Man to Man prostate cancer support group members share their unabashed stories

mrice@ledger-enquirer.comDecember 29, 2013 

They rattle off their PSA numbers as easily as their phone numbers. They suggest treatments for each other as confidently as a doctor. And they mention urinary incontinence and erectile dysfunction as casually as a headache.

With cookies and Cokes in their hands, compassion in their hearts and cancer on their minds, this mix of blue-collar and white-collar men disclose personal details that some haven't shared even with their families.

They are the members of the Man to Man prostate cancer support group, which meets the third Tuesday of each month at 6 p.m. in the John B. Amos Cancer Center.

This fall, group members agreed to let the Ledger-Enquirer visit their sessions. In a few cases, last names aren't used in this story to protect privacy, but nearly all the members willingly allowed their names and photos to be published. They want to demystify prostate cancer. They want to show there's no reason to be ashamed of such potentially embarrassing discussions when the goal is surviving and thriving.

Fraternity

It's tough to motivate men to join support groups, said David Fletcher, the cancer center's outreach coordinator.

Fletcher told the Man to Man members at their September meeting, "What I like is when you bring another brother in, because you guys are like the best medicine we have. We have a saying in the business: Early detection is the best prevention. Unfortunately, men are not good at getting diagnosed early. A lot of times, we're like, 'Oh, just rub some dirt on it and it'll go away.' We don't run to the doctor all the time. Our wives are much better at keeping their appointments. We diagnose women much earlier than men, most of the time … So I want to thank you guys for doing what you do and what you've been doing for years. It's awesome."

The group has been meeting for at least 10 years at several places before finding its home in the cancer center, said Jack Osteen.

"We were just kids when we started," he said with a wink.

Osteen has the names of more than 50 men on his contact list to notify about the group's meetings. Around a dozen attended this session.

They gather to gain information and insight and help each other. Sometimes they have guest speakers on topics such as how to make sure their finances are in order.

Each meeting starts with newcomers introducing themselves and sharing their cancer journey, and the regulars give updates on their condition.

Sharing

Earl King was diagnosed in July 2010.

"When this thing jumped up at me, it just came out of the clear blue and I was totally lost," he said. "Somebody introduced me to the group, and I've been coming ever since."

Five months later, he had a radical prostatectomy. He hasn't needed radiation, nor chemotherapy, but he has his PSA checked every six months, "and it's been steady at zero. Of course, there's been the proverbial ED and leakage, but aside from that, life goes on."

Cells in the prostate gland produce PSA, protein specific antigen. A PSA test measures the amount in the blood. A PSA of 4 or lower usually is considered normal, according to the National Cancer Institute.

Lou, a U.S. Army veteran, said his father died from prostrate cancer. So when Lou's PSA shot up to over 30 last year, he underwent 40 radiation treatments.

"It wasn't that bad," Lou said. "It was worse after I finished. I had residual effects. I couldn't pee real well. I had no stamina, kind of lost my appetite, and I'm still experiencing some of that crap. How long is that going to go on? When do you get over this damn thing?"

Fletcher replied, "Everybody is so different. There's no cookie-cutter answer, that's for sure."

'Good God!'

Dr. Elton Gaddy was used to treating patients as an internist at the VA clinic in Columbus, but he became a patient himself in 2006, when he couldn't ignore his pain anymore and one of his colleagues checked his prostate.

"My PSA was 945," he said.

"Good God!" and "Ooooh!" were among the reactions in the room.

An X-ray showed his cancer had spread, so radiation and surgery weren't options, Gaddy said.

"I was on chemotherapy right out of the gate," he said. "It went kind of lumpy-bumpy. Like I said, it's a long story. But you see me now."

Oral cancer drugs also have helped.

"My PSA is 0-point-something now," Gaddy said, "and I'm seven years out."

Fletcher noted, "So there is no one way -- it's different for everybody -- but we do know that having a positive attitude can help you. No doubt about that."

Mile Holmes' prostate cancer was discovered during a routine check in 2000. He chose to have a radical prostatectomy. But four months later, his PSA shot up to more than 40, so he needed radiation and hormone shots.

