Robert Ginyard travels around the country to share his story about surviving prostate cancer, advocate for research funding, and educate men and their families about the disease. He has testified before Congress, appeared on national radio shows, and spoken at hospitals, cancer centers, health fairs, and African-American churches.
“Prostate cancer affects the whole family, not just the man,” says Ginyard. He says the men in his audiences want to enjoy life, and not focus on death. He talks to them about his desire to spend more time with his wife and see his young daughters grow up. He discusses the ways communication and intimacy have changed for him and his wife since his prostate cancer treatment.
“Once I open the floor and I talk about my situation,” says Ginyard, “I can see on their faces what they’re thinking: ‘He’s telling my story – this guy gets it; he’s telling my story.’”
Intimacy on a deeper level
Ginyard has long known he had a higher-than-average risk of getting prostate cancer someday. That’s because his father had prostate cancer, and because he’s African-American. For reasons not entirely understood, black men in the US have higher rates of prostate cancer cases and deaths than non-black men. Ginyard discussed these risk factors with his doctor, who recommended regular PSA screening starting when Ginyard was in his early 40s.
“It’s really important for men to have a physician they feel comfortable with, so they can talk freely about health issues and maintaining a healthy lifestyle,” said Ginyard.
In 2010, when Ginyard was age 48, his PSA test showed a spike. The doctor referred him to a urologist, who performed more tests, including a biopsy. He told Ginyard he had prostate cancer, but that it had been caught early, which meant Ginyard had more treatment options, and time to think about them. Ginyard began asking questions and doing research, and got a second opinion from another urologist.
He decided to have a radical prostatectomy, which is a type of surgery that removes the entire prostate gland plus some of the tissue around it. He also had radiation and hormone therapy. In all, his treatment lasted around 4 months. He was troubled by hot flashes, a common side effect from hormone therapy. Other common side effects from treatment can include incontinence and impotence.
“Many men have hang ups about communicating with their wives about intimacy during or after treatment,” said Ginyard. “We were so used to making love to our wives in a certain way, but afterward we have to love in a different way – with the mind and soul. A lot of men don’t think they can perform the same way as before prostate cancer. I learned to love my wife in a different way. Our intimacy is now on a deeper level. We hold hands, we take walks, we watch movies. And while we did these things prior to me having prostate cancer, these special moments are more meaningful than ever.”
‘It’s larger than your prostate’
Ginyard first shared his story at a local prostate cancer awareness event in his hometown, Baltimore. The more he spoke, the more men wanted to hear what he had to say. He then reached out to the manager of Baltimore’s Hope Lodge facility, which offers free, home-like accommodations for cancer patients and their caregivers whose best treatment options are away from home. He began speaking regularly to a prostate cancer support group that met there.
In 2012, Ginyard joined the board of directors of a nonprofit organization that raises awareness and educates men and their families about prostate cancer. Ginyard stresses the importance of knowing your family history of prostate cancer and having a good relationship with your doctor so that you can discuss the benefits and risks of screening. “You can’t treat this in a vacuum. It involves the entire family. It’s hard to ask someone to visit a doctor or get screened if there’s no hope in their lives. So I stress hope and the importance of family. You want to live long for your wife and see your kids graduate from college. It’s larger than your prostate; it’s your life.”
‘Dream it, believe it, do it, be it.’
Ginyard calls his speaking activities his life mission. “When I was on the radiation table getting my first treatment, I made a promise to God that my life is going to change. I’m going to go after some dreams I never fulfilled,” he said.
But the months came and went, while Ginyard finished treatment and began putting his life back together. “I was so happy to be finished, I didn’t follow up,” he said.
“One night, a year later, I couldn’t sleep. I tossed and turned. I had guilt come upon me because I had made a promise, and then I didn’t do it. I got up and wrote on a notepad: ‘DIBI DIBI.’” It stood for, ‘Dream it, believe it, do it, be it.’ That’s my life’s mission. I’m out talking to folks. I want to help people be healthy and live out their dreams and live out their family’s dreams.”