My name is Dennis, and today you'll be listening to nine long-term cancer survivors, including myself, discussing fear of recurrence. Prostate cancer recurrence is my fear, and by having a "Plan B" ready to spring into action, information I gather from my man to man support group helps me cope.

Ron, age twenty-six, is a five-year survivor of testicular cancer and actually gets physically and emotionally upset when his yearly check-up comes around. Stevie is a nine year breast cancer survivor who is actually dealing with the fear of recurrence and depends a lot on her family, friends and church to cope with it. Joanne has had a recent recurrence of a nine year old breast cancer. Listen as she describes a better self-image, positive attitude and a strong support group system. Robin has had two battles with non-Hodgkin's lymphoma. Her connection to a support group allows her to vocalize her fears. Betty, a survivor of breast cancer and recent brain cancer, has a very strong faith in God, positive thinking and humor that allows her to get through the fear of recurrence. Janet, a colon cancer survivor that spread to her liver, gathers information on various treatments and puts a lot of faith in doctors to handle her fears. Andrea, a thirty-one year old survivor of non-Hodgkin's lymphoma with a second cancer on her lower back, gets through it all by being informed and learning all she can about her disease. Robin, diagnosed four years ago with uterine cancer, her advice: have a positive attitude, faith in your doctors and yourself that you can do it.

The information given is intended as an educational tool only to acquaint the listener with different views on how to cope with cancer. It is unique due to the fact that it is from cancer survivors who have "been there and back." It is not the opinion of the American Cancer Society. Accordingly, the information should not be substituted for the advice and treatment of a physician or other appropriate healthcare professionals. Because your health is ultimately your responsibility, the participants hope the information given will enable you to fully participate in any decisions regarding your particular cancer.

Ron, Maryland

ANDREW:
Ron, you're only twenty-six now, having dealt with testicular cancer before twenty-one, and it appears you're cured. Do you walk around with a fear of recurrence?

RON:
That is something that you always live with. Yearly, I have to go get my check-ups. Yearly, I get worried. Yearly, you'll see me you know, you'll see me get sick. And my wife, who was with me when I had this, who was just a girlfriend at the time, sees it and she she'll bring it up, and I have to give her confidence that it's okay. The slightest pain in that area. And even though you won't say it, you'll think it. Oh, you know it's not there in the back of your mind, but you're always facing it.

Through dealing with the different various groups that I talk with, by going and visiting young males at college, telling them that they're not immortal. Working with I Can Cope, doing Hope Lodge, I'm facing it, knowing that it could happen again, but if it does I'm a little more knowledgeable about it, and I'll be standing up to the fight, knowing that hopefully I'll pass it again.

Stevie, California

ANDREW:
Stevie, you were diagnosed with breast cancer nine years ago. Then, just last month you had a recurrence. It was about a week ago that you had a mastectomy. How are you dealing with this recurrence?

STEVIE:
Well you know, oddly enough, I'm dealing with it exactly the way I did before they told me I had it again. I'm now waiting. I got the pathology report last night, and I haven't seen my oncologist yet, so I don't know what the next step will be, but I do know there will be further treatment. So I'm just kind of dealing with it.

ANDREW:
Stevie, do you have sort of an emotional rudder that steers you though this sort of storm of a reoccurrence?

STEVIE:
Well, I have a wonderful support group in my family and my friends and my church. And also I'm very, very active in the American Cancer Society Reach to Recovery program. And for me, I have found that has been ten times more beneficial to myself than I feel like maybe it has been to other people. But when you go out and you work with other people who have been newly diagnosed, they're coming at it from where you remember you came at it from, like for myself, nine years ago. And I can really help them through that. It's been a big, big help to me to be able to feel that I've been of help to other people.

ANDREW:
Okay, Stevie, thank you.

Joanne, Texas

ANDREW:
Now I'm joined by Joanne who had a recurrence last year of breast cancer, after being initially diagnosed nine years ago. Joanne, tell me how you dealt with the fear of recurrence before it happened and how you're dealing with things now that you've had a recurrence.

