ANDREW:
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, Andrew Schorr in Seattle. Today's topic, colon cancer and cancer recurrence for women between the ages of 50 and 65. On the phone with us are three cancer survivors from across the country, women who have lived through colon cancer and other health challenges, and who have much to share. Over the next few minutes, we'll discuss issues such as how educating yourself on colon cancer makes a difference, using the Internet to build support groups, the need for much more awareness of colon cancer and more support for people who are dealing with it, and, emotional strength that sees you through no matter how many times cancer recurs. First, I'd like to begin by introducing you to Kate from Skaneateles, New York. Kate, thank you for being with us.

KATE:
Thank you. I'm glad to be here.

ANDREW:
Kate, I understand you're 57 and you had colon cancer back in 1982 and then ten years later, you not only had colon cancer again, but you were told you had breast cancer.

KATE:
That's right.

ANDREW:
And two years after that, you got a diagnosis of ovarian cancer, and just to complicate things, long before any of this, you had a diagnosis and were living with multiple sclerosis.

KATE:
That's right.

ANDREW:
Well, that's quite something for anyone. And so, living through all of this, the MS for so many years and on top of that, cancer after cancer after cancer, and yet I'm told you have the view that cancer is not a death sentence and you remain positive through it all. How do you do that?

KATE:
Well, I think there are lots of ways. Certainly you don't remain positive every day. There are days that you feel kind of cranky and down and you wish this would all go away, but I think a lot of the positive point of view comes from support from other people. It comes from family support. It certainly helped me to have a strong religious focus and I've managed one day at a time, and I guess that's the best way that you can do any of this.

ANDREW:
Now, you're married, I know, but you have two grown sons. So, as you go through this sort of litany of not great diagnoses, while you may begin to get that focus and be bouncing back, it's maybe not so easy for your family. How have they done through all this?

KATE:
Well, I know it's been very difficult for my sons. They have been helpful to me, and in some ways sometimes were almost caregivers. It's been important for them, for me and for them to go on with their lives and not be kind of tied up in a mother who is sick day after day. My husband has been a wonderful support, and he has, I think, a similar attitude to mine, that we've dealt with it before; we'll deal with it again. I know when I was diagnosed with ovarian cancer, the issue was, "Is this a spread from the colon cancer?" Which would have been very bad news. Because it would have, the odds of recovery were much poorer than if it had been a new cancer. I think that was the time that we really looked hard at this and said, "Well, you know, we're together. We're going to live with this as best we can. We'll make it through. And we have. I think that that support from him has been just wonderful. It's been part of what gets me going each day.

ANDREW:
What's your outlook, day by day, for the future?

KATE:
I have a family of cancers, all of these cancers are interrelated, it's a syndrome. I assume at some point I will probably have a recurrence of this cancer, but I do what I can do each day. I'm very busy, as far as I can be busy with MS, which kind of drains your energy, but I'm busy. I enjoy living. I enjoy laughing, doing wacky things, playing with my dog, so this is kind of my outlook. Life to me is a lot of fun.

ANDREW:
Tell us, what is a wacky thing that keeps you up and feeling good about things?

KATE:
Oh, I don't know. I'll find a joke on the Internet and come running in to tell my husband, or singing a little bit, or dancing around, or reading something. Just, I don't know. My husband thinks I'm a little wacky and I think that he's right.

ANDREW:
And that's good, probably, that's okay.

KATE:
Yes, it's a very positive. It's a positive outlook. I enjoy things. I grow things in a garden and I just love to see them growing, and I get annoyed with the dog for eating my tomatoes, and it's just fun things in life.

ANDREW:
Kate, you talked about your sons and that they had sort of been through a lot as they worry about their mom, and you want them to go on with their lives. What are things that you say to each other? What do you say to them to sort of give them permission to go on and not be tied up in knots about what you've been through or what they fear could happen in the future?

