The Prostate Cancer Journey - Robert Voss
Robert Voss, a 23-year prostate cancer survivor, shares why it is important to constantly educate yourself about the disease. Robert highlights the various ways to seek information from going to a teaching university hospital, searching the internet, to getting your significant other involved.
1. How did you go about making your treatment decision?
2. Did you feel that you had an adequate understanding of all the pros and cons of each treatment that was available to you?
3. Is there anything that you would do differently in going about making your decision if you were to do it again?
4. Looking back, what advice would you give yourself as a newly diagnosed cancer patient?
Robert Voss - Prostate Cancer Advocate
Robert Voss: Well, good morning. My name is Robert Voss, that's V as in "vain", O-S-S. I am a 23 year prostate cancer survivor and I am still in the fight, I don't use the term battle, and you can never learn enough about what's going on in the cure, and not so much the cure, but in the ways to live with prostate cancer and that's why I'm here.
When I was diagnosed in 1996, we didn't have "the internet." Today you have all this other forms to try and to wear yourself out by learning and you have to educate yourself. I would give advice to people that are either think they have prostate cancer, may have, or they do have prostate cancer, just to do their homework, not to wear out the internet because there is not going to be a cure found on the internet, but to educate yourselves the best you can. Also, make sure that the doctors that you are dealing with just aren't concerned about you're another patient so that they can put a budget down for X amount of dollars they're going to get from a surgery or from radiation or whatever. My best recommendation for people, and if I would do it, is go to a teaching university hospital.
Well, the most important thing to me about going to a teaching university hospital or a hospital that's connected to it ... If you ask people in the United States if they've heard of MD Anderson, they'll say yes. Do they have any idea that's connected to the University of Texas? The answer's no. If you ask them if they've heard about Washington University, do they have any indication that's connected to Barnes Hospital or Siteman?
A teaching university has got academia that want to find cures and know the latest and greatest. They just don't practice something that's been done for the last 10 to 12 years. I heard a gentleman speak this morning that I was shocked to hear what he had to say and I thought I'm pretty well informed after doing this for 23 years. You never can stop learning and that's what you've got to constantly through the psf.org or Us Today or UroToday, which is done here at the University of Minnesota, headed up by Dr. Ryan. It's always an educational benefit.
And in addition to that, like I said earlier today, you know who really knows the most about some of this sometimes on prostate cancer? Wives, wives. Always get your wife involved in your situation. Don't go to doctor's appointments without them because they take notes and all you want to know is how long am I going to live? And that's how I would answer that.
It is so important to have a significant other to go with you and I mean either a wife, girlfriend, or probably hopefully not a mistress, but anyway, have them to go with because this is what they do. They sit there with a notepad and they take all the notes. If you're the patient, all you want to ask is questions like, "How long am I going to live? What do I do? Am I going to have erectile dysfunction or incontinence when this is all over and what's the best forms of treatment?" And then they don't listen to what some of those answers are and too often, the patient tries to get the doctor to say something what they want to hear versus what is reality.
The second thing I would say on that is that don't just trust your own body saying, "My body feels pretty good. I don't think that I have to do anything." When prostate cancer is in its early stages, it is so microorganism that it's not going to affect anything in your life. On a personal basis, I was a triathlete, could run five miles in 30 minutes, at 39 resting heartbeat, but I inherited the gene from other family members that says, "Hey, guess what? You have advanced prostate cancer at 46 years old". So don't think your body is going to speak to you.
Research has shown this is a gene mutation. It's passed on in generations after generations. Being a member of the Prostate Cancer Foundation board, we did a study and found out that if you've had a brother, a father, and/or an uncle on your father's side, you have a 93.7% chance of developing prostate cancer.
I say this to people when they say, "Well, you know I have a rising PSA. I wonder." And I first thing I ask him, "Did your dad have prostate cancer? Do you have a brother? Do you have an uncle?" And if the answer is yes, I'd say, "You know what? You need to go take PSA tests regularly, like every 90 days. If it's showing a rapid increase, you need to get a biopsy, and then also if it doesn't show that, but you still have a PSA rising, take it out. It doesn't do anything for you." I mean, if I had known then what I know today ... I had an uncle that died from this and et cetera, et cetera. I have an identical twin brother that found out after I was diagnosed and the people at Mayo clinic said, "Hey, by the way, you know it's just a matter of time and you're going to have this." He said, "Well, I'm going to wait and see." Well, he waited a year and then he found out he had it. I apologize if I raise my voice, but I can't emphasize this enough.
