ANDREW:
Hello, and welcome to the American Cancer Society's Cancer Survivors' Network, the service created by and for cancer survivors. In Seattle, I'm your discussion leader, Andrew Schorr. Our topic: colon cancer in men between the age of 50 and 65. On the phone with us are two colon cancer survivors from across the country, men who are between 50 and 65 and are currently in treatment. Over the next few minutes, we'll discuss issues such as: developing and maintaining a positive attitude; breaking barriers to screening and early diagnosis; being your own advocate by gaining knowledge and also by using the Internet; dealing with changing insurance policy rules, and treatment decisions based on money; and building support through new organizations like the Colon Cancer Alliance. Well, let's begin. Joining us today is Richard from Amsterdam, New York. Richard, I know you're 65, you're married, and have four grown children. I think you were first treated for colon cancer back in 1997. Is that right?

RICHARD:
That's correct, Andrew.

ANDREW:
Since then, you've had surgery, chemo, two more surgeries for metastases, followed by more chemo. I know you're currently receiving treatments as part of a Memorial Sloan Kettering study. Is there more surgery scheduled for next month?

RICHARD:
Yes, there is, Andrew. I have been undergoing treatment as part of a study at Memorial Sloan Kettering under the supervision of Dr. Nancy Kemmeny. It seems that the combination of exoloplaten, which is a relatively new chemo being used in the United States, and CTT-11 has been rather effective. I had a CAT scan just recently and it seems that the tumors might be dead. That is the hope that the doctors have, and the hope that I certainly have.

ANDREW:
Well, as my dad would say, "From your lips to God's ear." You know I hope that that is true. I know that you are a founder and board member of something called the "Colon Cancer Alliance." What is so vital about people seeking support? What gap does this fill for colon cancer survivors who seek out organizations such as yours?

RICHARD:
Well, it's rather amazing, Andrew, that colon cancer is the second major killer of Americans next to lung cancer. And it is highly recognized as being on the radar screen of anybody in the United States. Last year, when I joined the ACOR colon list serve on the Internet, and began to dialog with a lot of other colon cancer patients across the country and their caregivers and survivors, we did not know of any national organization. I think it was in September of last year that there was a march against cancer being sponsored by some various groups, and being held in Washington DC. So, about a half dozen of our colon cancer list serve members decided to get together, and travel to Washington to support the cause. Once they got there they found that breast cancer, ovarian cancer, lung cancer, every cancer under the sun, had some kind of national organization that was advocating to support the patients and caregivers and such.

ANDREW:
And you didn't.

RICHARD:
And we didn't. It was absolutely astounding that there was not a national organization for supporting colon cancer victims.

ANDREW:
I just might interject that you used this term "ACOR" earlier and, for our listeners, ACOR is the Association of Cancer Online Resources. It is a Web site you can go to. Isn't it ACOR.org?

RICHARD:
Yes, it is.

ANDREW:
There are links to discussion groups and Web sites that are related to many different cancers. It sounds like you're now very active in the discussions on colon cancer.

RICHARD:
Yes. ACOR was founded by Giles Freedman, whose wife had breast cancer, I believe, and it is a tremendous resource for anybody who has cancer, or who wants to research information for friends or relatives who have cancer. I would strongly advise getting on your computer, and typing in ACOR.org. You'll be surprised at the resources that it leads you to.

ANDREW:
Let me get back to the point you were making that you found, when you went to Washington, DC, that there was no national discussion going on, really. Why do you think that colon cancer is so, if you will, in the closet?

RICHARD:
Simply because of where the colon cancer is. It's down in the nether regions of the human anatomy. and nobody wants to talk about the bowel system. It seems we can all talk about the stomach. After all, we have all kinds of commercials on television for antacids, and all other kinds of medications that make the tummy feel good. But nobody talks about what happens after everything leaves the stomach. Nobody wants to talk about feces or poop, or other words that relate to the waste products that every single living creature on the earth creates on a daily basis. There seems to be a taboo against talking about this type of activity.

ANDREW:
Is that a barrier to early detection? And did that maybe play a role in the advancement, unknown to you, of your own colon cancer?

RICHARD:
Absolutely.

ANDREW:
Tell us about that. Tell us about how colon cancer was moving on in your body, developing, and yet wasn't recognized by you, or maybe even by your doctors.

