Dear Friend,
If you’re reading this, it probably means you or someone you love has heard the words adrenocortical carcinoma (ACC) — a rare and serious diagnosis. I still remember the moment I heard it. I had never even heard of this cancer before, and suddenly, I was living with it.
My doctors told me that Mitotane would be part of my treatment plan. I remember looking it up, trying to understand what it was, what it did, and—truthfully—what it might mean for my future. It was overwhelming. But I also learned that Mitotane is one of the few drugs specifically designed for ACC, and that gave me some sense of direction in a world that had suddenly become very uncertain.
The treatment hasn’t always been easy. There have been side effects—fatigue, changes in appetite, nausea at times—and I’ve had to be monitored closely. My doctors adjusted the dose carefully and regularly checked my blood levels to keep things in a safe range. I also needed steroid replacement therapy, because Mitotane can affect how your adrenal glands work.
But through it all, I’ve felt supported—by my medical team, my family, and by the knowledge that I was actively fighting back. The uncertainty is still there sometimes. That’s part of living with a rare cancer. But I’ve come to appreciate every stable scan, every day I feel well enough to cook dinner or go for a walk.
To anyone just beginning this path: take it one day at a time. Ask questions. Let people help you. And know that it’s okay to feel scared or tired—you’re not alone in that.
Mitotane isn’t a cure, but for many of us, it’s a tool that gives us time—time for treatment, time for hope, time for life. And for that, I’m grateful.
With strength and solidarity,
A fellow patient
