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Prostate cancer is the most common solid cancer among men, with 1 in 8 men being diagnosed in their lifetime and 1 in 44 dying from the disease.
This rate of death has declined by about half from 1993 to 2022 due to earlier detection and advances in treatment, according to the American Cancer Society, signaling the success of public health policy and scientific innovation.
But as Merel Nissenberg, President of the National Alliance of State Prostate Cancer Coalitions (NASPCC), explains during her conversation with Bio.News, there is still more work to do. As a result, the nationwide coalition works on a variety of fronts, including awareness and education, public health advocacy, facilitating discussions on medical innovations, and much more.
Notably, the NASPCC’s Annual Meeting, held this year from November 14-16, at the Four Seasons Hotel in Washington D.C. is a critical mass of researchers, doctors, patient advocates and more to discuss the issues that prostate cancer patients still face today, including: diagnosis, treatment modalities, new imaging and therapies, side effects, and sexual health for patients. The event is also a chance for the organization to set their plan for the next year of advocacy work.
“It’s a whole weekend of education, sharing of best practices, and presentations by outstanding faculty. We bring in one person from every state, as well as other guests,” explains Nissenberg. “And we make sure that we can pay for everything so there is no barrier for entry.”
Bio.News sat down with Nissenberg to discuss how the coalition helps patients and doctors break down stigma, bridge the conversational gap when it comes to prostate cancer, and highlight how others can get involved in the coalition’s work.
The power of informed decision making
For many patients, prostate cancer can be a sensitive subject to talk about—with loved ones and healthcare providers alike. One of NASPCC’s most effective tools for patients are their laminated resources, a series of free durable double-sided informative resources tailored specifically so that patients and physicians can have productive conversations about prostate cancer screening and risk, as well as treatment options. These resources demystify many prostate cancer topics and help patients be proactive when it comes to addressing their prostate cancer risk, or navigating treatment.
The most popular of these resources is their informed decision making resource. Here are a few questions that patients can pose to their physicians when discussing screening and treatment.
1. What is my risk, and what tests are there?
As NASPCC explains, there are two main tests for prostate cancer: the prostate specific antigen (PSA) blood test and the digital rectal exam (DRE).
The PSA test in particular begins at 40 years of age and allows physicians to set a baseline for future screening. As Memorial Sloan Kettering Cancer Center explains, the PSA test measures the level of a protein made by cells in the prostate gland in a man’s blood. PSA levels rise when there’s a problem with the prostate.
PSA levels typically stay low, but if a physician discovers an elevated PSA, along with an abnormal DRE, a biopsy is typically the next step.
Yet, as Dr. Judd W. Moul explained during the July 2022 edition of NASPCC’s Prostatepedia magazine, non-compliance with follow up procedures can be a dangerous and unnecessary risk too many patients take.
“Unfortunately, we have a very high no-show rate,” Dr Moul explained.
He continued: “We have two extremes. We have lower socioeconomic patients who may distrust the healthcare system, or have low health literacy and are confused. They may not know the bearing of an elevated PSA so they don’t show up, or they might not show back up for additional testing. On the other hand, we have very high socioeconomic patients who are all over the internet, reading everything they can. They also have distrust because they don’t trust the PSA, they want other testing done to convince them that they need a further workup.”
Yet, as Dr. Moul also explained, conversations with loved ones about prostate cancer risk can be a powerful tool to help alleviate non-compliance.
“My brother in law is now 60,” he said. “I’m very close with him, but I never talked to him about health issues. My sister-in-law asked, ‘Do you think he should have a PSA test? He’s never had one.’ I just assumed he had… but he’s never had a PSA test. And I said, ‘Ah, how could I have not brought that up before?’”
And, as NASPCC explains, talking to your family about prostate cancer risk is important for a number of reasons.
2. What is the importance of family history, ethnicity, and occupation?
A family history of prostate cancer, especially in a first-degree relative (father, brother, son), increases your risk of developing prostate cancer, explains NASPCC. In fact, having a father or brother with prostate cancer more than doubles a man’s risk. So open conversation among families is key.
