Issue No. 2013
Date: January 3, 2013
Today, when Damon Harris looks at old 1970s photographs of himself performing as a member of the vocal group the Temptations, he does not simply reminisce about his twenties and the heyday of his career. Instead he reflects at what the camera lens does not reveal. Beyond the spotlight and celebrity, he marks the beginning of his battle with prostate cancer.
Damon was diagnosed with advanced prostate cancer in 1998 at just 47 years old, but he has since learned from his doctors that this slow growing cancer had probably started forming 20 years earlier. At the time the photos were taken, there were no symptoms to alert him to the invisible genetic miscues occurring within his body and giving rise to the cancer cells. He was unaware that as an African- American man with a family history of prostate cancer, he was at increased risk for the disease and at risk for developing it at a younger age. His father died when Damon was just 25. However, Damon did not realize until he read the death certificate that his father died from prostate cancer. “I saw my Dad die. I saw him suffer, but he never talked about it,” says Damon. It was indicative of the time. “Black men didn’t talk about prostate cancer,” he says.
Flash forward 15 years, and perhaps things are not that different. Damon recalls living with symptoms for five years before going to the doctor. Like his father before him, he suffered in silence. He convinced himself that the pain he was experiencing was just a normal part of middle age. “I was stretching and putting cold compresses on my pelvis trying to relieve the pain.”
He was living in Philadelphia at the time. He had spent the last decade touring internationally as a solo artist and had decided to relocate to Nevada to work with a singing group who was performing at a hotel in Reno. He enrolled at the Reno campus of the University of Nevada to continue his studies in music education.
A few years later, the pain returned, and now it was intolerable. Dr. Carol Scott at the University’s Health Center convinced him that he needed a PSA test and prostate exam. The results were unmistakable. Damon did not just have prostate cancer; he had bad prostate cancer. His biopsy and other tests revealed that the cancer had already spread.
As a young man, he had dreamed of living in Reno. His plans did not include a diagnosis of prostate cancer. Within days of his diagnosis, he went to the Reno chapter of the American Caner Society (ACS) for what he calls his “crash course in Cancer 101.” The local ACS director asked Damon to be a coordinator and facilitator for its Man-to-Man program, an education and support program for men with prostate cancer. He spoke to many groups. The black population in Reno was very small, so he was the only black man in the room. “It was an eye-opening experience for them and for me,” recalls Damon. “It was an unusual encounter for us all, but despite the obvious differences, we were brothers. The disease brought us together.”
The ACS sent Damon around the country to attend national conferences and other prostate cancer events. His “crash course” also led him to another prostate cancer group. An internet search turned up a patient-led advocacy group called the National Prostate Cancer Coalition (NPCC). The urologist Damon saw in Nevada did not offer much hope, but a contact he made while attending the group’s annual meeting in Washington, D.C., did. Damon became friends with Judge Ralph Burnett, himself a newly diagnosed prostate cancer patient and the organization’s chairman at the time. The judge was a champion of increased research funding and education for men diagnosed with the disease. “He was genuinely concerned for me and told me I needed to see his doctor, Dr. Bill Nelson at Johns Hopkins,” says Damon
Damon followed Judge Burnett’s advice and made an appointment to see Dr. Nelson. Damon’s prostate cancer was too advanced to be cured with surgery, but hormone drug therapy could—and did—keep it in check. The treatments have not been without their side effects, but he has been well enough to continue performing. A highlight for him was performances last year at the Kimmel Cancer Center’s Cancer Survivor’s Day celebration and Art of Healing Program. He sang “We Shall Overcome,” and was joined by patients in a moving and spontaneous display of courage and solidarity that while emotional for all who witnessed it was probably only fully appreciated by those fighting cancer. “I was moved to ask patients to come stand with me because I could identify with what they were going through,” says Damon. “Though we all have different experiences in fighting our cancer, we are also joined together by a similar experience. I was the one on the stage singing, but my voice was speaking for all of us.”
For the first time, Damon has written, arranged, and produced his own music. He recorded “You are My Woman” last spring at Johns Hopkins Peabody Institute accompanied by Peabody musicians. “People I have met through this battle and all that I have gone through with treatment, thinking I would never sing again, inspired me to record this song,” says Damon. “Those experiences gave me hope and purpose and a belief that my life was not over.”