When I was first diagnosed, I wish I knew what PSA stood for because when I ... I wish I had known that and when the doctor called me and he said, "You broke the records on treadmill test. I wish more executives with your company and your company physical would be more like you, et cetera, et cetera, to handle the stress under." And I go, "Yeah, but here's the bad news: we've never seen a PSA level ever", which was 21. And I went, "What's that?". As I went back on previous physicals and blood tests, it said under normal, normal number, slightly elevated. Well, okay, so what? You know, what does PSA ... and I ignored it.
I think the awareness level is a lot higher today, and I am staggered when I will be with a group of men and we start talking about prostate cancer and PSA. I start giving them a lecture and so many of them don't have any idea what it is. Even if you ask a prostate cancer victim, "What does PSA mean?". Well, it's a ... It stands for prostate-specific antigen. It's an antigen that comes up. They don't even know what that means. I've had prostate victims, they still call it prostrate, and not to be crude, but I say, "Prostrate's what you're going to be if you don't learn to take care of your prostate cancer."
So, be concise. Learn all you can. Don't wear the internet out until midnight at night looking for a cure in "Heiseldurf", Germany or in a case recently where I almost went to. I was scheduled to go over to Melbourne, Australia, and then after the conversation with the doctor a while, I come to find out that while this treatment worked pretty good on very, very, very advanced cancers, they were all dead. And I said, "I don't think we're a good fit." Okay.
But it has become a personal ministry of mine, is what it is, and you may not want to put this in there, but I hope you do. Doctors and patients cannot deal with this if you don't have God on your side, and faith to me is a very, very important part of dealing with this. I just heard a term a while ago that says, "You need to have courage." The words "be strong and courageous" are mentioned about 20 times in the Bible. "Be strong and courageous", and that's what I would tell people that say they're going to have prostate cancer.
I've had friends that I bet in the early days of being on the board of the Prostate Cancer Foundation ... They died more from anxiety than they did from dealing with prostate cancer. I had a doctor friend that also said to me, "Every patient I knew that willed themselves to die, did, so you got to be in the fight". And it gets wearisome. It gets expensive and it gets wearisome, but that's what we're to do.
My faith is very, very important to me. The other place I draw strength from, quite frankly, is my wife of 20 some odd years that knew when she married me 20 years ago that I had this disease for three years prior to that. She has never missed a doctor's appointment with me. She didn't come to this because we had some circumstances, she couldn't come. And she'll be regretting she didn't, but she will want to know everything that she can. She will read all the material I've got, but you know when you get married, this is ... I was also in the wedding business after I got out of my career. I built this very large chapel, got in the wedding business, and there's two types of people in this world, givers and takers. When you get married, you want to make sure you're marrying a giver and not a taker, and this has been proven.
So a giver is someone that's going to give their time and give their energy and be there near you, and when you're having a bad time, they're not going to allow you to do pity parties. All of us can do pity parties that have prostate cancer. It doesn't help anything. At the end of that pity party, you don't sit there and raise a balloon and say hooray. You just sit there and have a pity party. What good does that do? That's a long way of going around. When you're going back to your faith if you think you know where you're going and you know that you're going to a better place, what do you have to be worried about?
My mentor was a guy named Sam Walton. You may know who that is. He's the founder of Wal-Mart stores. He was the greatest businessman of all time as far as I'm concerned because he brought the cost of living down for everybody in the world. But I had a dream one night and I told my wife the next day that I said I had the greatest dream ever. She said, "What was that? I've got to hear this because most people say what? 'Man, I had the worst nightmare I've ever had last night,' right?".
So this was my dream, I had died. God spared me from a lot of pain and suffering from dealing with this cancer. The next thing I'm facing is an eight-foot-tall Jesus, and Jesus looks down at me and he said, "Do you know how many sins you have to answer for?". And I said, "Hundreds of thousands". And he says, "That's correct, but you believed in me. I've gone to the Father on your behalf and I want to welcome you to glory." And just like in a football team, I said, "Yes, I made the cut."
Then he says to me, "By the way, somebody has been wanting to say hello to you," and he steps aside, and my mentor, Sam Walton, walks through this big white door, and held his hand out and said, "Oh, friend, I've missed you." So anyway, I woke up in tears because I said, "This is what I have to look forward to." I would tell every man, you know what? And a lot of people say this, it's amazing how much closer you come to God when you're given a terminal disease. The last two words everybody faced when they jumped out of the buildings during that horrible experience in New York on 9/11, you know what they were? "God save me." Three words. "God save me." He will if you believe.