Prostate Cancer Advocacy Groups See Knowledge Gaps Concerning Disease Stages and Related Treatment Options
Tony Berberabe, MPH
The complexity of treating and managing prostate cancer during every stage of the disease, and the involvement of the number of health care providers who treat it, only emphasizes the need for more education for patients and their caregivers. Given each individual patient’s journey on this winding road, it’s important to tailor treatment plans to address their needs.
Although there are treatments available, “there are great knowledge gaps on what to do upfront to treat the disease,” Howard Soule, Ph.D., chief science officer at the Prostate Cancer Foundation, who served as moderator during a roundtable discussion involving prostate cancer advocacy groups at the 2018 American Urological Association. In addition to the Prostate Cancer Foundation, representatives from Men’s Health Network, ZERO, Us TOO, Prostate Cancer Education Council, Prostate Cancer International, Prostate Cancer Veterans Awareness, Malecare, National Alliance of State Prostate Cancer Coalitions, Matt Cooperberg, M.D., MPH, associate professor of Urology at the University of California San Francisco (UCSF), Nanette Perez, nurse practitioner, UCSF, and prostate cancer survivor, Terry Fisher, rounded out the discussion.
The group came together to discuss gaps in knowledge concerning the prostate cancer journey, including nonmetastatic castration-resistant prostate cancer (nmCRPC) and metastatic disease. “We need better molecular, clinical and pathologic predictors of who should be treated and who should be simply observed,” said Soule.
For men with prostate cancer that has not spread, but whose prostate-specific antigen (PSA) level is rising despite receiving hormone deprivation treatment, until recently, there have been few treatment options. Historically, these patients have had a poor prognosis and management of the cancer at this stage, remained an enigma to physicians. In February 2018, however, the FDA approved Erleada (apalutamide) for the treatment of patients with nmCRPC based on a clinical trial called SPARTAN. Prior to the approval, the goal of treating nmCRPC would be to delay the development of metastases in the hope of delaying symptoms and extending survival.
When a man first hears the diagnosis of prostate cancer from his physician, there is usually that moment of silence as he tries to process this life-changing news. Each patient may have different levels of knowledge about the disease, he may have different questions, depending on that prior knowledge, and he may have different priorities and plans in his life.
“That’s where, we as healthcare professionals, need to step in and determine where the patient is, in terms of his understanding,” said Nannette Perez, NP, a nurse practitioner at the University of California San Francisco. Perez has participated in community outreach and education programs targeting populations at high-risk for prostate cancer. “We want to meet them where they are and bridge that gap with the information that they need, so that they can make informed decisions moving forward.”
Recounting his own experience in 1994, Terry Fisher shared his story about learning he had prostate cancer with the group. “Going into my yearly physical examination, I did not know anything about prostate cancer or the PSA test back then.” After learning he had a Gleason score of 8 and a PSA of 16, Terry tried several treatments to control his cancer, and he continues to live with nmCRPC to this day.
One action item to help men and their caregivers feel empowered involves their medical records, said Jan Manarite, executive vice president of Prostate Cancer International. “We want patients to develop a basic understanding about what their medical records are telling them, so I ask them to circle different medical terms in their records, and search for them in Google,” said Manarite. “This way, they can target their research efforts, and develop questions to ask their physician.”
After conducting their research, patients often come to the realization that everyone’s cancer is different, said Manarite. But the next question for your physician is, “How is my cancer different?” One of the main goals of Prostate Cancer International is to provide the patient with better questions for their physicians, “because better questions result in better answers.” Taking this patient-centric approach cannot be emphasized more.
“It’s important to realize how individualized and how personalized treatment really is,” said Cooperberg, a fellow of the American College of Surgeons, the American Urological Association, and the Society for Urologic Oncology. Treatment should be carried out at high-volume cancer centers and referral centers. “The urologist who sees two patients with prostate cancer a month just doesn’t have the experience,” said Cooperberg. Patients who come to the cancer center can benefit as much from the surgical and medical treatments as well as the support services, he said. Large cancer centers give patients access to the physicians “who eat and breathe nothing but treating patients with prostate cancer. It’s what we do.”
Some subpopulations of patients, for example, veterans, don’t have access to reliable, trustworthy educational materials, said Michael Crosby, founder of Prostate Cancer Veterans Awareness. A retired US Naval Commander, Crosby pointed that “exposure to agents, such as Agent Orange, has prompted the Veterans Administration to reach out to veterans about this particular health issue, but the same cannot be said for prostate cancer awareness and education.”
The goal of Crosby’s group is to educate veterans about their risk for prostate cancer and “to coordinate the existing resources developed by the Prostate Cancer Foundation, ZERO, Us TOO and other advocacy organizations, sharing them with existing veterans’ organizations and networks.”
At the conclusion of the discussion, Soule said, “I think the information discussed during the roundtable has been a useful starting point to get information out there about important new treatments for men with all stages of prostate cancer.”