Kay Kays: 25 Year Pancreatic Survivor

One of The World’s Longest Living Pancreatic Cancer Patients

Diagnosed: 1994 at Age 44
Survivor: Still In Remission

Written By Julia Brabant
October, 2019

In comparison with the four other forms of cancer that claim the most lives, pancreatic cancer is the least-funded and toughest to detect, but this wasn’t something Kay Kays planned to sit back and accept.

One of the longest-living pancreatic cancer survivors out there, Kay first began battling the deadly disease back in 1994, after suffering severe back pains. Initially, she was thrilled to find out she wasn’t dealing with gallstones, but her joy was short-lived, and she soon learned, thanks to the help of some diligent interns, that what she had was pancreatic cancer. Likening the diagnosis to “getting hit by a freight train,” she had little time to let the news sink in before finding out she was a candidate for the Whipple procedure, which involved, as she put it, an “extensive re-plumbing of the digestive system.”

Soon after having the head of her pancreas removed, she learned that she not only had pancreatic cancer, but that she had cyst mucinous adenocarcinoma, a rare, slow-growing form of the disease for which there was no form of treatment available. Without chemotherapy or radiation as viable options, Kay’s doctors told her that, should her cancer return, she would likely succumb to the disease within four to six months.

Five full years passed before Kay found out that cancer had, in fact, returned to what remained of her pancreas, at which point she had both her pancreas and spleen removed. She felt hope for the first time in a long time, but that hope was short-lived, and she soon learned that the cancer had metastasized to her lymph nodes. At this point, doctors deemed her inoperable, but after reading an article in a newspaper about pancreatic cancer researcher Dr. Daniel Von Hoff, she made an appointment to meet with him and ultimately ended up signing on as one of his first targeted therapy patients.

Three years later, her cancer reemerged in her lung, and she ended up having a portion of it, too, removed. Now, 25 years later, she may not have a pancreas, spleen, gall bladder or a full lung, but she has something arguably just as invaluable: hope. She’s also become an ardent patient advocate, helping patients come to terms with their diagnoses and treatments while touting the work of Dr. Von Hoff.

“The man is a bulldog,” she said, noting that he’s known for pulling out chairs for his patients and urging them to call him “Dan.” “He’s not only a fantastic researcher, clinician and mentor… he’s a fantastic patient advocate. He’s more patient-oriented than any doctor I’ve ever met.”

“I’ve survived a very long time after first being diagnosed with pancreatic cancer. It is important that my story is being told because people need to know that a diagnosis of the worst of cancers does not mean an automatic death sentence. Patients are living longer and longer as medical advancements are occurring at a more rapid pace. Sustaining hope and courage is so important.”

– Kay Kays

Kay Kays Interview in July 2012

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