When Thomas Farrington was diagnosed with prostate cancer in March 2000, he didn't know what all his treatment options were, but the radical treatment that included surgery didn't sound like a viable plan for an otherwise healthy man.
"I kind of looked at it as a death sentence," said Farrington, who lost his father and both of his grandfathers to the disease.
"I had to start from Ground Zero. I did some research and decided upon a different treatment other than surgery. I had two forms of radiation simultaneously."
And then a year after treatment, Farrington wrote a book and founded the Boston-based Prostate Health Education Network (PHEN), a nonprofit organization that focuses on prostate education and awareness for black men.
Prostate cancer is the second leading cause of cancer in men in the United States and black American men have a higher incidence of prostate cancer than any other race. They also are twice as likely to die from the disease than men of other races.
Farrington was in Washington, D.C. last Thursday, for PHEN's 8th Annual African American Prostate Cancer Disparity Summit.
Farrington said the summit, in conjunction with the Congressional Black Caucus Foundation's Annual Legislative Conference, aimed to call attention not only to the "epidemic proportions" of prostate cancer in the black community, but also to challenge the recent recommendation of the U.S. Preventive Services Task Force against PSA screenings to detect the disease.
Last fall, the task force issued a statement saying that many men were harmed as a result of prostate screenings and that few benefitted. After a storm of protests, the task force amended its recommendation in May to say that "before getting a PSA test, all men deserve to know what the science tells us about PSA screening: there is a very small potential benefit and significant potential harms. We encourage clinicians to consider this evidence and not screen their patients with a PSA test unless the individual being screened understands what is known about PSA screening and makes the personal decision that even a small possibility of benefit outweighs the known risk of harms."
The task force recommended against screening for prostate cancer until a better test and better treatment options become available.
The studies on which the recommendation was based, however, did not include a significant pool of black men or men at high risk for developing prostate cancer.
"Both trials had a notable paucity of African-American men in their studies," said Dr. Chiledum Ahaghotu, chief of urology and associate professor of surgery at Howard University Hospital.
"The numbers were so low it would be inappropriate, I think, to make recommendations based on these studies."
Ahaghotu said that while the PSA test isn't perfect, the results are a good starting place for a patient to begin a conversation with his health care provider on whether and what kind of treatment is necessary.
If the PSA shows the presence of cancer, Ahaghotu said, "One, you know you have the disease and, two, you understand how aggressive your disease is by [having a] biopsy."
Before having a screening, he added, a patient should have a conversation about screening with his doctor to determine if it is right for him or right for him at this time.
"And then after having that conversation, if you are screened and the results are positive, then you need to have another conversation about whether you get treatment or not," said Ahaghotu, who has a paper coming out in the Journal of the National Medical Association sometime next month about the collective benefits of having an early education and diagnostic process, which includes encouraging patients to develop health-seeking behaviors that have lots of benefits in a number of areas, including warding off some cancers.
"Anecdotally, I have had patients come in who were a little bit leery of whether they should be screened again," Ahaghotu said. "I think [the task force recommendation] is sending the wrong message out into the community."
"I would have never known that I had prostate cancer if not for a PSA, so I don't understand why a task force recommends against testing," said Jerry Bembry, a noted sports journalist and lecturer at Morgan State University in Baltimore, who just celebrated a clean bill of health one year after surgery for prostate cancer.
"I was 49 years old when I was diagnosed, and I'd like to think I have a lot of life ahead of me. Without a test? That's leaving my life to a roll of the dice," said Bembry who lost a brother and two uncles to the disease.
"They used a double standard," Farrington said. "In the screening trials they used, they used another treatment that was not a screening treatment and extrapolated that to make recommendation for black men. It's more than [comparing] apples and oranges."
In the meantime, this week's summit kicks off on Capitol Hill in the Russell Office Building with Sen. John Kerry (D-Mass.), a prostate cancer survivor, who helped pass a Senate Resolution in July stating that prostate cancer rates among African-American men has reached epidemic proportions and urges increased cancer research, education and awareness.
Rep. Gregory Meeks (D-NY), introduced a similar resolution in the House of Representatives.
Thursday's session was intended, Farrington said, "to get a sense of Congress and to get a sense of the Senate transformed into action."
"We are bringing together some of the leading minds on this whole issue and we're going to address the treatments that they used."
For details on other events at the summit, visit www.rapcancer.org.