IT’S THE NEWS NO ONE WANTS TO HEAR: You could have cancer. But in October 2015, that was the wake-up call that spurred Brian Jones to finally get serious about his health after years of neglecting his body.
Jones, a pharmacy fulfillment manager, had passed out at work for the third time that fall. In the aftermath, his wife, Angie, insisted he see their primary care physician (PCP). At the appointment, his doctor told him, “You’re killing yourself,” as Angie Jones nodded in agreement.
For years, the father of three had worked 12-hour days, six days a week in a high-stress environment. He was overweight and had Type 2 diabetes. He suffered from hypertension and struggled with depression and anxiety, mental health conditions diagnosed in 2008. He had endured several spine and foot surgeries for injuries sustained from years of playing basketball. And he too often returned to work sooner than his doctors advised.
“My body was breaking down, and my job was so intense. I could never get a chance to have my body heal,” says Jones, now 57. “My PCP was frustrated with me. So was Angie.”
Brian Jones enjoys a moment with his wife, Angie. Photo by Robyn Alwi
Jones’ doctor asked him an “avalanche” of questions and ordered a battery of tests, including a cardiac stress test and a prostate-specific antigen (PSA) blood test. She conducted a digital rectal exam, which revealed Jones had an enlarged prostate.
When blood work came back indicating an elevated PSA of 8.6—a sign he might have prostate cancer—Jones jumped into “business” mode and started doing online research about the disease. While waiting for results from a second PSA test and a biopsy, he began compiling a list of the top physicians who treat prostate cancer.
“I started to look at this as a business problem. If it’s positive, who do I want to treat me? I wanted the best,” he says.
Tackling Prostate Cancer Head On
By the time the biopsy results confirmed he had stage II prostate cancer in November 2015, Jones had “all his ducks in a row.” He chose urologist Alan Partin at the Johns Hopkins Hospital in Baltimore, who died in 2023, and sent his medical records there; he set up an appointment and made sure his health insurance would cover the services.
After consulting with the experts at Johns Hopkins, Jones had a decision to make: robotic surgery to remove his prostate or radiation that would kill the cancer cells. Weighing heavily on his mind was the potential for recurrence. He did additional research, including talking with an uncle who worked at the University of Texas MD Anderson Cancer Center in Houston and a friend of his uncle who worked there as a radiologist. He decided to undergo a robotic prostatectomy, a minimally invasive procedure in which a surgeon uses miniaturized robotic instruments to pass through several small keyhole incisions in the patient’s abdomen and remove the prostate and nearby tissues. The procedure is less invasive than a conventional prostatectomy, which requires an abdominal incision extending from the navel to the pubic bone.
Black men face a higher death rate from prostate cancer than white men and are underrepresented in clinical trials.
Prostate cancer is the second leading cause of cancer death in men in the U.S. The disease is particularly deadly for Black men, who die at more than twice the rate of white men.
Compared with white men, Black men are more likely to receive a prostate cancer diagnosis at a younger age, in their 40s and 50s, and they’re more likely to be diagnosed with a more aggressive prostate cancer.
Many factors could be contributing to these disparities, including a general mistrust of the health care system caused by a history of racial segregation and mistreatment; lack of access to information about prostate cancer and treatment options; poor physician-patient communication; and fear and stigma of the disease, notes Kelvin Moses, a urologic oncologist at Vanderbilt University Medical Center in Nashville, Tennessee, who recently co-authored a review describing these disparities.
Experts stress the importance of the physician-patient relationship and the need for more primary care physicians to screen patients for prostate cancer. “There are a lot of efforts to engage primary care colleagues. Those are really the first people men see,” says Moses.
Men also must take preventive steps like getting screened for prostate cancer and not being afraid to seek treatment. Doctors can address issues that might arise with sexual and urinary functions resulting from treatment, Moses says.
Research also shows Black men are underrepresented in clinical trials, making it difficult for investigators to understand how the disease affects them. That’s one reason why prostate cancer survivor Brian Jones chooses to participate in clinical trials. He recently took part in a study to determine if taking a supplement can reduce the development of heart disease in men who have been treated for prostate cancer.
Although the trial was time-consuming—weekly, daylong visits to the hospital and multiple blood draws—Jones is committed to doing all he can to advance knowledge about Black men’s treatment options and to improve outcomes in this understudied population.
Jones also makes a point to share his experiences with other Black men, who he hopes will decide to enroll in clinical trials, and with organizations like Zero Prostate Cancer that help encourage clinical trial participation. Getting the word out is critical, he says. Research shows low Black enrollment in clinical trials occurs not because of a lack of willingness among the Black community, but because of a lack of information about active clinical trials.
“If this comes back as something effective, I will have done my job,” Jones says of his clinical trial participation. “Things like this are very important. It’s not about my life; it’s about the lives of other men.”
In February 2016, Jones underwent the surgery at Johns Hopkins. The cancerous tissue was successfully removed, though he experienced complications that kept him in the hospital for four days. There was bleeding in his stomach, which required two blood transfusions, recalls his wife, who assumed the role of his caregiver. Jones says the excessive bleeding was likely due to his multiple underlying conditions and weighing more than 300 pounds.
Back home in Pennsylvania, Jones had a hard time walking for the first few weeks—possibly exacerbated by earlier surgeries to fix stomach hernias and spinal problems—and needed help getting in and out of bed and going downstairs to the bathroom. His wife, two sons and a godson who flew in from Florida worked together to get him up and around. Toward the end of six months of physical therapy—which lasted longer than usual due to mobility issues, excess weight and spreading out the visits due to their cost—he started to feel better and began to focus on improving his health.
