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As President of the Sacramento Chapter and a 26-year member of ASPA, I was recently tested for prostate cancer and like most cancer patients, embarked upon a self-education project that lead me to many very talented researchers, advocates, and urologists in the government, educational, and nonprofit sectors. I am hoping by writing this essay that men and their loved ones can be informed and prepared for prostate testing, treatment, and long-term care. Prostate cancer is the second most common male cancer. In 2013 The American Cancer Society projects some 30,000 deaths and almost 239,000 new cases – more prevalent than breast cancer in women. One in 6 men will be diagnosed during their lifetime and African-Americans are 60 percent more likely to be diagnosed! More than 2.5 million prostate cancer survivors live in the USA.
It is a very complicated disease with many variants; we are learning there are at least 27+ different gene types, each with different disease characteristics. Prostate cancer cannot be treated as a homogenous disease; patient tumors are frequently heterogeneous, carrying numerous mutations. It is so common, and often so benign, that most men will die with cancer cells in their prostate that have never been diagnosed, and have never been symptomatic. Eighty-five percent of men are diagnosed with low risk disease and for some 60 percent of all diagnoses either no action or primary treatment by radiation or surgery is required to manage the disease for a lifetime. Thanks to the advent of PSA testing, only 15 percent of men are now diagnosed at intermediate or advanced stages that may require more complex treatment. For 30 percent of men overall, the disease does reoccur after primary treatment.
The key to treating prostate cancer today is to diagnose it early and then treat or follow the disease depending on its level of aggressiveness. Many may have seen the recent, controversial recommendations of the United States Preventive Services Task Force discouraging the PSA test because, they maintain, it leads to over-treatment. Not only did the USPSTF misinterpret the data; they made an essential and logical error – PSA testing only provides information, NOT treatment. How that information is interpreted by the medical community and patients is what leads to over-treatment. Today, the PSA blood test is the simplest, easiest, least invasive and most readily method available to alert men to the possibility of potential disease before it is well advanced. PSA testing is often suggested as a major reason disease-specific death has fallen more than 40 percent over the past 20 years – early diagnosis saves lives! Fortunately, I was able to access a premier medical university to obtain expert guidance on my case.
Between treatment and research, prostate cancer is a multi-billion dollar U.S. industry – and much of this business takes place at institutions administered by members of ASPA. The federal National Cancer Institute places the current value of prostate cancer treatment at almost $12 billion.
Twelve major prostate cancer organizations, with research, advocacy, lobbying and support portfolios, form the nonprofit Prostate Cancer Roundtable that meets quarterly in an effort to coordinate respective efforts. The major sources of research funding are the Department of Defense, the NIH, and the nonprofit Prostate Cancer Foundation (PCF) – the world’s largest private funder of prostate cancer research generating more than $530 million since its 1993 inception. PCF-supported researchers have made many of the significant breakthroughs in the new treatments and medicines that rarely make advanced prostate cancer the short and painful death sentence it once was.
New drugs like Zytiga (Abiraterone) and Xtandi (Enzalutamide) are revolutionizing hormone treatment, while Provenge (Sipuleucel-T) and Ipilimumab encourage our own immune systems to fight this insidious disease. All these drugs owe some debt of gratitude to PCF.
Since inception, PCF has been a proponent of cross-institution collaboration. PCF and StandUp2Cancer have recently joined together to fund $20 million to two dream teams, one the East Coast, the other on the West, that will progress treatment for men with advanced disease. In doing so, this research will go a long way to identify the various genetic types of prostate cancer and permit personalized treatment strategies, leaving behind the homogenous approach of earlier years.
The PCF model is based on venture philanthropy investing dollars in innovative high-risk projects rarely encompassed by government funding. It also calls for sharing of the findings within the PCF global research enterprise; furthermore, the PCF grant process is more streamlined and rapid than public funding. Many of the public institutions continue to benefit financially from the commercialization of research funded by PCF dollars. As of early 2013, PCF has funded the promising projects of more than 118 “Young Investigators” in US labs – young scientists who PCF hopes will dedicate their careers to prostate cancer research. Their government institutions, many of which are affiliated with ASPA through membership of key employees, commit to match the PCF grants dollar for dollar. However, much rigorous debate remains about how, when to test for and to treat prostate cancer.
Forty years ago, a prostate cancer diagnosis was a lethal one killing almost 50,000 men annually. Because it is frequently asymptotic until well advanced, diagnosis guaranteed impotence, often incontinence, and all too frequently death. We have come a long way in four decades; today more men die with prostate cancer than from it. When found early, it can be treated with minimal side effects; when found late, there are many protocols to minimize suffering and prolong life. Much of the research and treatment is conducted at institutions represented by ASPA membership – we thank you for the cooperation with your institutions. Meanwhile, I am a lucky patient at the University of California, San Francisco Medical Center for Urology. I intend, with expert care and advice, to remain an ASPA member for a long time. I urge you to contact your local research institution or prostate advocacy organization for expert information.
I must recognize the following experts in helping me factually detail this essay: Dan Zenka, Vice President of Communications at the Prostate Cancer Foundation, and Richard Davis, MedaFit Founder, both survivors of locally advanced Prostate cancer.
Author: Geoffrey McLennan is the ASPA Sacramento Chapter President.