ANDREW:
Hello and welcome to the American Cancer Society's Survivor's Network, a service created by and for cancer survivors. The CSN as we call it is produced by Health Talk Interactive of Seattle. I'm your discussion leader, Andrew Schorr. I'm joined by our co-host, medical broadcaster, Gina Tuttle. Welcome, Gina.

GINA:
Thanks, Andrew. Today's topic, breast cancer issues for women over fifty-five looking back and especially looking forward. On the phone with us are four breast cancer survivors from across, the country, women who are all over fifty-five and have completed treatment.

GINA:
We'll talk about issues such as the need to get a second opinion, the importance of support Systems, how to preserve your self-confidence, how to plan for the future and enjoy every day.

ANDREW:
Billie joins us from Dallas, Texas. She's fifty-nine and it was three years ago that she had surgery for breast cancer. Beth is in Pottsboro, Texas, and is seventy years old now and it was about four and a half years ago when she was diagnosed with breast cancer and then had a mastectomy and chemotherapy. Janet joins us from Kingswood, Texas and Janet you're 56, I know, and had breast cancer diagnosed about four years ago and then had a partial mastectomy and chemotherapy and then radiation. Arlene joins us from Abington, Pennsylvania, where she's fifty- seven years old and she was diagnosed with breast cancer nine years ago and then had a double mastectomy, reconstruction, chemotherapy and then for awhile, took tamoxofen.

Billie, I know it was three years ago that you were diagnosed with breast cancer, it must have been a shock for you, your four kids, and all those grandkids. I think you have four of them. Tell us a little bit about that and then how you go on post-treatment and really cope every day.

BILLIE:
Well, when they diagnosed my cancer, I had never had a mammogram before even though my mother is also a breast cancer victim, and when I got the letter, I really thought it was a mistake and they asked me to come back in and have the mammogram done over again.

ANDREW:
And before you knew it, you were having surgery for your breast cancer.

BILLIE:
Right.

ANDREW:
Now here we are, three years later, Billie, that's behind you. For women who are listening who also have had breast cancer treatment behind them, what are some of your views? How do you go on a cope with all this in your past

BILLIE:
Well, I have a lot of very, very good friends and a strong religion - I'm Buddhist and have a very strong faith in my religion, and that has helped me cope. And most of my friends are also Buddhists and I'm lucky to live close to the Center so they come over here a lot, too, and so I've really coped pretty well with everything. Including, since I never did go back to work, financial things that - my friends helped ease my path and get me around when I've had - and things like that.

ANDREW:
So family and friends have played a key issue in your moving forward with this in your past. Billie, I know that you've had questions, you've had support from family and friends that has been a big help, and I know one of the issues that has come up for you is to continue to have self-confidence as you go forward with just one breast, right?

BILLIE:
Ah, yes, especially since I'm a very large woman, very large breasts, and it really was horrible to think that I was going to be walking around deformed and all that, but actually nobody pays any attention to it.

ANDREW:
Beth in Pottsboro, you've had mastectomy and chemotherapy, have these issues related to self-image and self-confidence been on the top of your mind.

BETH:
At the time I was having chemotherapy it was a shock when I began to lose my hair because it was quite long and had not been cut in 26 years, and my daughter took me to her beauty operator and had it cut short. Eventually most of it came out and I wore a wig and this bothered me a little bit, but I borrowed a blonde wig from the cancer center and my little grandson said, "You don't look like you a blonde, Mama." So I eventually got a brown wig to match what my hair was.

ANDREW:
Now, how about now?

BETH:
My hair is back; it did not come in curly, I'm sorry to say. But I do have hair. I've had reconstruction and this doesn't bother me. I go on. Life is wonderful.

ANDREW:
So you feel like a whole woman, once again?

BETH:
Oh, yes, yes. The reconstruction doesn't look all that great when I take a bath, but I just don't pay any attention to it. It doesn't bother my husband, so I have no worries about that. I have a wonderful husband and wonderful children - they've been very supportive.

ANDREW:
But weight gain after chemo I understand, was an issue, for you.

BETH:
The doctor told me I would probably gain weight, and I ended up weighing more than I had pregnant, and it has taken me until this year, its taken me four and a half years, to lose most of it. Its been heard to get if off.

