ANDREW:
Hello and welcome to the American Cancer Society's Cancer Survivors' Network, the service created by and for cancer survivors. In Seattle, Washington, I'm your discussion leader, Andrew Schorr. Our topic: life after colon cancer for men over 65. On the phone with us are three men; two of them in their seventies, and one in his eighties. Each of them has been treated for colon cancer. Two have had ostomies, one has not. Each has experiences and insights that we think you will find very helpful.

Over the next few minutes, we'll discuss issues such as keeping yourself active to keep up your strength; having a good attitude; accepting your body and bodily functions; learning to manage a colostomy; having a support group for yourself; and helping new patients find support early on. We'll also discuss the importance of keeping up with regular reexaminations and visits to your doctor. Let's begin. First, let me introduce Bob, of East Greenwich, Rhode Island. Bob, thank you for being with us.

BOB:
Glad to be here.

ANDREW:
I guess you're proof that there certainly is life after a cancer diagnosis. I know you had colon cancer almost twenty years ago, and six years ago you dealt with prostate cancer. It sounds like you're still going strong at age eighty-two. How are you doing?

BOB:
I'm doing fine, thank you.

ANDREW:
That's great. Now Bob, we know that colostomy procedures keep getting better and better, but you've been managing with a colostomy for two decades. Has anything changed for you physically or mentally over the years in terms of dealing with a colostomy?

BOB:
Yes. There's been one slight change, although I've adapted to it. That is the fact that I developed a hernia around the stoma. And that, perhaps, comes from not following instructions that I was given at the time of the operation, as to not lifting things that are too heavy. The hernia has changed the irrigation that I have been doing. It takes a little bit longer, and sometimes it's more difficult to have the water flow into your body easily.

ANDREW:
You mentioned not following the instructions. So those instructions that your doctors, or an ostomy nurse, give you are really important.

BOB:
Well, yes, it's true of almost any serious operation where they cut open your abdomen. That part of your body is going to be weaker, and you should treat it with a little more respect than you sometimes do. Especially when you feel great and back to normal...and almost everyone will get that feeling.

ANDREW:
Well, let's talk about getting back to normal. Some men ...I don't know if it's younger or older who'd have more fear...but if you happen to be told that you need a colostomy, there might be a concern that you really can't lead a normal life. You can't dress normally. You might have to shy away from other people for concern about odor or other issues. I know you work with a lot of colon cancer men and talk to them. What do you tell them about these issues? Can they have a normal life?

BOB:
Yes, they can. Unless their job, if they're not retired, involves heavy lifting. When I say heavy I mean more than 25 pounds. That would have some effect on their livelihood. Other than that, why, you can do anything that you were doing before, and live a perfectly normal life.

ANDREW:
Have you shied away from other people at all because of some shame or any kind of self-consciousness about having this device?

BOB:
No, not at all. I mean, you don't go around broadcasting the fact that you have an ostomy. Your concerns, as you have already mentioned, are making certain that you don't experience any odors which will bother other people. You can wear tailored clothes. You don't have to wear baggy clothes because the appliances that have been developed in the last 20 years have been great. They don't show through your clothing. So you can feel just like a normal person.

If I could add, I am a member of a support group. And one of the best things you can do for an ostomy patient who has just had surgery, when you visit him, is to be dressed in a way that they can't believe that you have had the same operation that they've just gone through. It's very reassuring to them.

ANDREW:
Let's talk about support groups a little bit. So here you are, many years later. Are you still in active contact with men who are going through this?

BOB:
Well, I'm still active. I run the visiting program here in Rhode Island. It's for anyone who has ostomy surgery, which includes urostomy and ileostomy as well. It gives you a good feeling to know that you have helped others. I don't know if it's a selfish instinct or not, but I enjoy doing that and I continue to do it. I also have others I can call on. I have women I call on to visit women who have had the surgery, and men to visit the men. It's a worthwhile work. That's why I do it.

ANDREW:
You were in your early sixties when all this started for you. How important has communication been as you've dealt with colon cancer?

