Changing a Family’s Fate: Genetic Testing Empowers Cancer Survivor to Help His Loved Ones
Dan Hellmers knew a lot of people in his family had died from cancer. But the gravity of the situation never really hit him until he saw a list of all of their names and cancer types spelled out together.
“Seeing that list was like getting hit with a sledgehammer,” he says. “It was always my sick joke that if you’re a Hellmers, you die of cancer. But when I saw the names, it really woke me up.”
Knowledge of his extensive family history led to his own cancer diagnosis in 2018 – but with help from Wilmot Cancer Institute’s Hereditary Cancer Screening and Risk Reduction Program, he’s hoping to potentially put an end to the ever-growing list of family members who’ve died from cancer.
Dan’s own cancer diagnosis starts with his primary care doctor, who had him start getting colonoscopies every five years instead of the usual 10-year interval for those of average risk.
At his October 2018 colonoscopy, the team found colon cancer. A biopsy and further testing showed it was stage 3.
He had surgery to remove about 18 inches from his colon and came to Wilmot Cancer Institute Greece for his chemotherapy, starting in January 2019. Through chemo, he met a number of nurses, whom he describes as angels.
Around the time of his surgery, he also had genetic testing, due to his family history. He discovered that a pathogenic germline variant – a change in the DNA that elevates risk for cancer — was behind the long list of family members with cancer. He has the variant called MSH6, which means he has Lynch syndrome.
Lynch syndrome is the most common cause of hereditary colon cancer. While Dan has the MSH6 variant, there are other variants associated with Lynch syndrome. People with Lynch syndrome have a 20 to 80% increased chance of colon cancer. They also have higher risk of cancers of the stomach, bladder, pancreas, liver and brain. Additionally, women with Lynch syndrome have a higher risk of endometrial and ovarian cancers.
After this discovery, he started coming to the Hereditary Cancer Screening and Risk Reduction Program located at Wilmot’s Pluta Cancer Center, where he met Carol Lustig, R.N., A.N.P.-B.C., A.C.G.N., nurse practitioner and assistant clinical director with the program. She became his quarterback, he says, helping him stay up to date on the screenings he needs.
Once he got the news, he encouraged his three adult sons and his brothers to get genetic testing. One brother and one son ended up having the variant.
Those family members can now get more frequent screenings to hopefully catch any potential cancers earlier. With frequent colonoscopies, polyps can even be removed before developing into cancer, potentially preventing colon cancer altogether.
It’s not easy to hear news about having an increased risk, but Dan felt if it could help anyone – especially the people he loves and cares about – live longer, better lives, it’s worth it.
“Early detection is everything,” he says. “The sooner you find this stuff, the better off.”
Dan finished chemotherapy in 2019 and has been doing well ever since. He walks at the Mall at Greece Ridge some mornings and enjoys tending to his 1965 Ford Mustang. He had one back in college and it was on his bucket list to get one again. He hadn’t taken the plunge – until one of his nurses at Wilmot encouraged him.
“I’ve had it for going on three or four years now and I’ve had so much fun with it,” he says.
He’s part of a group called Roc City Mustangz that keeps him busy during retirement not only in sharing his love of classic cars at car shows, but also in helping raise funds for local cancer-related causes. They also do cruise nights where they treat patients about to go through cancer treatment to surprise gift baskets to help lift their spirits.
Dan also participates in a quarterly support group that Lustig and team host virtually to help cope with his cancer and Lynch syndrome.
“I look forward to seeing Carol every year just to touch base with her and learn about anything new,” he says.
While one never knows what the future will bring, Dan says he’s grateful for the team that has helped him uncover this important piece of information about his health, for himself, but perhaps most importantly, for his family’s future.
“I had no idea about Lynch syndrome or that there’s many versions of it,” he says. “You just want to tell everybody and let others know. I just wanted to tell everybody my story, if it could help somebody find out about it, Lynch syndrome or basically any kind of cancer.”