JOANNE:
I always had a fear that it would reoccur. And I kept asking my doctors, well, the further out you get, aren't you more apt to get a reoccurrence? And they said no, you're safer.

And then I had an intuition a year ago June that I had a recurrence, and I went to the doctor and they said everything is fine here. So I waited until my year end test and then it showed that my tumor markers were high. And so I would sit in the doctor's office, I wouldn't get up on the table, I'd just sit there and cry. And so they started me on a blind study, and I've gone through three experimental studies and now I'm back. I'm on chemo.

And all of a sudden, I just came alive last week and I have such a positive attitude. And what it was, I bought a wig that I love and I am a new person!

ANDREW:
A better self-image.

JOANNE:
A better self-image. Self-esteem. I look good, people tell me I look years younger. And I just had to reach that point. I believe you have to have a support system. I got involved in Reach to Recovery. I went to breast cancer forums. And since I worked in the hospital setting, I told them in my office that if I went through it they were going to go through it with me. And through all their support and love and prayer, you know, I'm okay.

ANDREW:
Thank you, Joanne.

Robin, Texas

ANDREW:
Robin in Texas, you've had two bouts of lymphoma. The first was three years ago. You were diagnosed with non-Hodgkin's lymphoma. What about your other cancer?

ROBIN B:
The same lymphoma, the same non-Hodgkin's, but the original was intermediate grade and it came back as slow-growing.

ANDREW:
How are you dealing with the recurrence now?

ROBIN B:
Well now they have me on interferon, so I'm still doing something to ward it away.

ANDREW:
What would you recommend to someone who has not had a reoccurrence and doesn't know if that's around the corner or never, to keep their head on straight, first, and also just in their planning for their future?

ROBIN B:
I would recommend support groups. I think that they're wonderful. And you have a chance to share your feelings and know you're not alone. You're not the only person in the world with cancer. And that's a very strong feeling that, I think, a lot of cancer patients have. So I would suggest, you know, staying with the support groups and in unity there is some kind of strength.

ANDREW:
Well Robin, I'll pose this to you but the others might think about it too is: not everybody feels comfortable going to a support group. So, what are things that somebody can do either with their family, friends, individually. Other kinds of empowerment to help them deal with that fear of reoccurrence?

ROBIN B:
Probably do the same thing with their family and friends as they would with a support group in that they can vocalize the fears. And I'm sure everyone has some sort of health problem. That's one thing I discovered when I started talking to some of my friends, is some of them had heart trouble or hepatitis. Everybody has a fear of an illness whether it's real or imagined and by sharing that fear you realize that everybody's got these fears and we need to be able to face them.

ANDREW:
Thank you. Robin, those are all good points.

Dennis, New York

ANDREW:
I'm going to bring in Dennis now. Dennis runs a prostate cancer support group. He had prostate cancer about six and a half years ago. Dennis, over these last several years, have you been fearful of recurrence?

DENNIS:
Yes, I've been fearful of reoccurrence. This is why I originally started a support group, because I had so many questions about my cancer. And once the physicians operate on you and they tell you they got it all, so to speak, you are on your own, like Robin just said. You're out there on your own.

So what I did was I started a support group, basically a preventative maintenance program for me. That's what I call it, my preventative maintenance program. I have "Plan B" in effect ready to jump in if the cancer returns. And that's basically how I handle the fear of reoccurrence.

ANDREW:
Tell us about "Plan B."

DENNIS:
Well, "Plan B" consists of gathering all the knowledge I could about my particular cancer. I feel knowledge equals survival. The more knowledge you have about your particular cancer, the better off you will be able to handle that if a reoccurrence does come. A quote that I use is, "If you always do what you always did, you always get what you always got." So, what that says is get out there and get the information to help you put "Plan B" into effect with the knowledge.

Number two, nutrition. I'm a very strong believer in nutrition and boosting your immune system.

ANDREW:
Let's adapt your "Plan B" just for a second. There will be some people who either don't have access to a support group or don't feel comfortable going to one, at least a formal group of people who have dealt with cancer sitting there in a room. What would you recommend for them as a "Plan B"?

