Patient Experience of Adrenocortical Carcinoma: Views from a Patient, His Physician and a Patient Association

Adrenocortical carcinoma (ACC) is a rare and aggressive form of cancer. This article presents a multiperspective narrative describing the experience of a patient treated for ACC, the clinical insights of an endocrinologist, and the advocacy perspective of "Let's Cure ACC", a patient association. The patient describes his journey from diagnosis to treatment, disease recurrence, and, ultimately, a disease-free state. Diagnosed at age 45 with locally invasive ACC in 2017, he underwent surgery, chemotherapy, and long-term mitotane therapy. He experienced multiple disease recurrences, repeated surgeries, and chemotherapy, and achieved remission in 2020. Today, the patient remains disease free, although continuing to experience treatment-related adverse effects. He shares the challenges of living with ACC and the effects of treatment on his daily life, particularly adrenal insufficiency (a condition in which the adrenal glands do not produce enough cortisol) complicated by recurrent Addison (adrenal) crises (acute adrenal insufficiency caused by a sudden lack of cortisol, requiring urgent treatment to prevent shock or death). These challenges underscore the importance of patient education, family involvement, and meticulous management of hormone replacement therapy. He emphasizes the importance of being managed through an expert treatment center. The endocrinologist provides an evidence-based perspective on treatment decisions, the role of mitotane in long-term disease control, and the need for ongoing replacement therapy with hydrocortisone to manage adrenal insufficiency following extended mitotane treatment. Finally, the patient association representative emphasizes the unmet informational needs of patients with rare cancers and the pivotal role of advocacy organizations in improving patient and physician awareness of ACC, fostering collaboration, and advocating for better education and support for ACC patients and their families and caregivers. Together, these viewpoints emphasize the need to optimize treatment decisions, strengthen patient-physician collaboration, and share long-term insights to guide care in ACC patients with the aim of achieving the best possible outcomes.