Late afternoon, September 2011. The Brunner family -- parents Alan and Shelly and their three daughters -- attend a lengthy meeting with the genetics team at Sanford Roger Maris Cancer Center in Fargo.
“We closed the place down,” recalls oldest daughter Tracey Klobuchar. “But it was so worth it. We got all the information needed and every question answered. At the end, we had our blood drawn for the tests.”
The genetic tests would indicate whether Tracey, 24; Rachel, 22; and Megan, 17; had Lynch syndrome -- a rare genetic condition that significantly increases risk of colorectal and other types of cancer. Most have no genetic link.
Learning from Dad
Cancer was no stranger to the Brunners. Alan was diagnosed with aggressive colorectal cancer in late 2010 at age 47.
“It didn’t even seem like he was that sick, but I know he was,” says Megan. She and her sisters admired his courage, independent spirit and sense of humor as he moved through a tough course of treatment: surgery, chemotherapy, radiation therapy, then more surgery. Today he’s cancer free and back at work in Mahnomen, Minn.
Because 47 was young for colorectal cancer and because others in his family had been diagnosed with cancer at young ages, Alan agreed to extra steps to learn more. Was there a genetic link? Could his daughters be at risk?
- A detailed family medical history. Recalls Rachel: “My dad did a bunch of research on his side of the family. I know it was a pain, but we’re so grateful he did it.”
- Extensive genetic testing of blood draws and tissue samples in carefully selected specialized labs.
Sanford medical geneticist Dr. Pamela McGrann thoroughly analyzed the information and test results, arriving at the Lynch syndrome finding. She along with Sanford genetic counselor Larissa Hansen took as much time as needed to educate and support the family.
Says Dr. McGrann: “Learning about the existence of Lynch syndrome in a particular person or in multiple people in the family can be concerning -- but empowering, too. The knowledge alerts us as to who needs early and aggressive screening. This in turn leads to picking up tumors as soon as possible, when there’s every chance for a complete cure. This is how we change the family tree.”
An individual decision
Lynch syndrome in Alan meant his daughters had a 50/50 chance of having it, too. Would they want to pursue testing to find out?
Well-informed, all three daughters said yes:
- Tracey: “As soon as we found out my dad had Lynch syndrome, we learned everything we could. All three of us knew we wanted to be tested.”
- Rachel: “It was an easy choice once I knew the facts.”
- Megan: “Tests and preventive steps are a lot better than finding out later you have advanced cancer.”
Harsh reality, ready support
“Waiting for the test results was nerve-wracking,” says Rachel. “We all three ended up having it. We also learned that with our particular type of Lynch syndrome, the greatest concern is endometrial cancer. We have a 30 to 40 percent chance of getting colorectal cancer in our lifetime, but the chance for endometrial cancer is twice that.”
Even more important, the sisters learned how to take the best possible care of themselves. Beginning at age 25, they’ll undergo periodic tests including colonoscopies, endometrial biopsies, upper endoscopy studies, urinalyses and more.
“We’re not too excited about all those tests, but we know that’s how you pick up cancer early,” says Rachel. “We know there are other implications, too. Do we want to have kids knowing there’s a 50 percent chance we’ll pass Lynch down to them? At what point do we have full hysterectomies to prevent endometrial cancer? These are things we’re thinking about.”
Well-equipped with extensive information and a detailed management plan, all three sisters know they can count on Sanford for support and care coordination at any point in their lives.
And if cancer is ever detected? “We have good help for that, too,” says Rachel. “My dad has been really happy with his care at Roger Maris.”
A bright future
Today Tracey, Rachel and Megan don’t live in fear of what-if. With smiles, they talk about their lives and their futures. Empowered and confident, each travels her own path:
- Recently married, Tracey lives and works in Fargo.
- Rachel studies pharmacy and business at North Dakota State University.
- Megan attends high school in Mahnomen where she’s a cheerleader.
They laugh in unison, trying to recall the details of family stories that go way back. But there’s one story they’ll never forget -- and it’s current: love of family gets you through.
“We’re in this together!” says Rachel. “And that’s the best support there is.”
Posted Date: April 2012