RICHARD:
Well, you have to step back and look at the fact that virtually no one, going back two or three years ago, was aware of colon cancer as a major killer of Americans. There's been no publishing, no advertising, no concerted effort by any group to bring this into focus. And I was just like any other middle-aged gentleman. I was recently retired and had no idea that colon cancer even existed. When I was about 60 years old, I was a major contributor to the Red Cross for rare blood program. I gave blood every two weeks on a regular basis for about 12-13 years. I never had any problem whatsoever until one day, eight years ago, the nurse told me that I had failed the test for iron deficiency and that I should see my doctor. She said I was anemic, and I couldn't possibly imagine why I should be anemic all of a sudden. But it did not strike me as being a matter of great importance.

ANDREW:
You felt okay.

RICHARD:
I felt fine. I had no symptoms whatsoever, except that I was anemic. I consulted my primary physician and he gave me a FOBT test. In fact, he gave me two, and they were both negative.

ANDREW:
What does that mean?

RICHARD:
Fecal Occult Blood Test.

ANDREW:
The one you take home? It's a little smear of stool, and they are looking for blood?

RICHARD:
They look for blood in the feces sample that you smear on this card. Then you fold it up, and send it off back to the laboratory or to doctor.

ANDREW:
Were they positive or negative?

RICHARD:
They were negative, and I have since then had about 20 FOBT. They've always been negative, and what I found out since then is that, when you have a tumor in the cecum or the ascending colon, any blood that is generated by that activity is usually absorbed by the transverse and descending colon before it leaves the body.

ANDREW:
That's a new one on me. I think that if people know a little bit about colon cancer, then maybe if they have some kind of annual physical, maybe they have those little screening tests they take home, and they think that if that's negative, they're home free. And what you're saying is, in your case, you were not.

RICHARD:
Absolutely not. There has been a study by the NCI. I believe it took in something like 20,000 people over a five-year period. It was to determine how effective FOBT testing was. And they feel that FOBT testing on a regular yearly basis, by all citizens over 50 years old, will result in a one-third reduction of death from colon cancer, which is wonderful.

ANDREW:
So, Richard, what happened to you? There's your primary care doctor. Is he thinking everything's fine?

RICHARD:
Yes, the FOBT's were negative, so he just gave me a bottle of iron pills and said, "Take these and you'll feel better. It'll get rid of the anemia." And it did. I went back to donating blood and then three years, five years passed by, and all of a sudden I became anemic again. I began to have blocked bowels symptoms. I was doing an awful lot of vomiting and I was absolutely miserable most nights after having dinner, terribly sick.

ANDREW:
How long did it take you to go back to the doctor?

RICHARD:
I believe I suffered about a week, wrapped around the toilet bowl every night, until I decided I couldn't take this anymore. My wife arranged for me to see our family physician, and we began the exploration of various tests. I had the upper lower GI, and an endoscopy. I had a double contrast barium enema, and the double contrast barium enema showed that there was a shadow in my cecum. And it was rather interesting. Here is a professional radiologist who examined the x-rays and he said that he felt it was impacted fecal material because tumors, cancers, do not grow in the cecum. And he was wrong. I had a big tumor in my cecum, which is the area where the appendix is attached to the small intestine and the large intestine.

ANDREW:
Richard, let me ask you. Am I right in saying that the type of cancer you've had in your GI system is unusual?

RICHARD:
It is not. At one time, most of the colon cancers would appear in the descending colon, in the first third of the entire colon. In the last 10, 15, 20 years, there seems to be a large increase in the number of tumors that are found in the transverse colon, and in the ascending colon. The latest percentages, which I believe are fairly accurate, are that about 55 to 60 percent of the tumors are in the descending colon, into the anus and rectum; and 40 to 45 percent are in the transverse and ascending colon.

ANDREW:
So, Richard, many of the people who will be listening to our discussion have already been diagnosed with colon cancer, but of course they want to make sure it doesn't happen to their friends and family. I guess what I'm getting from you is that you have to be a really strong advocate. And yes, there needs to be greater awareness of colon cancer in all its ramifications, but that people really have to look out for themselves.

RICHARD:
This is one thing Andrew, that we learned very, very quickly. When you get colon cancer, you must be your own advocate. You must learn as much as you can about your disease, and you must be very aggressive in the pursuit of treatment. What is needed is a very strong, long-lasting, widespread publicity campaign to alert people as to the dangers of colon cancer. And to make them aware that there are various types of screening procedures that are available to them. I will speak right up now, and say that there are five different types of exams. You have the digital finger examination; the FOBT; the sigmoidoscopy, which examines the first third of the descending colon; the double barium contrast enema; and the colonoscopy.

ANDREW:
So, your view for the public would be that it's kind of like demanding your favorite TV show. It's demanding, "I want my colonoscopy."

