?

There is no reduction in serious, advanced cancers, precisely those we would like to see reduced by screening, indicating another failure of screening to meet its objectives.

4°-Today: screening does not guarantee the four essential expectations of women:

* There is no guarantee of dying less from breast cancer

*There is no guarantee that you will have less treatment

*There is no guarantee that your cancer will be less severe

*There is no guarantee that your life will be undisturbed, without additional stress, without a loss of quality of life, without a modification of your identity as a woman...

5° This is not a minor point: undesirable effects can occur multiple times.

A woman may experience false alarms [12] (suspicion of cancer that will not be confirmed but only after further tests and sometimes a biopsy) several times during her screening pathway.

The risk of false alarm is increased by the double reading of the mammograms, which a second radiologist will re-examine after the first reading.

Concerned that he will "miss something," the radiologist is more likely to classify an image as suspicious. A double reading increases the risk of a false alarm.

A woman may be over-diagnosed in one breast and then over-diagnosed in the other, especially since the "diagnosis" in the first breast will result in increased surveillance of the other breast.

The over-diagnosis she will face may have a transgenerational impact. This means that all of her descendants will be considered "at risk for breast cancer" and will be subjected to more frequent monitoring than usual.

6°-The psychological consequences are real and long-lasting.

A cancer diagnosis, whether it is true cancer or an overdiagnosis, or even the experience of a false alarm, causes disturbance in your biography and your perception of existence: depression, psychological disturbances related to your body image, loss of your job, loss of your social status, fear of a cancer recurrence, anxiety at the approach of each check-up, family problems, loss of income... All of this is brutal psychological suffering, and you should be aware of it.

There is also the anxiety generated while waiting for an exam, during the exam, and while waiting for the results, sometimes so intense that anxiolytics are prescribed in some cases.

7°-Finally, there is an alternative to screening: consultation in the event of symptoms.

According to studies, consulting in the presence of symptoms (such as a persistent lump) is very effective in determining a diagnosis without delay [13].

References

[1] Prescrire

[2] panorama de l'OCDE (partie 3)

[3] Cochrane

[4]  Etude étatsunienne

[5] Mastectomies en France

[6] https://cancer-rose.fr/2020/01/12/les-maladies-cardiaques-sont-le-plus-grand-tueur-parmi-les-survivantes-du-cancer-du-sein/

[7] https://cancer-rose.fr/2021/06/01/les-cancers-radio-induits-apres-radiotherapie-du-cancer-du-sein/

[8] https://cancer-rose.fr/2019/09/19/les-cancers-hematologiques-secondaires-apres-cancer-du-sein-traite/

[9] https://cancer-rose.fr/2021/10/23/quest-ce-quun-surdiagnostic/

[10] https://cancer-rose.fr/2021/10/23/quest-ce-que-la-survie/

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

[12] The false alarm is explained in the article: https://cancer-rose.fr/2020/10/17/quest-ce-quune-mammographie-de-depistage/

[13] https://cancer-rose.fr/2021/11/05/renforcer-la-valeur-du-diagnostic-clinique-precoce/

 

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.

Decision-aid Cochrane / Baum

This graphic is based on the Cochrane meta-analysis and M. Baum's study on the consequences of screening when treatment effects are considered.

Cochrane Data

The Cochrane Collaboration (currently the Cochrane Organization) is a non-profit organization composed of volunteer researchers from all over the world who are financially independent of the pharmaceutical industry.

This collaboration aims to systematically organize scientific information and medical research data based on properly conducted clinical trials. The scientifically validated data are summarized in an accessible way and published in the Cochrane library.

To assess the screening results and weigh the benefits and risks, researchers gathered data from all previous screening studies, which included 600,000 women – both screened and not screened. They combined the findings of all studies conducted since the 1970s to compare the benefits and harms of each situation. To make their results more concrete, they projected them onto two fictitious populations of 2 000 women in the form of a "dot chart."

Each dot represents a woman. Researchers from the Cochrane Collaboration indicate overdiagnosis (red dots), false alarms (blue dots), avoidable deaths (dark dots), and deaths (black dots) to provide a comparative picture of what happens when you have a screening versus when you don't.

Their calculations are summarized here. https://www.cochrane.org/CD001877/BREASTCA_screening-for-breast-cancer-with-mammography

English brochure is here: https://www.cochrane.dk/screening-breast-cancer-mammography

Study of Professor Michael Baum, BMJ 2013

We incorporated the results of M.Baum's study, published in the BMJ journal in 2013.

Michael Baum is an Emeritus Professor of Surgery, Division of Surgery and Interventional sciences, University College London, London WC1E 6BT, United Kingdom.

According to this researcher, when treatment-related deaths are included in the mortality count, the harms of breast cancer screening outweigh the benefits.

These deaths must be considered because the expected benefit of screening (the golden dot materializing the 'life saved') is outweighed by the death due to therapeutic complications (the green dot materializing the 'life shortened' by damage caused by surgery, radiotherapy, chemotherapy, and hormone therapy).

Quote from the last paragraph of the study:

"If each of those were translated into total lives saved from all causes then I would remain content but, unfortunately, when 10 000 are screened along the way about 120 to 140 cases will be overdiagnosed with the current age group invited. Four fifths of these women would receive radiotherapy and would be at an increased risk of dying of ischaemic heart disease and lung cancer. Knowing the background risks (box 2) and multiplying these by the factors 1.27 and 1.78 gives us increases of 2% for lung cancer and 1.33% for myocardial infarction. Adding that to all cause mortality rates I crudely estimate that an additional one to three deaths might be expected from other causes for every breast cancer death avoided."

THE POSTER, download

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


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

Screening 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.

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.

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.

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.