Pancreatic cancer survivor Jon Luedtke shares his journey with the nation’s deadliest major cancer

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My family has long battled pancreatic cancer.

My grandmother lost her battle to pancreatic cancer before I was born. 

My mother was diagnosed with pancreatic cancer at age 36. As with most pancreatic cancer, it was found too late and it had already metastasized to her liver.  As I grew up, I watched her battle. The numerous surgeries, specialists, check-ups…for thirteen years she fought a hard battle against this horrible disease. She passed away at the age of 49. We were fortunate to have her with us for so long; especially because the five-year survival rate for pancreatic cancer is just 9 percent.

After her diagnosis, she underwent genetic testing due to our strong family history. She was diagnosed with MEN 1, a genetic disorder that predisposes to neuroendocrine tumors throughout the body. The chance of inheriting this mutation is 50%. For me, I knew that the possibility of battling pancreatic cancer sometime in my life was very possible. I always prayed I would be fortunate enough to be the lucky 50% that did not inherit it. Unfortunately, that was not the case. I tested positive for MEN 1 in 2012. 

Screening bloodwork and scans became a routine. I was continuously told that, “it's not if you will develop tumors, it’s when and where.” The thought was an ominous threat hanging over my head. I was diligent, but diligence doesn't stop cancer.

I will never forget that phone call three years ago that turned my life upside down. I was sitting on the floor playing with my soon to be two-year-old son, sitting next to my wife, 8 months pregnant with our second child, when the phone rang. It was my gastroenterologist following up on a routine CT scan that took place two days earlier. My heart sank as I found out there was a mass in my pancreas. 

The next three months were spent meeting with doctors, surgeons, having scans and scopes and biopsies, preparing for surgery and meeting my new daughter –  born just 7 weeks before surgery. In May 2014, I had a distal pancreatectomy to remove my primary tumor. Pathology showed it was indeed a slow growing neuroendocrine tumor which had spread to one lymph node in the area, but they were confident they removed the primary tumor. I was lucky, we had caught my cancer early. I was lucky, my cancer was slow growing. I was lucky, I did not need chemotherapy or radiation. I was lucky, I was young and strong. 

The pain was real and intense and the emotional and physical stress at times was more than overwhelming. It was an uphill battle, but one day at a time brought me closer to being myself again. Unfortunately, I developed complications a month following surgery only to be hospitalized with a pancreatic leak and fistula. More home health care, antibiotics, seemed never ending. Again, I was lucky. Four months later, my drain was able to be removed and I was back on the road to healing. Three months later I was back to work full-time. Today, I am doing wonderfully. My latest MRI shows no areas of concern. I am lucky!

I am so fortunate to have a team of doctors who worked so hard to provide me with the best. I am blessed to be surrounded by great family and friends to care for me and lift my spirits up. And I am grateful for the Pancreatic Cancer Action Network (PanCAN) and my PurpleStride family who continue to give me hope. 

The Pancreatic Cancer Action Network is the global leader accelerating the pace of research progress for one of the world’s deadliest cancers. With an urgent mission to improve outcomes for pancreatic cancer patients and double survival by 2020, the organization executes a bold and comprehensive strategy to Wage Hope through research, patient services, advocacy and community engagement. 

PurpleStride is the PanCAN’s signature family-friendly 5K that raises awareness and funds that support the programs of the organization. The event gives me an opportunity to share my story, give and receive support and shine a light on this devastating disease. 

Each day I am grateful for my health, for negative test results and for another day to live this life. I know my battle is not over. I know the odds, but I will fight hard and never give up. I am proud to say that I am a 35-year-old, three-year neuroendocrine pancreatic cancer survivor! 

I know our efforts to raise awareness and funds today, will bring hope to all those touched by pancreatic cancer tomorrow. I urge the Las Vegas community to join me and register for PurpleStride Las Vegas which will take place on Saturday, March 25, at The Green at Town Square. Together, we will Wage Hope for the future of pancreatic cancer.