Prostate cancer survivors come together for camaraderie, collaboration

'Optimism has to be part of the cure:' Gen. Colin Powell keynotes annual survivors celebration breakfast
Image: Gen. Colin Powell
Keynote speaker Gen. Colin Powell kicked off the survivor stories by talking about his proactive approach to health and how it led to an early prostate cancer diagnosis. David Wentworth

When Chris Lloyd was diagnosed with prostate cancer seven years ago, he suddenly realized that all around him were men who were survivors – and were stepping up to be there for him.

“One of the things that happens when a doctor tells you you have cancer is you suddenly realize there’s a fraternity of people who share this experience,” said Lloyd, a 54-year-old Seattle advertising executive.

“When I released the information that I’d been diagnosed, I was really surprised how my phone and email lit up with all these guys who said, ‘Hey, I just heard and, guess what, 10 years ago I went through it, too.’”

Bill Bedford, 68, of Kirkland, Wash., went through it 21 years ago and also acknowledges the instantaneous friendships that grow between fellow survivors.

“Cancer patients have a bond,” he said. “You talk about the fear, the anxiety while you’re waiting for test results, the importance of having a positive attitude and of staying active and exercising.”

That camaraderie was one of the driving forces behind the Prostate Cancer Survivors Celebration Breakfast, held December 5 at the downtown Seattle Sheraton.

Nearly 1,000 people attended the event, which drew survivors like Lloyd and Bedford, local luminaries like glass artist Dale Chihuly and the Hon. Daniel J. Evans and medical movers and shakers from the Fred Hutchinson Cancer Research Center, Seattle Cancer Care Alliance, and University of Washington.

The fourth annual fundraiser, sponsored by the Institute for Prostate Cancer Research (IPCR), included both live and taped speeches from cancer survivors and their families as well as insights from some of the 40 scientists and physicians involved with the IPCR.

One in six men diagnosed
Keynote speaker Gen. Colin Powell kicked off the survivor stories by talking about his proactive approach to health and how it led to an early prostate cancer diagnosis.

“When I started to reach the age when you worry about such things, I religiously went to my annual physical for screenings and anything else they wanted to do,” he said. “I knew as an African American I had a higher likelihood of getting prostate cancer than my white brothers.”

Prostate cancer is currently the most common form of cancer among men, with one in six diagnosed at some point in their lifetime. And as Powell indicated, African American men are particularly vulnerable. They’re also twice as likely to die from the disease as Caucasians. All told, 200,000 American men are diagnosed with prostate cancer each year; 27,000 die from it.

Powell said erratic PSA numbers led his urologist to perform three biopsies over a period of several years. Two came back negative but the third, performed in 2003, tested positive for cancer. After discussing treatment options, Powell opted for surgery. He also opted to keep his cancer under wraps until the day of his procedure.

“That morning, I told my assistants, ‘I’m going to the hospital to have surgery for prostate cancer. Take care of the place. I’ll be back later this afternoon,’” he said, prompting a laugh from the many survivors in the room.

Along with sharing his own cancer story, Powell emphasized the importance of hope and optimism for survivors.

“In recovering from an illness or dealing with prostate cancer or other cancers, optimism has to be part of the cure,” he told the audience. “You have to believe you’re going to be cured. You have to believe that those in the medical world who are taking care of you and taking care of this problem will find a solution.”

Personalized medicine moves forward
Fred Hutch’s Dr. Peter Nelson, one of the researchers working on finding solutions, said the breakfast was the “best one yet,” especially since it was the kickoff for the Act Smart Initiative (PDF).

Created by IPCR, a joint venture of UW Medicine and the Hutch, Act Smart was specifically designed to help move personalized medicine forward in the Pacific Northwest.

“It’s a mechanism to allow us to really work together toward a common goal, a common vision,” said Nelson. IPCR’s goals are threefold: genomic research; the creation of a better, adaptive model for clinical trials; and engaging and educating communities.

“Ultimately, we’ll engage the entire state in activating the community to both understand screening and prevention all the way through engaging them to participate in clinical trials so we can find out what treatments really work to extend survivorship and eventually cure,” said Nelson.

Prostate cancer is a particularly complicated disease, genetically speaking. Instead of a couple of known dominant genes that confirm risk, as with the BRCA1 or BRCA2 gene mutations in breast cancer, Nelson said prostate cancer has “at least 20 genes that are inheritable that confer some level of increased risk.”
Separating the strings of that risk, though, can be tricky.

“There are many prostate cancers that don’t ever need to be treated which is quite different than many other cancers as we understand them now,” he said. “What we want to be able to detect are the aggressive ones, those destined to behave badly. We don’t want to detect the ones that are indolent. Any treatment for those is causing harm.”

‘Ahead of the curve’
Nelson said Fred Hutch researchers Dr. Janet Stanford, Dr. Daniel Lin, and others have identified a number of changes in the hereditary or constitutional genome that confer risk for aggressive prostate cancer. Ongoing research is working to confirm these risk factors for aggressive disease with an eye toward creating better screening tools.

Better treatment is also a huge area of investigation with new developments coming in both immune-based approaches and personalized medicines based on the testing of “tumor avatars” -- human tumors grown in mice.

“Tumor avatars are a way to propagate and expand prostate cancers to test a wide variety of therapies simultaneously on a patient’s tumor,” said Nelson. “We test it and see what it’s most likely to respond to.”

Overall, Nelson said quality of life for prostate cancer survivors is much better today than in years past.
“Treatment has improved dramatically,” he said. “Robotic surgery has arguably fewer side effects and patients are out of the hospital faster. There are better ways to deliver radiation. And the biggest change is recognizing that not all prostate cancers require surgery or radiation.”

Lloyd, who underwent a robotic prostatectomy at UW Medicine in 2006, said as a prostate cancer survivor, he can’t help but feel that the work being done by the Hutch and its collaborators is “powerful stuff.”

“I’m inspired by the work they’re doing over there. I feel like they’re ahead of the curve,” he said. “They’re inspired to be there and I’m inspired to help in the small ways that I can.”

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