ANDREW:
Hello and welcome to the American Cancer Society's Cancer Survivor's Network, a service created by and for cancer survivors. I'm your discussion leader, Andrew Schorr, from Healthtalk Interactive in Seattle. Today's topic, Living with Prostate Cancer for Men Sixty-five and older. On the phone with us are four prostate cancer survivors from across the country, men who are all 65 and over and have completed their treatment for prostate cancer. Over the next few minutes, we'll discuss several issues, including dealing with incontinence and prostitis, how to deal with impotence, joining support groups and what issues are talked about. How do you live your life to the fullest each day and recommendations for other prostate cancer patients over the age of sixty-five. Now, let's begin with Walter, who is joining us from Sheldon, Vermont. Walter is sixty-five and had surgery for his prostate cancer and is married. He has no children at home now. Walter, you found joining a support group very helpful.

WALTER:
Yes, I did.

ANDREW:
Tell us about that and why joining the support group would be something that you'd recommend to others.

WALTER:
In my particular instance, the area in which I live is primarily dairy farms, so I'm a little more remote than a lot of people who live in a city. After the surgery, what affected me very much was the incontinence and having to wear diapers in the beginning and so forth, and I felt that I was probably the only one in the whole world who was going through this, which of course is foolish. I was put in touch with a support group at the hospital in Burlington, Vermont, and of course there I found out that every one of us goes through that, and this made it quite a bit easier. I made it a point never to miss a meeting, and it helped me psychologically very very much.

ANDREW:
Also joining us in Dallas, Texas, is Dave. I understand Dave you are 77 and you had surgery and radiation and that you'd really like to help people understand that it's important to communicate, even within your own family and not to exclude communicating with your wife. Is that right?

DAVE:
That's absolutely correct, Andrew, as a matter of fact I am part of the American Cancer Society's Cancer Surmount group of men and we counsel with newly diagnosed patients and with cancer being a family thing and not an individual thing, my wife also counsels with the wives of the gentlemen. I also belong to a support group and we meet once a month and our program consists, each month we have a professional that comes in and talks with us covering such areas as impotence, incontinence, pain management, psychological effects, the whole works, and then everything is open to discussion. Our wives come along.

ANDREW:
How does it help you, as a cancer survivor, in extending yourself in doing this volunteer work?

DAVE:
Well, there's a lot of self gratification in this and particularly when you see or work with a gentleman who has come out of this and you can almost see the fear that is alleviated in their eyes and expressions and their talk and their tone - it's very rewarding.

ANDREW:
Can you give me a specific story where you know that you've helped someone and maybe it's helped you as well?

DAVE:
Yes, I had a gentleman this is about a year ago who had reached a point prior to his surgery that he had become so depressed that the family took him to a psychiatrist prior to the surgery and he went to the psychiatrist for about two months and then his wife called and asked if I would counsel with him some more and I did and it was just a total turnaround for the man as far as his attitude and his feelings and everything else. What we have found and I think what Walter might have found also in his group the two biggest fears are the incontinence and impotence, and we work on that quite a bit.

ANDREW:
Now what did it do for you in going through this process and helping other people? How does it help you in going ahead everyday with your life as a cancer survivor?

DAVE:
Well, it's helped me that I try to live my life today as today is the last day. And get as much fulfillment and reach out to other people, help them when I can. I just find it very self-gratifying that I can do those things yet. As a matter of fact, I feel very strongly that projecting what you want to do in the future is a stimulus as far as keeping you going and keeping your thoughts in the right place.

ANDREW:
And how are you doing now, feeling now as a cancer survivor as far as any after effects of the treatment?

DAVE:
I was very, very fortunate - I had my radical prostectomy and then I had 33 days of radiation, and I had absolutely minor, almost nil effects in both cases. I came out of my incontinence in a matter of oh maybe three months, four months. I was fortunate enough I never had to wear a diaper but I did have to wear the pads.

ANDREW:
Now, getting off so easy if you will, as I guess your implying is not always what's in store for someone, but it sounds like now you're able to go on with your life.

DAVE:
Absolutely, enjoying all the grandchildren and the works.