"I still have some problems with incontinence and of course ED problems," he said. "But, hey, I learned to live with it. My PSA right now is less than 0.0, so I'm doing pretty good."

"You're doing real good," one of the participants insisted.

Holmes stopped his story to ask Gaddy, "Did your father have prostate cancer?"

"He sure did," Gaddy said. "My grandfather did, and I had an uncle who died of complications from prostate cancer within a year and a half of when I was diagnosed. So it's very strong in my family. My uncle was 49."

Fletcher hammered home a message he can't emphasize enough: "So we have a brother in the room who has a family history, and he's a doctor, but he didn't get checked out. By the time we found his cancer -- he found his cancer -- it was so advanced, he couldn't get treated the standard way. So how do you get regular guys to pay attention?"

"I was taking care of people so much," Gaddy said, shaking his head, "I didn't take care of myself."

Secrets

Herbert is dealing with family secrets. He still doesn't know why his father died in 2001, but his mother kept bugging him to get his prostate checked. He finally did last year. His PSA was alarmingly high, and pills didn't lower it. Then a biopsy showed cancer. After 48 treatments and hormone shots, however, he continues to hide his diagnosis from some family members.

"If I tell my brothers I have cancer," he said, "they'll tell my mother, and she's 97 years old and doesn't need to know."

Then it was time for the "baby" of the group to talk. Marcell Conley, 44, promised himself when his 5-year-old son was born that he would start getting an annual physical.

"Since I had insurance," he said, "I figured I might as well let somebody else pay for it."

Just before Thanksgiving last year, a nurse from his doctor's office called and asked him to return.

"They dropped a bomb on me," Conley said, "and I was like, 'You got to be joking.' But after being with you guys, that was like the best bomb anybody could ever drop on me.

"My PSA was only like 5 or 6, but I guess they figured as an African-American male I'm not supposed to wait until 50. I was supposed to do it at 40. So to all of my male friends around my age, I say, 'Hey, man, get ready. You need to do it, because it didn't affect me as hard as it affected other people, and I probably would have had to get my prostate removed had I waited.' So for me, having every option on the table made it a lot simpler and a lot easier than being told I had no choice."

Five months removed from his radiation, Conley has found this group sometimes gives him more facts and hope than he can find on the Internet.

"Without you guys, without this program, just the macho side, the male side of me, probably never ever would have known this is something I need to take care of," he said. "I'm just happy I have an opportunity to live longer and maybe help somebody else and say, 'Look, you may be scared of it, but it takes a real man to find out if you've got it.' It doesn't take anything to die for free, so I'm not dying for free, not if I can change it."

Early detection, postive attitude

Sonny Middlebrooks retired from the Gillette Corp. in 1991 at 50 and continued his annual checkups. That proved to be wise, because his doctor detected an abnormality in his prostate and monitored it closely enough to diagnose cancer at an early stage in the mid-1990s.

"It was one of those deals when they say 'cancer,' and it's like they're talking to somebody else," Middlebrooks said.

After 39 beams of radiation, he thought he was done with treatments. But about three years ago, his PSA crept up and accelerated to over 40. Injections of Lupron pushed the PSA back down.

"It's like 0.017 now," he said. "It's almost undetectable. … I'm just one of those real fortunate success stories."

"Plus, you caught it early," Fletcher stressed.

When it was Osteen's turn, he sparked a wave of laughs as he began with, "I flunked biology; I didn't know I had a prostate. I was 60 years old when I found out I had one, and it had cancer in it."

Then the group hushed as Osteen continued.

"They removed it five years later. It also was in the lymph nodes, so I had to go through six months of chemo and hormone treatment, had to have my testicles removed, because that fed the cancer supposedly back in that time. Now, they give you shots.

"I heard if you get past 10 years you have it made. Well, that's not true in my case. Last year, I was told it's back, and now I'm taking Zytiga, which costs $6,500 a month."

Osteen praised the John B. Amos Cancer Center for helping him find a way to pay for his medication.

"There was no way in God's green earth I could pay that much money," he said.

"We treat everybody," Fletcher explained. "We take all comers here. We have an obligation once you're diagnosed to figure out how to help you get treated, and those caregivers do some incredible work."