Damon says he also has drawn inspiration from his old friend Judge Burnett, who passed away in 2007, but not before leaving a lasting mark. Under his leadership, first as chairman and later as a board member, the National Prostate Cancer Coalition tripled its membership and federal funding for prostate cancer research doubled. He was a staunch and vocal supporter of Johns Hopkins, leveraging support from the Department of Defense for the Johns Hopkins prostate cancer program and advocating for the Kimmel Cancer Center’s National Cancer Institute SPORE (Specialized Programs of Research Excellence) grant for prostate cancer. Judge Burnett participated in studies that helped Johns Hopkins scientists begin to unravel the complex genetic changes associated with prostate cancer.
Judge Burnett asked Damon to help the group reach out to black men who, as Damon now understood all too well, were more likely to develop prostate cancer at a younger age but less likely to get screened. “Judge Burnett thought black men might feel more comfortable hearing from and talking to another black man,” says Damon. A deeply spiritual man, Damon began to find a Godly purpose in his diagnosis. “Maybe I was being called to do this. If I could use my experience with the Tempts and Motown as a platform to promote awareness, then I feel like something good came from my struggle,” he says.
Some black men have not been receptive, he admits, but he refuses to give up. “My experience is not everyone’s experience. Some people are intimidated. Some just get tired of fighting the obstacles. I want to educate and arm all men, so they will at least have the information they need to make decisions,” says Damon. “I especially want young African-American men and the nation to understand that this is not just an ‘old man’s disease.’ I’m living proof of that,” he says. Damon admits that even if he knew there was a prostate cancer screening test or exam when he began experiencing symptoms, he still would not have gone to the doctor. “Sadly, the thought of having a DRE [digital rectal exam] is scarier for many men than dying,” he says. “I’ve heard men say, ‘I’ll die before I do that,’ and I want to do anything I can to make sure that doesn’t happen.”
To help get his message out and provide support to African-American men, Damon has formed the Damon Harris Cancer Foundation and is developing an associated website that links African-American men to African-American urologists. It was an idea that came to him while attending a conference through the American Cancer Society. A chance meeting with acclaimed black urologist Janice Arnold made him think, “Maybe some black men would be more willing to get screening examinations if they could go to an African-American doctor. The history of black people in America is such that some black men are understandably reluctant to listen to white doctors. The trust is missing,” he says. “But, we can’t quit trying to get the message out.” His goal is to make sure every man has an option that works for him. If going to a black doctor is more comfortable, he wants them to know where to find one. “Information is key,” says Damon. “People need to make their own decisions. The decision I made may not be the right one for someone else, but I try to help make sure people at least have the facts, like ACS and the NPCC did for me.”
First and foremost, he hopes that sharing his story and providing connections to doctors will encourage men to discuss prostate cancer with a doctor before they have symptoms. “Race is a sensitive issue. The media are afraid to talk about the problems of prostate cancer in African-American men. There is a hesitance to emphasize race, but we can’t be afraid to say that in America prostate cancer is different in African-American men,” says Damon. “It’s a fact, and if we are reluctant to talk about it, we are never going to get this problem under control.” While he hopes for a greater impact, Damon says if his work gets just one man to talk to his doctor about prostate cancer, he feels he’s made a difference.
Sharing his journey and his experience at Johns Hopkins is one way he hopes to accomplish that goal. “Johns Hopkins is the greatest hospital in the world,” says Damon. “I’m not a wealthy man as many would expect or imagine, so it’s not my celebrity that has earned me the best treatment. In my experience, it’s representative of what Johns Hopkins delivers to each and every patient,” says Damon.
Dr. Nelson points out that Damon Harris is a perfect example of someone who may have benefitted from screening. With so much attention focused on overscreening men, Dr. Nelson wants men to understand that screening is not bad; screening the wrong people is bad. He says, “What we need to do is target prostate cancer screening to the right men, those who will benefit, and away from those who will not.”
Even though Damon missed the opportunity for early detection and a cure, he still considers himself a prostate cancer success story. At 62, he has lived with advanced prostate cancer for 14 years. He attributes his survival to a combination of “his doctors’ work and God’s grace.” He says, “The Kimmel Cancer is a second home to me. I feel certain that if I had not come to Johns Hopkins, I would not be alive now.”
Recently, the cancer has started to grow again, and he is beginning radiation treatment to knock down some painful tumors pressing on the nerves in his hips and spine. He also is eager to begin treatment with a new FDA-approved drug called MDV-3100. He continues to be impressed with the combination of approaches his doctors have used to keep his cancer under control. When drug treatments have failed, he says, radiation therapy has stabilized the cancer.
Despite it all, Damon feels blessed. He does not ask why or wonder what if. “I was given the gift of voice, and I am being allowed to use that voice and to be heard through my music and my experience with cancer to help other people,” says Damon. “To have cancer is not to die,” he says. “To have cancer is to learn how to live.”