DENNIS:
Talk to your neighbors. Talk to your friends. Like Robin said, you'd be surprised at the ailments that people have when you start discussing how you feel as opposed to how they feel. They chime right in about how they feel and how they survived their particular problem. I guess it's just to gather all the knowledge you can.

Betty, California

ANDREW:
Let's go to Betty now, in Southern California. Five years ago Betty was diagnosed with breast cancer. Then, three years ago, she was diagnosed with a brain tumor. Betty, it's a pretty serious metastasis?

BETTY:
Yes it is. I've often heard of where breast cancer metastasized to the bone or the lungs or the liver. But I have never heard it metastasized to the brain. So it was rather a shock for me and my family when we had heard that.

ANDREW:
How have you been dealing with that?

BETTY:
I had a very difficult time in recovering from that, because you're like a stroke patient. You have to learn how to do everything all over again walk, talk, feed yourself, dress yourself. So it was a full year of therapy for me.

ANDREW:
And how are you doing now?

BETTY:
I'm doing very well.

ANDREW:
You're on the backside of it now where it has reoccurred one time for you. For somebody who hasn't faced that yet, or they've had a reoccurrence that's being treated but they still worry about that happening again. What has helped you get through it?

BETTY:
For one thing, my faith in God has helped me a great deal. And I also believe in positive thinking. And, I read humorous books. I love humorous movies. I had gone to a seminar somewhere and they had said that laughter is the best medicine because the brain releases all these endorphins and it helps you. But as for giving advice to anybody, seek all the information they can on the type of cancer they have.

ANDREW:
Has there been something specific for you that's been kind of a symbol of how you've been able to make it through? Something you do, a specific thing you read or something in your life that has really just helped you deal with the fear?

BETTY:
Yes, that I'm going to do anything in my power today, that the Lord will help me, you know, get through this day. And I know He's going to be with me. I think it was just, be with me. You know, help me make it through this day.

ANDREW:
Now that's your positive attitude and that is certainly important. Do you also do any planning in the back of your mind, or maybe even more explicit than that for the kind of flip side, if things don't work out so well?

BETTY:
Yes. I know there's a lot of trials going on out there and I know that there's a lot of different chemos out there. And you know, you just grab at any straw out there that would help, because maybe that one is the cure.

ANDREW:
So you have a "Plan B" like Dennis does, of being informed to see should you need it, where would you go for that treatment.

BETTY:
Right. Definitely!

ANDREW:
Betty, thank you.

Janet, Pennsylvania

ANDREW:
Now, to Janet in Pennsylvania. Janet you were diagnosed with colon cancer five years ago, but by the time it was diagnosed, the cancer had metastasized to your liver. You underwent two surgeries and two rounds of chemotherapy. The good news in all of this is that you have not had treatment for over four years. Nor have you had a recurrence. How have you gone wondering will you be an active cancer patient again?

BETTY:
I guess one thing, I'd agree with what the other people talked about gathering information. I just am always listening to and reading anything I see about colon cancer. And I really have put a lot of faith in my doctors.

ANDREW:
I understand that every few months you go to your doctor for a blood test. In terms of managing your fear of recurrence, what is going through your head as you have your regular doctor's visits?

JANET:
I make sure I have my blood test early enough that I can receive the results when I'm at home. I call the office, I get the results. So I already know when I go into the doctor's office that I'm healthy. And somehow that helps me. I feel like I need to be at home, I need to be around my family when I am waiting for those results.

ANDREW:
Janet, are there some pointers you'd give someone who has this fear?

JANET:
I think one thing is I believe Dennis is the one who said it and other people have said to gather information, know that there are other things out there that you can be treated with, other treatments. Don't give up. I think there are always other doctors. I would go for a second, third, fourth opinions. If I wasn't sure I connected either emotionally or intellectually with what a doctor was saying, I'd go online on the Internet and find other people and also other information about the disease.

ANDREW:
Have you discussed with your family, you know, just that possibility that you could have a reoccurrence, and kind of talked about that openly?

