Kay Kays: One of The World’s Longest Living Pancreatic Cancer Survivors

Diagnosed: 1994 at Age 44
Survivor: A 25-Year Survivor

Kay KaysIt was 1994 and I was 44 years old when this cancer was discovered in the head of my pancreas. No one was looking for pancreas cancer because the stereo-target was 50-80. Today new Mayo research shows to be looking between the ages of 40-60.

I thought I was a lucky duck when I was told it wasn’t gallstones. What did I know…then I thought the tough part was learning to spell pancreatic…I had no idea. Several have said hearing the cancer diagnosis was like a deer in the headlights….I think it was more like being hit by a freight train when told I had pancreatic cancer.

I qualified for the Whipple procedure (later learning that only 20% were able to have this extensive surgery of re-plumbing the digestive system), and was then diagnosed with cyst mucinous adenocarcinoma….a rare slow growing pancreatic cancer. At that time, there was no standard of care treatment for this devastating cancer ….so I had no chemo…no radiation.

Only the head of my pancreas had been removed and I was told that if my cancer came back to my pancreas that I would probably die…you can’t live without a pancreas. The information concerning pancreatic cancer was sparse and education for patients was just ignored. The reading material I obtained at that time from the American Cancer Society only told me that most pancreatic cancer patients die in 4 -6 months.

Throughout the diagnosis, surgery and recovery, I experienced the love of God in ways deeper than I had ever experienced it before. For 5 years I lived by faith, hoping for the best, but preparing for the worst. I learned from the Wellness Community how to be patient-active and part of my healthcare team….the  will of the patient with the skill of the physician. This was not easy for me. I was not brought up to get second opinions, ask questions, and switch doctors if I was not happy with my care.

Ready to celebrate my 5 year of unexpected survival…pc was found again in my remaining pancreas. I was able to have my pancreas and spleen removed by a GI transplant surgeon and live to talk about it. I was feeling so very blessed as I did my first follow-up CT Scan….only to find out I had another metastasis on the lymph node very close to the aorta. Pancreatic cancer normally will metastasize to the lungs, liver, and lymph nodes.

After 2 reputable consultations , I was declared inoperable in Arizona. I was referred at that time by Dr. Daniel Von Hoff at AzCC (now Physician-in-chief with TGen) to consult with the Pancreatic Cancer Tumor Group, at MD Anderson in Houston, Texas for a surgical consultation. I went under their pancreatic protocol for 6 months of Gemzar (refused radiation)….and went straight to surgery in Phoenix. My CA19-9 (an unreliable, but used pc tumor marker) went from 9000 to 13…the standard range being 0-34. For the 3rd time, I was in the No Evidence of Disease mode.

The next 3 years went well for me until a small spot was found on my lung and my oncologist suggested watching it for a year with 3 month interval testing. It was only a centimeter, but I had heard a renown pancreatic researcher from John Hopkins say that a centimeter could be a death sentence to a pancreatic patient and I wanted to move forward….my patient-active mode kicked in once again. After seeing 3 additional doctors, I finally got a biopsy only to hear…we guess you know your body better than we do, it is pancreatic cancer. After consulting with trusted sources, several weeks later I had the lower right lobe of my lung removed.

The Pancreatic Cancer Action Network was started by several pancreatic caregivers as a small 501(c) in 1999. It fulfills its mission through a nationwide network of people dedicated to working together to advance research, support patients, and create hope for those affected by pancreatic cancer. I personally have seen PanCAN continually grow as a professional, organized, and caring organization. Their message being…KNOW IT, FIGHT IT, END IT! They have published some outstanding brochures specifically for pancreatic cancer awareness, nutrition, clinical trials, and hospice. Their help has been priceless in my journey.

The top 5 cancer deaths come from lung, breast, colon, pancreas, and prostate. Pancreatic cancer is the only cancer in the top 5 to have NO easy early detection and yet its research continues to be the least funded among the top cancer killers. We have not seen a meaningful change in survivor ratios in the last 40 years….it is unacceptable that this cancer is a death sentence. Symptoms of pancreatic cancer are – weight loss, no appetite, fatigue, abdominal pain radiating to the back, jaundice, and itching…don’t be afraid, but do be aware.

Through pancreatic cancer research funding and clinical trial participation more progress can be made towards early detection, enhanced treatment, extending quality of life and one day, an eventual cure. My personal thanks to the Seena Magowitz Foundation in supporting Global Cure for pancreatic cancer at Translational Genomics Research Institute to benefit patients and families dealing with this complicated and ignored cancer.

Kay Kays Interview in July, 2012

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