ANDREW:
Good for you. Let's bring into the discussion Charles who joins us from California from San Juan Capistrano. Charles, I know you are 69 now and you had surgery for prostate cancer and you're married. Tell us how your wife has supported you as you went through the cancer, but especially now your wife and your doctors, as you go on about your life.

CHARLES:
Well, it was right from the beginning, my wife made a difference, as far as, well, you know how males are, right from the beginning when I was diagnosed with the cancer, the biopsy showed I definitely had it and it was in an advanced stage, and my wife wanted to make plans for the surgery and I said well, let's think about it. Let's talk about it, let's do this let's do that, in other words, delaying as much as possible but she didn't listen to me, she just went ahead and made an appointment at the Mayo Clinic and made the reservations on the plane and we were living in Virginia at the time and set it all up so that I was out there, had my operation and was back home again within ten days.

ANDREW:
Now what about since this cancer treatment is behind you, what role has she played in helping you?

CHARLES:
She's been very supportive every stage - actually I had a good recovery, incontinence was very little and I wasn't perhaps between two and three weeks before I was back to relative normalcy again. So that it was very good in that sense. She supported me in every sense and was concerned with my wellbeing and even when sometimes I wasn't. It was good, she was my support group, you might say.

ANDREW:
Now, Charles, often a concern for a man after prostate cancer treatment is impotence, so I would imagine that really having good open communication with your wife is really important.

CHARLES:
Oh, definitely, I think it's probably one of the most important things and that solved a lot of problems or possible problems that could have come up. And I tell you, I realize now that a lot of times, anticipation of problems or thinking we might have them coming up, sometimes does more damage than the actual problem itself, and as you say, talking it through and the open communication makes all the difference in the world.

ANDREW:
And she remains a tremendous support to you as you're a cancer survivor.

CHARLES:
Yes, yes, my family and friends and all made a big difference in my life and I think it was good for me to communicate to them. If I have anything that I do that may be is to my detriment is keeping things to myself. But I realize that the more you are outgoing in these problems that you might have with those who are nearest and dearest to you, the better that you are able to handle them.

ANDREW:
Let me bring in our fourth member of our group here, and that is Peter from Rheinbeck, NY. Skipping across the country from Charles in San Juan Capistrano in California. Peter, I understand that you are 70 and you had gone through radiation, which you completed about two years ago. And another thing I know about you is that you're a real believer in a prostate cancer patient or a man who becomes a prostate cancer survivor really seeking out information and looking out for what options are important to them and keeping abreast of things. Am I right?

PETER:
When I first heard I had prostate cancer the first thing we did was go to a bookstore and get David Bostwick's book, the American Cancer Society's book on prostate cancer and start there, and then read others, and it was after that that I talked to a urologist for the first time, who gave me very little information, really, and then read more books. I happened through the local library to get Michael Korda's book, "Man to Man", which some people hate, but I think was very humorous. In there in the dedication it talked about our local support group here, the Man to Man group in Poughkeepsie, which got me started there. And then my nurse from work told me about a second support group across the river, the Hudson river, so I've been active in two support groups, two Man to Man support groups and once in awhile attend two others. But when I need information, I've found that there's just so much controversy on this that I've gone back to some of the source documents and I have free entr&#eacute;e into the medical libraries of two of our local hospitals, and so I go back to source documents and see what was said there instead of abbreviated versions that people may put on the Internet.

ANDREW:
And you're an advocate for seeking out information continuing after someone has had prostate cancer treatment behind them?

PETER:
Well, I think I do it as an intellectual exercise and when I'm talking to someone, and there's some people that really don't want it. One of my peers who's a Ph.D. psychologist, when we finished up our radiation treatments, which were at Sloan Kettering, and I communicate with him by e-mail, he wanted nothing more to do to talk about cancer, we talk about any other kind of subject, so it varies from individual to individual and in fact, while we were there, there was a couple there at the same time, and when we started talking with the man's wife about different things, he just vacated the area and did not want to hear anything at that time. So you can't make a generality at all.

ANDREW:
I understand that you have a friendship that changed after your encouraged a friend to be tested for prostate cancer. Tell us about that.

