Living Life to the Fullest: A Decade with Lynch Syndrome

Despite his increased cancer risks, Mike says Lynch syndrome doesn’t feel like a “death sentence,” as he puts it. If anything, he believes his diagnosis has given him more insight into his risks, as well as the power to mitigate them. He follows all the best practices for annual screenings, though he admits that he sometimes puts off making appointments for cystoscopy (bladder scope), his least favorite exam.

“Stick another camera in me, have me put more fluids in a container. Let’s do it. If the gold standard says to do it, and I have good insurance, let’s just do it.”

Since he was diagnosed with Lynch syndrome, Mike has learned as much as possible about the condition so that when he visits doctors, he is prepared to advocate for himself and engage in productive conversations. He also notes that over the past decade, even his own doctors have learned a lot about Lynch syndrome, improving their care for other people who have since been diagnosed.

“When I was first going in and doing the follow-up stuff, they’re like ‘yeah, you’re special, so we’ll do that just because you’re Mike,’” he says. “Over the years, as I’ve continued, my surgeon realized it’s not as rare as he thought it was. I was the first here, but since then he’s met other people who have been able to get down the right path.”

Mike’s Lynch syndrome affects more than his screening regimen, though. As a genetic condition, Lynch syndrome is inherited from a parent. The autosomal dominant inheritance pattern means that a child with one Lynch-positive parent has a 50/50 chance of inheriting it as well. An analysis of Mike’s family history indicated that he most likely inherited it from his mother. That means that many of his relatives are also at risk of having Lynch syndrome – his siblings, but also his mother’s siblings and their descendants.

Unfortunately, Mike’s mother was never tested for Lynch syndrome. She was treated for cervical cancer in the mid-2000s and later died from pancreatic cancer, which is a Lynch-associated cancer. Despite her health record and the evidence gathered by Mike’s genetic counselor, Mike’s mother refused to accept that he could’ve inherited Lynch syndrome from her.

“She had to know,” Mike says. “The science was clear; the evidence was undeniable. Rarely will facts overrule emotion in our brains, though.”

Following the example from Mike’s mother, many in Mike’s extended family have also chosen not to be tested. Of the three that have been tested, two were positive for Lynch syndrome.

“People will say things like ‘I totally forgot that Mike had cancer,’” Heather says. “The fact that he has no colon doesn’t define who he is.”

Ten years after Mike had his colon removed, life has mostly moved on for the Dampf family. Mike still gets frequent scans and tests. And he’s still having difficult conversations with other family members, but Mike says they’ve slowed down.

“I’m not going to ruin every time we get together,” Mike says. “I’m going to stop getting invited over. But I don’t shy away from the conversation, either. We still have those talks.”

Aside from Mike’s health challenges and their ongoing outreach with family members, Mike and Heather have used their experiences to help empower other people to be proactive with their health.

Shortly after Mike’s diagnosis, Heather began looking online for information about colon cancer at a young age. She eventually found several online communities of people whose stories sounded a lot like her family’s.

“Nobody I knew had a husband as young as mine who had cancer,” Heather says. “Through these communities and our advocacy work, we’ve befriended people who we’re still incredibly close with.”

Through these online advocacy groups, Heather has had several opportunities to travel to Washington, D.C. to meet with legislators about early screening and protections for pre-existing conditions. She has shared her family’s story with Wisconsin Representative Mark Pocan and Wisconsin Senator Tammy Baldwin. Heather and her group went into these meetings with talking points about insurance coverage and access to early screening, but she says the politicians almost always asked to hear personal stories instead.

“I think it’s important to be able to share that,” Heather says. “I can say ‘This is something that’s really important, and it personally impacts me.’ And they seemed interested in serving the people.”

Heather was active in several advocacy groups for years, even helping to organize a 5K run in Madison, WI to benefit a colon cancer awareness group. She and Mike went to Lynch syndrome events and even attended a talk with Dr. Henry Lynch, for whom the condition was named, at an event at the Mayo Clinic.

Eventually, Heather grew tired of the relentless fundraising that often comes with non-profit work and decided to step back from the organizations. However, she and Mike are still doing their best to support people who have Lynch syndrome or are diagnosed with colon cancer at an early age.

“Just like everything else in life, you evolve and you grow out of things,” Heather says. “Life goes on. Every year he gets his scans and you just start to move on.”