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Cancer diagnosis at age 21 leads to discovery of rare genetic condition for Bemidji man

Benjamin Pope, 24, talks about how Lynch Syndrome increases his chances for developing an additional cancer. MONTE DRAPER | BEMIDJI PIONEER

BEMIDJI — In some ways, Benjamin Pope’s cancer diagnosis was a blessing.

At age 21, in excruciating pain, the young man sought medical attention at his local emergency room and learned that his colon was collapsing into itself.

Three days later, following surgery, he was diagnosed with colon cancer.

“Pretty much as soon as ... they knew I had cancer, they started looking into why I would get colon cancer at 21 years old,” he said.

General guidelines call for colon cancer screenings to begin when people turn 50. But here was Pope, at 21, with Stage 3 colon cancer. Doctors had just removed the lower third of his colon, part of his small intestine, 11 lymph nodes.

“They had me do genetic testing ... and they found out I had the mismatched genes,” he said.

Pope is one of the few to be diagnosed with Lynch Syndrome, a hereditary genetic condition that greatly increases the likelihood of contracting cancer, particularly colon and stomach cancers.

“A couple of years ago at this time, I had chemotherapy on Thanksgiving so I didn’t feel like eating a thing,” Pope said, reflecting on today’s holiday. “So, yeah, there’s definitely a lot to be thankful for. I was kind of mortified to learn that I had Lynch Syndrome but I’m really thankful now to know.”

The average person has about a 5 percent chance of developing colon cancer but someone with LS has an 82 percent chance of developing that cancer. And those with LS tend to develop more rapidly growing cancers; nearly three times faster than average.

Lynch Syndrome International, or LSI, estimates between 600,000 and 1 million Americans have LS but only about 5 percent of them are diagnosed.

Once Pope was diagnosed, his family was tested as well. Pope, who grew up in Topeka, Kan., has five brothers and a sister. His father and two younger brothers, 15 and 13, were found to have LS.

“They’re jokesters so I guess they kind of took it joking,” Pope said, discussing how his brothers took the news. “But you know, it’s got to be like me, it makes you think, makes you feel a bit more fragile. You’re not the indestructible young person you were beforehand.”

Knowing he has LS makes it more likely that if he does develop cancer, because of the more frequent, diligent screenings, it will be caught early, he said.

“It’s recommend that once you get to be about 18-years-old or so, about five years younger than I was when I got it, then they’ll start the screenings,” Pope said of his younger brothers. “Colon cancer is really easy to prevent if you catch it early.”

This spring, Pope himself underwent his annual colonoscopy and they found some polyps that were quickly removed without incident.

“But if I hadn’t know about those, a few years down the road, that could have been cancer again,” he said.

‘It’s good to know’

Pope’s surgery two years ago appeared in scans to rid his body of cancer. But because there was a risk it had spread to his blood, he had to undergo six months of chemotherapy.

Now cancer-free, he has a 50 percent chance of developing a second cancer in the next 13 years.

“There are always reminders of having cancer,” he said. “Like if I go to a restaurant and the hand soap smells like the hand soap at the cancer center, it gives me nausea. … I still have a bit of neuropathy from the chemo, so sometimes, if it’s cold, my face and hands are a little numb.

“So there’s little reminders, but for the most part, I go on with life.”

He had been planning to relocate from Kansas when his medical issues arose, but they were put temporarily on hold as he focused on his health.

In May 2012, once everything was in place and his health care needs were in order, he moved to Bemidji as previously planned.

Every three months, he has blood work done, every six months he has CT scans, and every year he has a colonoscopy. Every couple of years, he will undergo a stomach screening.

“It is a smaller hospital here but I really like the people I’ve been working with,” he said, noting that the doctor who does his colonoscopies actually went to school and studied under Dr. Henry T. Lynch, who named the syndrome.

Pope now works at Nortech full time while he juggles online coursework, working toward a degree in leadership through Fort Hays State University with the goal of someday preaching.

He also has been working to raise awareness about LS.

“It’s something I want to do because not many people have heard of Lynch Syndrome and most people don’t hear about it until they get cancer,” he said.

He wants people to know that it’s out there, so if there is a history of colon and stomach cancers in their families, they can talk to their doctors about LS and perhaps be tested.

“It’s good to know,” Pope said. “In a way, I have less of a chance of getting cancer than a normal person because I have all these yearly screenings now.”