First alert.  “The Androcur was prescribed to me by my gynecologist from 2005 as a contraceptive but above all to treat a hormonal acne. In the summer of 2018, Social Security set up a telephone number for patients under Androcur. It alerted me, I immediately called. But the interlocutor did not seem to know the file and could not answer any specific questions. He simply sent me back to my prescribing doctor. At the time, I already had headache regularly, more frequently and more prolonged than in the past. But also tinnitus and a decrease in vision. I did not make the link with a meningioma potential. I told myself that at 40, it was normal ”.

Androcur? "Dreaded efficiency". “With this alert on the alleged harmful of Androcur, I wanted to stop. I made two attempts, including one very progressive. But each time, I ended up with terrible pain in the belly, inflamed rashes ... I kept two months and ended up resuming treatment. It must be recognized that this drug is of formidable effectiveness and that it brought me a real comfort of life after several pills which did not suit me. For her part, my gynecologist told me not to worry, that the dosage I took was light and that I could continue up to 50 years. She added that lots of patients have been taking Androcur for much longer without it posing the slightest problem. ”

A huge mass of 6.3 cm in the head . “In June 2019, I received a letter from the National Medicines Safety Agency (ANSM) which invited me to get closer to my prescribing doctor and recommended the passage of an MRI. So I returned to see my gynecologist, whose speech had then completely changed: she prescribed an MRI and indicated that I should sign a discharge to continue taking the Androcur in case the results do not reveal meningiomas. But she also told me to continue treatment until examination. On August 13, when I announced the results of my MRI, the radiologist first asked me if I was a epileptic. Surprise, I replied that no. He then told me that I should be, given what I had in the skull: a huge protean mass in the 6.3 cm front lobe and a smaller, 2.3 cm, at the back of the skull. With the mass effect of the biggest meningioma, the axis of the brain was deflected. Which explained headaches, tinnitus and, the front tumor being near the optic nerve, vision disorders. ”

The support of other patients . “The shock of the announcement was terrible. I even had a period of denial: I did not think it was possible to have something in my head this size. I found comfort and precious advice on administrative procedures (including ALD recognition) and the choice of doctors specialized on the Facebook page of the Amavéa association. A formidable page, where everyone shares their doubts, their anxieties but also their hopes. New testimonies of women returning from their MRI arrive almost every day. Some have up to ten meningiomas, smaller, dispersed in the brain. Some others, like me, have meningiomas over 6 cm ”.

In the emergency room . “On September 18, in the morning, I felt intense headaches. Impossible to get up. The pain was nailed to me. I felt like my head was going to explode. Throughout the day, I could only make a phone call, to my employer to warn him of my absence. I couldn't call anyone else. The next day, I was still in the same state. I ended up succeeding in reaching my father, who led me to the emergency room of Guingamp hospital. The scanner I spent there revealed that my two tumors had caused edema, which compressed my brain in the cranial box. I was put under cortisone, which gradually allowed it to absorb it. In parallel, the Guingamp hospital contacted that of Lariboisière, in Paris, to advance my appointment scheduled three months later with Professor Froelich, head of the neurosurgery department. I was able to meet him fifteen days after ”.

The risks of the operation . “What is terrible with meningiomas are the reactions of others. Generally, it is: "Phew, it's not cancerous, so everything is fine!" ». While in fact, these meningiomas, described as benign tumors in medical language, are far from harmless. They can destroy a life. We risk stroke, epilepsy crises ... and, depending on the size and location of these brain tumors, the risks of an operation are major: loss of the use of a member, the view of an eye, speech difficulties ... In my case, if I had to undergo an operation, there would be significant risks of the lesion of motor functions on the right side and impact on that of language. I therefore base all my hopes on the regression of the tumor thanks to the cessation of treatment. If the symptoms are bearable, it is possible to live with it. I don't want to risk being disabled for the rest of my days. Besides, after four months of Androcur stop, my smallest meningioma was clearly narrowed. The most important seems to stabilize ”.

Professor Froelich . " Emmanuelle Mignaton, president of Amavéa , recommended me, given the size of one of my two meningiomas, to make an appointment with him. Head of neurosurgery at Lariboisière Hospital in Paris, he was the one who established the link between Androcur and Méningiomes, in 2008. He set up the victims of Androcur in his service, once a month. He does not operate almost any of his patients, because he found that tumors regressed or stabilized when you stop treatment. It does not consensus within the medical community, since other neurosurgeons operate systematically. He also told me that given the size of mine and the edema they had caused, in another hospital, I would have been operated the next day. ”

I psychote as soon as I come up against a word. "Before, when I had a headache, I put it into perspective, telling myself that it was fatigue or stress. And then, there are few who never have migraines ... Now, I necessarily psychote a lot. As soon as I come up against a word or I have a memory hole, I think Meningioma. It is an almost permanent mental charge ”.

A legal action against Bayer? “For the moment, I am focused on my care path. But then I will have no qualms. They did not have one. They were satisfied with a simple mention at the bottom of the medication manual, which has completely unnoticed in the eyes of all those who use it on the long term. If an MRI had been prescribed to me in 2010, when I had taken the Androcur for five years and my meningiomas must have been the size of a hazelnut and a coffee bean, I would obviously have stopped treatment. And would not risk, today, an open skull operation, epilepsy or stroke. I believe that it is a loss of huge recovery ".

Emilie -40 years -14 years old of Androcur -2 meningiomas

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