Additionally, certain ethnicities carry a higher risk of developing aggressive prostate cancer.
“Black American men clearly have a higher incidence rate and higher death rate from prostate cancer compared to white American men,” explained Otis Brawley, MD in the October 2023 edition of Prostatepedia, published by NASPCC. “That has been documented for well over 60 years now. In the last 20 to 25 years, we started getting some information from Africa. We’ve also gotten some information from South America and the Caribbean. It’s true that men of African ancestry and the Caribbean and South America, also have higher rates of prostate cancer, perhaps not as high as in the United States.”
Specifically, Dr. Brawley explained, men with ancestry from northwest sub-Saharan Africa have a heightened risk; interestingly, men with ancestry from eastern or southern Africa have a much lower risk of prostate cancer—even lower than their European counterparts.
And unfortunately, many black men in the US still face severe healthcare access barriers (an issue that is only compounded by historic mistrust in healthcare systems).
That makes education and informed decision-making particularly important, thus putting the power in the hands of patients and ensuring that they are properly educated to make the best healthcare decisions for themselves.
Other groups of men who are at increased risk are those who are exposed to certain harmful substances at work, such as pilots and firemen. Pilots, for their part, are exposed to higher levels of cosmic radiation, which the Centers for Disease Control and Prevention (CDC) says, “causes cancer in humans. Ionizing radiation is also known to cause reproductive problems.”
Additionally, men exposed to chemicals like Agent Orange, should also be sure to stay on top of their prostate health. “Prior exposure to Agent Orange may also increase the risk of developing aggressive prostate cancer, as would certain genetic mutations,” writes NASPCC.
Lastly, men with certain genetic mutations such as BRCA1 and BRCA2 also have a higher risk. The BRCA genes “produce proteins that help repair damaged DNA,” explains the National Institute of Health’s (NIH) National Cancer Institute. “Everyone has two copies of each of these genes—one copy inherited from each parent. People who inherit a harmful change (also called a mutation or pathogenic variant) in one of these genes have increased risks of several cancers,” including prostate cancer.
3. What if I need a biopsy?
Biopsies are stressful procedures no matter where they are done, and prostate cancer biopsies are no different. Luckily, as NASPCC explains, there are a number of steps that physicians will take before recommending a biopsy for men.
“Your physician will want to rule out an infection and/or an enlarged prostate, both of which can cause the PSA levels to increase,” writes NASPCC. “A repeat PSA should be obtained.” More specifically, asymptomatic patients with a high PSA and at least a 10-year life expectancy should have a repeat PSA.
“There are other tests such as free PSA, 4k, PHI and others which may be useful in some instances,” NASPCC continues. “Free calculators can help integrate your PSA with your age, family history, and other parameters to estimate your risk of prostate cancer and high-grade prostate cancer.”
Based on the specific risk, physicians may recommend “Active Surveillance” (AS) as prostate cancers that are low-risk, non-aggressive, may not require treatment.
“Currently there are tools, including genomic and imaging tests, that help determine who is an appropriate candidate for AS,” writes NASPCC.
But if a man does ultimately need a biopsy, it is important to remember that the risks are low. “There is a risk of bleeding which is usually minor, and of an infection, which is reduced through pre-biopsy antibiotics,” writes NASPCC. “Most men would think this is worth the risk, but this is a personal decision.”
Learn more
NASPCC has positioned itself as an empowering repository for prostate cancer information, which delves far beyond the screening and diagnosis phase to include information about treatment and breaking medical innovation in the space.
And to help in that mission, NASPCC is currently fundraising to bring together participants for their November meeting. “We are looking for sponsors to help underwrite the expenses involved in bringing together patients and advocates from 46 states,” said Nissenberg, “as well as an outstanding faculty to have a weekend of education and sharing of best practices in prostate cancer.”
To learn more, you can contact Merel Nissenberg at mgrey@health.ucsd.edu.
And to learn more about prostate cancer and how you can keep yourself safe, visit https://naspcc.org/index.php
