Support group offers awareness and education to prostate cancer patients
Published: Tuesday, September 3, 2013 at 6:01 a.m.
Last Modified: Friday, August 30, 2013 at 3:10 p.m.
It is one thing to hear the numbers.
■ American Cancer Society at Winn Dixie Hope Lodge
■ ACS at Bethel Seventh Day Adventist Church
■ Gainesville Prostate Survivors Support Group, 800-227-2345
It is another to be a number.
In May 2012, Steve Austin became one of the numbers when he was among the 200,000 men diagnosed with prostate cancer.
Since then, Austin has been engaged with a men's support group in Ocala, much like those also actively working in Alachua County.
“Everything the doctor said after the word 'cancer' came out of his mouth, I didn't hear,” said Austin, an Ocala resident. “In a five-week time frame, my PSA (prostate-specific antigen, a protein made by the prostate gland) level went from 4.17 to 4.55. A biopsy was done and the Gleason score was seven, which in my particular case is considered aggressive.”
After an initial conversation with a doctor, Austin was referred to the American Cancer Society's Man to Man group. Becoming educated at the doctor's office was one thing; hearing the life experiences and getting advice from men in the support group helped him make treatment decisions and understand what life is like with prostate cancer, and surviving it.
“I wasn't looking for positive reinforcement as much as I was looking for information,” Austin said. “Any support groups have a misconception about them: that people are needy, they need to be propped up and need help to get through it. That is not really the case. They are for awareness and education just as much, if not more than, support. People are there to share and learn.”
Austin's first engagement was a board member meeting as the group's regular meeting had taken place just days before he made his initial call for help.
“It turned out to be a meeting designed to personally help me,” Austin recalled.
Since then, things have changed. Austin is becoming chairman of the board as he takes over from seasoned survivors including Mickey Weller, Peter Mendez and Harry Kornprobst, who have been with the group since it formed locally 17 years ago.
And a broader change is afoot as well: The American Cancer Support is dropping its national Man to Man group, which means that local groups around the country are now independent.
Erin Stawarz, the society's communications contact for Florida, issued this statement: “The American Cancer Society has made some strategic decisions to allow us to finish the fight against cancer. To achieve our vision, we must narrow our focus and put all our energy and resources into those strategies that help the most people, end the most suffering and save the most lives. While Man to Man offered a wonderful service, it is not a strategy that will allow us to help the most people, end the most suffering and save the most lives. Additionally, today's cancer patients have many options for ongoing patient support groups, including more programs offered by health care facilities. As a result, fewer prostate cancer survivors are utilizing Man to Man as they have identified alternative programs. We will continue to connect all cancer patients — including those battling prostate cancer — with others going through similar experiences through our online Cancer Survivors Network and other resources, including referring patients to resources in their community.”
Austin said the society provided assistance so the local groups could ease in the transition.
“It was a good relationship with them,” he said of the affiliate in Marion County. “We are struggling a little bit, but we are having fun formulating our own bylaws and organizational procedures to get us going.”
He said the hope is to bring a fresh approach to the newly named Ocala Prostate Cancer Group.
“My big goal is to attract new patients and make the new people aware of what is available to them, not just spin in circles, be scared and cry with their wives,” he said.
In Gainesville, Sam Gaddy learned about his support group when he struck up a conversation with a stranger at a workout center eight years ago. The stranger was a facilitator for the Man to Man group there.
“He said how important it was to get the word about prostate cancer to African-American males,” Gaddy said.
Black males are at a greater risk of prostate cancer than any other race. The American Cancer Society suggests that all African-American males, and all males whose father or brother has prostate cancer before age 65, should consider getting tested starting at age 45.
“My father (Robert) died of prostate cancer 13 years ago,” Gaddy said. “One brother (John) died of prostate cancer and my other brother (Robert Jr.) was also diagnosed with prostate cancer. He beat it, but died of other causes. I originally didn't consider myself a prostate cancer survivor but the [guys in the group] said I was because of it being genetic in my family. So I do consider myself a survivor.”
Gaddy has been in the Gainesville group for eight years. He points to Ron Will, a 15-year prostate cancer survivor, as a true inspiration, considering the small number of treatment innovations there were in the late 1990s.
With the society stepping away, Gaddy's group will continue to meet at the Hope Lodge, which is connected to the Alachua County affiliate's building. Hope Lodge provides family members of cancer patients lodging when loved ones are being treated in Gainesville-area hospitals and cancer centers.
“Our goal continues to be to get the world out to African-American males about prostate cancer here in Alachua County,” Gaddy said. “We are taking steps to become a group that receives federal funding.”
For men in the Marion County area, there also are support groups affiliated with the Robert Boissoneault Oncology Institute centers in Ocala, The Villages and Lecanto.
In the Gainesville area, there also is the Gainesville Prostate Survivors Support Group, which meets at the Cancer Center of North Florida Regional Medical Center.