KATE:
I don't know that I can really give you a good answer on that, because I don't know that I've always done it well. I think, with my second son, I almost had to say, "It's time to move." He lived at home for a long time while I was sick. I think he saw taking care of me as something he had to do, and I just had to say, "I can take care of myself. I will take care of myself. I'll be okay." And it isn't always easy because they don't always talk about it either, you know, about how they're feeling.

ANDREW:
Kate, I have a question for you. I understand that there was cancer in your family, with your mother. What type of cancer was that?

KATE:
My mother has had colon cancer twice. She also had breast cancer, and as I said before, this is a family cancer. Her mother died of it, her brother and sister died of it. I've had cousins with the same cancer, so Mom had it when I was about 13 and she had a recurrence about the same time I did, in the early 80's.

ANDREW:
Now I have two issues to talk to you about. The first is, I understand that your dad didn't want your mother to know.

KATE:
My dad refused to let my mother or any of us know that she had cancer.

ANDREW:
And you heard by accident. Tell us about that.

KATE:
I heard by accident. As a teenager I had a job in the hospital working as a nurse's aide and the hospital staff said, "Oh, isn't it wonderful about your mother? It's just, you know, we never expected that she would walk out of here." They expected that she was going to just, was going to die and would never leave the hospital. And I was flattened. I had not heard that. I knew mother was very sick, and she had had a colostomy for about five years when I was in my teens. She struggled with that and that was how I found out that she had cancer. Later, a doctor did tell her that she had had colon cancer, but she did not know that for probably eight or nine years.

ANDREW:
And it just wasn't talked about in the family.

KATE:
It wasn't talked about, no.

ANDREW:
But, yet, you talk about it in your family. Why do you think there is a need to know and would you urge others to be open about it?

KATE:
Oh, well, there's a very practical reason. This is something that my sons and my sisters need to be aware of, that they need to be watching for and be tested for. But, also I think that when you can say the word and people can talk about it and you can say "cancer," you can say "colon cancer," you can say words like "rectal cancer," it just makes things much easier and you're no longer kind of bearing the burden of hiding all this stuff.

ANDREW:
And that's what was going on in your family with your mom, with the colostomy and all that was really being hidden?

KATE:
It was very difficult to live with someone who did not know why they felt so terrible, who had, who was trying to deal with a colostomy that was not very well regulated, who felt sick and tired.

ANDREW:
And it was never described as colon cancer?

KATE:
And never called colon cancer.

ANDREW:
What did she think she had?

KATE:
I have no idea. Something that was wrong with her stomach. Sometimes she talked about as a child having to carry water and maybe this had caused the problem. I think that she probably knew it as well as everybody else, but those words were not spoken. My mother talked a little about it and she said, "Your father thought that I would give up if I knew I had cancer."

ANDREW:
And what did she say to that?

KATE:
That was all she said.

ANDREW:
Do you believe, knowing your mother, that that would have happened, that she would have given up?

KATE:
Oh good grief. My mom is 80 years old now. She's very feisty. She volunteers for five or six groups. She delivers meals to the elderly. She's survived colon cancer twice and breast cancer. That she would have given up is a very odd notion.

ANDREW:
Kate, I have one question for you before we introduce one of our other discussion members, and that is, there may be a family member who listens to this discussion, and is hesitant to, maybe they've gotten the word about a recurrence of colon cancer for their loved one, or some other news like that, and they're debating about whether it should be shared or shared in the family, discussed openly. What's your advice to them?

KATE:
Oh, I think the more open people can be, the more they can talk about things, the better off they are. But, definitely, the person with the cancer needs to know about it, so that they can control their own life and fight and struggle for survival. You can't fight something you don't know.

ANDREW:
Well, lets bring in Pam from Madison, Wisconsin. Pam, I know you're 53, and you were diagnosed back in 1993 with a very rare form of colon cancer. I understand that it was really in the appendix. Is that right?

PAM:
That's correct, yes.

ANDREW:
And, you found out at the same time that you have cancer in the ovaries as well?

PAM:
Actually, the discovery of the ovarian tumor occurred six months prior to the discovery of the tumor in the appendix. The ovarian one was from the one in the appendix.