JANET:
We've talked about it. I have three fairly young children and so they have talked about it with me, and me with them. And my husband and I have talked about it. Sure, it's something I think every cancer patient has to face.

ANDREW:
Now the flip side of that is you may talk about it with family and friends and they might say, "Well, kind of get off it Janet. Maybe you're obsessive, you're on the computer, and you're looking up this and that and anything that happens with colon cancer, you're reading. Why don't you put that behind you?" How do you deal with that attitude?

JANET:
Well actually, it's a pretty passive looking. I'm not out there all the time. It's just if I see something in the paper... I know there are things out there or I'll save articles. I can't say I have read all of the articles. I do sort of... I move on with my life. I also take calls for a cancer hotline and I feel like... just to give somebody else some support. I participate in a healing service once a month, a prayer service where we also talk about alternative things that people can do along with traditional treatments.

ANDREW:
Have those sorts of activities then helped you? You know you're helping others, but how are they a help to you?

JANET:
It's one way that I focus back on myself, because my life has totally returned to a normal level. It's returned to a cancer free, sort of day to day existence. Most of the time I really don't think about my cancer. And especially when I go to the service or I talk to another cancer patient, it's one way where I sort of force myself to think about it, to reflect on where I am, to be thankful for my health, to appreciate where I am.

ANDREW:
Very well said. Thank you.

Andrea, Missouri

ANDREW:
Next is Andrea in Missouri. Andrea, you dealt with non-Hodgkin's lymphoma four years ago. What happened last year?

And this is where my suggestion for people would be is, hey, go out there and get the information, learn as much as you can, but be very careful that the information you come across... be able to run it by someone who truly knows what your cancer is about. Because I was able to locate a whole bunch of stuff on sarcomas which said that I basically would be dead in six months. And came to find out when I went through my treatment, there was a chance I could get through my treatment and perhaps move on from there.

ANDREW:
And you have?

ANDREW:
Good for you. Now all of this, I should mention to our audience, happened when you were thirty, right?

ANDREW:
So the recurrence was when you were thirty, this sarcoma?

ANDREW:
So you've had a reoccurrence. What suggestions would you make to others on how to deal with a reoccurrence should it occur?

ANDREW:
How do you view the future now?

ANDREW:
That's certainly good advice. Thank you.

Robin J, New Jersey

ANDREW:
To Robin now in New Jersey. Robin, I understand that you were diagnosed with uterine cancer about four years ago, when you were in your mid-30s. Your treatment consisted of surgery followed by radiation. What's happened since then?

ANDREW:
How often do you think about the possibility of a reoccurrence?

ANDREW:
How do you do that? How do you manage what would be a heavy concern for many people?

ANDREW:
Has your bout with cancer in the past affected your outlook for the future at all?

ANDREW:
And how about at work, because you mentioned you jumped back into work. Do they treat you any differently at work or do people ask you questions, "Well, what about this or what about that, Robin?" Or, "Gee, I saw this article, maybe you better pay attention to that." You know, it sounds like you've got it handled in your head. What about people who know you, love you, work with you?

But as to the way people at work have treated me, for one thing I'm very lucky my husband is my boss, so I kind of got away with a little bit of murder there for awhile. But people have come to me and asked questions, not about what is going on with me, but they have come and said, "Look, I think I'm going through what you went through. What should I do?"

So, basically, I'm now there for people. They can come to me and say whatever they want and I'll try to help them. I had an experience on the Internet where someone came to me and needed help and it was really neat.

ANDREW:
Now you go for follow-up check-ups?

ANDREW:
Is there something you do that you'd recommend to others to just get through it and hope it's going to be okay?

ANDREW:
What strength do you hold in reserve in yourself that you know if that should occur, you can get through it?

Joanne, Texas
Stevie, California

JOANNE:
This is Joanne and I call myself a survivor. When I was first diagnosed with breast cancer I was single. And then after fifteen years I met this gentleman, who I'm married to now. And I thought, I had breast reconstruction and you know, it was a concern that he may not... that might turn him off or something, but he has been... he loves me as myself and my breast is just, you know, there.

