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Robert: living through kidney cancer I live in Yuba City, California, which is a small town about an hour north of Sacramento in the north part of the state, which I refer to as God's country. I am now 53 years old, I have been married for almost 30 years, and I have two beautiful daughters, both of whom are in college in the east. So I am very poor, paying college tuition. My story begins, I think this is my third year in November. I had two previous instances in which cancer I thought affected me, but in the end didn't. About ten years ago I was told I had tumor on my neck and when I had an operation, they discovered it wasn't a

malignancy but something else. Then about five years ago as a result of my routine physical examination, my doctor called me up and said I think you have lymphoma. And after spending two or three days before a biopsy and being told it wasn't lymphoma but was another disease called sacroid I had two instances in which I had been told that I had cancer, and didn't. The symptoms So three years ago when I went in for my routine physical examination, I had been very tired. I'm an avid golfer and I play a lot of golf, and I do exercise, and I had been noticeably a little more fatigued, and also, my back had been bothering me. And those of us who have back pain know that sometimes you have pain down your leg, and I had pains down my leg but in addition I'd had some numbness in my toe. And I just assumed that it was part of my back problem. So really it's a result of numbness in my toe, I decided it was time to see my physician for another routine physical examination. I had missed the previous year, but I went and visited him. I have a great doctor that I know personally, so I went through my whole battery of different kinds of things, and everything appeared to be normal. I told him about my tiredness and about my toe and we laughed because he assumed also that it was my back that was perhaps giving me problems with the tow. Anyway, you know I spent my day at routine physical examinations and went home. And the very next day, in the afternoon, at five o'clock, which I knew when he called was obviously some problem. My physician called and said, Robert, I think you should come back in, we need to do some more blood work. And I said, "What's the matter?" And he said, "Why don't you come over right now?" Well, when your physician tells you to come over at 5:15 on a Friday afternoon, you obviously think, you know, what's wrong. So I go back and the first thing he does is sit me down and they take so many vials of blood out of my arm that I was beginning to wonder, and basically he said to me, he said, "Robert, your hormonal levels are a little bit off. He said you had absolutely no testostricin and he says, "Is everything okay at home?" And I said, "Well, yes, everything is okay as far as I understand it." But he said, "you had absolutely none. Now, if you had too much, that would indicate some type of tumor, but I don't know what the problem is, but I think we should do some checking." This was a Friday afternoon. On Monday he had me , in fact Monday and Tuesday of the following week, you know, it helps when you know the people in the hospital, the administrator. He had me in and I had about five different scans all over my body beginning from my head, because I think that's where he thought the problem was with the adrenal gland or something of that sort. And you know, they say nothing wrong and you go back and they take some. Anyway, I think I had five of them over a 2-day period. The diagnosis And eventually the following Wednesday, he called me back and said "Come over and see me." And I went over to see him and he said, I think I have found out what the problem is. He said, It would appear that you have some type of tumor in your kidney, and I'm sending you to a urologist, another physician whom I happen to know and so he saw me the very next day. I was very fortunate, as I said, I knew the doctors and got immediate appointments. I saw him the very next day. He took some more pictures, looked at it, then on Thursday of that week I went back over there. And he basically told me that he was 99% sure that it was a malignant tumor in my kidney and that I needed to have an operation immediately in order to remove this kidney. You know, this was a Thursday afternoon. It just so happened the following Friday I was leaving for Florida for a meeting of the American Cancer Society, and I wasn't about ready to have a major operation the very next day, even though he told me I should have it the very next day. So I took some of my x-rays and went to Florida and talked to some of the wonderful physicians with the American Cancer Society about my situation, and they looked at them and said, Yep. You need to do this. So I get back here on the following Tuesday and go see him and he arranges for an operation the very next day. I'm very uncomfortable with things that go quite so quickly but there seemed to be a great deal of urgency here. And I asked him what the urgency was. He said, "You have two situations: if in fact the malignancy is contained to your kidney and is not in any way shape or form touching the sides of the kidney, you might get away with just removal of your kidney and maybe part of the urethra that attaches to the kidney." But he said if in fact it is attached in any way shape or form or has touched the edge of the kidney, then we're gonna have to take a great deal of your insides. I don't need to go into all of that, but suffice it to say that you know the story was that you could come out with a bag and the whole routine and lose quite a bit of your internal organs. And of course they prepare you for the worst, but he was very honest with me and he told me that in about 60% of the cases, that is the result. But that I needed to do it immediately. Digesting the news So, you know, you go home, and you have about 12 hours, because I had to be in the hospital the very next morning at 5 o'clock, I had about 12 hours to sit down and digest this kind of thing. But you know, after you go through all the kinds of emotions that you do and someone tells you that you have a malignancy and a malignancy that can result in serious depletion of your internal organs and result in perhaps a bag and all of these kinds of things, you know, you do go through the typical kinds of things that people do. You wonder why it's you, you think I have a girl in college and another one starting the next year, and you go through all those kinds of things and your wife freaks out, and all of those kinds of problems that you've heard about. I've done a lot of work for the American Cancer Society I've heard people discuss these problems quite at length, but there's a big difference between hearing people talk about them and actually experiencing them yourself. I was really convinced since this was my third warning that there probably wasn't going to be anything. But at this stage of the game I began to you know understand that there was