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Kay Kays is a 31-Year Survivor: The World’s Longest Survivor of Pancreatic Cancer
Julia Brabant, October 2024Kay Kays is a 31-Year Survivor: The World’s Longest Survivor of Pancreatic Cancer
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, 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. She soon learned, thanks to the help of some diligent interns, that she had 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, Kay 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.
Kay emphasizes the critical role that research plays in fighting cancer and encourages patients to explore all available treatment options…
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, Kay made an appointment to meet with him and learn more about potential treatment options that might not have been available when she received her initial diagnosis.
“The man is a bulldog,” she said. “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.”
About eight years after her initial diagnosis, Kay took advantage of one of those novel treatment options and underwent “neoadjuvant” chemotherapy, or taking chemo drugs before surgery, rather than after, using the drug gemcitabine. At the time, there were very few clinical trial options available due to a funding shortage, making Kay’s access to this treatment especially significant. The neoadjuvant therapy had its intended effect and shrank Kay’s lymph node tumor to the point where doctors could remove it.
Several years later, Kay’s cancer reemerged in her lung. She ended up having a portion of it removed. Now, 31 years after her initial diagnosis, Kay 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, navigate their treatment journeys and stay informed about new developments in pancreatic cancer treatment and care.
Kay emphasizes the critical role that research plays in fighting cancer and encourages patients to explore all available treatment options, including clinical trials.
“Clinical trials should be your appetizer in your treatment, not your dessert,” Kay said, of the importance of exploring research studies that test and assess new treatments, drugs, vaccines and care approaches. “Some are just studies – they aren’t all treatments.”
Kay notes that clinical trials should be a key consideration early on, because, in some cases, having chemotherapy or radiation beforehand can make people ineligible to participate in certain trials.
“As patients, we have to help,” she said. “We have wonderful researchers, but we have to know about these studies and help them out. Without them, we might not be where we are today. We need that information to end this cancer.”
Staying Vigilant in Survivorship
Kay’s advocacy work extends beyond encouraging people to consider clinical trials and find care teams they believe in, although those are certainly important aspects of it. She also urges others with pancreatic cancer to push their care teams for follow-up appointments, even if their medical teams don’t insist upon it.
“You need to really push for follow-up,” she said, noting that after 12 years without evidence of disease, recent bloodwork showed enlarged lymph nodes. While Kay doesn’t have any other notable symptoms, she recognizes the importance of staying vigilant and not ignoring those that may seem minor.
Often, once a patient surpasses five years of survival, their doctors no longer insist that they have annual checkups. Despite having 31 years of survivorship under her belt, Kay still insists on regular checkups, noting the unpredictable nature of pancreatic cancer and acknowledging that proactive monitoring is necessary for both catching recurrences and maintaining peace of mind.
Kay also encourages people with pancreatic cancer to keep a close eye on other aspects of their health that may have ties to pancreatic cancer, like their heart, eye and brain health.
"I see a cardiologist; there’s now a lot more attention given to how pancreatic cancer is watched by cardiologists."
“I see a cardiologist; there’s now a lot more attention given to how pancreatic cancer is watched by cardiologists,” Kay said. “This is one of the things that I know, as a survivor, that I need to keep an eye on.”
While more research is necessary to study the link between pancreatic cancer and heart health, cancer-related issues like inflammation, malnutrition and chemotherapy side effects can all raise the risk of certain cardiovascular issues. Some people with pancreatic cancer also develop certain heart-related complications like thrombosis and venous thromboembolism, further highlighting the importance of collaboration between oncologists and cardiologists.
Kay also closely monitors her skin and has had three melanoma removal procedures in recent years. She notes that there is a common gene, p53, between pancreatic cancer and melanoma and that melanoma is particularly prevalent among people with this type of cancer.
Kay also encourages cancer patients and their caregivers to recognize that many of the long-term beliefs people hold about pancreatic cancer treatment and care no longer apply. For example, some doctors have historically advised patients against getting CAT scans due to fears about the risk of radiation. However, Kay was told that improvements to equipment and imaging software have reduced risks and improved diagnostics, paving the way for earlier detection and more effective treatment options for patients.
There is no cure, but we can make this a chronic disease.
Raising Awareness & Funding for Research
While Kay frequently speaks with pancreatic cancer patients on a one-on-one basis, she’s also taken her advocacy efforts to a broader stage. She initiated the formation of the first disease-specific specialty group of its kind in the state in 2003, and she regularly partners with other nonprofits and research organizations to host fundraisers and raise awareness.
She is also a regular speaker and fixture at Seena Magowitz Foundation events, including 2024’s Power of Us fundraiser in Milwaukee, Wisconsin. Kay will also attend the Steppin’ Up Against Pancreatic Cancer fundraising walk the foundation now hosts alongside the HonorHealth Research Institute, with the next edition set for Nov. 2, 2024 at Mountain America Stadium at Arizona State University.
Kay also serves as a patient advocate for a cancer research program overseen by the U.S. Department of Defense, a position she’s held since 2011. In this role, she reviews grant proposals and offers recommendations about where funding for pancreatic cancer will likely make the biggest impact. She also sits on several data and safety monitoring committees for clinical trials for people with pancreatic cancer, helping assess the safety of the trials and identifying those that may cause more harm to patients than good.
“It’s something I don’t think a lot of patients are aware of, but it’s important to know when you’re on a clinical trial that you’re being carefully watched by more than just your dedicated research team,” Kay said.
While Kay’s advocacy work is valuable for patients, it also keeps her looped in on new developments and research in the fight to eliminate pancreatic cancer for good.
“It keeps a smile on my face; I think that’s why I love being a research grant reviewer,” she said. “What I do is look at new, innovative ideas and decide whether they should be funded.”
Kay regularly reminds other people facing pancreatic cancer about these ongoing developments and advancements to make them more aware of their options.
“We have pancreatic cancer expertise we didn’t have before,” she said. “You have options now. There’s clinical expertise and clinical trials that weren’t around before, and that’s a big part of why survivorship went from 3.7% to 13%.”
Kay has also seen progress in terms of support groups emerging that cater to people during different stages of their pancreatic cancer battles. She is one of the hosts of the Seena Magowitz Foundation’s Pancreatic Cancer S.O.S. (Support for Survivorship) group, which provides support specifically tailored toward the newly diagnosed.
“Newly diagnosed people have different needs than long-term survivors,” she said. “Groups targeting the newly diagnosed help people feel free to ask questions without fear. What do I do first? What does ‘standard of care’ mean? How do I move forward? We’re working to get rid of these fears and replace them with faith.”
Kay acknowledges that some areas of pancreatic cancer research are advancing faster than others.
“The one thing I wish was more prevalent is early detection,” she said. “We’re doing very well with our treatments, but we’re still among the top cancers for fatalities, and we have no early detection. As a research advocate, that’s something I want to see. We need to have early detection NOW.”
While pancreatic cancer currently has no cure, Kay has seen firsthand how quickly science and research are advancing toward one.
“There is no cure, but we can make this a chronic disease,” she said. “I’ve proven that, and so have a lot of other survivors.”
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, 31 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.”