GINA:
How did you accomplish that?

BETH:
By watching what I ate, by trying to exercise as much as I can. We love to go camping and hiking and we do lots of that in the summertime when we can, we can't this year because my husband's had heart surgery this year but we're planning next year. But, stay active, we have a small two-story cabin on Lake Texoma so I go up and down the stairs 50-60 times a day probably, and that helps a lot.

ANDREW:
Lets have Janet from Kingswood, also in Texas, like you, Beth and also, like Billie, join the discussion with us. Janet, you were diagnosed four years ago I understand and had a partial mastectomy and chemo and radiation, so you went through the wringer, there.

JANET:
Laughs, Says yeah.

ANDREW:
I understand you also had a lot of lymph nodes removed, too.

JANET:
Yes, I had all the lymph nodes removed but they're all negative, so I was very lucky.

ANDREW:
Great, now you go on with this in the back of your mind, though, this fear of recurrence, I understand.

JANET:
No, the only time I really think about it is just before my six months checkup. I'm up to six months checkups, but ah, I feel very blessed. My husband's sister had surgery the day before I did for ovarian cancer, and we kind of kept each other going through chemo and everything and I worked with the cancer, breast cancer support group locally in Ambald and I just hope I've helped a lot of women. I see so many women younger than me that have to go through this as little children and I just think I was blessed that my children were grown at least. I think women who have young children are really the courageous women that have to go through all of this.

GINA:
You had some help from a magazine, of all things. Is that right?

JANET:
Yes, and I wish I'd learned about the magazine sooner. I t wasn't until I'd been through radiation that I discovered Coping Magazine, which is for all kinds of cancer, and I'm a school nurse and I worked, even though I was going through chemo, although I missed a lot of days, and I always felt guilty because I'm so tired, I just couldn't drag myself to school, and it wasn't till I read some of the articles there that talked about fatigue for a lot of cancer patients, comes three to five days after their chemo treatment, and this, I can't tell you how much better I felt. I'm one of those hardworking people that doesn't like to miss work, but the magazine I think is just wonderful and I've shared it with lots and lots of people. I think H and R Block, Richard Block's book is wonderful.

ANDREW:
Let's introduce Arlene from Abington, Pennsylvania. Arlene, you had quite a bit of treatment too, I understand, a double mastectomy and then reconstruction it was nine years ago that you went through all this. So how have you gone on with it and how has it worked out for you? I understand cancer has played a role not just in your life but in your family's life.

ARLENE: Yes it, has. At the time I was diagnosed, I was a widow. My husband died at age forty-one, so I was a widow and had just started dating a fine gentleman when I was diagnosed. I was given a choice of which procedure to go with and I decided to go with the mastectomy only because I didn't want to face down the road having to go through this again. Indeed, it was a good choice because they found a tumor that they did not realize was hidden behind the other one, which they probably would never have found until it was large. And I had so much support and love given to me through all this that it made me feel very special. I m sorry to say it took cancer to make me feel self-confident and that people cared and loved me so much, but I think it certainly did bring out the best in all my loving friends and family, and also my support groups that I attended were very gratifying and I just went on like the rest of the ladies - talked about. You get a second chance in life and I think you enjoy it then and appreciate things a lot more.

ANDREW:
Let's put some issues out to all of you ladies and just identify yourselves. Just think at top of mind. Now you're going forward every day, what are the things that played a role in your going on with your life? Or concerns you have that you might want the other ladies to comment upon? I'd really like to focus our discussion today for women who are not newly diagnosed but are post treatment. So for women in your age group, fifty five and older, what would you say to them with breast cancer in their past that you figured out on your own? Or things that you've been wondering about, yourself. How about you, Janet?

JANET:
Well, I feel very confident. I feel you have to believe that you're in remission, I like to say cured, when people say you have breast cancer I say no, I had breast cancer but I don't have it now. I think you just have to enjoy every day and appreciate all there is in life. You can't dwell on it because you can worry yourself sick. But I do think on the other hand if you're worried about a symptom, don't hesitate to go to your doctor. I think that's vital. I think a lot of us pooh-pooh any possible side effects of symptoms for medication. I think that anything new you do need to check with your doctor on.