something serious here and I needed to do something about it. So, you know, you get ready and you check in to the hospital the next day and you know, I live in a very small town. So there were a couple of things that immediately went through my mind. I'm a lawyer, I'm a small-town lawyer, I know what happens when people begin to think that you're ill and have cancer, I didn't want anybody to know that I had it, I was fearful you know people immediately react inside, Well, he's gonna die, they have to make changes. So I really wanted as few people as possible to know that I had it. You know you try to do those kinds of things quickly and in secrecy, but in a small town, especially when you know so many of the hospital staff, it tends not to work that way. My children were very upset about it. I think they had almost more of a difficult time with it than perhaps their mother or myself. Their association with cancer is immediately DEATH, and I had one daughter in college who insisted on coming home from the east, and you know I couldn't convince her to do anything to the contrary. Those are the kinds of things that went through my mind for the most part. I was concerned that you know that I would come out of this with my internal organs intact but I had convinced myself that there was a likelihood that I wouldn't and you know, you just have to deal with those kinds of things. Going through the treatment Anyway, this is all happening so quickly, and the doctors are telling me that there was an extreme urgency to do this that I had to do it right away, which is not my way of doing things. But the long and the short of it is the very next morning at 5 o'clock, I went in and had the surgery for about seven hours. I was very, in hindsight, you know, after everything was said and done, I remember waking up in the intensive care unit the very next morning. The first thing, that afternoon, I did I even remember this was reach down to see what you have there and what you don't, and I noticed there were some big patches but there wasn't any kind of attachment to it. But the long and the short of it was that I was relatively lucky. The physician indicated to me that in his professional opinion, the tumor had not touched or attached in any way to the side of my kidney. And as a result, he didn't have to take nearly as much that he thought that he would have - they always take a little bit more. But in essence, I lost a kidney and a little bit of some tubing around the kidney, but none of the other vital organs. So as a result of my surgery, the only thing I had was a huge bulge in my side. They had to cut all my muscle and of course it sticks out, but you know, that's a minor problem, when the alternative could have been something much more serious. They give you the election of whether you think you want to follow up with some kind of radiation or chemotherapy. And my gut reaction was that if they recommended it I would, because I know a lot of the other types of cancer patients do that. But I did consult with my Cancer Society friends and doctors, and they told me based upon, I did send my x-rays away to a number of them. The physicians here in my local community were very cooperative about my getting second opinion, and I always think you should get second opinion. In this particular case, it just so happened, that I'm so affiliated with the Cancer Society that I know so many of the physicians and I happened to be going to this meeting, that I was able to get five or six second opinions right there on the spot. But if one hadn't been so lucky, I really do think it's important. Some physicians don't like this and over to second opinions, but mine thought nothing about it. So I had five or six free second opinions, which was very helpful. And they all concurred that probably their advice was that I didn't need to do anything like that right at the present time, that it looked as if my pain with my big toe had taken me to the physician and they had discovered this problem early enough. I was told that if it had been another month or so, then it would have been an entirely different situation. But I discovered it early enough and with the surgery as quickly as I was able to do it, I was fortunate. So my prognosis was you know, hopefully it hadn't attached and hopefully they had gotten it all, and I chose not to go through any subsequent treatments. A lack of understanding So I was put on follow up every three months for three years. I was to go in and have the whole battery of tests and I have been doing that every three months for the three years. I think I'm finished with my three-month batter of tests in November and then will go for six months, for an additional two years, to put me through the five year period which I think five years is still a standard procedure. It's interesting because most of the problem I've had have occurred after where I'm in a small practice here, and you know, what occurred within a relatively short period of time, in fact, within a year of my operation was that my insurance became a problem. You know, they can't cancel your insurance but they upped the premium so much that I could no longer, and my partners here could no longer afford to make the premium payments. So I lost, sort of lost my personal insurance. I was very fortunate in that my wife is a school teacher and I was able to be included under her group insurance policy. But that was really something traumatic to me in losing my insurance and not knowing for awhile whether my wife's policy would pick me up because of my history. And I was very angry and very upset that the insurance company was, you know, they don't cancel you so they can honestly say they don't cancel people, but they bumped the premium up so high that a lot of small firms and solos cannot pay the insurance premium. So that was a problem. Shortly thereafter I did have the problem with the news running around town that I had malignancy and as many of us know, there's a false impression who has a malignancy is going to die within a relatively short period of time. So I have numerous, numerous people, I was off for two or three weeks, calling. And you know, thinking they should take their files and their work someplace else. You know, is he dead yet? There are a lot of very negative and false impressions about people who suffer from malignancy, and in a small town like this, those were rampant with me for awhile. In fact I did lose a couple clients who thought they'd better take their work someplace else now because he's not gonna be around for so long. And even almost three years out, you can tell when I still see people and I still meet them that's the first they think about. So I know that it's not far from the backs of many of my client's minds that has bothered me as well. But other than the insurance problem, the only other problem that I have experienced, even on my group policy with my wife as a school teacher. And they have very good insurance, you know, they're even balking at the three-month updates, and the cost incurred with the