BOB:
Well, it's important. Your close friends, they know that you have had surgery. It really isn't anything to be ashamed of, although it deals with matters of the body that most people don't like to deal with. But they're just body fluids, or body products, and so there isn't any concern. But, as I mentioned earlier, you don't just go around broadcasting to everybody that, "Hey, I have a colostomy."

ANDREW:
And what about communication with your wife? What would you say to men if colon cancer strikes in later years? Can they talk frankly about this with their wife, and lead a normal life, and have a good relationship?

BOB:
Well, like any good relationship, I guess, you're open about everything. One of the things we stress as a support group is that each person who has an ostomy should become self-sufficient in managing his ostomy, changing the appliances, and things such as that.

ANDREW:
You sound to be pretty together, Bob. But are there any issues that hang on for you with both colon cancer and, on top of that, prostate cancer in your life? And just the fact that you are a cancer survivor. Is there fear in the back of your mind that any of these cancers will rear their head again? You know, you just sound together, but are you totally that way, or are there issues that you're dealing with?

BOB:
Well, I assure you it isn't a front. I'm a firm believer that a positive outlook is the best way to go. There are some people who say that, once you've had cancer you're never free of it, you're a survivor. But, frankly, I just feel...especially as long as it's been since my colon surgery...that I don't have it anymore. But I do have a test annually. It is referred to as a CEA test. It measures certain proteins in the body and, if you're within a given range, why, you're okay. And that's reassuring.

ANDREW:
And, as you've been having tests over the years, you keep coming back okay?

BOB:
That's right.

ANDREW:
Good for you.

BOB:
And the same thing is true of prostate cancer, of course. But that's another story.

ANDREW:
That's a topic for another day.

ANDREW:
Well, let's jump down to Florida and bring in another member of our discussion group. Joe is down in Melbourne, Florida. Joe, thank you for joining us. Joe, I know you're 76 and, like Bob, you're married. You, also, have lived with a colostomy for a long time. I think it's almost fifteen years in your case. Is that right?

JOE:
That's correct.

ANDREW:
So, just like Bob, you have this reminder that you deal with every day, of the cancer. Does that bug you at all? Or, like Bob, do you just go on with your life?

JOE:
Oh, no, I accepted it pretty quickly. You've got to accept it. You can't fight it. You do the best you can. The best thing that happened to me was getting hooked up with the support group.

ANDREW:
That's what I wanted to ask you about. I understand from our producers that you found a support group just six months after your surgery, and you wish it had been even sooner. Why is the support group so important to a gentleman dealing with colon cancer?

JOE:
Well, I've been going to almost every meeting since I've been connected with them.

ANDREW:
You mean fifteen years?

JOE:
Correct. Once a month. And it's very few meetings where I don't learn something new.

ANDREW:
So, it's not just something that somebody deals with right after surgery. For you, it's played a role in your life over many years. Let's share some of that, the benefit of your Florida group. For men who are listening who are older gentlemen such as yourselves. Joe, what are tips from the colostomy support group, or from the group dealing with colon cancer, that you'd want to share? What are some simple things that have really helped you?

JOE:
Well, I use the system of irrigation. I irrigate every day. And that's been one of the best things that happened to me. I did not irrigate for the first few months. Once I tried it and it didn't work. Then I waited awhile and tried it again and, in the process, we learned how much water to use, and different systems.

ANDREW:
Do ostomy nurses play a role in your group at all?

JOE:
They sure do.

ANDREW:
And they're quite a great resource, aren't they?

JOE:
They sure are. They're at every meeting. They go from table to table and answer questions and what not.

ANDREW:
Bob, you mentioned that you're involved with the hospital there. Have you found that if people seek out the ostomy experts...not just the patients, but also the nurses...that they're willing to help? And to help with those practical issues, like irrigation?

BOB:
Yes, I found the same thing as Joe. They are most helpful and perhaps the best kind of help you can get. Because they deal with this daily, and they keep up to date on what's new. They have good answers all the time.