ANDREW:
Arlene, how about for you?

ARLENE:
Well, I think things have changed a great deal and thank God for it. I want every doctor to watch Patch Adams - so they get a taste of what the patient is dealing with emotionally. I did not have that and I kind of look back and wish I wasn't so intimidated by doctors. I'm not that way now, thank you. But at the time I was very very intimidated, mis-diagnosed for two years because of it. So I really feel that doctors need to be more emotionally involved or at least guide us a little bit to deal with a lot of the emotions that we need to go through. I didn't get that from doctors but like I said I did get it from my support groups. I really wish doctors were more in tune with that situation. I think it would be a great help to the patient.

GINA:
Billie, I'm, wondering if this experience in dealing with the doctors, all you've gone through, is empowering, if you end up, after all you've gone through, with a sense of more control over your life.

BILLIE:
Well, since I'm also a diabetic, I'd already had a lot of experience with doctors and believe me, they do not intimidate me. I do real good to get this call in. But I was lucky both times because I had cancer of the endometrium I was lucky both times I had mostly women who all know that they could have this themselves someday. They were very supportive, in fact, some of them are still my friends. They come around and visit. They call me and things. But, you have to learn not to let anyone intimidate you and to insist on taking care of yourself and when you know that something is supposed to be, then you tell the doctors , nurses, dietitians, or whatever know we're not going to do that.

ANDREW:
And that is just as true, having cancer in your past, and being post treatment.

BILLIE:
Right, because you still have to go and deal with people, you know, medical personnel, and it seems to me like the majority of them think the patient just doesn't know what they are talking about, but most of us do - most of us read and do research whatever is wrong with us. We know what's wrong. You know, especially with the diagnosis, you know what your treatments supposed to be, and you know, medical people can make a lot of mistakes. You have to insist, no this is not right, this is not what my doctor told me or insist to the doctor, no I can't do this. They will not do reconstruction on me because of my diabetes has destroyed my immune system. So this one nurse, or one plastic surgeon, told me that you have to go out and walk everyday and I said, no I don't think so, I'm not going to do this, because I have other problems. You just have to not let yourself be intimidated and take care of yourself.

ANDREW:
Well, let's talk about that, Beth, how about for you, or anyone who wants to chime in, how do you take care of yourself mentally, diet, exercise, keeping informed about breast cancer or God forbid, to worry about a recurrence - how do you take care of yourself?

BETH:
I try to stay informed of all the newest development, and since I am on the board of the American Cancer Society in our county, I do get a lot of information that way. I read the papers, listen to news. But I think anytime you have a question, you need to talk with your doctor. I agree with all the ladies about this. Don't keep it to yourself, don't worry about it. Worrying can do you more hurt than anything. So, if you have a question, you need to ask your doctor about it. I have a wonderful doctor, a wonderful surgeon, the staff at the cancer center were very supportive, they still are. But I think one thing is reaching out to other people, as I said once some of the people I thought would be supportive, were not. They seemed to not know what to say to me, or they might catch it, which is a funny thing a lot of older people think. The person who reached out to me the most was a young woman in her thirties who had gone to school with my son. She called me the third day after my first chemotherapy treatment talked to me long distance for over an hour, and said, you're gonna get tired. The people you think will visit you, won't. You need to rest. You need to exercise all you can, don't worry about it. She sent me a wig, she sent me a turban. She did more for me than any other single person except my doctors and my family and I feel like the more we reach out to other people, the more it does for us. It gives back to us also and if I can help someone like she helped me, that's a true blessing.

ANDREW:
Beth, have your friends changed at all because of that life-changing experience of breast cancer?

BETH:
The ones that I thought would - it just kind of went by the board. You know, after I was better, after I got through chemo, I was through with that, but it was something that they just didn't talk about. I talk about it to anybody. When we're hiking in the mountains, I wear my Relay for Life T-shirt, and I've met lots of people who've been in the relay, either with cancer or just worked in it and talked with them. I talk with lots of people and I say look, I'm doing great. There are more of us living than having had cancer than dying from it now. So don't be afraid of it if it comes your way. If you have it, hang in there.