ANDREW:
Now, Kate was talking just a minute ago about her ovarian cancer and talking about the severity of when those cancers are connected. Here it is years later. This diagnosis was in 1993. How are you doing?

PAM:
Well, as far as the cancer is concerned, I suppose that I'm in remission. I never know for certain until blood tests or scans and things come back, but so far, I assume I'm in remission. Although I am disabled from Chronic Pain Syndrome which developed as a result of all the surgeries that I had.

ANDREW:
So, you live with the effects of your treatment every day?

PAM:
Yes.

ANDREW:
Well, you also have training, I understand, as a Ph.D. in Biology. So, here you are a scientist and then a biologist. How have you coped with that?

PAM:
At first, I thought that my body had betrayed me. It was very upsetting to me. I understood fully what was going on. I think sometimes it's a little bit easier if you really don't understand the implications of what you have, but when you have the training and you can read the literature and understand, it can be very frightening. But, at the same time, knowing what you have gives you the ability to go out there and look for the best treatments and to understand it and to fight it better. So, it's a double-edged sword.

ANDREW:
Tell me about colon cancer versus others. There's so much information that we hear about breast cancer. More is being talked about among men, about prostate cancer. About colon cancer, do you feel that the information is readily available or does there need to be more?

PAM:
There definitely is not enough information for the public about colon cancer. It is not talked about openly and I think it's because people just don't like to talk about colons and rectums and about their bodily functions. So, this cancer is simply not talked about, and most people are not aware of the symptoms. They're not aware that, beginning at age 50, or even younger if they have a family history, they need to have screening done to see if, in fact, they do have a colon cancer or a pre-cancerous condition. This cancer, if it's detected early, or even before it becomes cancerous, has a very high survival rate. So, we really do need to get the word out to the public what the symptoms are, so that they can get to their doctors and get this detected early. And, also get the word out about screening, so that it can be detected before they even have cancer.

ANDREW:
Good points. Now you're a scientist by training, so you're very well trained in how to do research on how to get information on your areas of interest. I also imagine that you're well equipped to do that for your own health condition, but not everybody knows how to do that. What advice would you give to a woman who's dealt with colon cancer so they can stay informed and deal with concerns about recurrence? Or, if they are dealing with a recurrence, how to be informed to give themselves the best quality of life and chance for long-term survival?

PAM:
I really think that patients should try and seek out other patients through various support groups. There's a Colon Cancer Alliance which has been developed that will match people up with buddies. They have an online support group with chat, with e-mail support. There are all kinds of ways that patients can learn from other patients and from other caregivers about this disease. They can really help themselves learn what they need to learn in order to better find the treatments that will, hopefully, give them the best chance of survival.

ANDREW:
But it's understandable--you just were talking earlier about people having difficulty talking about bodily functions and all--that it's difficult to take that first step to get involved?

PAM:
It's very difficult, but one thing that makes it easier is that if you do have a computer, it's all anonymous. So, that does make it easier. You're not looking at somebody face-to-face and having to talk about bodily functions. It's just typing things into a computer, and so that makes it a whole lot easier.

ANDREW:
Are treatments changing and advances being made related to these cancers that you and Kate have been dealing with? Where you feel that staying informed makes a difference? Because there might be some people who say, "You know what, I don't want to know because there's not much more they're going to be able to do for me, and whatever, you know, the good Lord says is going to happen, if you're religious at all, that's what's going to happen."

PAM:
There's been a lot of change in the short period of time since I was diagnosed. At that time there was basically only one treatment, and since then, a second line therapy has been licensed. There are many, many drugs that are going through the protocols for new drugs. And, I do believe that through the clinical trial system, there are going to be a lot of new treatments available, probably in the very near future. There will be more drugs and there's going to be different types of treatment available.

ANDREW:
So, you're not just saying that as somebody who's dealing with this, but intellectually, as the scientist as well.

PAM:
Yes. A patient right now has access to many, many clinical trials and these are cutting edge therapies that patients can take advantage of.