RICHARD:
Exactly. As a member of the Colon Cancer Alliance, I must make it clear that I cannot advocate that one particular procedure is better than another. We can't take an official position. The American Cancer Society recommends the various types of screenings, but doesn't choose a particular favorite. But as an individual who has been through the mill, and who has talked to literally hundreds, if not thousands, of colon cancer patients and survivors and caregivers; colonoscopy is the best way to go.

ANDREW:
I want to bring in the other member of our discussion group, and that is Pete from Standish, Maine. Pete, I know you're 59, and were first diagnosed back in 1997 with colon cancer. Tell me if I'm right...I think you had surgery, and then chemo, and there may be more surgery in the near future. What will that surgery be for?

PETE:
At first diagnosis, I had the surgery, and then they turned me over to an oncologist. That oncologist basically told me the bad things about chemo. He didn't tell me about the good things when I asked him what it might do for me, such as extending my life. I was stage four, and he had given me about 18 months to live at the time of diagnosis.

ANDREW:
Which was how long ago?

PETE:
Well, actually, about 24 months ago.

ANDREW:
So you beat his prediction.

PETE:
I have beat his prediction because of the Internet. He actually said, "You better go home and just have fun, have a good time, get in your motor home, go to Florida and enjoy yourself."

ANDREW:
No need to be put through the toxic effects of chemo, because he didn't think it would help you live longer.

PETE:
Well, I asked him to be frank with me. "Tell me exactly," I said. "Don't try to hide anything. I want to know the real truth." And he said, "Well, it may extend your life ninety days." When he told me all the bad things about chemo, I said, "Hey, I'd rather have quality of life than quantity. No chemo." Well, I did myself a favor. I bought myself a laptop, went off to Florida and, surfing through the Internet, I happened across this ACOR list serve.

ANDREW:
The one that Richard was talking about.

PETE:
Yes. That Richard was talking about. At that time there were close to 600 members worldwide. Actually, most of them are Americans and Canadians. I talked to a few of these people, or I chatted with them on the Internet, and I found there were survivors who had been surviving four and five years with stage four cancer. Who had had chemo. And most of those people said, "Pete, you need to get a second opinion." So, again with the Internet, I typed in "Hospital." It tells you all the hospitals in the country, and it lists what they do, and what they do most of. I found H. Lee Moffett Cancer Center in Tampa, Florida, and I went there for a second opinion.

ANDREW:
And you were down in Florida at the time even though your home is in Maine?

PETE:
That's correct. I go down there for the winter in the motor home. So, I made the appointment with the cancer center. This oncologist was a really nice man. He put me at ease, and spent about three hours with me. I don't think I've ever had a doctor spend that much time with me. He told me that he's found in his experience, that if a person has a chest implant, a port implanted in their chest, that they could take chemo in two-hour drips every two weeks, and that it does help. So I elected to do it. But I had been eight months without any chemo when I started the chemo. There was amazement at my CEA, a kind of a blood test they can check. It's an indicator, kind of a trend indicator. My CEA had gone from 14 to over a hundred. By taking chemo, that CEA decreased down to a level of 24, and my tumors were actually shrinking.

ANDREW:
How do you feel today?

PETE:
Well, I've been off chemo. My last oncologist's appointment was the 26th of August. I've been on two types of chemo. The most recent is no longer effective. The tumors growing in your colon are exposed to such strong materials that they are very tough to kill. They become immune to any medicine that mankind has today. So, mine has become immune to the treatment. So, I had told this man, and he kind of threw his hands in the air and said, "Well, guy, time to go home and die." And I said, "I'm feeling too good. People tell me that I look good. You yourself predicted I'd be dead, and you know, I could outrun you today." And I said, "I want to go, before I just give up, I'd like to go to one of the world's best hospitals. Either MSK in New York or, I think there's one in Texas, MD Anderson." And I mentioned, because of the Internet and these caregivers and other cancer patients, that I'd learned the name of an oncologist, Nancy Kemmeny.

ANDREW:
Nancy Kemmeny who's in New York, who Richard just mentioned.

PETE:
Exactly. Richard, I think, is under her care. And there's a doctor Fong, who is, I think, definitely one of the world's leading liver surgeons.

ANDREW:
So, who'd you go see?

PETE:
Well, I mentioned these names, and my oncologist said, "Well, I went to school with Nancy. I'll call her today." So I went home, expecting that, well, maybe in a couple of months I might get to see her. I have an appointment on the 28th of this month.