ANDREW:
Arlene, are there any funny stories or a sense of humor that's helped you go forward as a cancer survivor?

ARLENE:
Yes, in fact my granddaughter just left and I shared this experience with her. She was only four at the time. She was very inquisitive even at four her mother, my daughter, had explained to her about what was going on, and when I came home from the hospital, I'd collected shells over the years, and this innocent four-year-old came into me room and she said Gammy, here's something that will fit in there, and you'll look just like you always did, with a shell that was like a breast. Well, I told her this story just prior to talking to you people, and she burst out laughing. And she said Gammy I think I remember that. But you know, here out of the mouths of babes - she did not see a problem. You're gonna be fine, Gammy. But the whole thing is and I kind of chuckle even now, when we're not aware, and I have an autistic grandson so I've had some difficulties, but I look at people in a different way, especially handicapped people. I think it makes you more aware that there are people out there with a lot greater problems than yours. And, indeed we have to deal with it. But I think that talking to the ladies and hearing their experiences, it's much to be thankful for because we have a good attitude, and attitude is what I feel is the greatest way to go - keep a positive attitude.

GINA:
Arlene, you've obviously got a great attitude. You've talked about dealing with children. One of the hardest things to talk about is dating. You were widowed at the time, you said you were dating. Any advice for women who are uncomfortable about that?

ARLENE:
Well, I felt very uncomfortable sharing this with the gentleman because we had only known each other about a year at the time and I kind of was very forward with him and asked him if this was going to change our relationship and to please let me know now before we both put any more time into developing our relationship and the words out of his mouth were, I love you more as a person now than I could ever love you any other way. You have proven that you can be strong and he said this is not a disability, I don't look at your body, I look at you what's inside. And he was with me all this time and he would still be but he passed away in December. So I was blessed with a man who really took his love seriously with me, and I think that his love and support also got me through it. It wasn't the easiest way to go as a single person, I didn't want to burden him. But when we spoke about it and came right out and told our feelings about it, it was a great thing to do because it got everything out of the way and we went on for all those years and we did a lot of sharing. I was blessed.

ANDREW:
Janet, down in Kingswood, Texas, you had said that a magazine had sort of helped you get your act together and know that you were part of a community and could just go on with your life. Any other specific things that have helped you that you could recommend to other people so that you could put cancer behind you?

JANET:
I think I was very blessed, being in a school situation, my faculty was behind me, I mean there wasn't a week that went by that somebody didn't do something, I mean they made sure I got a lunch break, which is rather unusual in school nursing to get a lunch break. I think just children, children are what keep me, I think that one of the funniest things that happened when I was going through chemotherapy was this little girl who comes in every day for a breathing treatment for her asthma. She looked at me one day and she says, Ms. Mansfield, did you know that your hair is three different colors? Which I had to keep from laughing which it was - I couldn't color it so there was the color-color, regular color, and gray hair! You know, the kids and your family and your friends, you just have to enjoy every day, because life is too precious.

ANDREW:
Now, this was 4 years ago that you went through treatment, how about now, does it come up in your daily life or in thoughts or conversations with friends and family now?

JANET:
Well, yeah, it does, cause - and my friends with faculty and family are wonderful, I mean we share things about it, in fact, I put out a memo when we had the Relay for Life here in March in Ambald and collected over $300 from my faculty alone, just for breast cancer research. My whole faculty I think is more relaxed about cancer, I don't think they're as afraid of it anymore cause they've seen me go through it. They are all getting their mammograms, I mean I've had some who were afraid to ever go for a mammogram, and now they, with a little push from me they've gone and done it, and I think if anything, what I will do is make people realize that there is life after cancer, cause I think there are still a lot of people who have that stigma, that cancer is a death sentence, and it's not anymore.

GINA:
Billie, you said that your friends helped you through it a great deal, and I understand that initially there was some curiosity about it.

BILLIE:
Yes, when I first got my prosthesis, I went to chant in gratitude to the Buddhist Center here, and I was up on the stage with all these women and we were chanting, and for some reason, all the men got up and left and I said, "Oh, I got my new titty today, it feels just like a real one," so everybody had to come and feel. Then one of the women said, we'd better stop this before those men come back in here and think we're all funny.

ANDREW:
I'm blushing.