ANDREW:
How do you find out about them?

PAM:
You can call the National Institutes of Health. Or, you can go to their website, if you have a computer, and you can actually read about the clinical trials. But you can do it either way. There are regional centers that have people specifically trained who will talk to patients on the telephone and will help get them some literature and get them information.

ANDREW:
All good points.

ANDREW:
Let me bring in our third and final member of our discussion group and that's Ann from Aurora, Colorado. Ann, thank you for being with us.

ANN:
Well, thank you for having me.

ANDREW:
Ann, I know you're 56, you're single, and you had surgery and a colostomy four years ago for colon cancer. Ann, I understand that tumor was not picked up so easily. Tell us about that.

ANN:
Well, I had symptoms. I had a sigmoidoscopy about two years prior to the actual diagnosis and it simply was not detected. It speculated probably because it was so low, actually, in the rectum, that the physician just missed it. And my recommendation to people when this is discussed with their doctor as far as screening processes are concerned, if you have a family history, which I had, and you have symptoms, which I had, I personally would recommend that they have the whole colonoscopy. The reason I feel that way is, first of all it's just as invasive as the sigmoidoscopy is and I just feel if you're going to go through it, you might as well be 100% sure. They check the full colon. In my case it didn't matter, where with our other two ladies, it did. But I think there are specialists who actually have your colon up on a screen. That's probably why it was missed, the expertise was just not quite there.

ANDREW:
Ann, for women who are listening who are worried about a recurrence of colon cancer, or who have had a recurrence or some other cancer related or maybe unrelated, but a recurrence of cancer, maybe they've been through those procedures. But what would you say to them about ongoing care? Somebody like yourself now has been treated for colon, or colorectal cancer. How do you proceed now to have long-term health?

ANN:
Well, I think anytime you face any kind of disease whether it be cancer or anything else, you become more aware of all the things that you've heard about diet and exercise. And, you know, I would have told you that I have followed all those rules prior to, but it's possible that I didn't always eat enough fiber or enough fruits and vegetables. I had a responsible job and a lot of times maybe I didn't eat properly, or have enough exercise. So all of those things come into play and they're all very important. But be open. As we discussed previously, this colon cancer and all the subject matter that we discussed, people just don't want to talk about it. We need to bring it out into the open. People need to take the fear away of having the screening test if it needs to be done. Some people simply refuse to go. Sounds strange, but they, they just ignore it. They go into denial I guess.

ANDREW:
Is it your experience, even for people who've been down this road of colon cancer, that they have denial, too?

ANN:
Of the symptoms?

ANDREW:
No, no, no. Well, there could be changes that they need to have regular checkups and follow-up and kind of listen to their body, if you will.

ANN:
Well, you know there's probably different types of people that react to things differently, I know I'm kind of a take-charge person so it was real important to me to follow all the rules even closer than I did previously, but some people, if they don't get involved in support groups and get all the facts, may just take a different kind of an attitude. "This happened to me and it's not going to happen again." Or, "I'll just ignore it and maybe it'll go away, who knows." But I think that all of the warning signs and all of the precautions that you read about every day are very important to observe.

ANDREW:
Ann, you're different from Kate and Pam. You have not dealt with another cancer, other than the initial colorectal cancer. Do you think about it very much?

ANN:
Yes, I do. Even though my surgeon said to me after the surgery that he considered the surgery a cure. You know the advantage of having the tumor so low in the colon and the fact that it had not penetrated, had not been invasive into the colon, it was what they call a B2 tumor, was fortunate for me. That was the reason I didn't have to have any chemo, or they didn't get into the lymph nodes. So, that's the reason they consider it a cure. But it's also, it still puts the fear in you. You feel like your body figured that out, and it's going do it again.

ANDREW:
We need to talk about the colostomy, though. A lot of people have tremendous fear about that. Or, some people with it may have shame if that's happened to them.

