“Enjoy life. Love. Laugh. Be a little crazy. Reach out to others.
Live without regrets and keep looking forward.
Be brave warriors.”
Sarah was a healthy, fun-loving teacher, wife, and mother of two beautiful boys, ages 3.5 years and 9 months. In December 2016, at just 32 years old, she developed facial acne and made an appointment with her dermatologist. Before her visit, she noticed some facial hair, swelling in her face, and slight weight gain. The dermatologist ordered some blood tests and referred Sarah to an endocrinologist. Within a week, the doctors had identified a tumor the size of a grapefruit on her right adrenal gland and Sarah was scheduled for surgery.
Due to the rarity of ACC, local centers have limited to no experience treating this aggressive disease. Sarah traveled from her home in Hilton Head, SC to Boston, MA for evaluation at the Dana-Farber Cancer Institute. The treatment plan called for Mitotane, a chemotherapy drug in pill form. The extraordinary team of oncologists and endocrinologists from both states collaborated to allow Sarah to carry out the treatment plan at home with her family in South Carolina, with frequent trips to Boston for follow up scans and evaluations.
The scans in July 2017 showed further growth of the liver tumors and the development of a tumor in the lung. Sarah embarked on a new treatment plan of immunotherapy, but by October 2017 the cancer had spread, and when it was determined that no further treatment options were available, Sarah began hospice care. Sarah passed away on October 17, 2017.
Sarah did not smoke or have any of the risk factors for ACC. Unfortunately, her story is not that unusual for ACC patients. The majority of patients with ACC are not diagnosed until the cancer has reached stage III or IV. Adrenal cancer often has no obvious symptoms in its early stages. Sometimes, the symptoms that first present in patients are so commonly associated with other, more benign conditions in adults that the possibility of an adrenal tumor is overlooked. The location of the adrenal gland lends itself to undetected growth; the tumor can grow very large before affecting local organs or causing pain. This is why a large number of ACC patients report being diagnosed "by accident" after the tumor is identified on image testing conducted for another organ or suspected disease.
Awareness is the KEY. The Sarah Pauline Gonsalves ACC Memorial Fund's mission is to increase awareness of this rare, aggressive cancer, and financially assist those who are waging their own war against ACC.