PETER:
Yes, when I was first starting radiation, there was a business acquaintance I've known for years and he told me he apparently had a high PSA and I kept encouraging him to do more and to read books and so forth. Finally he let me know in very clear terms that I was being very pushy on this and he didn't want to hear anymore about it. It damaged our friendship, we are still cordial but not the friends we were before. So, again, you have to be careful about the recipients. I find that the people who attend the support groups are perhaps somewhat atypical of the population out there. You can't judge everyone by the men you see in support groups or the people you see in support groups.

ANDREW:
I have to ask you about that former friend, the man you were closer to before with the high PSA, do you know what's happened over time?

PETER:
As far as I know, things are still going on. You know, I've never had the symptoms and I don't think he's really had any symptoms either, and we all know that could go on the rest of his life but nothing has shown up that he's told me about.

ANDREW:
Peter, from your perspective what would you want gentlemen who are prostate cancer survivors to hear at least from your perspective that's worked for you as you go on with your life that could be of help to them?

PETER:
I think the main thing is not to start getting down and this is a dreaded disease that's going to take you, because we know from the statistics, most of us are going to live with it whether we got treatment or not, and if we get treatment, the odds are very much that we are going to live with it, and we're going to die from an automobile accident or a jealous husband shooting us, or whatever.

DAVID:
Peters' right on.

ANDREW:
Now who's that?

DAVE:
This is Dave in Dallas.

ANDREW:
Dave, so what's your view as you go on with your life?

DAVE:
Absolutely, I did the same thing that Peter did when I was first diagnosed, and this is a great feeling and Peter said it beautifully. Men turn their backs on it, they don't want to know, you can't talk to them, you can't encourage them, and when I counsel some of the men that have been diagnosed, most men that I have known, more than 50% of them are totally ignorant of their bodies. They don't know what's going on. I find it a terrible, terrible thing to work with to try to explain to somebody what their prostate is for, what their testicles are for, it's ridiculous the way some of these men handle themselves.

ANDREW:
But Dave, you'd agree what Peter was saying that some people are going to be open to discussion among prostate cancer survivors and there may be many others who don't and you have to just be resigned that there are some people who don't want to hear it.

DAVE:
It's true, it's true, I mean all I had to do to get someone, you know, not to turn their back on me but say let's forget it, I mean, I never bring the subject up again.

PETER:
Andrew this is Peter again. Dennis O'Hare the facilitator for the Poughkeepsie New York Man to Man group, I was the co-author of a book called "Support Group". But in there he tells when he was first diagnosed many years ago, that they lost many friends because he had prostate cancer. It's almost as if it was contagious, just by being near him or something else and it was very enlightening to me. I mean we've read about losing job opportunities and so forth but this was about losing friends and even relatives did not want to be friends any more with them. So if you ever get that book "Support Group" by Dennis O'Hare, you'll see some of that described in there.

ANDREW:
Charles, you had a comment?

CHARLES:
Even though you know quite a bit about your prostate and your body and so forth, as I said, the male makeup is such that you want to put off these things. You know, it's been recommended that the prostate be removed and you say well let's think about this. I too read quite a few books when I was first diagnosed and as if you all know, there's some contradictory information out there as far as treatment is concerned and that the possibilities and so forth, and you have to sift through it. Then again, you have to deal with your own personal feelings about it. There's a school of thought that says hey, let it sit and just wait and see what happens and the other says, go with it and get it over with go with it and get it out. So that was part of my problem, I just sort of sat on the fence until my wife pushed me over and took charge and made the reservations, and made the appointment at the Mayo Clinic. And I tell you, that was quite a place.

ANDREW:
What recommendations would you gentlemen make as to how someone maybe who's not so much a book reader as you? Like you Peter doing your research, somebody who wants to find out though how they can get active in their ongoing care or checkups related prostate cancer and sort of put themselves in control and not turn their backs on it. What's a good way to start?

PETER:
Andrew, I'll try to answer this. This is Peter again. The Man to Man groups we have here in the Hudson Valley of New York, the two of them, in both cases they concentrate more on the newly diagnosed man than they do on the ones now in later stages of it. Here's a man that's confused, he's been told, radical prostatectomy, get it out tomorrow, or go for radiation or go hormones. What we try to do in our group meetings is to say here are experiences, here's what happened to me and the other gentlemen here, and give them information. In both cases we have one on ones available or small groups available to try to help this newly diagnosed man get through this morass of contradictory recommendations.

