When R.A. Saenz of Little Rock was diagnosed with prostate cancer in 2001 at age 54, he embarked on a journey that would take him through what he called “the worst four years of my life.”

 

Today, he’s a survivor mentor volunteering with the Arkansas Prostate Cancer Foundation to help others overcome the disease.

 

Arkansas is the only state with a full-time, independent nonprofit organization concerned with prostate cancer. This September, the foundation is marking its 10th anniversary by packing a lot into what Governor Mike Beebe has declared Prostate Cancer Awareness Month. Free screenings are planned throughout the month, and the foundation’s signature fundraiser, Boys & Their Toys, a dinner and auction normally held in the spring, was moved to September 10 to coincide with the month’s activities.

 

For men who have just learned that they suffer from the disease, the foundation picks up where the medical system leaves off. According to Executive Director Helen Baldwin, MBA, RN, men who contact the foundation are plugged into a patient navigation program that helps them understand how to beat or manage their disease and where to go next. Men are reminded that even aggressive prostate cancers grow slowly enough that they have time to make an informed decision and are given carefully screened literature that the foundation has deemed relevant and useful. Otherwise, Baldwin said, “Many men leave their physician’s office in a panic, in a fog. They may go out to the Internet and become completely overwhelmed and confused.”

 

The foundation provides other services. It organizes monthly peer network meetings once a month in Little Rock, Jonesboro and Springdale where patients and survivors can discuss their experiences. Survivor mentors are always available on call for those who need counseling. The foundation helps men arrange their finances – and yes, that includes a will – and sometimes gives financial assistance as men work to beat the disease. Sample pads for incontinence save men an embarrassing early trip to the grocery store. Patients are encouraged to seek additional medical opinions, although Baldwin stressed that the foundation does not give medical advice.

 

“One of our mottos, and we have several, is that those who know the most do the best,” she said. “We’re not here to interfere with the doctor-patient relationship but to enhance it because we know that if a man is prepared, if he understands, he’s going to do a lot better long-term.”

 

The foundation is assisted by a medical advisory committee made up of urologists, radiation oncologists, and other specialists – three of whom are prostate cancer survivors.

 

The foundation provides a valuable service for men facing an ordeal they often do not understand, but it largely depends on word of mouth. Because of HIPPA laws, medical providers can’t alert Baldwin when a diagnosis occurs, but they can encourage patients to call the foundation. “Hopefully, their urologist would recommend that they contact us, but that doesn’t often happen – in fact, seldom happens,” Baldwin said.

 

The foundation’s phone number is 800.338.1383, and its website address is www.arprostatecancer.org.

 

After his diagnosis, Saenz (pronounced “sinze”) underwent surgery and then volunteered to become a participant in a clinical trial involving androgen deprivation therapy, a process that virtually rid his body of the testosterone on which prostate cancer cells feed. It was not a pleasant experience.

 

“I became extremely emotional,” he said. “I had no emotional strength at all. Under a tense situation I would cry for no reason. I lost muscle tone. My libido was completely gone. It just didn’t exist. I had significant erectile dysfunction. My skin became less oily. I just became softer. I got to the point where I probably had – I’m sure I did – had less testosterone than the average woman.”

 

Such experiences point to part of the reason that prostate cancer remains a low-profile disease. More male Arkansans die of prostate cancer than female Arkansans die of breast cancer, and yet prostate cancer attracts far less attention and has no equivalent to the Susan G. Komen Race for the Cure. According to Saenz, men simply aren’t as open at communicating about their health issues as women are about theirs. Moreover, while no cancer is pleasant, just about everything associated with prostate cancer – including digital rectal exams, erectile dysfunction, loss of libido, and incontinence – are taboo subjects that don’t encourage men to seek preventive care. “I’ve had guys say to me, ‘If I can’t have sex again, I don’t want to live,’” Saenz said.

 

But Raul Blasini of Pocahontas, who was diagnosed with the disease in 1997 and then underwent a successful operation, says progress is being made and points out that it wasn’t that long ago that breast cancer also was stigmatized.

 

“Twenty years ago, you can talk with a lady and you can mention ‘breast’ in front of the lady (and the response would be), ‘Wow, don’t talk to me about breast cancer!’ But that happened to us before we started with this program, and now we’ve just started to open doors,” he said.

 

He hopes that prostate cancer can reach the same degree of public consciousness as breast cancer in 10 years.

 

The peer network is a relatively new offering, and Saenz had been a seven year survivor when he started attending. He found that what he calls the “brother-in-arms type of bonding” helped him cope with the disease’s lingering effects, a challenge all survivors face. Prostate cancer, he said, “is not an event. It’s a process, and you don’t just go to the hospital, get it fixed, go home, in a couple of weeks you’re OK. You’re likely going to have to deal with some effects of that at some level probably the rest of your life.”