ANDREW:
So, a call to the clinic by a man who's been dealing with colon cancer doesn't necessarily have to be to the doctor. In other words, you could be calling the nurse to say, "Hey, I could use a little advice here." Is it your experience that, even over the phone, they are willing to help?

BOB:
Yes. I'm not really connected with the hospital. We just happen to hold our meetings at the hospital, which is in the center of Providence. On the little brochure that we have about our particular chapter, the United Ostomy Association, we list about ten different nurses. They used to be called ET nurses. Most of them are now what they call WOCNs, Wound Ostomy Continent Nurses. And yes, you can set up an appointment with them. That's where I think most people get their help when they have to go to a medical professional.

ANDREW:
I think that's a good point to develop: the relationships in your community, and the health care providers who can help you, not just the doctors, but also these nurse specialists who deal with this every day. And they can help you with issues as the years go by.

JOE:
And the ETs. They have more time to go in detail. A doctor doesn't have that much time to spend with you. You go into the office, and he checks what he has to check, and after five minutes he's gone. A nurse is a lot more detailed.

ANDREW:
Joe and Bob, let's bring in the third and final member of our discussion. We're going to go from Florida, where you are, Joe. And Bob, you're in Rhode Island. Let's go way across the country to Anchorage, Alaska. Sol, is it cold up there?

SOL:
Sometimes.

ANDREW:
I imagine it is. Sol, you're a gentleman of 74. Yes, you've had colon cancer, but this whole issue of colostomy fortunately did not come up for you. You did not need a colostomy. In fact, I know that most colon cancer patients do not need them. Sol, maybe we could say that you are one of the lucky ones. Although I would say that Bob and Joe are managing quite well. But colon cancer, of course, is still a battle. Tell us about your battle with colon cancer.

SOL:
Well, it's hard to figure out where to start.

ANDREW:
Start with Steve Allen on television. I understand a TV commercial played a role in your disease being discovered in the first place.

SOL:
No, it wasn't a commercial. It was a public service announcement. I knew that something was going on with me that wasn't ordinary...that whole proposition of what's normal and what isn't...I'd been told that I'm not normal, so there you go. At any rate, when these unusual occurrences were occurring, I knew that it was beyond my ken. So I didn't hesitate very long to seek professional opinions on the subject.

ANDREW:
Let me see if I've got this right. On a public service announcement, Steve Allen talked about different symptoms that could go along with colon cancer. And you realized that this is exactly what you were experiencing?

SOL:
No. There was no exact about it, because I wasn't an expert. And he wasn't just talking about it, he was talking from personal experience, which really impressed me. So I came to the conclusion that, if this man is a survivor enough, and willing to be a part of a prevention system, which is again, akin to my nature, I had everything to gain and very little to lose by going along with prevention.

ANDREW:
And that was ten years ago when you were diagnosed? So there you are, ten years ago, you had the colon cancer surgery. How have you been doing as a colon cancer survivor over the last ten years? How are you feeling?

SOL:
All right.

ANDREW:
Okay. I understand you told our producers that you believe that cancer survivors need to create a reason to live. What do you mean by that?

SOL:
No. Well, you say "create." There are reasons to live, but you have to...just like I sought out professionals when my own experience fell short...you have to work at the opportunities. They're there. You just have to discover them. And people keep talking about the idea: "The cock crows and makes the sun come up." That isn't the case. You know it comes up, but you have to be there to enjoy the sunrise. And you have to display a little initiative.

ANDREW:
Do you think about the colon cancer very much now, ten years after the surgery?

SOL:
There are too many other things to spend time on. Being retired, I've got a lot of time to make mountains out of molehills.

ANDREW:
Sounds like it's good, then, to just move on with your life. But there still are issues for someone who's had cancer in their past. Are there any, Sol, that have come up for you in the middle of the night? Or anytime when you say, "Could it recur again?" Or do you even think about it?