ANN:
It's very important that people understand that it is considered rare. I don't have the exact percentage, they haven't been posted, but a colostomy is not the norm. When somebody has colon cancer, it's rare that they have to give them a colostomy. So, I think it's important that people know that right up front.

ANDREW:
But in your case it was.

ANN:
My case it was. And, of course that's, you know, probably some of the struggle that I've had, and it really isn't as bad as some people may think. In fact, I have found that I quite often don't even mention it to people, I did at first, and I found that I was comforting them. And I would say, "Well, you know, I had colon cancer and no, I didn't have to have chemo, and a recurrence is probably unlikely, but I have a colostomy." And, then they're stymied and don't know what to say, and I'm comforting them. So, I have actually found that I just don't say it as often, not because I have any problem talking about it at all.

ANDREW:
Ann, we often hear women who are breast cancer survivors, if they've had a mastectomy, talk about changes in body image and how they feel about themselves. What about a woman with a colostomy, did it change your view of yourself?

ANN:
Certainly. Certainly. It's, your body is completely different, and it's the same as with breast cancer. You've had a part of your body removed, and now you have this strange looking body to add to it, plus the process is not what you consider normal. I actually do support groups for people who are new, who just recently had a colostomy, so I guess I've kind of overcome some of that by stepping out and talking about it.

ANDREW:
So now, four years later, is it a big deal, the routine of this, and could you talk a little bit about that?

ANN:
I think it was the most difficult probably the first six months to a year. Well, I guess the first year. I'm retired now and I do find my life a little easier since I don't have the regimen. I traveled a lot and you know being on a plane at 6 a.m. in the morning and traveling and that sort of thing makes that just a little more difficult. Although I know plenty of people who have full time jobs and go full bore ahead and they manage it just fine. It is manageable. Clearly, all the equipment, all the supplies they have, all the support lines with your nurses and your doctors, it really is a very manageable situation, truly.

ANDREW:
What does it keep you from doing, if anything?

ANN:
Nothing, nothing.

ANDREW:
And what about the way you dress?

ANN:
Nothing, nothing shows. Nobody knows. The only reason anybody would know is if I told them. I mean there is, there is just nothing that anybody would detect. Now granted, I never wore a slinky dress, so, I mean that wasn't who I was, so I don't have any clothes like that. So, I suppose it would limit you there. I wear bathing suits, I take a swim class twice a week, I do everything that you would do, or anybody else.

ANDREW:
Ann, does it affect your relationships at all?

ANN:
I think I'm a fairly healthy person in my head as well, and so I don't look at it as anything that makes me any different. At least I guess I feel that if someone would judge me that way, then I guess I don't need them.

ANDREW:
That seems to be a pretty healthy point of view. Let's ask some questions for anybody who wants to answer them. And, we were talking with Ann about colostomies and she was pointing out that that's really the minority of cases of people dealing with colorectal cancer. Kate and Pam, was that a fear for you?

KATE:
This is Kate and I definitely was very frightened of a colostomy, particularly the first time around. Mom had had one. It had been very difficult for her and I think that when the surgeon said to me, I don't think we're going do that, that was when I really breathed a sigh of relief and thought, "I can now go forward with this." When I got to the ovarian cancer, and this was quite a long way down the line, the surgeon said, "Now, I'm going to send somebody in here to take a look because we may get in there and find we have to do a colostomy." And, that set me back and caused me quite a bit of panic.

ANDREW:
Pam, did you have a fear about it?

PAM:
Yes I did and I still do. Because one thing that my doctor did tell me at one point was that if I had surgery again, because I had extensive adhesions, that I could end up having a colostomy. And it's something that you think about. I'm not terribly frightened about it and certainly I don't think about it very frequently, but it passes through my mind from time to time. But I'm not afraid of it. It's certainly something that is, as Ann said, very manageable. You just have to learn to deal with it. Whatever comes up, you simply learn to face it. I have the same family cancer that Kate has and so I have a very likely chance of recurrence as Kate does, so it's something that you just learn to live with.

ANDREW:
Ann, maybe you could help us all understand. Kate has this recollection of her Mom, and feeling of unpleasantness related to that whole experience, but has the equipment changed so that it is more manageable?