DAVE:
Andrew, this is Dave in Dallas. Along with what Peter said, I would say 90% of our Man to Man meetings are survivors. They introduce one or two new men that might come along that the urologist might have suggested they come to the meeting, but 90% of our attendees are survivors. One other point I want to bring out, and this is on a personal basis, with all of the options available and all the decisions that have to be made as to the type of treatment you want, I think it boils down to a psychological factor in your own mind. I know it was in my case, I want the cancer out of my body and went for the radical. A lot of the men that I talk to feel very much the same way.

ANDREW:
Dave what do you talk about in these meetings? Particularly how specific do you get about very personal things, particularly impotence, maybe sex lives with partners, incontinence, one of you mentioned diapers earlier if that might be indicated, somebody post treatment. How much in detail do you get in these sessions?

DAVE:
Very much so. As a matter of fact the options available other than Viagra, and I don't know how much good that does with the person with the radical - the vacuum therapy, the implant therapy, all types. Our fellas are not ashamed to say I'm using this, I'm using that as a substitute for a normal erection. Though that might be a little reticent might come on out and sort of join the group and once in awhile we see a husband look at a wife, and maybe next time they are there, they are using something, too.

ANDREW:
Walter, how have things worked out for you post treatment?

WALTER:
Well, I feel absolutely wonderful. The incontinence is a thing of the far distant past. I'm perfectly normal in that respect. The impotence is a problem that never did go away.

ANDREW:
And how do you deal with that? Now refresh my memory - you're married.

WALTER:
Yes, I am.

ANDREW:
How have you dealt with that in your marriage and do you talk about it?

WALTER:
I didn't deal with it very well, personally, for awhile. I'm not going to be ashamed to say this. It made me feel like personally like I was less of a man if I wasn't able to perform in this manner. And I would take it out on myself more than anything else. But my wife is just 100% supportive of me and constantly reassures me that it absolutely makes no difference whatsoever, that our life is normal and the way it always has been except for that.

ANDREW:
Peter, you're so active in the support groups there is New York. Is that something you talk about with men as to how to open those lines of communication maybe in a new way in longstanding marriages to sort of men to voice feelings that maybe they've not had to talk about before?

PETER:
It's interesting that I said I primarily in two separate Man to Man groups and they handle things differently. In the one here in Duchess County in Poughkeepsie, they have a separate Man to Man and Side by Side group, in other words they separate the sexes there, because they felt when they founded it some nine years ago that the men were embarrassed to talk about some of these things. The other one I belong to, in Ulster County, they have everybody together there. And there was an interesting story, one night a lady spoke up and said, you all know the problem I have with my husband's impotence. Not any more! And he got so red. So they handle it differently depending on the group.

DAVE:
Andrew, if I may interject something here too. Sexual intercourse is only one way of showing affection toward your mate. You don't have to fall back or not show any kind of affection with a hug, a kiss, a touch, women being women and men being from Mars, those three little things mean an awful lot. You don't withdraw completely. But as I said, a hug, a kiss, a touch, sometimes in a lot of instances will satisfy and still have a feeling of closeness with each other.

ANDREW:
Are you aware, any of you gentlemen, as to some guidance that a man could read about or learn about as to how to have an intimate relationship, if perhaps impotence is part of the aftereffects of prostate cancer. To really, for a man to kind of open his eyes and see a wider relationship of intimacy with a partner? Any source of information or would it be simply bring that kind of discussion up in a support group?

DAVE:
This is Dave again. I guess I have to be fortunate in one regard, I have a son that's a doctor. He's a psychiatrist. You very seldom would think that you would talk with your child regarding intimacy and the subject came up with him and he forewarned me from a psychiatrist's point of view was the one that made the suggestions to me as far as the affection shown toward his mother. And not to withdraw, not to touch, not to be afraid to kiss. Whether or not there are books on it or seminars or lectures, I think if a man does what comes naturally like in the courting stages prior to his marriage, it means a lot of affection right there.

ANDREW:
Are there any special things that you do, any of you, to kind of show appreciation to your wives that may be different or more broad or anything new after you've gone through really a pretty significant situation in your life with a brush with cancer? Sounds like, Dave, you give hugs.

