James Kiefert Video (Text Version)
Title of Talk: Introduction and Patient Representative
Dr. Howard Soule
We have the opportunity this morning to—to really go back up to 35,000 feet before we get on our airplanes and literally go up to 35,000 feet to think about the future of the discipline and a number of the unmet medical needs that’ll be addressed by our—by our distinguished speakers this morning. But before—before we do that I want to introduce my friend and Integration Panel colleague for a number of years now, a major force in Us Too International, Mr. Jim Kiefert.
James Kiefert; Us Too International
Thank you Howard and thank all of you for being here. Sometimes I—I get goose bumps when I meet these researchers, clinicians, and laboratory researchers who are all working for me. That’s why they’re in this business. They’re trying to find a way to cure this disease that has been a plague to so many men.
Let me give you for some of you who haven't seen the video, just a little bit of other information about what happened to me with prostate cancer diagnosed at age 50 and at age 50 I had a PSA of 39. And I had my treatments. I had surgery and then I had radiation. But I’m one of those who has never had an undetectable PSA. So I have learned to live with prostate cancer and I’ve been empowered by learning as much as I can about this enemy that if it almost sounds like it would like to take my life if it can. So like a good warrior, I wanted to learn everything I could about my enemy.
I found that being in a support group and finding other men who are going through the same trauma that I am gave me that feeling that I’m not alone in this battle. I learned a lot from some of the consumers who are in this audience. All kinds of things that the doctors don’t have time to tell us about how to take care of some of the side effects of our treatments, how to—how to get that energy and commitment to do the diet, the exercise, and the other things that contribute to our well-being.
I made a commitment early on that I was not just going to focus on my body and we do have a lot of good medical experts who specialize in body parts, but I wanted to look at my body holistically and I wanted to really—wanted to acknowledge the fact that I am mind and spirit. I spent 41 years as an educator. I got great professional and personal benefit by helping other people as much as I could, as a teacher, as a professor, as a school superintendent—everything I did was to benefit the youth and the people in our classes. So when I retired, I found Us Too which is a support group that is dedicated to providing education and support for all of the people that have prostate cancer and their families. And I found dedicated men and women who are willing to give of their time, their talent, and their resources to share this information with others.
One of our big themes is knowledge is power. We’ve said this in education forever and we’re saying it now in every one of our support groups. The more we know, the better informed decisions we can make about our treatments, about our well-being, and about our mental and spiritual state.
I mentioned that I was a warrior; I’ve been facilitating a support group for 18 years now. And I have this burning desire to give back, and as I’ve learned things I want to share it with those who are willing to listen and use it. My support group is called The Olympia Us Too Warriors. The guys in there said I don’t like being called a survivor. It kind of sounds like you’re a weenie and that you’re sitting in this boat out in the middle of the ocean waiting for somebody to come and get you. Instead, they wanted to be warriors. They wanted to define the enemy, set their goals, and learn everything they can. And a part of that is making sure you have a good positive attitude, learning as much as you can, knowing that our mind has a huge control over our quality of life. If we look for the bad we see the bad; if we look for the good we usually see the good. And we can use that power of our minds to look for information to help us with this arthritic knee I have and a hip joint that gives me problems and how I can exercise to keep my body as strong as I can. And I do—three days a week, I do 200 pushups, 200 sit-ups; I do 200 curls—50 at a time. I do weights; I get on my treadmill for at least a half hour at 3 miles an hour. And if there is one medicine that we heard people talk about that you don’t need a prescription for and it is not going to affect our economy it is exercise. It’s the cheapest medicine you can get and exercise as best you can.
We also look about—look at our minds and saying are we going to find the best physician, the best clinician? We recommend to all of the people in our groups to find a doctor that you relate to, understands you, and you feel confident in, and if you don’t feel that confidence then maybe you need to find another doctor or you need to learn more so that you can in fact find that team. My oncologist and I heard on the podium here the other day that Chris Logothetis was the number one oncologist in the United States and I’m up here to say Tia Higano is the best oncologist in the United States. But every one of us who have a physician that we trust and respect and can give us that information does become the number one—the best in the whole world. And we need to find a team of people because we can't just medicate our prostate gland; we need to make sure we don’t have a heart attack and die first. We need to watch our diet and our exercise. We need to be healthy holistically.
When I come to a meeting like this I get inspired and I get hopeful and encouraged knowing full well that some of the very best and brightest researchers in the country are here trying to solve this dilemma. I find so much encouragement in the vision and mission of our Prostate Cancer Research Program where it says we’re going to conquer prostate cancer. Conquering prostate cancer means are we looking for a cure? It also says we’re going to eliminate death and suffering. Now when you have a vision and a mission so strong, such a commitment that says we’re not just going to see if we can alleviate some side effects and we’re not just going to see if we can shrink a tumor, but we’re going to find a way to conquer this disease and eliminate the death and the suffering. I gain an awful lot of confidence from that because I have sons, I have grandsons, and now I have five great-grandsons. So I feel a real investment in getting this program going and keeping it going and know that as consumers and as researchers we have an obligation to see to it that this program continues.
Let me just give you a little episode of what I do when I heard that Senator McCain had made some less than supportive comment about this program. It didn't take me long last night to get on the Internet and the telephone to make sure that there are people getting the message across to him. And when it comes to the budget item as a private citizen I can do legislative counseling. I can tell my Senator and Representative exactly how I feel and how important this issue is. But I also found that my wife is sometimes more effective at it than I am. And I find that my daughters seem to get a little bit more attention from the Senators and Congressmen and I have three granddaughters that are teachers, who are very committed to saving their grandfather, their brothers, and their cousins.
So we need to muster the troops. We need to carry the water to see to it that all of this research that we have seen we have made giant steps in this battle against prostate cancer; we’ve seen it on the screen. We’ve heard the scientists talking about it. We are at the edge of finding that process, that therapeutic that will in fact conquer prostate cancer and will eliminate the pain and suffering from this disease.
So my final message as a consumer is get out there, don’t just sit there and say well, maybe I’ll let that person do it or these people are a little more outspoken than I am. Every one of us has an obligation and a responsibility to follow through with this. This program has been an inspiration for me. I have felt so respected on the Integration Panel, reviewing all the documents. At first it was I didn't understand all those words but you know they really didn't care. They said look at it from the perspective of you as a prostate cancer survivor but also the people you represent and that’s something for us to remember. I’m not just speaking for me; I’m speaking for all of the men with prostate cancer that I come in contact with.
You are going to be delighted to hear from some people right now who are going to be summarizing the answer to some questions that the consumers have proposed. Question one—there are currently approximately 32,000 men dying of prostate cancer this year. Our question is—what are the most promising therapies that will save the lives of men and those who have advanced prostate cancer, who have metastases, or those who have their prostate cancer stabilized whether through androgen deprivation or diet and exercise, and then what of all these things that we’ve heard can we use for the people who are just diagnosed to try to decide on a major treatment and decide how they can then help conquer cancer and eliminate the death and suffering? Thank you very much.