Illinois Attorney General Kwame Raoul knew that he was at risk of developing prostate cancer. His family history seemed inescapable. He lost his father, as well as his paternal and maternal grandfathers, to the disease.
Raoul also knew he had additional risk factors: He is Black and of Caribbean ancestry. His father, who was a community physician, and his mother had grown up in Haiti before they immigrated to Chicago.
Prostate cancer develops more often in Black men and in Caribbean men of African ancestry than in other races, according to the American Cancer Society. Overall, prostate cancer is the second leading cause of cancer death in American men, after lung cancer.
Raoul’s family history of prostate cancer weighed heavily on him, but it also spurred him to take action. “It was a burden knowing and losing loved ones,” he says, “but it was also a valuable warning signal to me that I needed to take special steps.”
So, at age 36 — an earlier age than most guidelines recommend — Raoul began routinely taking the blood test that screens for prostate-specific antigen (PSA) in the blood.
What is a prostate and PSA?
The American Cancer Society recommends that men with an average risk of prostate cancer discuss the benefits and harms of PSA screening with their doctor when they are 50. Black men and men who have a first-degree relative (father or brother) diagnosed at an early age should have the discussion at age 45; men with more than one first-degree relative diagnosed at an early age should discuss screening at age 40.
Even then, the use of PSA as a prostate screening test is somewhat controversial, so men should discuss the pros and cons with their doctor. It’s not clear if the benefits of PSA screening outweigh the risks for some men, the American Cancer Society says. That’s because elevated PSA levels aren’t clear signs of cancer. And also because some prostate cancers are slow-growing, don’t spread, and may not need treatment.
The PSA is not a perfect test because it may produce false positive results in men with a high PSA level caused by benign prostatic hyperplasia (enlarged prostate) and may overdetect small cancers that are not life-threatening, says urologist Kevin McVary, MD, director of the recently opened Men’s Health Center at Loyola Medicine.
McVary points out that, nevertheless, many — though not all — professional societies recommend doctors discuss the PSA test with men, so they can make a shared decision about screening. Depending on the results, screening may take place yearly or every two to three years.
The walnut-size prostate gland is located below the bladder and in front of the rectum. It makes a thick fluid that is part of semen and is important in sexual and urinary function.
For a long time, doctors only had the PSA test to screen for prostate cancer, says Ashley Ross, MD, PhD, an associate professor of urology at Northwestern University Feinberg School of Medicine. An elevated score would lead to a second PSA test to confirm the first one, potentially followed by a biopsy. But this approach could result in unnecessary biopsies and diagnosis of slow-growing cancers, he says.
“The PSA blood test is not specific to prostate cancer and has a lot of limitations, so you can have misleading results that lead to unnecessary prostate biopsies,” Ross says.
He adds, “Since we couldn’t understand which cancers to treat and which ones not to treat, there was a lot of overdetection of cancer and a tendency to overtreat low-risk cancers with radiation and prostatectomies [removal of the prostate] that can have side effects of urinary and sexual dysfunction and sometimes bowel issues.”
Today, screening for prostate cancer is more finely tuned, and often doctors recommend active surveillance over treatment for low-risk cancers.
“Screening has evolved a great deal,” Ross says. “We now have a tiered approach that has been part of the mainstream for the past five years.”
He says that the PSA screening is only the first step. If PSA levels are elevated, people will take a urine test or a prostate health index (PHI) blood test. The PHI test combines three tests into a single score to better help doctors determine the risk of cancer.
If the PHI blood test result indicates a risk of cancer, it will be followed by an MRI, so a radiologist can determine whether certain areas appear to be cancerous and which areas should be biopsied.
Ross points out that preliminary results of this approach at Northwestern show that more than half of men referred for elevated PSA levels do not need to go on to a biopsy. Plus, use of the MRI has increased the detection of clinically significant cancers, he says.
“The MRI shows us if there are suspicious areas of the prostate, so many men who would have had biopsies in the past are now counseled to avoid them,” he says. “We are reducing the detection of insignificant cancers while not missing the significant ones that might warrant treatment.”
For men with a lower risk, doctors may recommend active surveillance. The word “active” is key, McVary says. The person will have blood tests every six months, a biopsy once every 12 to 18 months, and, in some cases, an MRI to further look for hidden components of disease.
After 10 to 15 years of active surveillance, men with low-risk prostate cancer have low rates of the cancer spreading or of death from the disease, according to the Prostate Cancer Foundation. A Johns Hopkins study showed that less than 1% of men developed metastatic prostate cancer after they were on active surveillance for 15 years.
Keeping an eye on changes is important.
Raoul had been taking annual PSA tests with no significant findings. But one day in 2016, he stepped out of a meeting to take a phone call from his doctor, who told him that his PSA score had made a significant jump from the previous year. Based on the number, Raoul had an 18% chance of prostate cancer.
After a biopsy that confirmed the diagnosis, Raoul weighed his options and made the decision to have prostate surgery.
“I was certainly concerned about the side effects — which can be temporary incontinence and impotence — as any man would be. That was particularly frightening to me,” he says.
Raoul hid his diagnosis and his choice to have surgery from his mother, who was living in Florida, because he didn’t want her to worry. He only called to tell her on the day of the procedure.
For the first time, his mother revealed something about his father’s prostate cancer treatment. “She shared with me that my father had been afraid of the side effects of the surgery, so he had radiation seeds implanted,” he says. That treatment, used for certain men, uses small seeds to target radiation to the tumor, limiting damage to surrounding tissues.
Raoul went ahead with surgery, and his prognosis since then has brought nothing but good news. “I’m 56 years old, and I’m doing great,” he says. “I’m a happy man in all regards. I’m doing a PSA screening every six months. The cancer is undetectable, and there’s a very high probability that I’m cured.”
Raoul also talked to his son about the family’s risk for prostate cancer. “As a father of an adult son, I was able to share the family history with him when I was diagnosed, so he can be on the lookout going forward,” he says.
Raoul believes that it’s important to have public conversations about the need to talk to a doctor about cancer screenings. “Men, many of whom don’t embrace preventive healthcare generally, often wait until they recognize symptoms,” he says.
Ross, who underscores the significance of regular screenings for prostate cancer, says, “The key is to detect smarter, so we can catch the important cases early and cure with less harm.”