ANN:
I believe it has. I did go to an ostomy association and they took us through. They had a tape and a history. And I don't want to bore anybody with the details or scare anybody, but believe me, the equipment prior to and I don't know exactly when the time frames are, but probably in the seventies and maybe even the early eighties, the adhesive that's used around the stoma, I think there's been a tremendous improvement. People used to have a lot of skin irritations and that sort of thing. And even recently, if this is okay to say, people won't get kind of upset, they have a new, what they call a flushable liner that goes in your pouch. And, I'm telling you, you feel pretty darn normal.

ANDREW:
Well, let's talk over some other issues. For women facing issues with colon cancer and then, in the case of two of you, related cancers or other cancers, and in Kate's case, other conditions, too. You're very open about this. Do you feel a need to talk about this more because we've discussed earlier that colon cancer had not been discussed much? Do you feel a personal need to speak out about this?

ANN:
This is Ann and I have been very involved with the American Cancer Society. I'm also on our Public Issues Committee for the American Cancer Society and the Colorectal Task Force. I think that speaks for how strongly I feel that this needs to be discussed openly so that people can go to their doctors if they have symptoms. Hopefully, colon cancer, as we said earlier, is 99% preventable. Maybe people don't realize that a polyp takes anywhere from five to seven years, I believe, to develop into a cancer that could be invasive. So, people need to know all those things, and I feel very strongly that that is maybe part of my mission and maybe why that happened to me when it did. At least that's the way I look at it.

ANDREW:
Pam, how about you?

PAM:
Well, I spend a great deal of my time in patient advocacy on a couple of the clinical trial groups as a patient advocate. I'm a member of the Colon Cancer Alliance, in fact, one of the founding members. And, I'm very active in that group and I'm very active in the colon cancer lists online where I try to help other patients who are newly diagnosed. So, I spend a lot of time in advocacy and I feel it's extremely important. And, we do need to educate the public so that we can reduce the number of cancer patients, of colon cancer patients. It's the second largest killer among cancers and it certainly doesn't need to be that way. It can be prevented.

ANDREW:
Now,of course, your outreach helps many others. But, the process as you deal with your cancer, how does it help you?

PAM:
It helps me to talk about it. You can't keep such things all bottled up inside. There's a real need to be able to let the emotions out and discuss it freely and openly with your spouse. My husband has been very, very supportive through all of this and with other patients and with friends. And, it's very helpful for me to be able to tell people how I'm feeling. Because I do have days that are very, very bad and I have other days that are very good, and there's an emotional rollercoaster that you're on all the time.

ANDREW:
Pam, I want to ask you a little bit of specifics about that because I'm sure that anybody listening who's dealt with cancer has had had these sorts of conversations. But, I want to know how you deal with it. So, there's somebody you know casually, but they know your history or a little bit about it or they've heard from someone else and they say, "Pam, how are you doing?" How do you answer that?

PAM:
Generally, if it's someone I don't know very well, I just say, "Well, I'm doing okay." And, I sort of let them lead the conversation. If they want to go into more detail then, then I do. But, I don't push myself on them. Some people really don't want to discuss it and I don't want to force it on anyone. My very close friends, of course, know all the details of what I've gone through and the difficulties I had in getting my initial diagnosis because I did go through a lot of difficulties. The first year was extremely difficult and I think that if I hadn't had some real close friends, it would have been a lot more difficult.

ANDREW:
So, on a day-by-day basis you talk to your friends on the phone or see them or visit with them. How does it come up in conversation now?

PAM:
Yes. It doesn't come up in conversation unless I've had a doctor's appointment or some scans or something and they'll ask me, "Well, how did your doctor's appointment go? Or, did the scan show anything?" That's the sort of thing, but it doesn't come up in daily conversation.

ANDREW:
Do you bring it up sometimes, either with your friends or you mentioned earlier, your husband? When you need support, how do you ask for that help?

