NEAL:
Hello, and welcome to the American Cancer Society's Cancer Survivors Network, a service created by and for cancer survivors. I'm your discussion leader, Neal Sofian. Our guests today are men diagnosed with prostate cancer, who are under the age of 50 and who are still in treatment.

Before we get to our phone guests today, I'd like to introduce my cohost, Michael Samuelson. Michael is the chairman of the National Consumer Advisory Council of cancerfacts.com. Michael's also a breast cancer survivor, and I'm very glad he's here with us today. Michael, hello, and welcome.

MICHAEL:
Hi, Neal, thank you. Neal, as you said, today's focus is on prostate cancer, and we'll be talking to two gentlemen, both in treatment. First, I'd like to welcome Fred, from Olympia, Washington. Hi, Fred.

FRED:
Hi, how are you, Michael?

MICHAEL:
Fine, thank you. Fred, prostate cancer is one of those diseases that people often think of in terms of old men, if you will. Not somebody who is 50 or less than that. Fred, can you tell us a bit about your story.

FRED:
Sure, I'd be happy to. I was diagnosed at age 50, in 1991, and it was detected through a flight physical examination. I was a pilot, and he noticed an irregularity in the prostate size. That led me to go to a local urologist and we discovered that I did, indeed, have prostate cancer. It was quite traumatic.

MICHAEL:
Oh, absolutely. Fred, what stage were you when you were diagnosed?

FRED:
Well, when I was diagnosed, the cancer problem hadn't spread. Nonetheless, the Gleason score, which is taken from the pathology report, indicated that it was a rather aggressive form of cancer.

MICHAEL:
Well, as a survivor myself, I appreciate what you went through. And as a young man, there are even more issues associated with it. When it was presented to you, were there options presented, and if so, what were they?

FRED:
The physician did explain to me that there were some other options, and in retrospect I think I would have taken my time to really thoroughly investigate the other options for myself, especially in light of my own diagnostic situation. Had I been more informed, I may have chosen another option. I would urge men to be very careful in the beginning, to be sure that they understand fully what the ramifications of their diagnosis are, and also to put themselves in the hands of experts who deal with this quite often. I think it would alleviate a lot of suffering. It's hard enough to get diagnosed, but once you get some information, it becomes a little easier in light of your own situation.

MICHAEL:
When you say, look at alternatives before you move forward, how would you recommend somebody do that? What are the practical steps of going through that process?

FRED:
Well, today I'm happy to report that the situation is much better for men. Because when I was diagnosed, there weren't a lot of resources that men or their families could go to. I mean, it's not just a diagnosis for the man, it's also a diagnosis for the family. A lot of resources exist today on the Internet for a patient to thoroughly understand the kinds of treatments that are available, and where. And indeed, what diagnostic situation they may be in, which might lead them to make the best decision.

MICHAEL:
Fred, there are so many issues, in particular for men with prostate cancer, and when you're given a diagnosis of cancer, the diagnosis in itself can be very obviously upsetting. And there are so many decisions that have to be made. What went through your mind with regard to your family, your relationships with your kids, associations, your career?

FRED:
Well, I was quite devastated, you know, which goes without saying. Anyone would be. I was always sort of a macho-type pilot, you know, a Vietnam veteran, and of course I always thought that these things happened to other people and not me. Unfortunately, I was one of the very few who basically had a family breakup at that time. It was shortly afterwards, and these things can either bring a family closer together or it can split them up, and it was quite hard on my family situation. I lost a marriage as a result of it. But I would encourage people to take heart that that is usually not the case, most people become closer together rather than farther apart. The devastation of the disease would really force someone to really look at their relationship and appreciate more their family and their day to day living.

MICHAEL:
Is there some advice you would have, specifically based on the situation you went through, that you would give to other families? Advice that would help them get through this so they can stay together? Things that you didn't do that you in hindsight would have done?

FRED:
Well, I think that being open, and being willing to discuss how you are feeling with your partner would be one way to approach it. The diagnosis of prostate cancer is not the end of the world. There are many options. It's not a death sentence, in most cases. There are many, many options that a man has in terms of getting over the difficulties of this initial diagnostic phase. The thing I would urge people to do is sit down and let their feelings come out, and go through the stages that are so devastating in the beginning. But most of all, I would say, there's time. You don't have to rush to judgment on what kind of treatment you need right away. I would analyze all the options and talk about these with your partner, and approach it as a team. Don't be afraid to ask a doctor questions. If you find one who's short with you or gets rather demanding with you, then find a physician that's willing to work with you, which is half the battle right there.