DAVE:
Yes, and things, flowers once in awhile, it doesn't have to be an anniversary or a birthday, just every day, something. A kiss goodnight when you go to bed. It means an awful lot with my wife and myself.

CHARLES:
This is Charles from San Juan. There's one other thing too, I think it is good. We all like to hear, not that we want credit, but when you're talking to others about your experience and you mentioned that your wife was as supportive as she was, what all she did and so forth and so on and how she helped you maybe get out of the blue funks that you might have once in a while. That was all along and right till today and when the subject comes up and talking to people, just mention how she was a support group for you. I think this is so, so important and they make you feel that they were really a part of your recovery from prostate cancer.

ANDREW:
Someone mentioned earlier the PSA test and I imagine all of you have continuing checkups over time. Does anybody get, I guess the word I'd use is sort of squirrelly or go through any bit of anxiety when you're going to get the results of that test? Or do you have certain ways you just say, "Oh, I'm going for my checkup, and most likely everything's fine" or what would you recommend? What's your own personal experience and how would you recommend to other men who are prostate cancer survivors as they go through the rest of their life with always wondering are there other, you know, is there another shoe that's going to drop, if you will?

DAVE:
Andrew, this is Dave. I have a PSA every year; my surgery was seven years ago so they've cut it down to an annual thing. I'm running, my PSA is zero. This came up in a discussion not too long ago with a round table we had at our Man to Man and we all pretty much agreed that once the PSA is over, it is still the thought of cancer goes into the back of the mind, in a very very small niche back there and it does not resurface until the following year when it's PSA time again. It does become foremost in the head, but during the year, as little as possible.

ANDREW:
And when that yearly checkup comes up, you're thinking about it a little, is it any more anxiety producing than that, or just a little more present in your head?

DAVE:
Just a little present in your head. At that time. But during the year, very little.

PETER:
I think that one thing that I've done is I've been more conscious of other kinds of cancer, for example, I read that colon cancer may follow along with prostate cancer so I'm more likely to have an exam there. Or the American Cancer Society gave us screen exam for skin cancer so you're more conscious that this is just one type of cancer that you might have so you look at all of them and just say, that's all part of life. But I would like to go back to an earlier question you asked. We went to seminar in Kaiser Permanente in San Diego and Robert Hitchcock was the speaker. He has a book called "Love, Sex and PSA". So he's talking about some of these family relationships and how some have been good. It's a thin book. But how some were good with him and some were very bad.

ANDREW:
Peter, when you go through screenings and checkups is that reassuring to you does it make you feel better, or do you worry about it when those checkups come out?

PETER:
I would say neither because I'm not really a worrier about these things and I guess I'll go back and sort of give a little of my history there. I was in Korea when I arrived in Pusan Harbor and heard the shelling, I figured I'd never return from there. And then I had kidney stones and I've had a descending dissected aortic aneurysm, and right now as you may hear from my wheezing, I'm, having breathing problems. These are all just parts of life and I don't worry about one more than the other. In fact, I don't really worry about them at all, it's just another thing along the way.

ANDREW:
So you're really a guy who takes life as it comes and tries to make the best of every day.

PETER:
Yeah, because if I'd been worrying I would have been worrying these many decades ever since I was in Korea.

ANDREW:
Walter, is that your attitude now as a prostate cancer survivor as you make the best of every day?

WALTER:
That's absolutely the way I live my life. I had the radical surgery less than two years ago and I live my life as if I never had cancer. I don't let it affect me, I don't talk about it and I don't think about it and the PSA test to me is just a blood test. I go and when it's done it's done and I've gotten good reports and I expect I always will. I started out in Korea, too as a matter of fact. I just don't worry about it and I think it makes my relationship with my wife and children and my friends a little easier, perhaps. No one ever has to be afraid of what they say. There's just no worry on my part. I don't worry even a little bit about it.

ANDREW:
So gentlemen, just to really kind of underscore main points for people who have dealt with this in the past, whether it's radiation or whether it is surgery or a combination of both and are now prostate cancer survivors, something when you think about from where you sit that you would want them to especially know as they go on with their life from your perspective. What would you say? I'll just sort of go around the room, but don't hesitate to chime in and echo what somebody else said. Peter, what about you?

