Reclaiming my life after a rare stage IV neuroendocrine tumor diagnosis

I’ve known six people who have died of pancreatic cancer, including my own dad in 2015. So, when I was diagnosed with that disease in June 2018, my first thought was: “I’ve got to get to MD Anderson.”

I live about an hour north of Dallas, close to the Oklahoma border. But I knew the six-hour drive to Houston would be worth it, because all MD Anderson does is cancer. It offers specialized treatment from doctors who are experts. So, that was the only place for me.

Today, I’m convinced that if hadn’t been for God and MD Anderson, I wouldn’t still be here. Because it was there that I discovered I actually had a stage IV neuroendocrine tumor of the pancreas — and that it was treatable.

Pancreatic cancer experts at MD Anderson offered encouragement

The first doctor I met with at MD Anderson was surgical oncologist Dr. Matthew H.G. Katz, who specializes in pancreatic cancer. My wife and I had a million questions. The most important one was, “How long do I have to live?” Because my father only lasted about 10 months after his pancreatic cancer diagnosis, and a friend of mine only lasted about 60 days.

Dr. Katz didn’t feel comfortable speculating about that, but he did tell me not to worry. He said, “Look: we’re going to do some more scans and run some additional tests to figure it out. We’ll take care of this.” And, as it turns out, he was right.

Corrected diagnosis took me from terminal to treatable

The first thing Dr. Katz did was send me to a colleague, gastroenterology specialist Dr. Jeffrey H. Lee. This was for a fine needle biopsy to confirm my pancreatic cancer diagnosis.

I was out running errands with my wife when the results came back. I’ll never forget that day, because Dr. Katz didn’t ask one of his nurses or assistants to deliver the news. Instead, he called to tell me himself. He said, “Look: it is cancer, but it’s a neuroendocrine cancer and it’s treatable.”

I didn’t understand then that there were different kinds of pancreatic cancer. I just focused on the word “treatable.” Dr. Katz explained that 95% of people with pancreatic cancer have a type called adenocarcinoma. That’s the one my father had. The other 5% have neuroendocrine tumors of the pancreas. And that’s what I had.

By the time I was diagnosed, the cancer had already spread from my pancreas to my stomach, colon, liver and spleen. Dr. Katz recommended surgery to remove as much of the growth as possible, followed by additional therapies suggested by Dr. Daniel Halperin, a neuroendocrine tumor specialist.

My neuroendocrine tumor treatment at MD Anderson

I had the surgery on Aug. 23, 2018. Dr. Katz removed my spleen, the tail of my pancreas, and parts of my stomach and colon. During that same surgery, I also had my gall bladder removed and the spots on my liver biopsied to confirm that they were cancer. It was a long procedure, but I didn’t have any issues afterward. In fact, the very next day, I was up and walking around.

I stayed in the hospital for four more days. Then, I met with Dr. Halperin, who had several options for treating the remaining spots on my liver. He said I could do regular chemotherapy either in Houston or closer to home, and he’d manage it. Or, I could enroll in an immunotherapy clinical trial at MD Anderson.

Dr. Halperin recommended the clinical trial, because while chemotherapy would slow down the growth of the spots, it wouldn’t actually kill them. And the hope with the immunotherapy was that it would destroy the cancer.

I don’t believe that the “prevent defense” in football works, so I always play to win. That’s why I chose the clinical trial.

My clinical trial experience at MD Anderson

Every three weeks for the next 18 months, I traveled to MD Anderson for an IV infusion of the immunotherapy drug atezolizumab, combined with the targeted therapy drug bevacizumab. The scans I got during those visits showed that the spots on my liver were stable.

If I’d been under anyone else’s care besides Drs. Katz and Halperin, I might’ve doubted I was actually getting the drugs, because I didn’t notice any side effects at all. I felt exactly the same. But they’d both earned my respect and trust, and Dr. Halperin had promised that a placebo wasn’t even a possibility in this clinical trial, so I knew I was getting the real thing.

I ended up having to leave the clinical trial early, but only because I had a heart attack in May 2020 that was completely unrelated to my cancer treatment. Dr. Halperin said he could either start me on a chemotherapy regimen afterward or we could just monitor the spots.

I chose monitoring, so that’s what we’ve been doing ever since. At my last office visit in February 2021, the tumor had grown only very slightly. But I’m not worried, because Dr. Halperin says he still has a bag of tricks at his disposal. I go back for my next follow-up in May. If it’s grown again by then, we’ll make a new plan.

My life after a stage IV neuroendocrine tumor diagnosis

I’m still trying to pin Dr. Katz down in terms of life expectancy. But he chooses his words very carefully, and he’s always three or four steps ahead of me. So, I know I’m never going to outmaneuver him. All he will say is, “You’re not going to have to worry about cancer.” And I don’t.

Even so, I’ve been making memories and crossing off bucket list items ever since my diagnosis. I let my son take over the family business and went paragliding and horseback riding in Wyoming with my wife. We also went on a religious retreat in Idaho and a turkey hunt in Florida.

Thanks to God and the care I’ve received so far at MD Anderson, I anticipate living a full and normal life. And I feel great. That’s why I tell anybody who’s just been diagnosed with cancer, “Get to MD Anderson as fast as possible. You won’t regret it.”

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