Cancer survivor returns from nationwide awareness tripby Carley Dryden (Updated: Thursday, September 23, 2010 1:23 PM PDT) |
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It’s one thing men just don’t want to talk about.When Robert Hess brings up testing for prostate cancer, most of his friends squirm.“Guys just don’t want to do it … but once they’re diagnosed, they can’t stop blabbing about it,” he said.
Hess just spent 48 days on a motorcycle covering 8,572.9 miles, visiting 24 states, all in hopes of spreading awareness about prostate cancer and urging men to get tested early.
Hess, a Manhattan Beach resident, calls himself “an accidental prostate cancer survivor.” Hess had multiple tumors sitting on the top one-third of his prostate, an area physically impossible to feel. At the time he was diagnosed, in 2002 at age 58, Hess’ prostate specific antigen (PSA) test had been “normal” by most doctors’ standards. “Had I not been diagnosed, I would be dead,” he said. Soon after his own battle with the cancer and surgery in 2003, Hess started Prostate Cancer Awareness Project to prevent other men from entering their own. What began as a few bicycle events across the country grew into Hess’ idea for a Tour de USA, similar to a Tour de France. A knee injury and subsequent surgery left Hess unable to pedal his bike cross-country, but he could still power up his Harley Davidson. Hess took off on July 30 for the first-ever round-trip trans-American charity motorcycle rally, with a large sign on the back of his bike detailing his awareness mission. Friends and family followed Hess on his journey on their computers; Hess had a device on his bike that updated everyone following from their computers on exactly where he was. “At one point I could see that he was in a ditch,” said his friend, Michael Allmon, who monitored Hess on his computer as Hess biked through Nevada, Utah, Wyoming and on to Washington, D.C. “The next day he let me know that he had to pull off the road to avoid lightning and had to hide in a ditch … His trip was, in all aspects, a once in a lifetime event.” Along the way, Hess contacted local media outlets, visited governor’s offices and spoke with men and women of all ages about the importance of testing for prostate cancer. “There is a lot of focus on raising money for the cure, but not very much focus on getting guys just thinking about it,” Hess said. “Our mission is to make sure no guy ever gets caught with a surprise metastatic prostate cancer diagnosis.” Hess took the results of the Prostate Cancer Report Card from the National Prostate Cancer Coalition to each state he visited and presented it to the governors’ offices. The report card grades each state on their death rates, screening rates and mandates, and federal delegation. California scored an ‘F’ in screening rates and a ‘D-’ in federal delegation in 2008. During his tour, Hess convinced Virginia and South Carolina to officially make September Prostate Cancer Awareness month. Other states gave him commendations. Most at the very least gave him their time and attention. Hess said tracking annual prostate cancer test data is critical in saving lives, so he created the PSA Tracker, a matrix that helps men easily track their blood test results each year to see if they are trending upward, a call for a doctor’s visit. “Prostate cancer is on guys’ minds, but they don’t know what to do next,” Hess said, noting there is a plethora of information on treatment options, but not on testing. “We’re not trying to cure it, our goal is to just tell guys, ‘Take the simple test.’…It’s treatable if you catch it early.” On the blog Hess created to journal his tour, many men have written their own survivor stories. Some have a wife and children and have lost their prostate, along with their sexual function. Others are fellow motorcyclists who are functioning normally with treatment. But most, like Hess, stress the importance of testing early. Hess suggests starting at age 35. “People always ask for words of wisdom. Just test,” Hess said. |
A baseline PSA is essential and then its behaviour can be tracked. If it behaves badly and rises then something needs to be done.
Our online survey at http://www.prostaid.org will provide some good ideas from the PCa survivors and their partners.
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