Advocating For My Own Future

Kay Kays

Stewart Williams; Flickr

• Whipple procedure to remove tumor
• Five years later, tumor returns and the rest of my pancreas is removed
• Metastasis on my aorta leads to treatments with Gemzar before another surgery
• Three years later a lung metastasis necessitates lung lobe removal
• Life as a patient and research advocate

I am a 23-year survivor of pancreatic cancer.

It was 1994, and I was 44 years old. I had been losing weight, was fatigued, and had pain in my abdomen, which I thought was gallstones. When I was told it was pancreatic cancer I was very scared—I didn’t know much about pancreatic cancer at that time.

First Treatment

I qualified for the Whipple procedure, so I had surgery with Dr. Lawrence Koep (now retired) a transplant surgeon, to remove the head of my pancreas. After surgery I was diagnosed with mucinous cystadenocarcinoma, a rare slow-growing pancreatic cancer. At that time, there was no standard of care treatment for this devastating cancer, so I had no chemotherapy or radiation. I was told that if my cancer came back to my pancreas that I would probably die because you can’t live without a pancreas. There was very little information for pancreatic cancer patients; material from the American Cancer Society said that most patients die within four to six months.

For the next five years I lived on faith, knowing only that I had outlived most pancreatic cancer patients. I was hoping for the best, but preparing for the worst. I joined the Wellness Community (now called Cancer Support Community) where I learned 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 to do. I was not brought up to get second opinions, ask questions, and switch doctors if I was not happy with my care.

Cancer Returns, and Returns

I was getting ready to celebrate five years’ survival when cancer was found in the remaining part of my pancreas. Thanks to research advances I found out that I could survive without a pancreas. My pancreas and spleen were removed by Dr. Koep. This meant that I was now insulin-dependent and required digestive enzymes.

I was feeling so very blessed to be able to continue on, but at my first CT scan follow-up a metastasis was found, on the lymph node very close to the aorta. I consulted two reputable oncologists in Arizona, where I live; both declared that the metastasis was inoperable.

Dr. Daniel Von Hoff, then at the University of Arizona Cancer Center, suggested that I go for a consult to the Pancreatic Cancer Tumor Group at MD Anderson in Houston; in 2002 it was the only hospital with a pancreatic-specific group. My husband and I were reluctant, but my cancer support group encouraged me to go. So we did. I was given some research options and some HOPE by the head surgeon of the pancreatic group. He worked with my oncologist in Phoenix with a proposed experimental treatment to shrink the tumor. I was given six months of Gemzar (which was relatively new at that time). My CA 19-9 (a pancreatic cancer tumor marker) went from 9,000 to 13. I WAS declared operable and had my lymph node mass removed by Dr. Koep. For the third time, I was in the No Evidence of Disease mode.

The next three years went well for me until a small spot was found on my lung. My oncologist suggested watching it for a year with testing every three months. The spot was only a centimeter, but I had heard a renowned pancreatic cancer researcher from Johns Hopkins say that a centimeter could be a death sentence to a pancreatic cancer patient. Patient-active mode kicked in once again and I wanted to move forward. After seeing three additional doctors, I finally had a biopsy. When I got the results, the doctors acknowledged that “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 by thoracic surgeon Dr. Camilla Mican.

Although I am feeling well, I have very small nodules on both lungs; the nodules have not grown in several years. When I found out about the nodules I immediately contacted the HonorHealth Research Institute (in partnership with Translational Genomics Research Institute), where expert second opinions can be obtained for pancreatic cancer. They are part of my healthcare team because I know the importance of research in fighting this terrible disease. They were concerned and ordered a CT scan and genetic testing. It was agreed to stay on a six-month follow up schedule, for now.

Besides the recent genetic testing, I have participated in a Target Now clinical study, and had next-gen sequencing twice, to learn more about my DNA and RNA.

My Life as an Advocate

I have become very active in the pancreatic cancer advocacy community as a patient advocate, in support groups and in the research community. Through Cancer Support Community I initiated the first pancreatic network for patients in Arizona; my group is now celebrating 13 years of activity.

Knowing the need for patients to be aware, and not afraid of cancer research led me to exploring the role of a research patient advocate. My educational training is ongoing from cancer research conferences, and talking with patients from the real world of cancer. Today I serve as a patient research advocate and grant reviewer, with a special interest in clinical trials and tissue banking, for the National Cancer Institute, Department of Defense, University of Arizona Cancer Center, Translational Genomics Research Institute, Gateway for Cancer Research (associated with Cancer Treatment Centers of America), American Cancer Society, Pancreatic Cancer Action Network, Patient Centered Outcome Research Institute, and the Alliance for Clinical Trials in Oncology.

When I speak to researchers about the needs for patients I say only partly in jest, “PLEASE find something soon . . . I am running out of body parts.”