ANDREW:
So, there could be surgery in your future?

PETE:
Exactly. That's what I'm hoping for.

ANDREW:
So, Pete, let me ask you. You heard what Richard was saying. For men who are listening, who are in treatment for colon cancer, Richard talked about speaking up for yourself. And it sounds like you got your laptop, it wasn't something you were used to, but you sought out information. And you found that you really needed to take a stand and be very proactive for yourself. From what you've described, that seems to have been paying off for you along the way.

PETE:
It has. In fact, I look back on it, and if I hadn't taken the initiative, and gotten on the Internet, and done some research to find out about this, I probably wouldn't have taken chemo, and maybe I would be dead by today. So, I really give credit to the ACOR list serve, the colon list.

ANDREW:
Do you have some frustration, or maybe anger? I understand you're a pilot, and as a pilot - I have my pilot's license, too - you keep current, you get physicals from time to time. Do you feel that maybe there were some indications, that could have been picked up, that you had colon cancer? And that they weren't discovered, and that maybe it kind of sold you down the river? Or do you feel that way at all?

PETE:
Well, Andrew, it's surprising you asked that question, because I am quite bitter. You know, I've been a licensed pilot and aircraft owner since the fifties. I started taking physicals in 1957, initially first class, every six months. And from '57 through my last one, which was in '97, actually just before this diagnosis of colon cancer, I've been paying $140 for a physical. I have to search out a doctor who's an FAA-examiner, one that's approved by the FAA. And not one of those doctors ever mentioned colon cancer to me. I spent a lot of money, and I really put my life in their hands. I thought, "If there's anything wrong with me, they'd certainly find it." But I had no symptoms.

ANDREW:
Richard was talking about how that can happen, too, and what we're learning about it. Let me ask you about insurance. I know you're going through a lot of care, and I imagine the doctors that each of you are seeing are not inexpensive. Pete, have you had any insurance battles at all?

PETE:
Well, I think my situation is a little unusual. When I was diagnosed with colon cancer, I had a small business. I actually had one in Yakima, Washington, for about 12 years. I had a group policy, and it covered me no matter where I went. I had bought a home in Florida, so I spent a lot of time in Florida, and a lot of time in Maine, where my family is from, and I always returned to Yakima. That was basically my home. I had the opportunity to sell the store. My folks were sick and dying, and I wanted to come back to Maine, and Florida. I looked into insurance. My wife had a preexisting condition, so we couldn't transfer. They wouldn't take her. So, I had to keep that business in order to provide insurance for her and for myself.

Well, I waited for the Kennedy-Kassebaum bill to pass. It became law, this portability of health insurance. You could move from one job to the other, and take your insurance, and your 401-K or whatever with you. I ran into a snag in Florida. I waited until that bill had passed and become law in all states in America. When I sold my business, I gave up my group policy. Florida refused to insure us. They said, "You know, we found a loophole in that bill." So then I got on the Internet again. Thanks to the computer and modern technology, I contacted Bob Graham, the Senator in Florida. I explained the situation, and he put me in touch with the insurance commissioner of Florida. Then I battled with Blue Cross, and it went on in excess of six months before they did finally insure me.

ANDREW:
Richard, have you encountered that, too, in communicating with other colon cancer survivors around the country? There are battles to be fought, and you have to be proactive in those, as well as being proactive with the health care providers?

RICHARD:
Absolutely, Andrew. Fortunately, I have excellent insurance. I was employed by the state of New York for a number of years, and my coverage is very, very good. I've had no problems whatsoever. But, again, there are many people who have complained about battles with the HMOs and insurance companies. They have refused to recognize preexisting conditions, or they refuse to pay for specific tests because they consider them experimental, even though they've been done for a number of years. There's a whole host of insurance related problems. That leaves some of our cancer survivors and caregivers in grievous financial limbo.

ANDREW:
Richard, you heard Pete say that he contacted Senator Graham from Florida. What are other approaches to this? There's your senator, or congressman, or the governmental law that Pete was talking about. Let's say you have a policy, or that you're in an HMO and you're being denied certain care. What have you found are the strategies for trying to get some satisfaction?

RICHARD:
The first thing that any person must do when dealing with an insurance company or HMO, is to go through the process within the company. There is an appeal process. Unfortunately, in the United States at the present time, the HMOs are the ones that you must appeal to, and they have their own appeal board. There's no such thing as an independent outside appeal system, and this needs to be changed. But, in any event, you do have to go through the appeals system, and fortunately, more often than not, the appeal board within the HMO will rule in favor of the patient. There seems to be an internal strategy that, if you don't appeal, then they win. If you do appeal, they give in.

