Transforming Health Care through Innovative and Impactful Research

"I knew something was really wrong when I looked down and saw all that blood in the urinal."

So began Craig's journey with high-risk, locally advanced prostate cancer. Shortly after he was diagnosed in January 2009, his urologist told him it was a "nasty, out of the box" cancer. Subsequent tests confirmed that the blood he saw was a direct result of prostate cancer.

"When I was diagnosed, about the only thing I knew about this cancer was that it was pronounced 'prostate' and not 'prostrate.'" The reality of hearing those words no guy ever wants to hear-"you have prostate cancer"-was the same as for every other man: a life-changing diagnosis with a very steep learning curve.

"My journey with this cancer has distinct dimensions-a three-stranded cord, if you will."

First, there's the clinical strand. Since the cancer had already escaped his prostate and invaded his urethra, surgery wasn't an option. "My doctors recommended an aggressive course of treatment, and I'm sure glad they did."

Forty-two sessions of radiotherapy and three years on hormone therapy have resulted in Craig having an undetectable PSA for more than four years.

"But since it escaped my prostate before I was diagnosed, I wake up each morning knowing that one of these days the cancer could come roaring back."

Then, there's what Craig calls the emotional/relational strand. Prostate cancer is rightly called a "couple's disease," and Craig's wife, Susan, has been a loving and supportive partner, knowing too well how hormone therapy affects an intimate relationship. Complicating matters is Susan's own chronic disease, multiple sclerosis.

"We had always assumed that I would be the healthy caregiver," Craig says. "We have learned to love each other more deeply and take it slowly, one day at a time. We give thanks for each new day that we are together."

The third strand is the spiritual dimension. "There is no more effective reminder of your mortality than hearing you have cancer," Craig notes. "I always had a faith in God, but it's not until a serious crisis comes along, and you have to deal with the 'Why me?' and 'It's so unfair' questions, that you come to know what you really believe."

"When I was diagnosed, I felt really alone. I wanted to know how other men felt. And what they feared."

Craig discovered it wasn't difficult to find men who had been diagnosed and treated for prostate cancer. But they were often unwilling to talk openly about their experience-especially their feelings and their fears. They'd say, "Yes, I had prostate cancer, but I've had surgery and I've moved on. Cancer is in my past."

"So, I went looking for a book written by a man who had prostate cancer that dealt with cancer's psychological and spiritual impact." He found books written by women who had breast cancer that described their emotional battles and spiritual journeys. "I guess few men want to write about how they feel, or what they feared," Craig observes.

"As an engineer, I'm pretty data-driven so I started scouring the Internet-not just for clinical information but also for men's personal stories. Happily, I found quite a few. And that helped."

Wanting to record his own story, Craig started a journal. "I especially wanted to record my own feelings and fears as I underwent treatment. Eventually, writing became my daily personal therapy."

Craig's journal grew longer as he explored not just his own treatment experience and feelings, but also widened his research to the demographics, economics, medical controversies, and advocacy issues surrounding prostate cancer.

The journal evolved into a book, One Man's Life-Changing Diagnosis: Navigating the Realities of Prostate Cancer, published by Demos Health (New York) in 2012, and winning a "book of the year" citation from the American Journal of Nursing in early 2013.

"My passion has become helping guys like me (as the book's title says) navigate the realities of prostate cancer." In addition to counseling newly diagnosed men one-on-one, Craig is active in prostate cancer advocacy, including participating with the advocacy organizations Us Too International, Malecare, and the ZERO: The End of Prostate Cancer, the latter of which conducts an annual summit where participants gather in Washington, D.C. , to advocate for prostate cancer research funding, particularly for the innovation- and impact-based Department of Defense Prostate Cancer Research Program (PCRP), with their own senators and congresspersons.

"My passion is talking with newly diagnosed men and their spouses and helping them make those decisions I had to make alone," Craig emphasizes. "But equally rewarding has been my privilege to be a Consumer Reviewer for the PCRP. My four years (so far) helping to identify the best research or make a positive difference for men like me have been a fabulous learning experience as I've learned just how enormously complex prostate cancer is, and why it is such a challenge to eradicate this scourge.

But perhaps the most outstanding aspect of being a Consumer Reviewer has been to meet-and work with-the dedicated scientists and PCRP staff who are just as passionate about conquering this cancer as we guys who actually have the disease. It is difficult to imagine a more fulfilling way of 'giving back' and helping ensure that the thousands of men who follow me will not only benefit from the terrific work being accomplished by PCRP-funded scientists, but that they will never have to experience those dark fears of feeling so alone when they hear those four awful words, 'you have prostate cancer.'"