PAM:
Well, my husband is pretty perceptive and he can tell when I'm not feeling very well, and he'll bring it up and we'll talk about it. Very often my friends, my close friends, will look at me and say, "You know, you really look tired today." Or, "You don't look very well today. Are you having some trouble?" And then we'll talk about whatever it is that's bothering me that day.

ANDREW:
Not everybody has a husband such as yours, and Kate, it sounded like your husband's a pretty good guy, too. What advice would you have for women who are dealing with this, where they need that kind of support and it's not offered. How do they ask for it?

PAM:
You know, I'd like to talk about a little different kind of support, because it's one of the things my husband does for me and that is exercise. I swim almost every day, and when I'm feeling down, and cranky and fussy, my husband knows that. And, instead of kind of talking about it, he says, "Now get on your suit." And, we go to the Y and that helps me, just that exercise. So sometimes it's easy to talk. We used to, before I was in the wheelchair, we used to walk in the morning, and sometimes just that time of exercising or being together that way, rather than to say, "I'm going to sit down and tell you about all this," I think is helpful. It's good for both of us, because after we've been in the water, his difficult day at work, my difficult day with whatever ache or pain or weird body thing that has happened, it's just a lot easier to deal with. And I think that that's one of the pieces of support that if I were to say to somebody, here's something you can do for yourself while you're recovering. It would be to find some exercise kind of thing that you enjoy. Walking, or running for those who can do that kind of thing, but you don't need to run. Walking or swimming, and then the words come a lot more easily.

ANDREW:
And, so if there's an activity with someone close to you that you can do, there's the opportunity to talk.

PAM:
That's right. Or even sometimes when we're digging in the garden or we're putting together furniture, I don't know, just an activity. I think that's always been true in my family, but it's easier to talk while you're doing something.

KATE:
Yes, I'd agree with that. Even just doing the housework together or doing the laundry together, just normal everyday activities.

ANDREW:
Ann, I know you're single but I'm sure you have many people in your life. And you talked about how busy you'd been in your job and now you've slowed down some, but how do you enter into discussions with friends and family to support you and deal with issues that might come up?

ANN:
For starters, I have a brother who is a physician. And, from the onset, he was there. Of course, he was there when I had the surgery and he's a nice person to bounce things off of, if I just have a question. And my surgeon is one of those kinds of doctors who says, "Call me anytime." And I have a friend right now whom I'm going to visit who is a nurse who was very comforting just prior to the surgery. When she knew, when we both knew, that I was going to have the colostomy, she was the one who was so comforting as far as how manageable it was now and how the equipment has changed. And all the little fears that might pop into my head, she just calmed me down over that. And my support, the support groups I have joined, other cancer survivors, when I have listened to all the struggles that they have had that I haven't had, it just simply doesn't matter, you know. It's like, "Okay, I really can deal with this. Things could be so much worse."

ANDREW: You mentioned your brother's a doctor and it sounds like he's pretty well informed, but we've heard of examples in the conversation today of maybe when doctors were not so well informed or something was missed or a diagnosis was hard to pick up. And we also talked about how colon cancer is not always easily discussed in the public. Have you all found that to be true in interactions with physicians sometimes? And, is there something that you would advocate for colon cancer survivors to do in being proactive about discussions with health care professionals?

KATE:
Well, I think that when you get to this point in cancer recovery, you are very strongly into a system. I mean you're not telling somebody, "We need to follow this up." You're probably working with an oncologist, who has a follow-up system, so it's not so much...

ANN:
Yes, I think you're saying...What I'm trying to say is that you're already in the expertise area. And you do not find that the issues that maybe you dealt with before are there.

ANDREW:
Well, let me ask it this way, though, and maybe Pam could comment. That is, Pam, you discussed earlier how there's a lot happening in colon cancer, colorectal cancer studies, and clinical studies. Someone's local doctor, who may be an oncologist, certainly treating you and following up with you, may not always be plugged into all that. Yet, this may be really important for a colon cancer survivor's long-term health. What would you recommend to people on how they can have an ongoing dialogue with their health care provider to make sure that the leading edge of science is brought to bear for them?