Being Proactive About Good Health
Jones no longer lets his own health take a back seat in his life. His daily routine, which starts at 5 a.m. or earlier, includes drinking plenty of water, meditating, exercising (usually stretching and either walking or jogging), fasting from after dinner to late the next morning, eating healthy snacks like unsalted nuts, and abstaining from meat. He has been a vegetarian since spring 2020, and during the pandemic, he became the family’s primary cook. Since his diagnosis, Jones has shed about 70 pounds and is no longer diabetic.
Getting prostate cancer “just changed his whole mindset. He wanted to get healthy,” Angie says. His pharmacy job had made him anxious. “We used to call him the drill sergeant. He would come home, and it was just tense,” she says. But now he is able to channel that anxiety for good. “He wants to know, he needs to know, what is going on in his body, what’s happening in other men’s bodies [and] how he can help others going through this,” she says.
Prostate cancer survivor and patient advocate Brian Jones stands with his wife, Angie, their sons, Jordan and Jason, and his mother‑in‑law, Jacqueline Lawson, at Riverside Park in Harrisburg, Pennsylvania. Photo by Robyn Alwi
Jones keeps notebooks of information detailing what he has learned about prostate cancer and his health in general, his wife says, and he continues to learn from organizations like Zero Prostate Cancer, a nonprofit patient education and advocacy group. Now in full control of his health, he credits Stacy Loeb, a urologist who serves on Zero’s Health Equity Task Force, on which he also serves, for teaching him the importance of a plant-based diet for prostate cancer survivors.
“Diet is extremely important. It is something that we can all control,” says Loeb, who specializes in prostate cancer at New York University’s Langone Health and with Veterans Affairs in Manhattan.
She notes that multiple studies have shown men with prostate cancer or at risk of developing the disease who eat a more plant-based diet have fewer urinary symptoms like incontinence, less problem with erectile dysfunction and a lower risk of disease progression. Loeb says she’s a “big proponent” of eliminating meat from the diet of anyone who has been diagnosed with or is at risk for prostate cancer.
Advocating for Others
In addition to looking after his own health, Jones wants to be an advocate for other Black men, starting with his brother-in-law, who was diagnosed with prostate cancer about six months before him. His brother-in-law is doing well now and gets checked every six months, Jones says. Jones’ father and father-in-law also had prostate cancer; his father is doing well, though his father-in-law died from an unrelated medical condition.
Since his prostate surgery in 2016, Jones’ outreach has extended well beyond his family. He estimates he’s helped more than 200 people, both men with prostate cancer and their family members. For Zero Prostate Cancer, he participates in the MENtor peer-support program and serves as a Zero Summit ambassador. As a mentor, Jones assists other men diagnosed with prostate cancer. One man Jones is paired with was also diagnosed with stage II prostate cancer in his late 40s and is asking many of the same questions Jones wondered about when he was first diagnosed. “We are brothers,” Jones says.
Brian Jones’ advocacy is informed by the example set by his mother.
While cancer advocacy is new to prostate cancer survivor Brian Jones, giving back was something he learned by example.
His late mother, Jeanette “Gussie” Robinson Jones, was “loved and respected by everyone in the community,” he says. People in their Philadelphia neighborhood came to her with their problems, and Jones learned the power of support early. “She taught me so many things,” he says, like the importance of community and doing the right thing.
With his mother gone, Jones reminds his two younger brothers to take charge of their own health. They’ve both been screened for prostate cancer, though they were reluctant to do so until Jones reminded them it’s what their mother would have wanted. “Don’t let her down, and don’t let me down,” he told them. He makes sure they get their physicals each year.
In addition to his mother’s example, Jones learned the importance of being an advocate when raising his three children. His youngest son, then 9, suffered a life-altering injury at school when he leaned back in a chair and hit his head on a radiator. Although the accident damaged his motor skills, at 26, he’s finishing college and working in IT. Jones and his wife also have assisted their other son, now 31, who has a developmental delay.
“My goal has always been to support them,” he says.
Sometimes, his advocacy takes place in the community. He recalls being approached at one event by a woman and her daughter. They were worried about their loved one’s mental health after a prostate cancer diagnosis. “What can we do? We don’t want to lose him. He’s not talking to us. Can you talk to him?” the man’s wife asked Jones, who later had a video chat with the man.
“He deserves the same kind of information and life that I have,” Jones says. “We can walk through this together.”
Angie says her husband never misses an opportunity to educate others or offer his help. She remembers a quinceañera birthday celebration the couple attended. “He was asking a man at our table if he had gotten his [prostate] exam,” she says. “He wants to get the word out. I’m very proud of the hurdles he’s overcome and how he wants to help other people.”
His advocacy also extends to helping men navigate appeals for needed health care services. He’s been working with a man who had his bowel nicked during a radical prostatectomy; his insurance company won’t pay for the damage to be reversed. “He’s in pain,” Jones says, and the insurance provider is a major barrier to him getting better. Jones describes his role as being an information broker for the man and his family, helping them find a surgeon to repair the damage and working with the surgical office to get the insurer to pay.
Since retiring from his pharmacy job in late 2017, Jones’ advocacy work totals at least 30 hours a week and has become a new career. “My commitment is to the men and families that live with prostate cancer and those who passed from it,” he says. “I’m looking at leaving a legacy. It’s so rewarding to me and my family.”
Jones says he does what he can for men with prostate cancer, and although his cancer is in remission, he feels an urgency to leave a mark.
“I’m not sure if I’m going to live another 20 years or another 20 days, and I want to leave a legacy,” he says. “Men’s lives are at stake, and this is very important for me.”
Cancer Today magazine is free to cancer patients, survivors and caregivers who live in the U.S. Subscribe here to receive four issues per year.
