In 2002, Andy Lyons made a promise to his big brother, Steve.
In a hotel room adjacent to Northwestern Memorial Hospital in Chicago, where Steve had been admitted after being diagnosed with pancreatic cancer, he said to Andy, “Please don’t let this happen to you. We have to stop this.
Says Andy: “I couldn’t agree more.”
Steve died seven weeks later. And for the next 21 years, Andy lived that commitment to his brother, a person he calls “my superman and my hero.”
He also channels the memory of many other beloved family members, who all died of the same disease.
“My family has a long, long, long, long history of pancreatic cancer,” Andy said. “My grandmother died of it. And at least two, maybe three of his sisters, then my mother. And then my mother’s twin sister. And then their brother. And then, finally, my brother. It took me a while to see the connection, probably because I didn’t want to. But when my brother got it, I just knew it was coming my way.
Andy wants to find out why his family has been hit so hard by pancreatic cancer. Not only is it a fitting tribute to loved ones, but it also helps other families as researchers strive to understand the complex relationship between a person’s genetic makeup and disease.
For a few years, Andy had had annual CT scans to check for any signs of cancer, but he felt that wasn’t enough. He began looking for a doctor who specialized in pancreatic cancer and genetic risk, as the field was in its infancy at the time. Finally, Andy found a familial pancreatic cancer research program led by a gastroenterologist who had just moved to Chicago from Omaha.
To find out if he would even be eligible for the program, Andy had to go through what is usually an in-depth interview but only two questions (“Do you have a history of pancreatic cancer in your family?” “Well, yes. ”Are you of Eastern European Jewish descent? ”Yes, I am.”), he was accepted into the study and began regular testing and monitoring.
“The next day I had an ultrasound endoscopy and the doctor took blood and tissue samples,” Andy said. “It was the start of our almost 20 years together.”
Then in October 2021, after years of annual trips from his hometown of Des Moines, Iowa, first to Chicago and then to Pittsburgh, where his doctor eventually moved, Andy received the news that so many of his family members l ‘did. He remembers the moment well.
“My doctor came around the corner in tears,” Andy said. “And two of his nurses were with him and they were in tears. I said what?’ He said, ‘You have cancer.’
Due to Andy’s persistence in keeping watch, his pancreatic cancer was caught early and he was eligible for surgery. He and his wife canceled vacation plans and stayed in Pittsburgh. Two days later, they met with a surgical oncologist, who reassured them that since the cancer had been caught early, there should be no problems with the procedure “and you probably won’t have any more cancer.”
Andy said he asked the surgeon to repeat that. Twice.
Since the cancer hadn’t spread, the surgery could be performed robotically, which is much less invasive and has a faster recovery time.
Andy and his wife got home “very, very quickly,” then flew back to Pittsburgh a week later for the surgery. During his three weeks of recovery, he and his wife celebrated both birthdays and had Thanksgiving dinner at his doctor’s with his extended family. Then Andy returned to Des Moines for 12 rounds of chemotherapy.
When following up on his one-year birthday, the doctor said there was no evidence of illness and he had ‘nothing to worry about’.
“Without a doubt, these annual screenings saved my life,” Andy said. “Early detection is the key. Too often, when pancreatic cancer is diagnosed, it is usually at an advanced stage. I didn’t want this to happen to me and I really don’t want this to happen to anyone.
Andy points out that his “vigilance and diligence” led to a positive outcome.
“And although part of my reason for doing this was to survive – I knew the odds of me getting pancreatic cancer were not in my favor and I didn’t want to die – there was an equal part if not more important,” he said. said. “I have this genetic link in me that causes this cancer. Let’s find him and hopefully save a lot of lives. Let’s stop this killer.
He’s still on the hunt, because so far researchers haven’t discovered why Andy’s family was so susceptible to pancreatic cancer. His blood and tissue samples continue to add to that effort.
“I took five genetic tests. And they haven’t found a common marker in me yet,” he said. “I even had one the day I was diagnosed, but they couldn’t find one. But you know what? We’re going to do it, and I’m going to keep going until they do.
As he continues his routine scans and recovers from some lingering side effects of chemotherapy, Andy approaches it all with characteristic good humor. He writes journal entries that he shares with friends and family about his time at the “chemo bar” with other patients – many of whom have become good friends.
“There were two things that got me through this, besides early diagnosis and early detection,” he said. “A positive attitude and a sense of humor. It was a hard thing to laugh at, but keeping it light really, really helped. That’s pretty much how I approached my life anyway and it’s served me well. With my battle with cancer, it has served me very well.
Now Andy sees his mission as helping people with pancreatic cancer. Last year, he was a speaker at PanCAN PurpleStride Iowa, despite going through chemotherapy. Friends came from near and far and his team far exceeded the fundraising goal.
When he connects with patients and families, his message is one of “vigilance and diligence:” He wants everyone to know the signs and symptoms and to defend themselves. For those with a family history of pancreatic cancer, he urges them to discuss options with their doctor to help them understand their risk.
“Get checked out. We were taught to run away from cancer, ignore it or not talk about it,” he said. “And where does this lead us? No space. Late diagnosis with poor prognosis. So I say don’t run, run on it. Be proactive. It can save your life. He did mine.
His brother’s words endure.
“What my brother told me is really for everyone,” Andy said. “We can all help end pancreatic cancer.”
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