Transforming Health Care through Innovative and Impactful Research

I am a survivor of four primary cancers - thyroid, prostate (primary and recurrent), renal, and melanoma. My grandfather and uncle died from prostate cancer, while my father and cousin have also been afflicted with the disease, so I've always known that I have an increased risk for prostate cancer. My initial diagnosis coincided with the terrifying events of September 11, 2001, but receded into the background against the shock of witnessing the collapse of the World Trade Center and the dismay that those events caused me. I live across the river from lower Manhattan and could see the twin towers from my house.

When I am not working (my career is in commercial and industrial real estate), I travel to the Berkshire Mountains in Massachusetts, where we have a home. I spend long hours working in the garden and nurturing the pond there. Music and cultural events abound in the Berkshires and New York City and I attend the opera, theater, and museums regularly. Although I do not travel far, I love to find places that are a little off the beaten track, while also remaining engaged in my synagogue.

As I began to research the options for treating my prostate cancer, and coming to a decision that laparoscopic surgery was my primary choice, I began to realize that very few surgeons in the United States, even in New York City, had experience in this procedure. Ultimately, I had the surgery at Massachusetts General Hospital in Boston. I thought it was curative and was caught off guard when the cancer recurred more than 4 years later, a development that was extremely distressing to me and to my family. I worry about how my illness affects my family, particularly my wife. I fear that I will increasingly become a burden, as I get sicker, and that the loss of my income will burden my loved ones. I am heartbroken to add to the family history of prostate cancer risk for my sons, both now in their 20s.

My actual involvement in advocacy began with the recurrence of the cancer. A scan revealed a 10 cm mass in one kidney as well as an enlarged lymph node in the groin. I underwent a radical nephrectomy and started hormone deprivation. Much to my dismay, I learned I had primary renal cancer in addition to recurrent prostate cancer. My best friend had just died of renal cancer. I was feeling lost - disoriented, threatened, exposed, confused. Searching for support in the Metro-New York area, I met Darryl Mittendorf, the Executive Director of Malecare, who challenged me to "change the landscape" and to start a support group for recurrent and advanced prostate cancer survivors. I accepted his challenge, and so began my volunteer work with Malecare, which led to my becoming its Director of Advocacy and Advanced Prostate Cancer Programs. In this capacity, I have initiated face-to-face support groups and an internet support group for men with advanced disease and their families and partners. We continue to grow in numbers and now provide services to over 560 participants from around the world. I write a blog (www.advancedprostatecancer.net) about advanced prostate cancer that receives over 2,000 hits daily. I have testified at the FDA and met with members of Congress to talk about research and prostate cancer awareness. My wife, Dr. Wendy Lebowitz, and I presented a paper at the 2009 Annual Meeting of the American Group Psychology Association on the role of face-to-face vs. internet prostate cancer support groups. Today, I serve on the Board of the New York State Prostate Cancer Coalition. I am a founding member of the "Prostate Cancer Round Table," an informal organization that serves as a coalition of over 15 prostate cancer-specific organizations to coordinate messages and actions of various groups, and I have served as a representative at One Voice Against Cancer (OVAC), helping to coordinate the political actions of a large number of cancer advocacy groups. My wife and I have co-led a Malecare support group for men with recurrent prostate cancer, a community-based, interfaith-focused group for individuals living with cancers and their families and friends while serving at the local level with the American Cancer Society.

When I began reviewing for the PCRP, I had just begun treatment with hormone blockade, which, along with many of the physical side effects, overwhelmed me with memory and concentration difficulty. Nevertheless, I was determined to work through the proposals. Not having a science background, I struggled to complete my assignments. But, complete them, I did. I went to the peer review and served successfully as a consumer reviewer, bringing what I saw as necessary insight to the process along with a fierce desire to make sure that the voices of consumers and their families would be heard clearly throughout the funding process. I want to place special emphasis on late-stage disease, the type of prostate cancer that actually kills men, and I am excited about the willingness of the PCRP to fund "high-risk, high-return" types of research. These are studies that otherwise might not be funded by other funding agencies but whose potential can change the course of treatment and have a direct impact on the lives of so many men. I came away from the peer review with a newfound ability to read and evaluate research and to translate this into language prostate cancer survivors and their families can understand. The review process has pushed me to become comfortable in talking with researchers about their work, which, in turn, allows me to interact and challenge the researchers I meet at the various meetings.

Despite the years since 1971, when The National Cancer Act declared "war on cancer," we are still in the very early stages of cancer research, including prostate cancer research. We are still forced to measure survival advantages in mere months. I am hopeful that with better understanding of the human genome and new avenues in immunotherapy, we might be able to see survival that goes beyond a few months. Years would be great, but unfortunately, I think we still have a long journey to get there. I am grateful to be able to make this journey.