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ST. LOUIS - Don Holt had doubts about the cancer surgery he had to face right up to the last minute.
He called friends and family to hear something, but he wasn't sure what he wanted to hear. A talk with his daughter filled in the blank.
"She said I had two choices," Holt, 64, recalled. "Did I want to see my grandbabies grow up, or not. I said, `Oh. I do want to see them grow up.' "
The next day, he was in surgery, the one surgery that men seem to dread more than any other.
His prostate gland had turned on him. Its primary purpose is to provide nourishment and fluid for sperm during reproductive acts. Instead, his had started causing him nagging physical problems and turned into a cancer that could cost him his life.
The saga began five years ago.
During a casual conversation with a friend in Kansas City, Mo., Holt found that the friend had experienced the same symptoms Holt had been having. The friend told him it was cancer, and he had beaten it.
"He was very open with me and shared the process with me. And he said, `Look Don, you need to get to the doctor.' Subsequently I went and had a PSA test."
The PSA is a blood test that looks for a chemical that tends to increase in the blood when someone has prostate cancer.
The high reading led to another test, the digital rectal exam. Many men feel this exam threatens their manhood, Holt said. "I had a preacher tell me once from the pulpit, he'd never have a rectal exam."
"I'm into computers, so when he said digital, I though there was some sort of mechanism he'd use," Holt laughed. "But when he said bend over . . ."
The digital rectal exam is where the doctor manually checks the prostate-which sits between the bladder and the rectum-for growths. If it's soft and mushy, it's fine. If the doctor finds a hard nodule-it feels somewhat like a knuckle-that means trouble. After that, the doctor orders a biopsy, which involves a needle inserted into the growth to test for cancer.
Doctors like to move fast. Prostate cancer is curable when the prostate gland is removed. If the cancer escapes the prostate, the result can be death.
The news of the nodule left him confused. He began checking the Internet for more information.
"I found that African-American males lead the world in prostate problems and die from it more than anyone else on the face of this earth," said Holt, who is black.
Holt was driven more by fear than he likes to admit. At his age, he's lived in a time where the term "cancer" meant a death sentence. Add prostate as an adjective, and the information about threats to bodily functions and the possibility of spending the rest of his life as an invalid, and especially, the loss of manhood, and the picture was terrifying.
Holt took control, albeit, privately. He first tried a year of herbal remedies, changing his diet and eventually visiting a doctor who practiced holistic medicine. But even that doctor said his cancer appeared to be too far along. He'd need a biopsy and surgery.
"I was thinking, this can't be me, there's got to be another way. I started trying all kinds of different things," he said. "I started watching my diet . . . But I was still having the same kinds of problems."
The biopsy had the last word. His prostate would have to be removed or he'd die.
To his surprise, as he accepted what he'd have to do to live, he began to find the support by opening up and talking about it.
"Even up until the night before I'm supposed to have the operation, I'm still thinking maybe there's another way," Holt said. "I called a buddy the night before and asked, Are you sure I'm doing the right thing?' He said,Yeah, Don. You're doing the right thing.'
More talking to more friends and prostate survivors helped him ease his fears.
His friend in Kansas City volunteered to sit with him before and after the surgery.
Then he had his talk with his daughter.
"I needed all those folks to help me to move forward," he said. Now he works with the Health Communication Research Laboratory at St. Louis University School of Public Health to help get the word out.
"I think it's so important to help African-American males, and all males to understand," Holt said. "That prostate thing will take you away from here."
Since the surgery, he's living a normal life, cancer free and the aftereffects aren't anywhere near what he feared.
He said he hasn't had a problem with sex, incontinence or anything else since healing from the surgery.
He admits those things were an issue early on, but not anymore. His general energy is fine for a 64-year-old man.
"And thank goodness for Viagra," Holt laughed. "Sometimes I need it, and sometimes I don't."
THE DISEASE
Doctors who deal with prostate cancer say they want to see more men handle their disease with Holt's assertiveness.
But that's the headache: Men generally go into denial about prostate cancer because of the stigma that surrounds it.
About a half-million men a year get prostate cancer, second in incidence only to skin cancer. Of those, about 30,000 will die, second in deaths only to lung cancer.
The death rate is troublesome to the medical community because prostate cancer is among the most curable cancers when it's found early. And considering that if a man makes it to manhood, he has an 80 percent chance of developing some degree of prostate cancer-from very small to deadly-early detection is the key.
