My name is Sandra, I’m 40 years old and I live in France. On the eve of my 35th birthday I was diagnosed with adrenocortical cancer (ACC), a rare cancer affecting less than one in a million people.  Since that day (and even before), my journey has been one of struggle, perseverance, and eventually, advocacy. I hope my story can shed light on this orphan disease, inspire others amid similar battles, and remind patients that their voice matters

A misunderstood beginning: the road to diagnosis

For two years, I faced therapeutic wandering and medical gaslighting. I had unexplained symptoms including weight gain, hair loss, and irregular periods. My concerns were dismissed. I was told to eat better, to lose weight, to solve my problems. Like many patients we are told that we are at fault—that we need to do more and be better.

It wasn’t until a blood and further urine test showed dangerously high cortisol levels that I was finally diagnosed with Cushing’s syndrome. That diagnosis was a relief—at last, there was proof I wasn’t imagining things. It brought mixed feelings. Relief at being believed after all this time, but with a sense of blaming myself for not insisting enough on what I knew all along. But even then, the doctors didn’t suspect adrenocortical cancer (ACC) right away. What were be the odds, right? Plus, my symptoms were not that alarming.

I’ll never forget the moment when it all changed for me. I had just been released from the hospital suitcase in hand, when my phone rang. It was the hospital. The images of the MRI I had that morning showed a mass on my adrenal gland. I was told to return the next day. Within 10 days I had surgery—right in the middle of Christmas 2017.

The surgery that followed was more complex than anyone had anticipated. The tumor had invaded my vena cava (the large vein that carries deoxygenated blood to the heart), and the surgeon had to cut six centimeters of it away to ensure clean margins. He saved my life twice that day—once by removing the tumor, and again by managing to keep me alive on the operating table. Afterward, I spent a week in intensive care.

ACC: an unexpected turn

The first words you may read on any medical publication are that adrenocortical cancers are “rare”, “aggressive” and “deadly”. Given that my cancer was advanced, the prognosis did not look good on paper.

The age of 35 is typically a time when you’re settling down both professionally and personally (marriage, children, owning a house…). While I saw my friends moving on with their lives, I was stuck between medical appointments and work.

Living with a rare, invisible illness

When you have a rare illness like ACC, you don’t fit into any box. People don’t understand your condition and most doctors are often at a loss. I had to become an expert on my own illness—reading medical journals, setting up alerts for new research—all to get answers.

When your disease is unknown to the public, more than explanation you often need to give justifications. More than once, I had to justify myself:

“How can you have cancer/be undergoing treatment and still work full time?” Those same people concluded that “I wasn’t really sick”—I couldn’t possibly have cancer because the way I looked did not fit their expectations.

I may not look like a poster girl for cancer, but it doesn’t get them the right to deny my condition (and with that the difficulties, the pain, the hardship that I face every day). If you’re not losing hair or weight, that means everything’s fine, right? You’re not really ill—it’s not that bad. When people (even close ones) don’t see you as ill, they end up forgetting or not even thinking that you are.

I also had to face comments on my pain level.  As extensive as the surgery was, it left me with chronic pain, the origin of which cannot be found. One time during a hospital stay, a doctor within the pain management unit said to me, in front of everyone, that I was making it up. These words still haunt me four years later. I cried on my hospital bed harder then, than when I was first told I had ACC.

The emotional toll of a rare illness

That kind of trauma leaves a deep scar and navigating rare and invisible illnesses along with my cancer diagnosis took an immense toll on my mental health state. I often emphasise this aspect during appointments with doctors or professionals in the medical community. In my opinion, it’s a point that’s still too often neglected, especially for people with rare diseases and invisible illnesses. Our burden is heavier by those two facts alone—rare and invisible.

Turning pain into advocacy: founding Let’s Cure ACC

Realising that others faced similar struggles all over the world, I co-founded the first international patient association dedicated solely to adrenocortical cancer, Let’s Cure ACC. Through this organisation, we aim to provide support, raise awareness, and advocate for better resources for patients. We know that the more we are in number, the less we can be ignored. Here lies a great battle for rare diseases: to become united so we are a larger group that can’t be ignored.

The patient’s voice is often not listened to or minimised, that started for me from the very first days of my medical journey. I have so many stories I could fill a book, but the one I would like to tell is about pain. I knew from the start that the amount of pain I was enduring was not normal and I said it to the doctors right away. But nothing can be seen, and it is based on the patient’s feeling and perception. So, I was told that I was being difficult, picky, complaining too much, needed to wait, asking for too much…

One of the biggest lessons I’ve learnt from my journey is the importance of speaking up. Patient voices need to be heard. To do so, patients need to speak up and need to overcome the fear, the politeness and be empowered.

I want to encourage others to advocate for themselves, ask questions, and demand answers. It’s our bodies, our lives—our right to fight for better care and understanding. Diseases like ACC are often under-researched, and patients can feel like they’re navigating a maze without a map.

Today, my road to recovery is far from over. Recovery is slow, and the road ahead is long, but I’m determined to make it easier for others. My hope is that by sharing my story, I can help others navigate their own health battles and avoid some of the difficulties I faced. What I’ve learnt the hard way, I now want to share with those who need to hear it. Together, we can make a difference for rare and invisible illness patients—because no one should have to face this battle alone.

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