Living with Cushing’s Syndrome and Adrenocortical Carcinoma: Ginny’s Journey

After my junior year, I eagerly spent three weeks at a summer camp. We engaged in various exciting activities, yet I noticed unusual symptoms. I perspired excessively, got sunburned despite using sunscreen, and developed acne. My appetite increased notably. Initially, I attributed these changes to frequent outdoor activities.

As summer passed into fall, my symptoms worsened. I stopped menstruating, struggled with insomnia, suffered anxiety, bruised easily, experienced migraines, and gained over ten pounds. These coincided with college application stress, SAT preparation, and a part-time job. I dismissed each symptom as stress-related.

The mental impact was profound. I gained weight and my face changed. Seeing a different reflection, I chose to isolate myself.

‘Scans Showed the Worst-Case Scenario’

Missing a second period prompted me to consult a doctor. A pediatrician suspected Cushing’s Syndrome, a hormonal disorder from cortisol imbalance, based on my facial features. Blood tests, a 24-hour urine collection, and midnight saliva testing confirmed elevated cortisol.

The next step was locating the cortisol source. Most cases stem from benign pituitary tumors, leading to a scheduled brain MRI and endocrinologist visit. Despite health challenges, I submitted my early NYU decision and grappled with school misery.

The brain MRI ruled out a tumor. Abdominal ultrasound, however, revealed a 9-centimeter tumor, prompting additional abdominal scans at a different hospital.

Further scans revealed an 11-centimeter tumor, spread to my liver and lungs, indicating stage 4 cancer. On November 1, 2023, Cushing’s Syndrome was confirmed. By November 28, I faced another life-altering diagnosis: adrenocortical carcinoma, a rare, aggressive cancer affecting one in a million people annually.

The diagnosis left me numb and unable to fully process the situation.

‘Another Scare Just Around the Corner’

We sought a skilled surgeon at Memorial Sloan Kettering in New York City, where I underwent a nine-hour surgery. My right adrenal gland, primary tumor, part of my liver, and diaphragm were removed successfully. Despite the lung issue remaining, I began chemotherapy soon after.

Chemotherapy was harsh. Still, I completed senior year remotely and was accepted to NYU, walking the graduation stage with a chemo pump, earning a standing ovation.

Cancer-free by July 2024, I faced new challenges from gastritis that kept me hospitalized. Fall brought improvements. I deferred NYU admission for a year to reconnect with friends and rebuild my life.

March 2025 brought more change: routine lung scans revealed recurrence. We opted for immunotherapy, gaining extra months, allowing me to begin classes at NYU in Washington, DC.

Another scare emerged with a 10 cm heart-adjacent tumor discovery. Surgery removed six lung tumors, but left the heart tumor intact, necessitating immediate radiation and school interruption for breathing issues.

Currently, I’m part of an NIH clinical trial, receiving infusions every three weeks, balancing NYU sophomore year and travel for treatment.

‘Living With Cancer to the Best of My Ability’

Each treatment brought side effects, notably chemo-induced peripheral neuropathy affecting my hands and feet. Despite limitations in movement, I strive for happiness despite cancer persisting in my lungs and liver.

I cherish time with friends and family, enjoying life’s simple pleasures. Cancer expands your perspective, introducing new experiences and connections.

My advice: heed your body’s signals and advocate for medical attention. Ignoring symptoms might have cost me my life. With even daunting diagnoses, meaningful happiness is achievable.

Virginia Hooper, known as Ginny, resides in Northern Virginia, frequently traveling to Washington and Maryland for medical care. She shares her cancer journey on Instagram (@_ginnyhooper_) and TikTok (@ginnyhoop) to educate and inspire.