MICHAEL:
Fred, I think that's so important and so valuable, and I really appreciate the fact that you're sharing this with us. I'm also a Vietnam-era veteran. The whole issue for me of dealing with breast cancer was one where, generally, you don't talk a lot about it. Prostate cancer certainly falls into that category for men, and we see a lot of men who will hold on and bottle it up. What kind of advice would you have regarding outside help? To perhaps facilitate their discussions, or to help them find information, to help them make wise decisions. Where can they go to get information?

FRED:
Well, the Internet, and there's a number of support groups that can be contacted. One of them is USTOO, Inc. Also, the American Cancer Society has done some very good things in providing resources for newly diagnosed patients. And I think these are resources that can be tapped into at any level across the nation.

NEAL:
So, are we seeing some progress out there? Are men changing? Is it getting better?

FRED:
Oh, it's much better than it was. Yes, like I said earlier, the resources that are available now were not available for the most part, when I was diagnosed. And this was only, what, 8 years ago now. There is a group called the Education Center for Prostate Cancer Patients, which I'm a cofounder of, there's another group called the Prostate Cancer Research Institute, which puts out a newsletter.

MICHAEL:
Well, it sounds like, Fred, that you took your initial position of being kind of reticent about talking about this, and the old macho thing, and I can respect that, and turned it into an activism role. Have you found that to be therapeutic, as well as supportive for others?

FRED:
I just did not want other men to have to go through the same kinds of things I went through. So yes, I helped to counsel with many patients and their families for several years, now, both on my own and under the auspices of other groups with which I've become involved, and it's been very helpful. That's usually what happens. The men that are diagnosed usually start finding out about it and of course they go through their own devastation, and somehow come to grips with it, and realize, okay, in the end, there is hope after a diagnosis. Then they find themselves helping other patients. That's the way we get through it. The only other thing I would say as an activist is that I wish it were going faster. But on the other hand, I have to remember that we've made giant strides and we need to keep working together with all the groups so that we can focus better, and make it easier for people's transition.

MICHAEL:
You've made a couple of comments about what you've gone through, and implied that there were some less than easy moments. Could you share some of the things that happened, so that perhaps others could know what they might expect and how they might experience it? And how they can make that experience different for themselves?

FRED:
Well, sure, I'd be happy to. For me, prostate cancer was a direct attack on my manhood, as you might imagine. It hits one right in the area where we men are really kind of reticent to talk about. But what I learned from that is that there is life after impotence. Because I was impotent after the surgery, and I was impotent as a result of the further treatments that I've had to undertake. But the thing that really was an amazing thing to me in talking with other patients and their families, and listening to them talk about how they went through this, the families were getting closer together. I think it forced me to think about what I really thought about the emotional level of a relationship with another person. And what I saw happening through this was that men and women were getting closer together because of this, which tells me that having an erection or not being able to have an erection is not the bottom line for lovemaking. Intimacy is the bottom line, and I think we all want that. The patients I've talked to have discovered this for themselves, and it's very heartening to see.

NEAL:
And that's a message we've heard in doing a number of these shows, that men into their 40s, into their 70s and 80s, have shared that exact same thing.

FRED:
Yes, that's exactly right. Quite refreshing, isn't it?

MICHAEL:
I'd like to bring on Taurus, from Alhambra Heights, California. And Taras, you're 47 years old, and you've been treating your cancer since 1997, is that right?

TARAS:
That's correct. I was diagnosed December 15, 1997. It was kind of an early Christmas present, and rather devastating. And listening to Fred here, it's kind of ironic that you got two guys here today, both of whose families fell apart as a result of the diagnosis. And I have a little bit different perspective on it from Fred, in that sometimes diagnoses like these, if we embrace the opportunity that it presents for us, will key us into the fact that healing needs to take place on all levels. Maybe relationships that were shaky to begin with finally shake out. In my situation I chose an alternative course of treatment, and my ex-wife felt that I was jeopardizing the family. I have five children, and she expected me, in her words, to lie down and take what was offered as the gold standard cure. And I had done enough research at that point to be very wary, as Fred is now.