Middlebrooks added, "Jack shows the impact of never giving in. The power of positive thinking is never more powerfully demonstrated than in our club."

"It's a club you really don't want to join," Fletcher concluded, "but it's a good thing you can join."

LEARN MORE

For more information about the Man to Man prostate cancer support group or other support groups at the John B. Amos Cancer Center, call outreach coordinator David Fletcher at 706-571-1102.

WHAT IS PSA?

According to the National Cancer Institute's website, www.cancer.gov, Prostate-specific antigen, or PSA, is a protein produced by cells of the prostate gland. The PSA test measures the level of PSA in a man's blood. For this test, a blood sample is sent to a laboratory for analysis. The results are usually reported as nanograms of PSA per milliliter(ng/mL) of blood.

There is no specific normal or abnormal level of PSA in the blood. In the past, most doctors considered PSA levels of 4.0 ng/mL and lower as normal. Therefore, if a man had a PSA level above 4.0 ng/mL, doctors would often recommend a prostate biopsy to determine whether prostate cancer was present.

However, more recent studies have shown that some men with PSA levels below 4.0 ng/mL have prostate cancer and that many men with higher levels do not have prostate cancer. In addition, various factors can cause a man's PSA level to fluctuate. For example, a man's PSA level often rises if he has prostatitis or a urinary tract infection. Prostate biopsies and prostate surgery also increase PSA level. Conversely, some drugs lower a man's PSA level. PSA level may also vary somewhat across testing laboratories.

Another complicating factor is that studies to establish the normal range of PSA levels have been conducted primarily in populations of white men. Although expert opinions vary, there is no clear consensus regarding the optimal PSA threshold for recommending a prostate biopsy for men of any racial or ethnic group.

In general, however, the higher a man's PSA level, the more likely it is that he has prostate cancer. Moreover, continuous rise in a man's PSA level over time may also be a sign of prostate cancer.

DIAGNOSING PROSTATE CANCER

According to the American Cancer Society's website, www.cancer.org, prostate cancer is the most common cancer among men (after skin cancer), but it can often be treated successfully. More than 2 million men in the U.S. count themselves as prostate cancer survivors.

Sometimes prostate cancer is found because a man goes to his doctor with symptoms. Often, though, it is found by testing men with no signs or symptoms of prostate cancer. This is called screening. The test used most often for screening is the PSA (prostate-specific antigen) blood test. Another test that can help find prostate cancer early is when a doctor checks the prostate with his or her finger (a digital rectal exam or DRE). If prostate cancer is found as a result of either one of these tests, it has probably been found at an early, more treatable stage.

The American Cancer Society recommends that men have a chance to make an informed decision with their health care provider about whether to be screened for prostate cancer. They should first get information about what is known and what is not known about the risks and possible benefits of prostate cancer screening. Men should not be screened unless they have received this information.

The discussion about screening should take place at age 50 for men who are at average risk of prostate cancer and are expected to live at least 10 more years.

This discussion should take place starting at age 45 for men at high risk of developing prostate cancer. This includes African Americans and men who have a first-degree relative (father, brother, or son) diagnosed with prostate cancer at an early age (younger than age 65).

This discussion should take place at age 40 for men at even higher risk (those with more than one first-degree relative who had prostate cancer at an early age).

PROSTATE CANCER SYMPTOMS

According to the American Cancer Society's website, www.cancer.org, early prostate cancer usually causes no symptoms. Advanced prostate cancers can cause some symptoms, such as:

• Problems passing urine, including a slow or weak urinary stream or the need to urinate more often, especially at night.

• Blood in the urine (hematuria)

• Trouble getting an erection (impotence)

• Pain in the hips, back (spine), chest (ribs), or other areas from cancer spread to bones

• Weakness or numbness in the legs or feet, or even loss of bladder or bowel control from cancer pressing on the spinal cord.

Other diseases can also cause many of these same symptoms. For example, trouble passing urine is much more often caused by benign prostatic hyperplasia (BPH) than cancer. Still, it is important to tell your doctor if you have any of these problems so that the cause can be found and treated, if needed.

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