PETER:
I think that what I'm doing right now is trying to help others who appear to be confused and who want help, and therefore I don't have it as a hobby as someone describes it, I don't think of it as a dreaded disease that I've got, I just think of it here's something where I've gained some knowledge see if I can't use it to help someone else.

ANDREW:
And you continue to keep you eye on information that is also useful I understand.

PETER:
Yeah, I hope that someone like Howard Sherrett or else Sloan Kettering, is going to come up with a vaccine, that was in Fortune magazine, or you know that we'll find new things in the future about this.

ANDREW:
Dave, how about for you, as you look forward for yourself, what advice would you give to some man who's listening and who is a prostate cancer survivor as to how do you think maybe things could work out for them. Whether it's attitude or relationship with a wife, or whatever.

DAVE:
I wholeheartedly agree with Walter, from what the other two gentlemen have so far spoken about Korea, I go back one more war. I believe I'm older than probably anybody on the panel this evening. Live your life as though it is just another event that has happened. Don't dwell, continue going. We do a lot of planning, we do a lot of travelling as though nothing has happened. We just continue, just going on and enjoying our life.

ANDREW:
It sounds like though, that in your case you found it rewarding to speak with others.

DAVE:
Oh yes, no question about it. I wholeheartedly agree with Peter, and I do a lot of reading with it and I'm on the computer with it also and of course as I said, my son keeps me abreast of so many things with it too and I like to impart that information wherever I can to alleviate whatever fears or anxieties another man might have.

ANDREW:
Charles, what about you, what's your perspective when you go on with your life as a prostate cancer survivor? And what do you want to say to others.

CHARLES:
Well I would say live one day at a time and make use of all the help that you have around and I'm hearing from the other gentlemen not only making use of the help but when you can be of help and encouragement to others. I have done that, not in an organized fashion, but a couple of other individuals through the last two or three years that I have come in contact with and we've talked about it and I've related to them my experience and how that we're living a normal life and as I said, living one day at a time and not trying to creating problems where there aren't any. I think it was just said it's a question of attitude. If your condition is such that there's not a problem there. I think that that is the way to approach it and you live a happy normal life. It's like this other gentleman has spoken of being in Korea. I was there too and we lost friends there. This is just another enemy that has been conquered and we go on with life. I appreciate each day more because of this.

ANDREW:
But I guess that reaching out to someone else who is in this same experience is helpful and all of you have found that

WALTER:
Yes.

ANDREW:
Walter, what about you? Some final thoughts about where you are as a cancer survivor?

WALTER:
What I like to do is quite often we have at our support group, we have a man or maybe two show up who have not had treatment yet, they've just been diagnosed, and these men, they're worried, they don't know what to expect, like we were, I guess. Didn't know what was going to happen to them, what was going to happen afterwards, didn't know which choice to make, radiation, surgery whatever. I like to talk to those men. I like to ease their minds if I can and let them know. For example in my case the surgery, I had the radical, the surgery in my case was absolutely easy. I could do the surgery again. That's no problem. The aftereffects we have to deal with, but so many men are afraid of the surgery, especially when they put the name or the word "radical" in front of it. They shouldn't be afraid of it. I guess it is radical, but if I don't know enough about it to be afraid of it and it was quite easy. Another thing our group does that I think is really good, is when one of these newly diagnosed men finally go for their treatment, whatever it is, surgery for example, when they come out of surgery, when they come out of the recovery room, the group is in the room to welcome them. I think that is extremely powerful.

ANDREW:
And I guess you feel really good about being a part of that.

WALTER:
Absolutely.

DAVE:
And you know, Andrew, for some reason or another, as Walter was just saying, with the newly diagnosed person coming into our Man to Man meetings, for some reason or another they seem to be more at ease and ask more questions of us than they do their own doctors. Of course we give them all the help we can, but I suppose because we've been through it and their doctor hasn't that so they have all these other questions they might be reluctant to ask the doctor but they will ask us.

ANDREW:
I want to thank all of you for participating today because there certainly may be men who, late at night or when no one else is around, will listen to our discussion and take great benefit from it. So I want to thank you all of you for participating. Peter, Dave, Charles, Walter, thank you all. For the American Cancer Society's Cancer Survivors Network and from our Healthtalk Interactive studio in Seattle, I'm Andrew Schorr.