MICHAEL:
Increasingly we hear men and women describe this as going from a myopic view of life to a very, very broad perspective, where their peripheral vision increases dramatically. Is that pretty much what you're describing in terms of not only your relationship with your spouse, but your career in other areas as well?

TARAS:
Yes, it does start as rather myopic and then it gets rather broad as you realize that the only way to heal is to be part of a healing structure. That means including other people who are also undergoing healing. And that healing starts by reaching out to whatever support group structure you have, and you identify it in a day-by-day process, I think. You look to your family and your family members, you look to support groups, you look to communities and virtual communities. And I believe the Internet has played a huge role in providing men with the kind of support that is most necessary, which is the willingness to discuss issues on an intimate level, no holds barred.

MICHAEL:
I think what Fred brought out earlier in terms of taking responsibility for your treatment is again something that we hear echoed all the time, and obviously can be applied to so many areas of life.

TARAS:
Well, I was blessed with the fact that I had been working with computers for 16 years, and reaching to the Internet was a natural progression for me. And I quickly found out that this is the most controversial disease which men face right now.

MICHAEL:
Taurus, can you go ahead and kind of expand on that? How is it controversial?

TARAS:
Controversial in that, in the beginning, I thought if you lined up 12 urologists and asked them their opinion that they would all be of the same opinion. And 12 radiologists, they would all be of the same opinion. And 12 radiation oncologists would be of the same opinion, and it is not so. You can get 12 urologists in the same room and they'll all have a differing opinion of how to treat your disease. It varies.

NEAL:
So you're saying there's this huge plethora of views and ideas and approaches from doctor to doctor, or even from site to site on the net, in terms of how people decide what's right and what's wrong, and what's the right way to approach that.

TARAS:
What I did was to continue researching on the Internet. I also founded a support group structure around myself.

MICHAEL:
Taras, I have a question for you. Not talking specifics regarding any particular kind of alternative treatment, but we know that given the far-reaching effect of the Internet, there's opportunity for all kinds of misinformation as well. It can come at a time when you're very vulnerable with regard to the information.

TARAS:
I found out in the last three years that educated patients survive, and they survive intact.

MICHAEL:
Well, that goes for all cancers, and it's wise to consider that and make sure that you are the one who is in control of your care. But doesn't it also have something to do with staging, depending upon where you are? If I was diagnosed at Stage 4, I'd be a little hesitant to wait three to six months before I did anything.

TARAS:
This is not something you get a chance to get a dress rehearsal at.

FRED:
In response to what Taras said, I do wholeheartedly agree with him, that a person shouldn't feel that they have to immediately act on this. They have some time. What's happening to you is going to affect you for the rest of your life, and you have time. That's the very bottom line, important thing I want to convey. You do have the time not to hit the panic button. I would recommend that people put themselves in the hands of experts. Put yourself in the hands of a physician who knows what they're talking about. And they are around. You may have to hunt, but there are resources where you can find out about that. It's getting better in terms of finding out physicians of excellence. Don't just expect to go around the corner and get good diagnostic information, because you want to know what's going on with your particular situation. And your particular situation may be far different from somebody else's. We have to do what's right for ourselves.

MICHAEL:
Taras, you're in a situation where you are a self-employed entrepreneur. You probably have those issues of insurance that are still with you. Any difficulty with procedures that you wanted to explore that perhaps your provider, who can go nameless, said no to?

TARAS:
I did have that situation. But I found that, while it's not easy, it is possible to provide your provider with an overwhelming amount of substantiation gleaned from the Internet. Physicians' reports, and scientific abstracts, that make your decision for diagnostic staging conducive to your choices for whatever it is you want to go forward. The insurance companies look at this, at how it's going to change your treatment decision. If your options remain open, then no one can really tell you how it's going to change it or affect it in the future.

MICHAEL:
What I'm hearing you say, again, is be your own advocate. Gather the information and present your own case for it. Fred, I'd like to ask you a question, and Taurus, think about this as well. You guys talked about family and the difficulties associated with diagnosis and treatment, and perhaps that it also had a way of bringing up to the surface issues that maybe had not been dealt with. Support is so important. You guys know this in terms of support groups, but also with your immediate friends and family. Guys don't like to talk about these things until after the fact. What advice do you have for somebody who's newly diagnosed, in terms of how to present this to their friends? And what kind of support should they solicit from their friends? Particularly their male friends.