SOL:
Well, not so much that. There are problems with aging, and it's a bigger problem coping with that than anything else. I will say that I don't think cancer is a part of aging. Again, being retired, there's the opportunity to make these mountains out of molehills. If you just take it one step at a time, it sort of reduces the opposition. Hopefully, people who have dialed in to your system will be people who haven't yet done anything about their concern. And that's what concerns me most of all.

I want them to go ahead and find out all there is to know about these things instead of guessing and being afraid. Because...I don't remember the exact quote, "The coward dies a thousand deaths, the brave man dies but once." If somebody puts their finger in the dial and thinks, "Well, maybe these people are lucky..." Forget about that. Find out what's going on and do as you're told. This was mentioned also, "Do as you're told," and I think that's not to be underestimated.

JOE:
I had symptoms four or five years before I retired, and I didn't pay any attention to them. I thought they'd go away.

ANDREW:
What sort of symptoms, Joe?

JOE:
I had hemorrhoids all my life, and I just thought it was from hemorrhoids. But then, after retiring a few years, I decided that something was definitely wrong. I went to my family doctor, and he diagnosed a tumor within two minutes. I had 21 treatments of radiation. The surgeon said the safest way was to take it out and have a colostomy the rest of my life. So, I accepted it, and I hope every day will be better than the day before.

ANDREW:
Bob, you're very active with your meetings at the hospital. What are you telling people who are diagnosed with this condition? First, you are an example that you can live a long, long time and go on with your life. But, I guess there are issues about staying on top of that. I think you mentioned that you have follow-up tests fairly regularly to make sure you remain healthy.

BOB:
Yes, there are a number of things that you can do. I heartily recommend that you do them, because if there is something wrong you want to catch it as soon as possible. And if there isn't anything wrong, then you can be happy that everything's okay. But to jump on it as soon as possible is, I think, the best anyone can do.

ANDREW:
Sol, you were mentioning a minute ago that people need to get informed. How have you gotten informed? What are sources of information for you? Not just for men, as you said, but for women also. They're dealing with this cancer, colorectal cancer, and they need information. What have you found to be good sources of information?

SOL:
All of this. It isn't anything special, it's just doing what you know. We're supposed to be rational animals, and yet sometimes we lie to ourselves. Again, there's a proverb, "To thine own self be true." There's lots of information available anywhere, if people just follow up on it. I think we tend to delude ourselves. It isn't a question of whether it's available or not, it's a question of whether we want to believe it or not. There's the rub, there's the danger. And when it comes to follow-up examinations, I was a little bit hesitant, too. Because it was inconvenient. Well, as I say, we can delude ourselves until the end of time. But when they say to you that it's up to you, that kind of leaves the ball in your court.

ANDREW:
You need information to help make decisions. And you've got to ask the questions and not be afraid of the answers.

SOL:
Exactly.

BOB:
Excuse me, I have a question for Sol. I'm just a little bit foggy as to the nature of his surgery. I believe, from what he has said, that he had surgery where they removed a part of the intestine and then reconnected it, all in the same operation. Is that true?

SOL:
Yes.

BOB:
See, it's also a question of early discovery and the new techniques. Because even the reexaminations are new, making it more convenient and less uncomfortable to be reexamined.

ANDREW:
I think that's a key point. Let's talk about the reexaminations. Let's say there is someone, a gentleman such as yourselves who had this surgery. More likely than not, he did not have a colostomy. He has dealt with this years in the past and is told to have a certain follow-up. Maybe he gets to a point where he says, "Oh well, you know, I'm doing okay," and he sort of doesn't want to know. Are they doing themselves and their family a disservice, do you think? By not being proactive about the checkups, and the tests that it would be wise for them to have?

BOB:
This is Bob in Rhode Island. I think, yes, they are doing a disservice. As Sol mentioned, there are several different ways that the examinations can be done. And some are more comfortable than others.

JOE:
When I had my surgery I was in the hospital fifteen days. Now they get them out in about two or three days. And they seem to do all right.

