Splashing along the Green River in an inner tube recently, John Williams felt invigorated by the cold, fast-moving water. His wife, Laura Smith Williams, plunged into the river with him as they shared yet another adventure. Not long before, they’d climbed Longs Peak, a 14,259-foot mountain in the Rockies. The 56-year-old man bicycles and hikes every week, and he relaxes by playing guitar. In short, he’s learned to cherish every moment of life as he chases back the shadows of cancer.
“I have been fighting a battle with prostate cancer for the past 12 years,” notes Williams.
Many famous men have struggled with prostate cancer, including Nelson Mandela, Bob Dole and Colin Powell; Sidney Poitier, Dennis Hopper and Robert DeNiro; Langston Hughes, Frank Zappa, Harry Belafonte and Johnny Ramone; Ken Griffey Sr.
“Many men have the disease and never know it,” says Dr. H. Brooks Hooper of Asheville Urological Associates. Yet according to the American Cancer Society, it affects about 1 in 9 American men, disproportionately targeting African-Americans and those over 65.
Still, this particular cancer can sneak up on a man, because it’s slow-growing and is often detected only in its later stages, Hooper explains.
And once it’s diagnosed, living with the disease can be challenging. “It gets old after a while, and I can get really down,” says Williams. “My wife reminds me to find something good in every day and make the most of every day.”
The couple have been involved with the local ZERO Prostate Cancer Run/Walk since the event’s inception in 2016. ZERO, the End of Prostate Cancer, is a national nonprofit based in Alexandria, Va., that teams up with local partners to stage such events and support research and educational efforts.
Williams, says race organizer Katie Kestner, has consistently been this area’s top fundraiser.
“I don’t deserve any credit for it,” counters Williams. “We have very supportive family and friends. We offer the opportunity to help, and they provide the funds for this important cause.”
To date, the run/walk has raised $100,000 for research, free testing and family education.
“We get into communities to educate them about talking with doctors and getting PSA levels checked if you have the need,” says Kestner. Prostate specific antigen is a protein in the blood that, in some cases, can indicate the need for further testing or monitoring. “The funds go to research and advocacy, and some of the money goes to our ZERO360 program for prostate cancer patients who need help paying bills.”
Although Williams’ father had prostate cancer, it was quickly cured and never came back. His genetics, however, put Williams at risk, and despite trying numerous treatments, his own cancer seems particularly virulent.
“I had my prostate removed surgically in 2006, and my PSA started to rise in 2009,” Williams reveals. “After radiation therapy in 2010, it went into remission for 18 months, but then the PSAs started going up again. I had a combination of hormonal therapy and radiation in 2013, then about four more years of hormonal therapy.” Soon he’ll travel to California to take part in a clinical study.
“From a genetic standpoint, some men carried a mutation that predisposed them to prostate cancer, but back when life expectancy was 50, men died of other things,” Hooper points out. “Now that we live longer, we see that predisposition manifest.” Transgender women who were born with male physiology can also contract prostate cancer, though this is more common among those who started hormone therapy after age 50.
Treatment has improved dramatically through the years. Most prostate cancers are detected before the disease has spread to other areas of the body; 98 percent of those men are alive 10 years later. In cases where the disease has spread, however, the five-year survival rate drops to just 30 percent.
“When I got my diagnosis I was 44, and most men don’t get tested until age 50,” Williams explains. “If it wasn’t for my wife’s insistence on a checkup, I never would have known.”
Diagnosis, treatment and recovery
The disease, says Hooper, presents differently from man to man. Symptoms may include trouble with urination, ejaculation, or erection, as well as pain in the lower back, hips or thighs. Some men show no symptoms at all, and factors such as obesity and lack of exercise can increase the chance of dying from prostate cancer.
But these days, many men survive and even thrive after treatment, he notes. Although it’s the second-most common cause of cancer death among men, behind only lung cancer, more than 2.9 million American men diagnosed with prostate cancer are alive today.
“In a lot of cases, having it doesn’t mean dying from it,” stresses Hooper. “Sometimes there’s no reason to treat a patient. A lot of guys don’t need treatment, and the treatment can hurt, not help. Even screenings are controversial in some circles, unless a man’s in a high-risk category.”
