I hesitated a bit before joining the association. I was a member of the Facebook group then I have unsubscribed. To finally join you. At first, the testimonies of all these women knew my morale, worked on me. I already had trouble managing my own problem, so reading those of others ...

I think I was doing my ostrich or my Dany Boon: I'm fine, everything is fine !! Then finally, I realized that I was alone in front of my meningiomas and that a little support was good . Reading testimonials, encouragement or discouragement makes me feel a member of a benevolent and attentive community. THANKS !

As far as I'm concerned, I'm going to be 49 years old. I took Androcur for over 30 years for hormonal disorders, capricious ovaries and hyper hair. The gynecologist who follows me told me about the side effects of the Androcur in 2018 by leaving me to continue or stop.

The treatment suited me, I am single, without the desire for children. I had no rules, the foot! I thought I was safe, why, I don't know ... I probably thought I had a guardian angel, he made fun of me! The pharmacist also warned me of an alert message that appeared on her computer.

In March 2019, the gynecologist, this time, prompted me to stop, more firmly and prescribed me a brain MRI. I had and still had no particular sign, no symptoms. In April 2019, I made the first MRI at the Saint-Quentin hospital with a Péronne radiologist I knew because I was doing my mammographies.

She therefore announced to me, after the exam that I have 7 meningiomas, that some bleed (the neurosurgeon will deny), and that I must quickly make an appointment with a neurosurgeon to consider an operation. She offers to make an appointment for me and invites me to go to her office the next day for more information and recover the report. Obviously it is the shock after these slightly brutal announcements ...

The next day, I go to the Radiology Cabinet in Péronne where I am received as a dog in a skittle game when I ask for the report. "We send it to you!" ». Uh, no the radiologist told me to come and get him ...

The radiologist has the Count-Rendu but did not make an appointment with the neurosurgeon as promised. I feel a little lonely. I don't know what to do. By thinking a little, I decide to go see my gynecologist with the results and ask him for his opinion. She receives me a few days later, reassures me, told me to do a control MRI in 6 months. But that if I want, I can make an appointment with a neurosurgeon.

My first contacts with the Lille CHR are complicated : nobody on the phone and finally, someone who tells me to send my file. They will see if it is urgent or not to contact me. I stress, I want to be fixed faster. I want another opinion than the radiologist who, I learn it by colleagues, has no good reputation in Péronne.

So I go to a neurologist in Armentières, an appointment made by Doctolib, a few weeks later. A funny man who tells me that tumors are not badly placed, that I have no symptoms so that I must not be worried . He nevertheless keeps my DVDs to read them on his high definition computer. DVD which I will never see the color again !!

So still no 2nd ^opinion on images (and more images as a bonus!) I redo an MRI 6 months after the first in November 2019, in a new hospital, with a new radiologist in Armentières. He can only compare the new images with the report since I did not recover the DVDs…

I have a "voluminous meningioma median basi-border 28 mmx29mm x 23mm high" and multiple other meningiomas. The radiologist seems a little worried and strongly advises me to make an appointment at the Lille CHR in a neurosurgery service. This time I managed to join the secretariat and I have an appointment in January 2020 with Doctor Devalckeneer at Roger Salengro Hospital in Lille.

A young and charming doctor, who says he has made his thesis on the subject "Méningiomes à Androcur". He takes the time to explain the situation to me, the different possibilities of evolution of tumors and above all tells me that no operation is on the agenda for the moment. We watch.

I had to see him again in March 2020 with an MRI, which would have been a year without Androcur. Containment obliges, I canceled the appointment. And I let the summer pass before I care about it. He's for next week. I returned to do an MRI in September 2020 and a priori, everything is stable. I am a little disappointed, I hoped a regression. Suddenly, I am worried: the meningiomas do not regress but could they not grow?

In the meantime, I saw my gynecologist, which I really appreciate but which seems to me to justify herself without stopping and remind me that she had warned me of risks: fear that I file a complaint? For the moment, I am not at all with this in mind ...

She advises me to claim the images that the neurologist did not give me by making a registered letter and by invoking the obligation that doctors have to transmit the medical file. For the record, I still called all these people before to claim my DVDs.

Péronne's radiologist retired. The secretariat tells me to call the hospital. The Saint-Quentin hospital sends me back to the radiologist and the neurologist is absent subscribers. I therefore make 3 recommended letters: one to the radiologist of Péronne, one at the Saint-Quentin hospital and one to the neurologist.

Race assessment: I receive the DVDs by the Saint-Quentin hospital with, a few days later, an invoice of 8 euros in reproduction costs to be paid !!

But I will therefore introduce myself to my dear Antoine on October 15 (yes, I call it affectionately by his little name, my dear neurosurgeon) with a complete file and a host of questions for this 2nd ^appointment .

I have no particular symptoms . Since the Androcur stop, and passed the withdrawal period, I have even been in good shape. I gained weight, of course, but I have morale.

Case to follow then ...

Addition of 09 May 2023:

Note from the association : According to the studies published (but others will seem in the coming months), 95% of meningiomas stabilize or regress the cessation of treatment. The regression is therefore not always there, and it can happen a few years after stopping treatment. And we note that 5% of meningiomas continue to grow.
However, the main point of this data is that, if the meningioma does not create by symptoms, we can hope that it stabilizes (or even that it regresses in the best of cases), but above all not to count on a slow but inevitable progression of meningioma, which would therefore require an operation, as is the case for non-hormian-dependent meningiomas.

Other testimonies here