The Revue Prescrire, the only independent medical journal published in the Forum part, our letter to the CNGOF, as well as a contextualization of the situation at the end of 2022.
This letter, sent in September 2022, has remained unanswered to date.

The 2 pages are here

The mail says this:

Bretteville sur Odon, August 29, 2022,

Madam President,

I intervene as president of AMAVEA (Méningiomes Association due to cyproterone acetate, assistance to victims and taking into account other molecules). One of the goals of our association, created in January 2019 and approved by the Ministry of Health on July 8, 2020, is to inform about the risk of developing meningiomas in connection with the taking of synthetic progestin drugs. This risk is demonstrated to this day for three drugs, cyproterone acetate (Androcur®), chlormadinone acetate (Lutéran®) and nomestrol acetate (Lotényl®). The occurrence of intracranial meningioma is a serious and recognized side effect of synthetic synthesis and synthetic estrogens.

Our association participated in the meetings of the temporary specialized scientific committee by the National Agency for the Safety of Medicines from its creation in January 2019 concerning cyproterone acetate (Androcur®). It continues to participate meetings which are currently taking place concerning other drugs likely to cause meningiomas. Our association participated in the reassessment of these treatments in the context of monitoring good practices under the aegis of the High Authority for Health.

You know that these treatments are very commonly prescribed, especially in the context of endometriosis, but also for contraception. Our association receives daily messages from patients who receive erroneous information from certain gynecologists concerning meningiomas and their management.

Here is the erroneous information most often reported by patients:

• "Screening of a meningioma is useless" is information that requires an argued explanation because the rules of screening have been enacted by the competent authorities and are accessible to patients who, sometimes, do not understand the decisions taken concerning them.
• "A meningioma is not a serious illness", "a meningioma is a benign tumor", "your meningioma is small" are all information that can minimize the potential gravity of a clinical situation because a meningioma, even benign (of grade 1) and small can generate definitive neurological and neurocognitive deficits Atypical tumor (grade 2), or even a malignant tumor (de grade 3). Méningiomes should be left to rule on these points which are of capital importance for the patient; These falsely reassuring speeches do not help.
• "Meningioma will disappear when you stop treatment X" is an absolutely false assertion. Meningioma can actually decrease after stopping a progestin synthetic medication, but not in all cases, and in an unpredictable and in a long time. In any case, it does not disappear. Again, meningiomes should be left to rule on the evolutionary course of meningioma that has just been diagnosed.

The result is the care defects, which most often encountered are:

• The absence of addressing towards a meningioma specialist: patients are most often addressed to a neurologist and are sometimes addressed to any specialist because of the "small size" of meningioma. It should be recalled that specialists in the management of meningiomas are the neurosurgeons and that an opinion is required in all cases.
• The management of progestinic drugs: patients completely understand the complexity of having to replace the drug incriminated by another, especially when their treatment is prescribed as part of the AMM for a disabling disease. As such, they may hear that we should take the time of consultation between doctors because they are aware that certain hospitals have organized dedicated meetings. On the other hand, it is not admissible to hear that there is "no solution" in consultation.
• The proposal of the IUD MIRENA®: this IUD, which contains progestin hormones is being evaluated (epidemiological study of Ep-Phare) to find out if it is at increased risk of meningioma. As such, all reservations and precautions must be taken by gynecologists in their prescription and in the information of patients.

It is detrimental for patients not to have, on the part of their gynecologists, reliable and intelligible information and care suitable for current knowledge. Patients may understand without difficulty that their situation requires medical reflection and addressing to a specialist colleague. On the other hand, the erroneous and falsely reassuring speeches are unacceptable and their possible efficiency is made obsolete by the abundance of information available on the Internet.

Our association requests that gynecologists provide factual information adapted to the light of knowledge on the question and requires tact in the speech provided to patients. To get there, perhaps it is necessary to recall the context: that of a tumor induced by a drug that develops in the head of the patient sitting in front of the gynecologist. It is easy to understand that it is not "Benin" to may have to be "open the skull", to be "trepanized", with a risk of neurological sequelae (which is unfortunately possible after this type of surgery). So "benign" is meningioma, such an announcement is always real violence and each patient cashes as she can. Thus, the violence of words or the trivialization of the situation should not be added to what is experienced as a cataclysm by patients.

The college you chair participates in the representation of the profession with public authorities and government agencies in the fields of initial training, continuing education and organization of care, in connection with other learned companies and unions of gynecologists and obstetricians. Thus, your college is in the ideal position to remedy this situation detrimental to patients, by implementing all the means necessary for the information provided and the management is of quality, for all patients and throughout the territory. By the way, we thank the gynecologists who knew how to accompany their patients without clashes. To do this, it seems judicious that the college you preside is linked to the learned societies of neurosurgery. The AMAVEA association’s scientific committee is at your disposal to help you.

While waiting for a return from you and by staying at your entire disposal to advance in concert, please accept, Madam President, the expression of our respectful greetings.

Madame Emmanuelle HUET-MIGNATON

For information, the AMAVEA Scientific Committee

- Professor Johan Pallud, neurosurgeon, head of neurosurgery service at GHU Paris Psychiatry & Neuroscience, University Paris Cité, Paris

- Professor Romuald Seizur, neurosurgeon, head of neurosurgery service at the Brest University Hospital, University of Western Brittany, Brest

- Professor Hugues Loiseau, neurosurgeon at the CHU de Bordeaux, University of Bordeaux, Bordeaux

-Doctor Frederic Dhermain, Radiotherapist, head of the neuro-oncology committee, at the Gustave Roussy Institute, Villejuif