Interviews with a Patient and an Expert
“As fast as my PSA was rising, if another 12 months had gone by, who knows?”
Barney Morris was only 41 when he was diagnosed with prostate cancer during a routine annual physical in 2004. He had no symptoms; just an elevated PSA test – the number was 4.2. (A man in his forties should have a PSA lower than 1.) He had a biopsy; cancer was found, and then he had surgery to remove his prostate.
What happened next? We’ll get to that in a minute. First, it’s very important to mention a few key points:
*At 53 now, Morris is still far younger than most men who are diagnosed with prostate cancer; in fact, he’s younger than many men are when they wonder if they even need to get screened for prostate cancer.
*Morris is of African descent, and African-American men are the group – out of all men in the world – hardest hit by prostate cancer. That puts him in a high-risk group of men who need to start screening for prostate cancer at age 40. African-American men are 1.6 times more likely to get prostate cancer, and more than twice as likely to die from it.
*Morris is very lucky that all this happened back in 2004 – because today, his cancer might not have been detected so early. Today, many doctors are not screening their patients for prostate cancer. This is because in 2012, the U.S. Preventive Task Force (USPSTF) recommended against PSA screening for prostate cancer for men of “average risk.” As a result, many primary care doctors are not certain that there is a benefit to screening and early detection, and some men who should get screening do not. (In contrast, the American Urological Association recommends that prostate cancer screening – a blood test and a rectal exam – begin at age 40.)
Now, with all this in mind, let’s go back to Barney Morris. A year after his prostate was removed, his PSA came back. “The number started to quadruple about every 30 days,” he recalls. He underwent salvage radiation in 2006. “Since then, I have been cancer-free. My PSA has remained nearly undetectable.”
Morris’s original surgery was in Tallahassee. Because of his job, he moved to Tampa, where he had external-beam radiation therapy at Moffitt Cancer Center. At Moffitt, he met radiation oncologist Kosj Yamoah, M.D., Ph.D., one of the world’s foremost experts in prostate cancer in men of African descent. Morris has spent the last decade giving back, getting involved with prostate cancer and patient advisory groups, reaching out to friends and to community and civic groups and churches, “speaking primarily to African-American men and their families,” he says. “My goal is to demystify the disease, and also encourage these men to have regular physical exams and when it comes to prostate cancer, to stress the importance of early detection.”
Morris has encountered two big problems facing the men he has been talking to: One is the lingering stigma of prostate cancer, “its effects on sexual function and incontinence. But even before that, the rectal exam.” Many men are afraid, or just plain reluctant, to get a rectal exam. “Some men say they would rather not know if they have prostate cancer, because of the side effects from the treatment. I have been trying to educate, to tell people that there’s nothing to be ashamed of in discussing the disease.”
Especially the genetic connection. “I found out I had prostate cancer in the family: two uncles on the maternal side, one diagnosed at age 52, the other in his mid-fifties. I wasn’t aware of either one until my diagnosis.” The family didn’t talk about it, “because of the stigma.” Like Morris, men in these two highest-risk categories tend to develop prostate cancer at an earlier age. Morris has shared his diagnosis with other family members “in hopes of early detection, so that they would take preventive measures to have a better outcome.”
The other thing “that’s really hurt is definitely the U.S. Preventive Task Force’s recommendation.” Morris is blunt. His cancer was found because he worked for the Postal Service. “My initial high PSA was detected in a routine exam. Shortly after the USPSTF guidelines came out, they discontinued paying for PSA tests as part of a routine physical. Just imagine if that had been the case with me. As fast as my PSA was rising, if another 12 months had gone by, who knows?”
Although most urologists disagree with the USPSTF’s recommendation, many primary care physicians have followed it, Yamoah says. He hopes stories like this will educate primary physicians that “if a young African-American man walks into a primary care physician’s office, that doctor needs to know that this man needs to be screened.”
Instead, specialists such as Yamoah and Schaeffer who treat prostate cancer “are beginning to see patients coming to the clinic with more advanced disease,” cancer that didn’t get picked up early, when it is easiest to treat. “The Task Force recommendation is actually having a negative impact on the general population. I hope these guidelines will change, because we are actually going backwards when we don’t take everything into consideration. Yes, there is a major problem with overdiagnosis and overtreatment of prostate cancer. But this is a heavy-handed solution to the problem.”