Studies have revealed that prostate cancer is very prevalent. Eight of 10 men will have prostate cancer if they live past 80. About 30 percent of men over 50 have it and it's been detected in the bodies of men as young as 20, he said.
But the prostate cancer that grows enough to become lethal is only picked up in 3 to 5 percent of men who are screened, said Dr. Arnold Bullock, a urologist and surgeon in the Siteman Cancer Center at Barnes-Jewish Hospital in St. Louis. That's why doctors insist on screening.
"Roughly 90 percent of the men who are diagnosed with cancer will have significant cancer," Bullock said.
He warns men about what he considers another falsehood. "So this idea is that men who are diagnosed with prostate cancer could do fine just by watching it, that's a false belief that . . . absolutely has to be dispelled."
That means starting at 40, and definitely at 50 men should get annual checkups that include the PSA test and rectal exam, and maybe more frequently if the physician finds an enlarged prostate or the person is a member of a high risk group.
The high risks include men with a family history of prostate cancer, especially among the direct lineage and siblings. Another is being born a black male. The rate of cancer deaths is more than double the rate of white deaths.
So why does it kill?
Men often don't seek exams or treatment until they start having symptoms of pain, urinating blood or not urinating at all.
But that may be too late to check, doctors say. Screening is advanced enough to catch it before it gets to that point, said Dr. James Cummings, chief of the division of urology at St. Louis University School of Medicine.
"We really haven't had any great leaps ahead in the types of treatment we do," Cummings said. "So the only thing that has changed is that we've been able to detect the cancers earlier."
BLACK MEN
At the top of the statistics, is the disparity that exists for black men.
The American Cancer Society's most recent statistics show black men get prostate cancer at a rate of 266.8 per 100,000 while whites get it at 163.2 per 100,000. Worse, though, black men die at a rate of 72.8 per 100,000 while whites die at a rate of 31.2 per 100,000.
Ricardo Wray, an assistant professor in the Health Communication Research Laboratory at the St. Louis University School of Public Health, has been studying why black men are at a higher risk of prostate cancer.
One of the major reasons is information, Wray said. Too many blacks see prostate cancer as either a death sentence or nothing to worry about.
Bullock, of the Siteman Center, said that because of the falsehoods about prostate cancer, "Blacks delay treatment an average of four months longer than whites. So we see that blacks die at a higher rate-delay in diagnosis and a higher likelihood to chose less effective therapeutic treatments."
Wray said the study learned that what's important is getting the word out to destigmatize prostate cancer.
His project is working with churches and other organizations to tell the truth about prostate cancer in the black community.
The best template for taking the onus off prostate cancer has been to look at how women took the onus off breast cancer. Once feared and spoken of in shadows, breast cancer is now spoken about openly and the Susan G. Komen Foundation has annual events that attract tens of thousands of people.
His department has worked with organizations that are pushing for prostate screening.
Last year, the 100 Black Men organization, coupled with several sponsors, had a walk to fight prostate cancer and men stood in line up to 30 minutes to get PSA test. A similar activity happened at the Missouri Black Expo.
A spokesperson for 100 Black Men said that a third of the people who got tests learned they had high PSAs.
"That's why (it's important) getting people to talk about it, to remove the taboo around it, so you can have organizations and institutions making an effort, the media making an effort, people talking about it so it's more common currency, not something that's hushed up," Wray said.
"If you don't do it for yourself, do it for your family," said Benjamin Edwards, former president of 100 Black Men, a service organization that has adopted prostate cancer as one of its causes.
Edwards learned two years ago he had prostate cancer. "I was enjoying life, my wife, my grandkids, doing a lot with the 100 Black Men (organization)."
But in the fall of 2003, he was visiting his doctor for a spring checkup. "Something just said ask the doctor to check," Edwards said. "The results came back, and they found cancer. Lucky it was in its earliest stages."
Now, since the surgery, "Everything is pretty much back to normal. I've been enjoying life; in fact I've been enjoying it more now because of what I went through.
"I learned to appreciate life. I know that if I didn't do it when I did it, I probably would be a statistic by now. I've been feeling fine."
"It's something that you have to do and you need to get it taken care of," he said. "The most important thing is to take care of No. 1. If you don't catch it early, then if they find it too late, you might not be able to get yourself taken care of.
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(c) 2005, St. Louis Post-Dispatch. Distributed by Knight Ridder/Tribune News Service.
