It comes like a sucker punch to the solar plexus, the first news of cancer.
"First thing you do is go into shock," says Mark Williamson, who was diagnosed with prostate cancer in 1999.
"I thought it was a death sentence," says John Youngblood, who got his diagnosis a couple of years earlier.
It's difficult to focus, and the treatments for prostate cancer are particularly numerous and nebulous. Williamson and Youngblood, along with oncologist Dr. Graham Greene and fellow cancer survivors Jim East, Buzz May and the late Louis Schaufele are founding members of the Arkansas Prostate Cancer Foundation, an organization that offers support so prostate cancer patients and their loved ones can make informed decisions.
It's only in the past 15 years that Arkansas men have had quick, comprehensive access to the information they need. When the organization's founding members, or "Reluctant Brotherhood," were first diagnosed (all within two years of each other), there was no such database or support network.
The seeds of the foundation go back to the late 1990s and East's diagnosis.
"I wasn't even sure where my prostate was," he remembers. "It scared me half to death."
Greene started doing research. For six months he read everything he could about the cancer and its treatments, weighing pros and cons before deciding how to treat East.
His research and experience prompted Greene to suggest that they form a foundation, a way to make all that information available to other men in the same position.
When they started, they didn't realize they'd be breaking ground.
East recalls, "I told Dr. Greene, 'Let's don't try to reinvent the wheel. Let's find a successful foundation in another state and copy it.'"
There wasn't one. They had to start from scratch. After recruiting fellow patients Schaufele, May and Youngblood and mutual friend Williamson, Greene and East set to work, getting help and advice filing for 501(c)(3) status and starting fundraisers.
"No one on the board knew really how to start one of these things," East says.
"Feeling our way," adds Youngblood. "And we felt pretty good."
At the time, Williamson was friends with the other men and had some experience on foundation boards so he joined to help, though he didn't have prostate cancer. Yet.
"You didn't let us down," Youngblood laughs. "It wasn't long."
"They gave it to me," Williamson jokes.
He became one of the first cancer patients to benefit from the foundation. The information and support he needed were right there.
The foundation promotes awareness and education regarding screening methods and risk factors. Once a man is diagnosed, the foundation puts the treatment information right at a patient's fingertips and also has a survivor-mentor program.
In the men's experience, doctors don't tell patients what to do, or some doctors may push for their preferred treatment when it may not be the best option for the patient.
"This foundation is an informational source that is unbiased," says Mike Schaufele, son of founding member Louis Schaufele. "That's the reason the foundation is here, to say, 'Here are your options. Here's what's good. Here's what's bad.'"
In the early days, they bought an RV (they've since downsized to a van) and filled it with pamphlets and equipment to do screenings in small towns around the state.
"Where nobody would come in, we'd go out to them," says Youngblood.
According to the organization's statistics, one in seven men will develop the disease. For black men, that number jumps to one in three.
While most won't develop the disease until their 70s or 80s, it does strike men as young as 25 and generally, the younger the patient, the more aggressive the cancer.
Despite its prevalence, prostate cancer hasn't received nearly the attention that breast cancer has gotten over the last couple of decades. East thinks there's a logical explanation for that: Men aren't as willing to talk about their health problems. Men are less likely to go to the doctor when something doesn't seem right, and all the founding members say they've known men who died because they didn't get problems checked out. Finally, many men are embarrassed by prostate cancer and its potential side effects.
Says East, "That's one of the major reasons we founded the foundation was to try to raise the level of awareness of how many people are actually going to get this stuff."
They're hoping to combat the publicity gap a bit by making a blue ribbon the Arkansas symbol for prostate cancer research, something reflected in the foundation's fundraising dinner and auction, the Rockin' Blue Ribbon Bash on June 26.
Louis Schaufele died from other causes in 2012. The other members of the Reluctant Brotherhood are all cancer-free after more than 10 years. They've also ended their time on the foundation board, but they're coming back together as honorees at the Rockin' Blue Ribbon Bash.
Greene, who now lives in Florida, is also an honoree and will attend.
In most cases, prostate cancer is not a fast mover. There's time for the patient to research options and make a decision. Yet, waiting with the cancer inside is an unattractive option.
Says East, "I thought, and still do to this day, that if this foundation could save other men all that time, where they didn't have to wait forever to make up their minds, if they could come here and get the same information without having to dig it up, that was a worthwhile thing to do."
Rockin' Blue Ribbon Bash is 6 p.m. June 26 at Temple B'nai Israel, 3700 N. Rodney Parham Road. Tickets are $100. Call (501) 379-8027 or visit arprostatecancer.org.
High Profile on 06/15/2014