Researchers are still trying to figure out why the disease disproportionately affects African-American men, who are both more likely to develop it and to be diagnosed with an aggressive form. To that end, a new $26.5 million study called RESPOND aims to enroll 10,000 African-American men who have prostate cancer. Officially titled Research on Prostate Cancer in Men of African Ancestry: Defining the Roles of Genetics, Tumor Markers and Social Stress, the study will investigate environmental and genetic factors.
“There’s no single treatment that’s right for all men,” says Hooper. “The preferred therapy is based on patient specifics. For men who have organ-confined cancer, and particularly for younger men, surgery is considered a first-line therapy. Side effects must be considered, along with the meaningful quantity and quality of life.”
Immunotherapy, he continues, “is used for men who have prostate cancer that’s moved beyond to bones or soft tissues. It can help men live longer, as it uses native antibody generating capacity to generate antibodies specifically targeted to take a body’s T-cells and direct them against those cancer cells.”
Men facing surgery or radiation therapy often fear the impact on their sex life. Erectile dysfunction is a common side effect, but medications can usually address it unless there are other pre-existing issues. And while men typically no longer ejaculate after surgery, orgasms can remain deep, exciting and intense. “No man will have ejaculate post-procedure, but none of it interferes with orgasmic function,” says Hooper.
Urinary problems and fatigue frequently occur after surgery, but they’re often temporary. Both surgery and radiation therapy carry a heightened risk of infertility, however, and those considering such treatments are encouraged to bank sperm in advance.
“We won’t be able to have children,” says Williams. “We had a very narrow window of opportunity there, as we’d been married only two years when we discovered the prostate cancer.”
Williams and his wife have been supporting the fight against cancer for years. They’ve occasionally given lessons in nutrition and meal preparation to cancer survivors and their families at Wind River, a wellness retreat center southeast of Asheville that’s owned and operated by their friends Shannon Carney and David Pschirer. The facility offers free retreats to Carolina residents diagnosed with any type of cancer. The emphasis is on having fun in nature, living in the moment and learning healthy habits, such as maintaining a diverse, colorful diet (often referred to as “eating a rainbow plate”).
“My wife helped Shannon as she healed from breast cancer, and we all were friends before I even got my diagnosis,” Williams explains.
Carney and Pschirer established the retreat center after she recovered, and the friends all celebrated her healing journey. But the Williamses had no idea they’d soon be dealing with cancer much more intimately after John’s diagnosis.
“We all help each other,” notes Williams. “My wife has been there for me every step of the way. She makes sure that I eat a healthy diet and exercise, and she takes care of me when I need it.” They’ve also traveled to Washington, D.C., to advocate for research on curing prostate cancer and improving treatment options.
Williams says he and his wife are looking forward to the fellowship and support they find each year at the ZERO fundraiser. In addition to the 5K run/walk, the event includes a 1-mile walk and a Kids’ Superhero Dash for Dad. Sponsors include Asheville Hematology & Oncology, Asheville Urological Associates, and Radiation Therapy Associates of Western North Carolina.
The high cost of healing
Despite the high spirits and improved treatment options, however, cancer diagnosis and treatment can be financially devastating. Williams has good insurance, but he maxes out his deductible annually and has to make those copays. Still, he considers himself lucky to be able to keep both his full-time job and his health insurance.
Others, notes Hooper, are less fortunate. “I have several patients with limited or no insurance, and now we’re trying to find places to get them funding to get them the treatments they need,” he reports. “It makes no sense that, in this country, working people lack access to health care. Independent of race and genetic factors, men of lower socio-economic means are more likely to die of diseases that are curable. It’s completely unfair.”
Kestner, whose grandfather had prostate cancer, says she cares deeply about bringing people together. She estimates that 94 cents of every dollar raised at the ZERO event will go to support lifesaving programs. Racers can participate individually or in teams. Current teams include the Saluda Sundogs, the Asheville Abbvie Advocates, the Screaming Eagles and the WNC Prostate Support Group; new teams are also welcome.
“This event helps men feel comfortable and know that they’re not alone on this journey,” says Kestner. “We’re bringing prostate cancer out of the darkness and letting folks know that they have a great support system.”