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
[2] panorama de l'OCDE (partie 3)
[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/