March 21, 2005
New support group launched for African-American men with prostate cancer
Clockwise from front left: Robbie Robinson and other prostate cancer survivors are getting support from DFCI's Athene Wilson-Glover, Timothy Gilligan, and Gary Bennett.
The participants introduce themselves by name, age, and the numbers that forever changed their lives: their PSA levels (blood test results signaling the likely presence of prostate cancer) and Gleason scores, indicating the aggressiveness of their cancer cells.
Seated around a table in a Smith Building conference room one recent evening, the dozen men are brought together by a common experience — being treated for or diagnosed with prostate cancer — and a common desire to discuss their concerns with others who know firsthand what they've been through. By session's end, they've listened to a Dana-Farber physician describe the treatment options for this disease, talked about some of their post-treatment frustrations, laughed occasionally, and sketched out ground rules and topics for future gatherings.
This first meeting of a new prostate cancer support group for African-American men offered fresh evidence of the emotionally recuperative power of shared experience. Men who, for the most part, hadn't known one another previously spoke about their concerns with a directness they might have withheld from even their closest family members.
At the gathering's conclusion, the sense of camaraderie was almost palpable. One visitor, an African-American health educator who had never been tested for prostate cancer, rose to announce his intention of having his PSA level checked as soon as possible.
"I was very encouraged by the number of men who came and the great distances they traveled," says Gary Bennett, PhD, of DFCI's Center for Community Based Research, who is a co-facilitator of the group. "It was interesting to see how quickly the group cohered and how readily the members shared their experiences. I think they did a great job of laying the groundwork for future meetings." Bennett, who studies ways of reducing racial and ethnic disparities in cancer risk factors, led the meeting with his DFCI colleague Timothy Gilligan, MD.
Prostate cancer strikes a larger proportion of African-American men than any other racial or ethnic group, and kills these men at more than twice the rate of whites. Physical exams and PSA tests to detect prostate cancer usually begin at age 50 in white men and, because of their heightened risk, at age 45 in African Americans (and in whites with a strong family history of the disease).
Dana-Farber launched the support group with the Prostate Health Education Network (PHEN), a national outreach organization based in Waltham. "This is the first time a prostate cancer support group has been formed to target the unique needs of African-American men in Boston," says PHEN's president and founder, Thomas Farrington. A prostate cancer survivor and author of the book Battling the Killer Within and Winning, he also co-leads the meetings. "Our hope is to reach men who are newly diagnosed with prostate cancer, as well as those who have already been diagnosed and continue to fight."
'Unique opportunity'
The new group is a collaborative effort of DFCI, PHEN, and the Greater Boston Chapter of the National Black Leadership Initiative on Cancer II. The NBLIC II, as it is known, was created by the National Cancer Institute in 1996 to reduce cancer rates among African Americans by working with community groups. Dana-Farber took the Boston chapter under its wing in 2003, the only such partnership between a major cancer center and an NBLIC branch in the country.
"We approached Dana-Farber with the message that this is a unique opportunity," says the chapter's director, Athene Wilson-Glover, a DFCI staff member. "The Institute agreed to fund the local chapter for a year as a pilot program. We have a lot to do this year to prove the arrangement should be continued."
Dana-Farber's Center for Community-Based Research worked with churches in Boston's minority neighborhoods to set the chapter's direction. Church leaders and parishioners were interviewed about their communities' priorities regarding prostate cancer. They spoke candidly about the barriers to prostate cancer screening, treatment, and research among African-American men and discussed potential solutions to this problem, including the involvement of community leaders in planning efforts.
By joining the NBLIC and PHEN, Dana-Farber can help change the perception — still prevalent in parts of the African-American community — that the Institute caters mainly to wealthy suburbanites, Wilson-Glover says. "We're working to dispel those beliefs and show that Dana-Farber is a welcoming institution that offers excellent services. Once people come through the doors here, they see what a great place it is. This is a way of getting them to take that first step."
