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Kay Kays | A 28 Year Pancreatic Cancer 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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21 thoughts on “Kay Kays is Among The World’s Longest Survivor of Pancreatic Cancer”

  1. KA says:

    I would love to meet with Kay face to face to discuss her journey .. ♥️

  2. Karen Vuillermet says:

    My husband was just diagnosed with Stage 4 metastatic Pancreatic Cancer and I would like to ask her questions, pleas.

  3. Muskan says:

    My husband is detected with last stage of pancreatic cancer can you please answer my questions

  4. Pamela Jones says:

    Test results not looking good. I want to live!

  5. Stephanie says:

    Thank you for sharing your inspirational story of hope and perseverance!!

  6. Pam Z. says:

    Where is Dr. Von Hoff located?

  7. Wardah says:

    I’m also a pancreatic cancer patient. It’s been 6 years since doing my whipple surgery. Done 20cycles of chemotherapy and radiotherapy. Was not an easy one I admit. I’m still a survivor by the grace of God. God bless you all who are suffering and I wish you all a speedy recovery. Do not lose hope. Lots of love

  8. Chris says:

    My husband was 49 when diagnosed and he was in remission for 12 years without having the Whipple procedure. It returned and he was gone in 18 months. We packed a lot of life into those 12 years! May God continue to bless you.

  9. Tom Burke says:

    I just passed 13 years; 10 months!! Congrats to all the PC patients/warriors/survivors!!

  10. Tom Burke says:

    I’m also a 4 year prostate cancer survivor!

  11. Benazir says:

    Where is Dr.Von Hoff located

  12. Verdonna says:

    How can I contact Kay Kays and where is Dr. Von Hoff located?

  13. Barb North says:

    What stage was Kay’s pancreatic cancer when first diagnosed in 1994?

  14. Marina says:

    Chris. Im sorry to hear your husband passed but remarkable he survived so long without whipple i have stage 3 , what treatments did he have that gave him the 12 yrs. I may have a shot at surgery but not guaranteed. As I just did proton radiation any advice from survivors that did not get whipple?

  15. Lorraine says:

    Tom Burke, how did you find you had it and what did you do and take?

  16. Eleni says:

    I need to know the same

  17. Elise T says:

    Dr VonHoff does not see patients however. Dr Borazanci see patients and works alongside Dr VonHoff.

  18. dr Jillawar says:

    my father sufer from pancreatic tratement cancer

  19. Rachel says:

    Pancreatic cancer my son stage (2) 32

  20. Caroline Monsch says:

    My 44 year old son was just diagnosed with pancreatic cancer he has always been healthy he starts chemo in 2 days trying to stay positive he has the best oncologist in the state of ohio this is a horrible disease prayers to all

  21. Laura says:

    I’m was diagnosed with stage 4 PC. The only treatment offered was high dose chemo. I could barely spell the name of the treatment. They sent me home with a thick package of information on the chemo name with ingredients I’ve never heard of and all the side affects.
    This would kill me sooner.

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