Cyclist Rides to Fight Grim Cancer Prognosis

N.J. cyclist lost two wives to cancer and fights own grim diagnosis for cure.

September 15, 2009, 4:44 PM

Sept. 16, 2009— -- Ken Youner has a "beastly" disease, but that doesn't stop him from bicycling hundreds of miles to cure cancer.

"I call it insane," quips Youner, who is 62 and has stage 4 kidney cancer. "There is no stage 5."

When Youner, a New Jersey gastroenterologist and avid cyclist, was first diagnosed in 2003 at the age of 56, he already knew something about deadly cancers.

His wife of 15 years, Cecile Sertic Youner, fought breast cancer, as well as acute myelogenous leukemia, which killed her last year at the age of 57.

Their five-year common battle brought the couple closer in life and binds them now after her death.

"She was the love of my life," he told "Everything in my life stems from my wife."

Dealing with myriad scans, tests, trials, chemo and radiation treatments, the Youners promised each other "although we had cancer it would not have us."

This week, in her memory, Youner is taking part in Spokes of Hope, a bike tour that converges today in Washington, D.C., to bring awareness to the disease.

Sponsored by the organization Cyclists Combating Cancer, the tour has "spoked in" riders, many of them battling cancer, from as far away as California and Maine to meet in Maryland today.

They will stop by the National Cancer Institute and the National Institutes of Health before arriving at the Capitol to urge, among other things, passage of the Comprehensive Cancer Care Improvement Act.

The bill, backed by the National Coalition for Cancer Survivorship, promotes better coordination of treatment and follow-up care between patients and doctors.

Youner will also raise funds for the Cecile and Ken Youner Fund for Cancer Research, a foundation he created after his wife died. "Our names are forever together," he said.

Cycling has been lifesaving for Youner, who logs 4,000 to 5,000 miles a year.

"If anyone could live with this cancer, it would be me, and I am willing to take the chance," said Youner, who takes the powerful anti-cancer drug Sutent.

To get ready for his first round of chemotherapy several years ago, he had cycled up a 10,000-foot peak in Hawaii.

Last Monday, as part of Spokes of Hope, Youner cycled from New Jersey to New York and back again, visiting young patients with the disease in cancer centers. In all, he rode 60 miles.

Cancer Survivor Cycles 60 Miles

"I was exhausted," he said. "The hardest part is the fatigue and diarrhea. I take Imodium before the ride and take lots of naps. It's mind over matter."

He gets much of his inspiration from Lance Armstrong. "To be a real cyclist, you suffer on a bike, when you club the hills on a 100-mile ride."

Youner, who has two children and two grandchildren, has been married three times. His second wife, a research doctor at Rockefeller University in New York City, died of the same leukemia as Cecile in 1987.

He learned he had cancer after discovering a swollen left testicle. Later, a CT scan revealed Youner's kidney was "four times the size it should be," he said.

With a 50 percent chance of metastasis, he had his left kidney removed. Two years later in 2005, he had part of his lung removed when enlarged lymph nodes appeared in scans of his chest.

Within a year, the cancer was back and he took high doses of interleukin 2, a drug so powerful it can kill as easily as it can cure.

The regimen was grueling -- infusions three times a day for seven days, with a break and then a repeat over three months. "You're sick as a dog," he said, with spiking fever, diarrhea and fatigue so great "you can't get out of bed."

By 2006, his doctors had five new Food and Drug Administration-approved drugs in their arsenal. He continues now to take Sutent, which caused something called hand-foot syndrome, making his extremities red and sore.

"I couldn't walk, ride my bike or ski, which I love. I might as well be dead," said Youner.

Other cyclists on the ride have survived their own trials.

"We make up people who lost family members and those currently in the battle," said Cindi Hart, director of Cyclists Combating Cancer. "We have two things in common: We love to ride and we hate cancer."

A former nurse, she discovered her husband's own melanoma, catching it early before it spread. "I am a survivor," said her husband, Ken Hart, 51. "I have had the easiest of anyone here."

Today at 45, she is on hormone suppression drugs but is determined to ride.

Hart, who is from Indianapolis, was a 25-year nationally ranked bike racer and speed skater. In 2004, at the age of 40, she found lumps in her breast and underwent a double mastectomy.

"The doctor told me my life would change forever," she said. "You have to decide who you really are and what you are willing to give up and fight for. I am an athlete, and you can't take that away from me."

Two days after her second infusion, she won a state championship -- and 18 days after her last infusion, she won a national one. Her cancer recurred last year, and now she is committed to finding a cure for the disease.

Today Hart is a Special Olympics coach and draws from their motto: "Let me win, but if I cannot win, let me be brave in the attempt."

The group also draws inspiration from cyclist Lance Armstrong, who overcame testicular cancer and went on to win the Tour de France seven times, a world record.

His foundation proclaims, "Unity is strength, knowledge is power and attitude is everything."

Dave Mitchell, 68 and a retired automotive engineer from Pittsburgh, has for the last 15 years been treated with cryosurgery, radiation and hormones for metastic prostate cancer. His wife is a breast cancer survivor.

"I am an avid cyclist and this has made a huge difference in my life," he told "Give me this global network of people I can share my cancer concerns with."

He joined the Spokes of Hope last weekend and will have chemotherapy Friday. "Like Lou Gehrig, I consider myself the luckiest man in the world," Mitchell said. "I have lived an absolutely wonderful life. Doing this helps me reach out and touch people."

Along the way, the group has encouraged cancer patients and even enticed survivors to join them on the ride.

"It used to be cancer was a stigma disease and a death sentence," said Mitchell. "But Lance Armstrong did so much to change that. He not only talked about it, he flaunted it."

Today, Ken Youner flaunts his own fight for the betterment of others, though he says his prognosis is difficult.

He serves as medical director of the New York-based Action to Cure Kidney Cancer, which raises awareness about the disease and seeks public and private funding to find a cure. The grass roots organization has given away $110,000 in grants.

He belongs to a dozen other advocacy groups and has dedicated his six-year fight to clinical trials, hoping to help others find cures.

"They are expensive and difficult to run," he said. "It takes patients and patience. Oftentimes insurance doesn't cover. But this is the only way to know if a drug works. Otherwise it's a crap shoot."

Youner will soon start proton beam treatment at MD Anderson Cancer Center in Houston. He said his hope springs from helping others.

"I am not cured, and believe it or not, I hate cancer," he said. "But I have done things I would never have done if I didn't have cancer."

But he also credits cycling with giving him much of his positive spirit.

"Bike people are lunatics," he said. "I think it's the one reason I am alive today."

"I've been to the gates of hell," Youner said, paraphrasing his favorite singer, Tom Petty. "And I won't back down."