ANDREW:
Medical science keeps marching on, and I think that's a testament to all the research that goes on. Sol, as you were saying, people need information. Unless you're plugged in, and asking the questions over many years as a cancer survivor, you can't get the benefit of those latest techniques.

ANDREW:
Let me go around the horn here and get some specific things, just to recap, that you want people to know. I'm really talking, in this case, about men who are 65 or older who have been dealing with colon cancer. If there's anything you want to say to men, feel free. Or, if it applies to everyone, please go ahead. Let me start with you, Sol. What are some key points that you want to leave people with...things that you think, as a colon cancer survivor in your later years, they really need to think about as they move forward?

SOL:
Wishing will not make it so. Find out from somebody that knows.

ANDREW:
Okay, very succinctly said. Bob, how about you?

BOB:
Well, these things are being discussed much more in the media these days. Colon cancer, and breast cancer, and the rest. A good starting point is to call the American Cancer Society, because they can certainly direct people to the places where information can be forthcoming. In our case, up here in Rhode Island, we have put together, with the help of the American Cancer Society, a packet of information. It includes a booklet on managing whatever kind of ostomy you have, a supplier list where you can obtain supplies, a little brochure about our organization, and a copy of a past newsletter. This gives people plenty of places to go for information.

And so far as the specific tests go, I think Sol may have been referring to a sigmoidoscopy, which is just a stiff, straight rod which is inserted up the rectum and will only survey the lower part of the colon. Whereas, the newer colonoscopy is a flexible tubing that can be threaded into the rectum and colon. It views things much further up, and I'm sure it catches more instances of things that should be checked out.

ANDREW:
Often with colon cancer survivors that I've talked to, because some family member has had this condition, it's something that they urge their children to do. For example, you want them to really follow up and get those regular exams. Joe, how about you, down in Florida. What are some points you want to leave our audience with? As a colon cancer survivor, what do you want to urge them to think about?

JOE:
Well, I think anytime you have changes in your body that you can't explain, you'd better be going to a doctor and letting him make the decision.

ANDREW:
And those can be changes, not just with pre-colon cancer, but with colon cancer in your past...as you go through follow-up care over many years. So, putting your head in the sand could be your undoing, I guess, if you don't get it checked out. I might share a personal story here. My mother died of colon cancer that spread to her liver. She was down in Florida, and I'm up here in the Northwest, but I know there was probably an extended period of time where she had bleeding, or other issues, and she just didn't want to make a fuss.

So she didn't go to the doctor and, when she did, it had already spread to her liver. And then she didn't have very long to live. Whereas, I know in the case of Ronald Reagan, and others who had regular checkups, that having things caught early made a tremendous difference in their being able to go on with their lives.

BOB:
This is Bob in Rhode Island. Another test I failed to mention is the occult test which can be done at home. It's just putting a sample of stool on a slide. Then taking it to a laboratory for examination to see if there is blood. You can't see the blood necessarily. It's not dark red or bright red blood. Many times a person wouldn't recognize it as blood. So that's another test I think people should be involved with.

ANDREW:
There are a few points I want to emphasize from meeting you gentlemen today. First of all, someone can be a colon cancer survivor, and live a long time, and have that be in their past. It sounds like with regular checkups, and being attentive to their own health or changes in their body, they can have long-term good health. For the percentage of people who are dealing with colostomies, there is support that you can get. Resources such as the nurses who were specialists in dealing with ostomies. They can be an ongoing resource to help you with any issues that might come up.

Well, gentlemen, I want to thank you from across the country...from Rhode Island and Florida and Anchorage, Alaska...for being with us. I know that the points you brought up will be very helpful to other men or, as Sol said, other people of any age. They'll certainly be helpful to those in their sixties, or seventies, or eighties, or even older who have been dealing with colon cancer. These folks might not be as outspoken as you are, and might really need some guidance.

So, I want to thank you for sharing your personal experiences and insights in order that they might benefit others. For the American Cancer Society's Cancer Survivors' Network, and from our HealthTalk Interactive Studio in Seattle, I'm Andrew Schorr.