Johnny Payne is a seasoned prostate cancer advocate and educator.
Diagnosed in 2001 in his mid-50s, Johnny was not being screened for prostate cancer regularly. At the time, his company held a health fair with free PSA screenings, and so he got tested. He thought nothing more about it until a month later, when they called him to give him the results – until then, he hadn’t even known what a PSA was.
His high PSA led him to two doctor appointments and then to see a urologist. Through this process Johnny did his own research, talking to five different doctors. Finally, he was diagnosed with prostate cancer and had a radical prostatectomy. His pathology report discovered that he actually had two tumors in his prostate – though the biopsy only detected one. His doctor then encouraged him to purse a course of external beam radiation and though he initially resisted, a rising PSA pushed Johnny to get the treatment. Now, he gets a PSA test each year and has been cancer free for fifteen years.
I’d encourage men to get a second opinion and do their own research. It occurred to me: there are probably a lot of other men like I was, who did not know enough about prostate cancer. I wanted to change that. Don’t panic. Do your research. Seek out support – whether that might be with a support group or with your family or friend – continue to do your research, as the disease doesn’t affect all men the same way.
After his treatment, Johnny got involved in prostate cancer advocacy and education, specifically in the African American community. He became a ZERO advocate and joined Us TOO, becoming the leader of a local support group. The more he learned, the more he wanted to share with other men. Each month, he brings a different speaker into his support group to further expand the prostate cancer education among his peers.
Educating men about prostate cancer screening allows me to give men all the information they need to make an informed decision with their doctor.
Johnny brings his voice and experience to the ZERO Summit each year to advocate for increased prostate cancer research funding on Capitol Hill, which has led to three new treatments for advanced disease in the last several years.
What ZERO is doing to fight for prostate cancer research is very important.
He is also a Board Member of the National Alliance of State Prostate Cancer Coalitions, and began a small nonprofit – the Upstate Prostate Cancer Alliance – where he educates men and communities about prostate cancer. He also often partners with local hospitals to offer free screenings.
Also a member of the South Carolina Cancer Alliance, Johnny co-chairs a prostate cancer “work group,” which in 2016 surveyed primary care providers to find out how they discuss prostate cancer with their African American patients. His work to educate and inform men locally has had a profound impact on awareness in his community.
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