FRED:
Well, I've never really been reticent about talking about my situation, and I think I attribute this possibly to my own spiritual aspirations over the years. But I would say, just be as open as you can. You have the right to talk about it or you have the right not to talk about it. There's really no right way to do it. I would encourage you to begin, though, by discussing it with the people you feel the closest to. Spread out from there, and eventually you'll reach a comfort level that's right for you. And I think that's what's important: what's right for you.

MICHAEL:
But say I'm a support person and tune into this show and I don't have prostate cancer, but my buddy was just diagnosed. I'm not sure what to do, because we've never really talked about these issues, and I'm not sure. What advice would you give to me, as somebody who does not have cancer, but wants to provide some kind of support? What can I do?

FRED:
Well, it depends on the relationship you're having with that individual, but I would certainly be forthright, and ask that person how they feel about it and try to get as close as I could to that person. Let them know that you're available as a support person. And maybe do the same with the family members. Sometimes in counseling people, and I've talked to thousands myself, over the years, the person I usually talk to first is the woman. So that's usually a toe in the door. It's, first of all, maybe getting close to that person or that significant other, depending on how they feel, and begin the dialog there. That can later grow into good support situations later on, as I've found.

MICHAEL:
So it sounds like it's important, no matter what, to not be silent. Don't be afraid to ask, "Do you want to talk about this?" Get involved.

FRED:
That's correct. And I also think, don't be an overhelper. I think a lot of people, you know, they want to help, but on the other hand, they hinder more than they help, because they become a burden when they become so aggressive with their wanting to help. That creates stress in the situation. We all need to sort of let each other see who we are, but be sure that we give people clear messages about how we want to be supportive to that person, should they ever need it.

MICHAEL:
Now, Taurus, you're in a little different situation. You have five kids. How did you talk to them about these issues when you were first diagnosed, in terms of sharing with them? And also, the other way, how could they help you? So it would be good to hear both directions. How do you talk to your kids, and how can you have your kids help you through this kind of a process?

TARAS:
I think the best way is to be honest. Part of that honesty is coming to terms with one's own fear, and fear grips you like nothing else post-diagnosis. The best way to get over that is to find someone else that you have something in common with. I'm not unique in that I've been diagnosed and I have five children. I've met hundreds of men in the same condition, and I met them in support groups. And while it was difficult to go to a support group, a couple times I've gone in to a cancer support group and been asked if I was looking for my father, who, ironically, just months ago, was diagnosed with prostate cancer himself. But the contact available in support group structures will reawaken a person's faith in humanity. While men typically don't like to talk about personal intimate issues, men do tend to come out of themselves when faced with their own lack of uniqueness. We're not unique in this respect.

MICHAEL:
Guys, I have to ask you both one question, and try to think of this in terms of a 10- to 15-second response, which I apologize for. But it's also important just in terms of encapsulating it. There are so many traumatic moments, there are so many sorrowful moments, there are so many challenging and frightening moments associated with cancer. But there are also some extremely positive spiritual awakenings, if you will. Both of you, and we'll start with Fred, what has been the most positive aspect of this experience for you?

FRED:
The most positive aspect, I think, is the reawakening of my own spiritual path. My diagnosis was a wakeup call, and I think maybe that's true for most diseases. When something's going on it's time to pay attention. The body will tell us about it if we ignore it. So it's been more of an opportunity, and in many ways my diagnosis has been a blessing. Not something that I would wish on anybody, of course, but on the other hand, it's been more of an opportunity and more of a chance for me to learn more about myself and about humanity.

MICHAEL:
Wonderful. Taurus, how about you?

TARAS:
I think my diagnosis has given me the opportunity to understand that the truest form of healing takes place on a level so far removed from DNA that most of us never really get the opportunity to glimpse it, were it not for this kind of a challenge in our lives. Along with healing groups.

NEAL:
That sounds like an excellent place to end the conversation, with that kind of a positive view. Michael, thanks for being with us again today, and assisting in this conversation. And I want to thank you, Fred and Taurus, for being part of the conversation today. I think you've added a lot. Hopefully, thousands of other men will hear this, and will gain some insights as to next steps for themselves. And for the American Cancer Society's Cancer Survivors Network, I'm Neal Sofian.