PAM:
I think that the one thing that all patients need to do is get a second opinion from another oncologist or surgeon, depending on the particular case. But, always see more than one physician. Get more than one opinion as to how to proceed, and I also encourage patients to go to a cancer center if at all possible rather than a local physician. But if they're going to be treated locally by a local physician, and most cancer patients probably are, find out if they're associated with a clinical trial group. Ask about clinical trials. The local physicians can call and they can find out what's going on very easily. And, and in almost every community, there are doctors who are participants in one of the clinical trials.

KATE:
This is Kate again and actually I think I was a little too optimistic about the kinds of things that people know about now. When I had my first colon cancer, and this is almost 20 years ago, so we're talking a chunk of time, I was treated in a small hospital in a small town. And, even though the cancer had spread to the lymph nodes, which usually calls for chemotherapy, the doctor said, "Oh, I don't think you need chemo." And, of course I was delighted. I didn't want it. He said, "Oh, you don't need chemo," and I leapt forward and said, you know, "Thank God for that." And, I sped right on with my life. So, whether that would have happened today or not, I don't know.

ANN:
I do think it does, it does happen to a lot of patients.

KATE:
So, if a doctor is agreeing with something that's optimistic for you and you just kind of shrug it off, that's not good. I think you have to know the facts and what is required and actually there are, there's very good information through the patient data system, PDQ I think it is, through the National Cancer Institute.

ANDREW:
Ann, you had a comment before we wrap up?

ANN:
No, one of the things I did learn with my support group goes along with all the things that both Pam and Kate recommended, as far as going to the specialist. And, you really have to be your own personal advocate. You have to take charge, and you many times have to ask the questions and do the study. You really cannot be passive. And you need to take notes. Sometimes I would. If you have to go, if you have a question for your doctor, you get intimidated. I think people are intimidated by physicians sometimes for whatever reason. You almost have to walk in with it written down, so you can check everything off. So, you can walk away being satisfied that you have been treated to everything you can possibly ask or get the answers for, I should say.

ANDREW:
Well, those are really great comments. I would say the fact that we're having this discussion, two of you, Kate and Pam with cancers related and other cancers, family cancer as you've said, and Ann having dealt with colon cancer in your life, that all of you being so outspoken, that being here to have this conversation is a testament that people can live with having had cancer like this in their life. And, they can go on and can advocate for themselves and have a quality of life. I have this image of Kate swimming regularly with her husband and I think it's a beautiful image. So, I want to thank each of your for sharing your personal stories and your thoughts and, lastly, then, Ann, Kate and Pam, maybe starting with Ann, would you encourage our listeners then, even if they've dealt with colon cancer and had a recurrence, to feel positive?

ANN:
Oh, definitely. Definitely. It is very positive. I mean, you must have a positive attitude. That's part of what makes you healthy.

ANDREW:
Kate, what about you? You've been through so much, but yet you're positive?

KATE:
Oh yes. I think that it's not only that you're healthier if you're positive, but you feel better. I mean, I enjoy my life, and I go on with it because I like it.

ANDREW:
And Pam, from your background as a scientist and living with this in your own life, you said emotionally you've had your ups and downs with it. What would you say then that could be encouraging? Or, what's the realistic view for someone who's dealing with this cancer and maybe recurrence related to it?

PAM:
Well, most patients with this cancer are going to survive for some period of time. We can't say how long; we can't predict. There's no way of knowing, but you can live a very high quality of life for whatever amount of time that you survive with this cancer. And, many patients live a long time with this cancer. And so, yes, you do need to maintain a very positive frame of mind. And even if there's a recurrence and you know that this time you're not going to ultimately survive, you may have many good years.

ANDREW:
Well, I wish each of you well, and I want to thank you for sharing your personal experiences and your insight. For the American Cancer Society's Cancer Survivors' Network, and from our HealthTalk Interactive Studio in Seattle, I'm Andrew Schorr.