ANDREW:
So, you've got to be the squeaky wheel.

RICHARD:
You've got to be the squeaky wheel. If they are adamant and refuse to accede to your needs, then the next step is to contact your state insurance commissioner. And if that fails, then you go to the media. The combination of procedures usually results in a positive finding for the caregiver and the patient.

ANDREW:
Let me shift over to some emotional issues. So, there you are, both of you are in treatment, or certainly viewing yourself as a current patient. And, I think, Pete, you're married, right?

PETE:
I am married, yes.

ANDREW:
So both of you are married. How do you deal with this emotionally, the not knowing? Pete, for you it's literally not knowing whether you are on borrowed time or not, or what treatment may lie ahead. And Richard, you're dealing with the course of treatment you've been through. How do you get through each day, and what's your view of life? How do you manage your relationships with people who love you and worry about you? Pete, do you want to start?

PETE:
Well, I'd have to say that it's a roller coaster ride. When I was first diagnosed, this man stood in front of me and told me and my wife that I was dying. There was nothing that could be done, there was no treatment. There was treatment, but it was not a cure of this particular kind of cancer. That's a shock in itself, and it took me a while to get over that. Then you digest that, and then discuss it with your wife, and then you start making plans. Immediately, the first thing that came to my mind was, "Sell the business, let's get that taken care of while I'm still here." Because, if he said eighteen months, it could be six months. So I kind of panicked, and I started giving things away. I started selling things, getting my will in order, getting everything - my guns and rifles and things - that I wanted to pass on to my boys. I have four sons. I made sure that, you know, I dished everything out.

And then, I went on to kind of analyze, "What's going to get me through this, and what do I do?" I'd be driving down the road by myself in the car, and I'd break out crying, for no reason at all. Because certain things, maybe a song on the radio would come on, and it would take my memory back several years ago. It would just cause me to become totally emotional. Other than that, I've tried to keep a positive attitude. I accept my diagnosis. I know that I can't change it, and I know that doctors aren't God. I just intend to keep on living. I try very hard to keep on keeping on. Out of necessity, I have to be near a toilet. That's one of the things. I have to watch my diet. There are a lot of things that I can do. I missed my oldest son's wedding. He lives in Everett, Washington. He had a wedding a year ago August. I was about to fly out there, when I had a blockage and ended up in the hospital. So it's a roller coaster ride. Some days are good, some are not so good.

ANDREW:
So, you wake up in the morning, not knowing what the day is going to be like. What's your attitude? Are you just thankful that there's yet another day?

PETE:
I wake up every morning. I've been a positive person all my life, and any job I've ever had, I've always woken up in the morning and said, "Boy, this is a great day." I just looked forward to the day, and the work, and my job. Now, I wake up and say, "Hey, I made it through another day!" And I thank God that I am awake. I just try to take it sometimes an hour at a time. Sometimes less than an hour at a time. Because you really don't know.

ANDREW:
I can hear your positive attitude in your voice. You mentioned your four boys, and your wife. They must worry about you. That would be very natural. So how do you communicate with them?

PETE:
Well, in my situation, my wife is here. But, because I've traveled and kind of been a gypsy all my life - I've spent time in Alaska, Washington, California, all over the United States - my four boys all ended up in the airline industry, and they are scattered across America. One is in Texas, one's in Oklahoma, one's in Everett, Washington, and one's in Indianapolis, Indiana. So I don't get to see them very often. But we all have computers and, through the Internet, we talk frequently.

ANDREW:
And with your wife, just in your conversations with her, how do you carry on when the future is uncertain?

PETE:
It's tough. I think sometimes it may be tougher for the caregiver, or the wife or relative, than it is for the patient. The patient, at least in my case, I've come to grips with it. I don't like it. I didn't choose it. I wish I didn't have it, but I don't have a choice. So I just have to accept it. I'm not a quitter. I'll fight it to the last breath, and I'll take any treatment. In fact, I would travel around the world to get treatment. So you just have to keep a positive attitude, and just keep on keeping on.

ANDREW:
Do you and your wife talk about it frankly?

PETE:
We do, and it's tough on her. And sometimes it's tough on me when I realize that, "Gosh, this trip to New York at the end of the month. I could go in there and, if I'm lucky, I could have surgery." And you don't know. It's a serious liver surgery. My liver, last I knew, in May when I came back from Florida, 15 percent of my liver was affected. And it's in both lobes, which makes surgery...in fact initially they said, because it was in both lobes, they could not do surgery. But my approach to Dr. Fong and Dr. Nancy Kemmeny is going to be, "Hey, I don't care, I've got nothing to lose. You'll be doing me a favor by operating."

