If you’re diagnosed with advanced prostate cancer, it’s easy to become overwhelmed. You may worry about everything from treatment side effects to whether you’ll be able to see your grandchildren graduate from high school. You also may worry about the care that you get from your health care team.
It’s a normal thing for any man with cancer to think about. But Black men may have certain concerns. Research shows that they’re more than twice as likely to die from prostate cancer than white men. They’re also more likely to develop prostate cancer at a younger age, to be diagnosed with a more aggressive disease, and to be diagnosed at later stages.
“It’s essential to find health care professionals who possess not only expertise in prostate cancer but also an understanding of the health disparities that disproportionately affect us,” said Charles Neblett, PhD, 83, a Black civil rights icon who was diagnosed with stage IV prostate cancer in early 2024.
The Importance of Building a Team
The first step to build trust in your prostate cancer team is to make sure that you have formed the right one for you. When Bob Alderman, 70, learned his prostate cancer had spread in 2018, he was referred to a local oncologist to discuss his options. He and his wife left the appointment in tears. “(The oncologist) was just brutal. Both about what I could expect going through treatment and my prognosis,” said Alderman.
At the urging of his wife, he made appointments with four more cancer specialists. He clicked with the first one he saw, Sandy Liu, MD, an oncologist at City of Hope in Irvine, CA. “She was young and just out of medical school. I had kids older than her,” he said. “But I was impressed by her passion. I felt that she would fight for me.” His hunch proved correct: Alderman has done so well that he returned to his great passion, race car driving, in early 2024.
When you interview different prostate cancer specialists, Neblett recommends that you look for ones who are up-to-date on the latest data and treatments. “You should feel comfortable sharing your concerns and asking questions about your treatment options,” he said. “The relationship with your health care team should be built on mutual respect and open communication.”
While trusting your prostate cancer care team is important for anyone, it’s especially important for Black people who may have more distrust in the health care system. This lack of trust has its roots in the Tuskegee study of the 1930s. David Ford, 66, explained that in this study researchers looked at the effects of untreated syphilis among Black men in the South. The researchers did not treat the syphilis, nor did they get informed consent from the men. Ford is a prostate cancer activist in Los Angeles who’s on the Board of Directors of ACS CAN, the advocacy affiliate for the American Cancer Society.
In 2015, Ford was diagnosed with colon cancer after he ended up in the ER when a tumor ruptured his colon. “I had put off scheduling my colonoscopy for years because as a Black man I had a lot of distrust in the health care system,” he says. But when his primary care provider recommended that he have an annual PSA (prostate-specific antigen) testing to screen for prostate cancer, he listened. In 2018, the results came back elevated and he was referred to a urologist for a prostate biopsy. He was diagnosed with early-stage cancer. But thanks to prompt radiation treatment, he’s now in remission.
Ford worked closely with his urologist to find a new oncologist to treat his prostate cancer. “It’s very important to pick an oncologist with good bedside manners,” he said. “Doctors see so many patients that it can be hard to get to know them on a personal level. But in order to build trust, you really want someone who will invest time into getting to know you, not just your prostate health.”
It’s smart to engage in shared decision-making with your prostate cancer care team, added Neblett. This is a process where you work closely with your doctors to find the best treatment plan based on your individual situation, including genetic factors and health history. You’ll want to discuss with your team all the potential treatments available to you, including hormone therapy, chemotherapy, immunotherapy, radiation therapy, or even clinical trials. And in some cases, you may want to do nothing at all and let the disease run its course.
Going Beyond Traditional Care
For some patients, prostate cancer becomes a family affair. Neblett’s son, Kwesi, created the #BlackProstateCheckChallenge in response to his father’s diagnosis. “It’s essential to assemble a team that recognizes this cultural tradition exists in many Black families,” said Kwesi. For the Nebletts, one core belief is to add integrative care into Charles Neblett’s treatment program. This means that they use complementary therapies in addition to regular medical treatments. “You should find a team that’s open to your medical and family beliefs for your own body,” said Neblett. This includes everything from prayer and spirituality to therapies to help better manage treatment side effects, such as acupuncture.
Another sign that you’ve found the right health care team is if they’re willing to go to battle for you financially. The average cost in the first year of treatment for those with Medicare with stage IV prostate cancer is about $92,000, according to a 2022 analysis. You want a team that’ll fight for your insurance to cover the most advanced prostate cancer treatments available, regardless of expense, said Kwesi.
The Importance of Being Open
When Jim Langlois was diagnosed with advanced prostate cancer, he was terrified. “It wasn’t just the thought, ‘Am I going to die?’" said Langlois, 55, a health care analyst, “It’s, ‘Am I ever going to be able to have sex again?’ ‘Am I going to become incontinent?’”
His rock to guide him through his diagnosis was his oncologist, Benjamin Garmezy, MD, at the Sarah Cannon Cancer Institute in Nashville. “I told him, like I tell all my patients, that you do not have to sacrifice quality of life to save your life,” said Garmezy. “I explained to Jim that the treatment I was recommending – hormone therapy, as part of a clinical trial – was the exact same treatment I’d recommend if a loved one were in a similar situation.”
One of the best signs that you can trust your prostate cancer care team, added Garmezy, is if they take the time to provide you with a detailed explanation of their recommendations. “I always joke that my role is to explain the method to the madness of why I suggest one treatment over another,” he said. “Ideally, you want a doctor who will be sensitive to your apprehensions and be able to provide reassurance.”
That level of connection is important for men, many of whom may feel uncomfortable talking about anxieties to friends and family. “A life with advanced prostate cancer can be extremely isolating,” said Langlois. “When I was diagnosed, no one at work ever came to my office to talk to me about it. They didn’t know what to say. If you have a care team who’s happy to see you and have a concrete plan that you’ve made together, you feel less alone. Your prostate cancer care team aren’t just your doctors – they become some of the most important people in your life.”
Show Sources
Photo Credit: DigitalVision/Getty Images
SOURCES:
Charles Neblett, PhD, 83, civil rights and prostate cancer activist, Russellville, Kentucky.
Bob Alderman, 70, race car driver and prostate cancer activist, Calabasas, California.
David Ford, 66, prostate cancer activist, member of the Board of Directors of ACS CAN, Los Angeles, California.
Kwesi Neblett, president of Community Projects, Inc, prostate cancer activist, Russellville, Kentucky.
Jim Langlois, 55, prostate cancer activist, Nashville, Tennessee.
Benjamin Garmezy, MD, oncologist, Sarah Cannon Cancer Institute, Nashville, Tennessee.
Cancer: “Racial Disparities in Black Men with Prostate Cancer: A Literature Review.”
Current Medical Research & Opinion: “Cost of Cancer Management by Stage at Diagnosis Among Medicare Beneficiaries.”
Association of Community Cancer Centers: “Comprehensive Care of Patients with Advanced Prostate Cancer Through Shared Decision Making.”
CDC: "About The Untreated Syphilis Study at Tuskegee."