And I have hoped that, and I know just around the corner there is a cure for cancer. That keeps me going. And I feel like that people watching me, how I handle my attitude, my faith in God, and my knowing my body, I'm an inspiration to someone.

ANDREW:
Stevie, did you have a comment?

STEVIE:
Well, I would just like to say that I agree with just about everything everybody said. I think that the more information you can gather, the better off you're going to be. You're going to be prepared to face that if it does reoccur. And you won't be caught flat footed. You'll be able to kin of bounce with it.

All

ANDREW:
I'll throw this question out for everyone. What would you say to doctors so that they could give a gift to survivors that they generally don't do now? Dennis?

DENNIS:
They hear us, but they don't listen to us. That's what I would say to them. Listen to the patients.

ANDREW:
Anyone else?

STEVIE:
Andrew, this is Stevie.

I just recently have a new surgeon and new oncologist, and when the oncologist sent me to the surgeon, that surgeon came in the room and he knew all about me before we even talked. I mean, he would say, "Well " you know, and he would say things that made me realize that he had read my file. He knew about me. He knew me as a person. And that right there just kind of bonded us, because he showed that he really cared. And I wasn't just a number who just happened to come through his office. I was a person with a name and I had a problem and he was there to help me with it.

ANDREW:
And he was dealing with you on a human level.

STEVIE:
Right.

ROBIN B:
This is Robin. I agree completely. I have a wonderful oncologist, and he knows every little aberration. He knows that I'm a control freak. He knows so many things about me. He takes an interest in me as a human being, not just as a case of lymphoma. And that's essential. Because you are a team.

JOANNE:
I agree. This is Joanne. They have to be with you, and you feel like they're fighting for you as much as you're fighting for yourself.

ANDREW:
And Joanne, if someone didn't feel that, they should get a new doctor?

JOANNE:
Yes. I'd get a second opinion.

ANDREW:
So, what can the cancer survivor do to get the doctor to do better if they aren't caring enough?

ANDREA:
This is Andrea. And I would say that one thing is, I'm not feeling comfortable with all the information I'm getting, and can you help me get past this so I can be a better patient and you can be a better doctor? It's okay to say, this is what I need and ask for it.

ANDREW:
Well said.

JANET:
This is Janet. I think you just really have to be yourself. You have to talk, you have to be open. And if the rapport is not there, you need to look elsewhere. Some of choosing a doctor is just a gut feeling and you have to trust your doctor before you can move on.

Betty, California

ANDREW:
Betty, we haven't heard from you in a while. What advice do you have?

BETTY:
Well, like I said before, get all the information you can on the type of cancer you have, and try and keep a positive attitude. And support groups, yes, I definitely believe in support groups because they really help me.

ANDREW:
Could I ask you just one question? I didn't mean to interrupt, but I know that you specifically believe in prayer.

BETTY:
Yes, I do.

ANDREW:
Some others have mentioned that. How has prayer helped you get through all this?

BETTY:
Uh, I know that God will see me through this, or go with me through this, together. So that I'm not by myself, you know? Prayer gives me great comfort. I know that we all don't live forever and I know that He'll be with me when my time comes. And it's very satisfying to know this.

ANDREW:
Anybody else? Dennis, or Joanne or ? Any comment on the power of prayer? Has it been a factor for you?

STEVIE:
Andrew, this is Stevie, and I am very definitely, very much a user of the power of prayer. And I, too, feel that God is never leaving me alone. He's right there with me, and something good will come out of this. I know that.

JOANNE:
This is Joanne. No one's mentioned too much about exercise. We belong to the senior aerobics, and we walk a lot and I think that helps release a lot of tension and get rid of that old cancer.

ANDREW:
Good for you. Dennis, any comment from you?

DENNIS:
Well, the power of prayer is definitely the strongest weapon on the earth.

ANDREW:
And I know you've said that you were a good guy, but you've become sort of a super leader and that found something within you, gave you an opportunity that maybe you hadn't taken earlier in your life.

DENNIS:
Oh, definitely. I never dreamed that I would be one day talking in front of hundreds of men, men and women, and their families and working for prostate cancer.