ANDREW:
Now are any of you involved in support groups, and has that been helpful?

ARLENE:
Absolutely.

ANDREW:
Arlene, you have?

ARLENE:
Oh, yes. I have been with I Can Cope support groups. I belonged to another cancer survivors support group - I joined them all.

ANDREW:
So support groups are not just for people currently in treatment, in your view?

ARLENE:
Oh, no, I still continue to go to some of them, because at times there are things that come up that I really need to deal with and I find going to the meetings has made me much stronger and have been able to face a lot of things more, because you do have people who've been through it and maybe even longer than I've had my cancer, and it's just very rewarding and I can recommend support groups more- they are wonderful.

GINA:
How do you find support groups and how do you choose which one is right for you?

ARLENE:
Every hospital has a listing of different support groups for any kind of cancer, of course there are many support groups for many other things. Age factor is usually mentioned so that helps to, if you see a group that says from forty to sixty, you might usually get put in the age group where you would feel comfortable. Nothing has been brought up but this is another thing we've commented on, male cancer, breast cancer. Our organization has dealt with two men so far with breast cancer and a young boy of 17. So now we're trying to get some men to volunteer for these particular boys and men who are dealing with it because it's very difficult for men because I don't think they can relate to too many other people. So this is a thing I wanted to bring up also, that I've been seeing more men developing breast cancer. In NT we have one volunteer so far who has gone to the lab and see these boys and men. But I don't know if there are any other ladies who have had these issues in their support groups or not.

ANDREW:
Let me ask Beth a question. This is a one-to-one opportunity we have as people listen to our discussion. What would you want to say to somebody who is seeking support now who is a cancer survivor, maybe two, three, four years or more post breast cancer treatment, who is still looking for a little help in going on.

ARLENE:
I would advise them to talk with the cancer center where they received treatment, the hospital where they received treatment, and find those support groups that are out there. I work with Reach to Recovery also, but that's a one-time thing really maybe twice, and an ongoing support group can just give you that feeling - the group that we had was all types of cancer and we just had a comfortable and supporting feeling. If someone felt a little bad, we talked about it, we encouraged them to see the doctor, to do what it seemed best to get over a rough spot. We encouraged them to get out more, to visit with other people, most people that are still looking are not interacting with people enough.

GINA:
It sounds like some of these issues come back, it's not something you can deal with it once and say, okay I've dealt with that, it's not going to bother me any more.

BETH:
That's right. One of the hardest things for me has been one of the original members of the support group I was in passed away this past December and that's been a very hard thing for me. I loved her dearly and she had not only breast cancer, she had colon cancer and it metastasized to her lungs. I needed support then. At that time, most of our group had drifted away or moved away and so I got my support from the Cancer Society here, the board meetings and so forth, and my family and my church, because she was a member of my church, also. But when things like that happen you do need more support, you need a little extra comfort, you need a hug. I think an actual hug can make such a big difference. When my husband was so critically ill a couple of months ago in the hospital and I was down as low as you could get, one of the nurses stopped me in the hall and she said, you look like you need a hug. And she hugged me, and it made all the difference in the world. I know that just being with people, not sitting at home and worrying and having questions, to be out and with people and to have their support and to give them your support, makes so much difference. It's so important. And when we give we get back.

ANDREW:
Billie, how about you? Do you have low points sometimes and need to ask for that kind of hug that Beth was talking about and how do you do it?

BILLIE:
Oh, I am really, really lucky - I have friends who hug me all the time. We have one man that belongs to my center, and he hugs everybody. I told his wife one time, I said, your husband has the best hugs in the world. And she said, yeah, and he don't break!

ANDREW:
So, how do you ask for, I mean are there times though when you say I need a hug? So how do you do that? What would you recommend to other people?

BILLIE:
Oh yeah, I have friends that I'm perfectly capable of just walking up to them and tell them I need a hug. But I tend to be more loving I think toward other people now than I was before all these problems I have. I think I'm a more loving person so people want to hug me. But I think a hug is the best medicine in the world, no matter what's wrong with you.

ANDREW:
That's a question I was going to ask all of you, just whoever wants to chime in, and that is, having had breast cancer in your past, how are you changed so that you go on in a positive way in your life, and based on that, what would you recommend to other women who are also breast cancer survivors.