ANDREW:
Even if you may go into the operating room and not come out?

PETE:
I'm prepared for that.

ANDREW:
Richard, these are very emotional things we're talking about. You've been going through treatment in your own family. How have you come to terms with it, and how do you communicate with others? Are you as positive as Pete? You're doing okay, and you really just need to work on communicating with others, and help them understand that?

RICHARD:
Well, I would say that I haven't had the problems of the deep emotional turmoil that he's had. I've never suffered any deep emotional trauma because of colon cancer. When I was diagnosed, of course it was a shock, and I sat with my wife and we talked about the possibilities. I've always been very open with her and she has with me. We haven't pulled any punches, we've talked very frankly. We all understand the possible ramifications of the problem continuing and getting worse, but we've dealt with it. We've hugged each other, we've shed a few tears, and we've gone past that to a large degree. As far as my own personal attitude is concerned, I can't say that I am a religious person as such, but I do have a fair depth of spirituality. I believe in a very neutral God, and His will is to be done on earth, and we have to live with whatever is handed to us.

My feeling is is that this particular bad situation has been put on my plate. I will live with it, and I will be as positive as I can, and I will seek every avenue to effect a cure or a remission. And I will, as Pete, I will not give up. I will fight to the very last breath. I reviewed my life quite thoroughly shortly after my diagnosis. Like most people I have had my ups and downs, and my troubles and my trauma, and very bad financial times and emotional times through my life. But there have been so many wonderful things. In my review of my life I have come to the conclusion that I have been given a much better life than I ever possibly imagined when I was young. I have been blessed with a wonderful family, a lovely caring wife and, much to my surprise, after my diagnosis, I had friends and relatives and caring people coming out of the woodwork, giving me love and emotional support. This has continued right up until this particular time. My feeling is that, if I have to depart this earth, I will go with a smile on my face because I have been truly blessed.

ANDREW:
Is it that vision, Richard, of this blessing you've had, that keeps you positive on the day by day basis?

RICHARD:
To a large degree, yes. Because there's certainly no reason I should not continue to be blessed on this earth, to continue to enjoy the fruits of what life has given me. I also am, as Pete is, active in the CCA. Part of my mission now is to prevent other people, if possible, from going through the same pain, and fear, and trauma, and misery that Pete and I are suffering...along with thousands of other colon cancer patients.

ANDREW:
Let's talk about fear for a minute. You gentlemen have come to terms with it through your activities on the Internet, and your communication within your own families, and through time spent in reflection. It sounds like you've made tremendous strides. There will be men listening to this who are in treatment, maybe somebody even in the hospital, who are not there yet. What would you say to them to help get them out of their funk, if you will, or to get them past fearing that they've been given a death sentence, or at least an uncertain future? They don't know what lies ahead, and may have a feeling of hopelessness, or may feel that all is lost, or that they're damaged goods.

RICHARD:
First, we all have to recognize that, "Life is a death sentence." We are all going to die. Nobody gets out of this world alive.

ANDREW:
There's a meter running.

RICHARD:
Exactly. So, none of us knows when the little flag is going to go up and say, "Ding!" We just have to live each day at a time. As Pete says, we put our feet on the floor. You wake up in the morning, you stand up, and you thank God for another day to share your life with your friends and loved ones. So, there is no magic bullet to bring somebody out of a depression or a feeling of fear or loss. But you do have to look at your life. You have to examine your motivation. You have to understand that this is a trial period that we all go through in one way or another, to one degree or another. Some suffer a quick death, as with a heart attack. Others have long lingering deaths, as with multiple sclerosis. Colon cancer is just one of the many ways that we have to shuffle off this mortal coil.

ANDREW:
But people do live with this disease, and live with it sometimes many, many years in their past.

RICHARD:
They do, yes. This, again, is a situation that we all have to accept and recognize. That, even if you are lucky enough to go into remission, there is always that underlying fear that it might come back.

ANDREW:
Pete, I was going to ask you. Has reaching out to others on the Internet made a real difference for you?

PETE:
Oh, absolutely. It has for me, Andrew. I think it has made a big difference. I've been my own advocate. I learned that early on. I shouldn't say this probably, but I've had kind of a mistrust for doctors, through raising four kids, and seeing my wife with open heart surgery, and whatever. Plus, some of the diagnoses and some of the stories I read...but, I guess if I was going to look at another patient going through this, I would make sure that they had their family members checked. And again, as Richard has said, colonoscopy is the way to do it, not some of these other tests. I've had those other tests and mine were negative when, actually, I was bleeding. And they came out negative with that FOBT test.

