ELYRIA — Lenny Santiago, 54, of Lorain, had surgery to remove his cancerous prostate in November.
He traveled a road of fear and uncertainty prior to that operation and since.
That is, until he found Men to Men, a prostate cancer support group that meets 10 a.m. the second Saturday of every month in the lobby of the Mercy Cancer Center on Schadden Road.
“I’ve been looking for you guys for a long time,” Santiago said as he sat among the dozen men gathered for the group’s June meeting.
“This is God-sent for me,” Santiago said as others in the room assured him his fears over side effects and other possible problems arising from several weeks of upcoming radiation treatments should be unfounded.
“There’s been a big improvement in radiation from the ’80s and ’90s,” Ray Noble, one of two group leaders, told him.
“I was healthy all my life,” Santiago said of the shock of being told he had cancer. “I never even had the flu. I feel wonderful.”
“It’s been a journey,” Santiago said.
“You’re on the right path now,” Al Verhoff, 60, of Vermilion, told Santiago.
The two men were among a dozen who turned out for Saturday morning’s monthly meeting.
“I was feeling great before I was diagnosed, and I feel great now,” co-leader Tim Howard said. “You’re only as good as your next doctor’s visit.”
Howard, a Lorain city councilman and program administrator of the Connect Lorain County basic computer training program at Lorain County Community College, became a co-facilitator with Noble after dealing with the disease himself in January 2011.
Noble is a longtime facilitator of the group, and 22-year prostate cancer survivor. Many know him as former chairman of the Elyria Republican Party who ran against Mayor Holly Brinda in 2011.
Noble and Howard know how important it is to raise awareness about the group and the disease and to try and grow the group.
“A lot of guys just don’t know we exist,” Howard said.
They meet in a very relaxed setting in the cancer center’s spacious front lobby, which was filled with sunlight Saturday morning.
With no formal structure, officers or set programs, discussions, ideas and advice easily flow on subjects ranging from diagnosis and treatment to recovery and the emotional toll on patients and their families.
Projected to strike an estimated 233,000 men this year, prostate cancer is often insidious in that, unlike many cancers and other life-threatening diseases, it has no discernible symptoms.
“You could live with it for a very long time, until it metastasizes (spreads in the body), and then you can be in serious trouble,” Howard said.
Plus it often strikes men with no family history of the disease, as attested to by some in the group.
Representing 14 percent of all new cancer cases in 2014, prostate cancer, which is symbolized by a pale blue ribbon, is projected to claim 29,480 lives this year, or 5 percent of all cancer deaths for the year, according to the Surveillance, Epidemiology, and End Results Program of the National Cancer Institute.
Men between the ages of 65 and 74 are most often diagnosed.
For reasons that remain unclear, there is a higher incidence of the disease in African-American and Hispanic men, according to Noble.
But once the disease is diagnosed, it’s vital “to have those conversations no one wants to have,” Howard said. “It’s very important that men start talking about prostate cancer like women talk about breast cancer.”
Still, Howard and Noble know it’s tough to get men to open up about the disease and what it may mean for their lives.
“Some guys are afraid of the digital,” Noble said, referring to the long-established “finger” exam by doctors checking for signs of an enlarged prostate or other abnormalities.
And there’s the macho thing, too.
“Men don’t complain,” Noble said.
The group’s members range in age from Verhoff and Santiago to men in their 70s and 80s.
Then there’s Bob Stilgenbauer, a 69-year-old Lorain resident who was diagnosed in 2007 and told he had two to three years to live.
“They told me to take all my money and take my wife on vacation because I wasn’t going to be around much longer,” Stilgenbauer recalled.
But he beat the odds, big time.
Opting for radiation treatments at the Veterans Affairs hospital in Cleveland rather than surgery, Stilgenbauer is plugging along today some 50 pounds heavier thanks to the hunger-inducing effects of the drug prednisone.
“And I self-catheterize, which is the opposite of most of you,” Stilgenbauer said, referring to the incontinence that plagues many prostate cancer patients and survivors.
Verhoff underwent 42 radiation treatments to become cancer-free for the past three years. He was enthusiastic in his praise for the group and its ready acceptance and genuine concern expressed by the group.
“They helped me make my decision (on treatment),” Verhoff said.
The support group provides information including listings of locations and dates for free cancer and health screenings around the county.
“I’m gonna be a survivor,” Santiago said before leaving the meeting — his first. “I’m gonna beat this.”
“It’s all about education for these guys,” Howard said. “If you’re not educated, you don’t stand a chance.”