exams and the scans that I take every three months. I'm beginning to have some difficulty with the insurance company wanting to pay for that as well. From a practical point of view I'm glad I'm starting on my six months checkups because that may make them a little more receptive. But my physicians have been telling me that they're balking a little bit, you know, why should we pay for these three month checkups, he's free of the disease and the typical reaction of an insurance company. But so far, a little wording a little discussion, they've come through and they have paid. I think it is very important for people who discover that they have a malignancy of whatever kind, now mine is a little bit unusual, it's not as common as many of the others, and it was a little bit difficult to find. Getting and staying informed But I think it is very important for people to take, I don't want to say an aggressive attitude, but you have to be willing to speak up, you have to be willing to insist upon second opinions. As I said, some physicians are a little bit reluctant to farm you out for second opinions for any number of reasons, but I think it's very important to get second opinions. You have to insist upon second opinions, you have to, my physician kept saying, you have to do this immediately. Well, yes, maybe you do have to do it immediately but I do think it's worth it if you can swing it to spend a couple of days or a little bit of time getting a second opinion. It would have been difficult for me if it hadn't been for my associated with the American Cancer Society but I was able to get a second opinion. I also then think that you have to be willing to continue that. I mean, I had a real battle with the insurance company. My own personal insurance which I eventually lost, and subsequently with my new insurance. And I think you have to be aggressive in today's world and you have to stand up and you can't just sit back and do exactly what they say they will do and what they won't do. You have to be willing to fight with them, and even if you can't, then you need to get somebody who can speak for you and you know, can speak up for you. I also think that it's important, and this may sound funny, but I'm a lawyer so speaking doesn't really bother me. I think it's important for people who have experienced disease, who in my case in the beginning I didn't want to because I was fearful. But after I became aware that most people knew, I think it becomes important to be out there, to be visible, to let them know you're well, to let them know that you can beat this disease. That not everybody who is diagnosed with cancer dies within a relatively short time, and that has been one of my goals in this small town, to let people know, hay, I'm okay. I beat it, and you know, there are lots of people out there like me who have beat this disease in this day and age, and not everybody who is diagnosed with cancer receives an automatic death sentence. Looking at life from a different angle It also has, you know, one of the questions that everybody asks me is how has it affected your life on a personal level? Well, not in any really way shape or form, except for the fact that it does give you somewhat of a different perspective. I worked a lot and you know, it does make you look at things a little bit differently. It does cause you to get up every day and say, Oh, today's a beautiful day I want to go play golf, I'm not gonna spend all my time in the office. I began spending more time with my kids, you know my daughter who is still home, you know, going to her basketball games and her cheerleading tournaments and those kinds of things with some of them you know I didn't go before because I was too busy. Well, you develop a different perspective and you decided sometimes that it's important to do those kinds of things. When I saw how the diagnosis caused the reaction in my children, I can understand how difficult it is for kids who haven't experienced this life and death situation as young people don't, to suddenly be confronted with the fact that you know, they could be losing not only their father but their breadwinner, the person who's paying their college tuition. You know, what are they gonna do, are they gonna have to give it all up are they gonna have to come home, are they gonna have to do all those kinds of things which would be a great disruption of their routine? And they go through their own emotional roller coaster as well, so I decided that I was going to spend some time with them, and indeed I did. I went back to Iowa to my daughter's a couple of my daughter's basketball games, I've gone back to New York a couple times to visit my daughter who's in school. I've just decided that spending time with them perhaps is a little bit more important than playing golf every weekend or whatever it is that I like to do. So, it does change your perspective on life. It does make you, you do understand how things can change very quickly, you know, from one day to the next, you could be alive or you could be dead. It does make you get up in the morning and look at the sky and the birds and all of those cliches, and people laugh but it is very true. It makes you realize how lucky you are to be getting up, it makes you realize how lucky you are to be getting up with your body intact. Those simple kinds of things that I've heard people say so many times before really do come home when you are told that you have this kind of disease. You know there's a very good possibility it could come back at some point in time in the future. So my advice to anybody who is diagnosed with cancer is don't give up. Don't let it get you down. You need to be a fighter. You need to have a very positive attitude, because there are a lot of things that can be done to help cancer patients in today's world. A lot of us are surviving, a lot of us are going on to doing the kinds of things that we always did, with no interruption in our lives, you know. The outlook is good but you can't let it dampen your spirits, you can't let it take you into a depression and then and this is my own little personal thing, you have to show that to the general public. You have to show the general public, being your friends and your community, whatever, is that you can and you have beat it and that you are going on leading a normal kind of an existence. And only when the general public begins to see that do they realize that there are a lot of people who survive the disease. I really think that the impression still is that they are not, that cancer is a death sentence for most people, but indeed it is not. And there are more and more of us around who have survived, and as a result people need to see it and they need to know it. And they need to look at you and say, well, it's happening, because it happened to Robert, he beat it, as well it can happen to me it can happen to my husband who has prostate cancer, or whatever the case happens to be. And don't hesitate to fight the insurance companies, if they give you some degree of difficulty, which many times they do.