I say, "Keep a positive attitude." I try to help others. Since 1997, I have been the direct cause of about 27 colonoscopies, including my brother, my sister, and all four sons.And three in my family, and four others outside of my family, had pre-cancerous polyps removed. So we need to get the word out. The word's out about breast cancer, the word's out about AIDS. We've spent a lot of money on those. But colon cancer, as Richard said earlier, because of the nature of it, doesn't get much press. It's the number two killer, and oftentimes there are actually no symptoms. So people need to be made aware that this is part of your body, and it can kill you! So you need to be talking to your doctor.

ANDREW:
So, for each of you, even as you deal with your own current conditions and your own worries, or just thoughts about what could happen to you, it sounds like it's been very positive for you to speak out with this message, as Pete just articulated so well. And your message is that it doesn't have to come to an advanced stage like for you, Pete, or to all the treatment that you've gone through, Richard. It doesn't have to come to that if family members, and friends, and the public in general - with the help of healthcare providers - really look out for this disease at a very early stage, or at a pre-cancerous stage.

RICHARD:
Well, Andrew, if there was a nationwide screening of all people at risk, generally men and women over 50 years of age - but we don't really agree with that either, it should be earlier, it should be about 40 years of age - if there is wide spread screening of that population, there could be a 90 percent drop in colon cancer cases. It is one of the most treatable and preventable diseases there is.

ANDREW:
But for you gentlemen, if I could speak frankly, the train has left the station. You didn't have the benefit, should that one day happen, of that sort of early screening. It didn't happen for you. Pete said he was bitter, but you get through that, and I think it's remarkable that you do. I imagine there are other people who are involved in your organization who, even while they go through treatment and the future could be unclear, take it upon themselves to speak out so ardently about this. Where do you get the energy to do that?

PETE:
From within. You know, you have a lot of time to think. I think of what I can do for mankind, and I really believe that I saved the life of my oldest son. I saved the life of my brother, and my sister, and obviously a few others, just because I was adamant, "Get a colonoscopy." And so I continue. It's almost like preaching the gospel. I'm out there. During that March of '98, in Washington DC, the members of the cancer list had t-shirts that said "semi-colon" on them. I wear it and go into a mall, and you'd be surprised at the looks I get. When I see people looking at me for an extended amount of time, I'll walk over to them and start up a conversation. It probably helps me get through it.

ANDREW:
And Richard, what's your view on it? What keeps you going and speaking out?

RICHARD:
Well, it certainly would be ridiculously selfish of me if I didn't try to prevent other people from falling into the same situation as mine. We all are our brother's keeper, and this is part of the task and duties that we all should participate in to try to help our fellow man. And I really want to make a particular point, here, Andrew. On the Internet we have a chat room where discussions are held on various aspects of colon cancer. Treatments and the emotional issues and so on. There is one chat subject that is always very interesting, and that is the positive attributes of having colon cancer. And there are a lot of positive attributes.

ANDREW:
What are they?

RICHARD:
For instance, you appreciate life, day by day, so much more. You develop a much more patient attitude toward everyone and everything. You learn to express love so much easier, and to accept love given to you from other people so much easier. You learn to know that you are here to help as much as possible. So, one of the aspects that I perceive so clearly on the Internet, is that all these hundreds of people scattered right across our great country, and Canada, and across the world are participating, and sharing our knowledge, and spreading the word that this is a preventable disease. We are coming together to let the world know that something can be done. All we have to do is raise our voices together and we will accomplish this goal. And being part of this is a wonderful emotional lift for me, knowing that I am one of so many who are making a positive change to a terrible condition that we have in our world. It gives me strength. Every day it gives me strength, and it gives me a reason to live.

ANDREW:
Well, there are a lot of beautiful thoughts there, Richard.

ANDREW:
For people listening who are not familiar with computers, let me state how people can participate. Pete and Richard, stop me if I don't get it right. As Richard mentioned at the outset, there is a Web site, ACOR.org. On that site, there is a place to click to go to "colon cancer discussions " which Richard and Pete and hundreds of others around the world participate in. You can submit comments and questions to others, and either receive e-mails back throughout the day, or you can select a digest form where it deposits all these discussions to your e-mail address on a nightly basis. Is that right, Richard?

RICHARD:
That's correct.