BILLIE:
Cherish every day. I'm just so grateful for every day that I didn't have to take chemotherapy. I didn't have to take radiation, my cancer is as far as they're concerned, cured. I don't have to go back for a year now, and that it was caught in time. I feel like every moment that I have is a gift, and I appreciate it.

ANDREW:
Billie thank you. Other ladies?

BETH:
Don't put things off. Seize the moment. Seize the day, as they always said. Don't put things off. Write that note that you thought about. Give the hug, give a telephone call. Just enjoy every single moment and make the most of it.

ARLENE:
This is Arlene again and every day I talk to my children I tell them how much I love them. My son gets a little uncomfortable but I said that's too bad, I'm going to let you know it now. Even with family, after a conversation; I love you, guys, and it makes me feel good and I know it has to make them feel good.

JANET:
This is Janet and I agree with all the ladies. I tell my children much more often how much I love them and I don't worry about the little things any more, like I used to. I just enjoy every day and as everyone else said, hugs are the best therapy. My breast cancer support facilitator is a real hugger and I would recommend support groups to every woman. You don't have to say anything when you go if you don't want to, you can just sit and listen and you'd be amazed how soon you'll be sharing with others. It's wonderful.

GINA:
Great advice for each one of you. Thank you so very much. I guess it's a lesson to everybody whether they've got cancer or not, to live every day and let people know what you feel about them.

ANDREW:
I think Janet were just saying, if you're someone who maybe hasn't talked about it for a long time though, you don't have to feel that you have to keep this bottled up inside. Let me ask about that, there maybe somebody who will call in and listen to our discussion, who's lived with breast cancer in the past for a number of years, has been holding it inside. Any view about that? Is that okay, or from all of your experience where you're pretty public about it, do you think that's been a benefit about speaking out?

BILLIE:
Well, I think it's been a benefit to me but I'm that kind of person that likes to talk and I'm open with people, aggressively friendly. And some people are just not that way. I think it would depend on your personality.

ARLENE:
Absolutely.

ANDREW:
Arlene, you'd say that?

ARLENE
Yes, I do. I believe that because I'm a very outgoing person also and therefore I'm very eased talking about my disease and sharing about it. But also educating other people that need to deal with it down the road. But I do believe it has something to do with your personality. I've found people in my support group who never talk and they are the ones I really would like to get through to. Because I think everybody needs to talk about it.

ANDREW:
Just one final thing. I just want to poll you all as we close here, is, let's start in reverse order with Arlene. Arlene, you're sort of at the bottom of our screen here listing your names. Arlene, your outlook for the future, having had breast cancer in your past - positive? How do you feel?

ARLENE:
I feel very positive. I think I am a survivor and I think my attitude and my wanting to go on the see my grandchildren married and have children and be around to enjoy life. I think that's how I live and that's how I think I get through every day.

ANDREW:
Janet?

JANET:
I agree. I have a very positive attitude and I think since I've had breast cancer, I live each day and I look forward to as the other lady said, my granddaughter is only a year old and I go and visit her a lot more than I probably would have, you know, if I hadn't had cancer. But I just feel I'm very blessed to enjoy my grandbaby.

GINA:
Beth, how about you and your future? How do you feel about it?

BETH:
Oh, I'm very positive. I have lots of plans for the future. I just, I love every day, I love my family, and I tell them I love'em constantly, talk to them long distance every day. But I have all kinds of great plans. We're planning to go camping again next year. We camped across Alberta and British Columbia to celebrate our fiftieth wedding anniversary last year and we make big plans and I'm making lots of 'em and I will forever.

GINA:
And Billie, what about you and your future?

BILLIE:
Oh, same thing. Oh yes, I'm very positive and I'm going to enjoy every day that has been given me.

ANDREW:
Amen. Well, with those comments, ladies, we'll have to end this very rewarding discussion. It's just the tip of the iceberg, but, we certainly want to thank you, each of you for sharing your personal insights and experience to benefit others. And, of course, thanks to my co-host today, Gina Tuttle. For the American Cancer Society's Cancer Survivors Network, I'm Andrew Schorr.