ANDREW:
If you don't have a computer at home, most public libraries now have a free service where you can access the Internet in this way. And there are other resources depending upon where you live. So, fortunately, at least in the US, we're getting to the point where most people, if they try, can find a friend, a family member, or the public library, or some other public resource that can help them.

RICHARD:
On that particular point, Andrew, we know there are many people out there who don't have access to the Internet, or are not technologically able. We are reaching out to these people by putting pamphlets and symptom cards in as many doctors' offices and cancer centers that we are able to reach. These cards and pamphlets will direct a person who's interested to call a toll-free number, and they'll be put in contact with a buddy.

ANDREW:
What's the number?

RICHARD:
I don't have it right off the bat. I could get it while you're chatting.

ANDREW:
Yes, why don't you look that up. Pete, I want to ask you a question while Richard looks for the number. There will be people listening who'll say, "I just can't do it. I don't want to know. This is all happening to me, and I'm a victim, and I'm going down the rapids. There's nothing I can do, so what's the point of talking to others? What's the point of getting on the Internet or any of these other activities?" What would you say to them?

PETE:
I think it's maybe like a lot of times in life, maybe like a death in the family. You know, people go through various stages, and one of the earliest stages is denial. They are in denial and they really haven't accepted. Then, even without doing anything, that stage passes automatically. I don't think a person can stay in denial forever. They'll finally get out of denial, they'll accept it. They go from one stage to another. It's only human instinct, survival. There's a strong will to survive. I can recall the first day the oncologist told me I was going to die. I said, out loud in fact, "Well, I'm just going to live a good life, and when it really gets bad, I'll go to Kevorkian." And that was my initial reaction. Now in talking to me, you can tell I'm not a Kevorkian candidate. I want to live. And I think the longer I go on, the more I want to live.

ANDREW:
Richard, I understand that there is a phone number people can call who are dealing with colon cancer. They can be matched with a buddy, and get other information, and make a connection with somebody else who's knowledgeable about colon cancer. What is that number?

RICHARD:
That telephone number is (212) 439-1101. Call that number. You'll be put in touch with a survivor. You will be matched with a buddy, if necessary, to respond to you with emotional support, and guidance regarding where you can get the best medical knowledge that you need to help you in your treatment.

ANDREW:
Tell us that number one more time.

RICHARD:
(212) 439-1101.

ANDREW:
That's in New York City on East Coast time. And of course on the Internet, you can leave a question or comment 24 hours a day.

RICHARD:
We have an e-mail address. It's info@ccalliance.org. That is an e-mail address that you can use to pose any question or comment, and to ask for information. And you'll get a response. We also, of course, have the colon cancer Web page, which is chock full of all kinds of information, emotional support, and data relating to the latest treatments in colon cancer. And that is www.ccalliance.org.

ANDREW:
Gentleman, just as we wrap up, what final thoughts do you want to leave for a man in your age group, fifties to mid-sixties, who is currently dealing with colon cancer and colon cancer treatment? What do you want them to particularly remember from our discussion? Pete, I'll start with you.

PETE:
Well, I think first of all, that they should inform their family that they need to be checked. And secondly, just don't give up. There's always hope. As I think Richard alluded to earlier, approximately 5 percent of all cancer goes into remission automatically. They don't even know why, with or without treatment. So, you know, there's always hope. And I believe in miracles. And hey, I could be dealt a miracle tomorrow. And I guess I would leave it that way.

ANDREW:
Well, we wish you that miracle, Pete, and we really applaud you for your efforts and your attitude. And Richard, final thoughts from you?

RICHARD:
I have several, Andrew. One is, as Pete said, make sure you preach the gospel and have all your family and friends screened properly as their age requires. Number two, be an advocate for yourself. Make sure you're fully informed of all the aspects of your disease, and the best treatment possible. Number three, never give up. Number four, just be strong. We do have miracles.

ANDREW:
Pete, as you mentioned, you have very advanced colon cancer. You're already beating the odds. Many people who have colon cancer go on, post-treatment, to have very long and happy lives and, of course, that should be pointed out too. So, we wish that for our listeners. Pete in Standish, Maine, up from Portland, and Richard in Amsterdam, New York, not far from Albany, I want to thank you for joining me. Thank you for sharing your very personal thoughts and your stories as you go through this colon cancer odyssey, and the treatment that you've been going through so very currently. Thank you so much. I know it's very rewarding for the men and their families who are listening. For the American Cancer Society's Cancer Survivors' Network, and from our HealthTalk Interactive Studio in Seattle, I'm Andrew Schorr.