Recorded June 19, 2002

Breast Cancer, Female, Age 40-50, After Treatment (English translation of Mandarin-language show)

Joyce (host)	Lucy	Lin-Lin	Angie	Sue

Welcome and Participant Introductions

Joyce:
How is everybody? My name is Joyce Hsu. Welcome to the American Cancer Society and our Cancer Survivors Network. I am the host of today's program. Today we are going to have a discussion with women over 40 or 50 years old, Chinese women, about their feelings when they got cancer and after treatment. We are delighted that today we have four leading ladies, I call them--to join us for this program.Today we will talk about several major topics. One is after you have cancer, do you feel that there are positive influences in your daily living and your life? Also, we will talk about--of course after each of us gets ill, we all will--after treatment, the one thing that we fear most is the disease coming back for us, so this recurrence, how to deal with the fears of recurrence. It is about when we--during our treatment, how do we maintain our optimism? For instance, the people who have just detected breast cancer and are listening to us [we are] giving them encouragement, letting them know how to deal with it. Also, we will talk about the impact of breast cancer on our marriages and relationships. Lastly, for instance, after we finish treatment, how do we help other people in our community? Today I will introduce our first leading lady Lucy. She is 54 years old, and she now lives in California, just moved here from New York. Lucy is someone I know. While in New York, through her efforts, she established the Chinese Chapter of the American Cancer Society, and many so-called cancer support groups. Over there we all have great admiration for her, so there is a fun saying: "We love Lucy," just like the old TV show, "I love Lucy." The reason I introduce her like this is because I hope to give an idea to the audience what kind of woman Lucy is. She is married, with two children. Lucy, welcome to our show.

Lucy:
Thank you, Joyce. My husband often says, "I love Lucy." [laughs]

Joyce:
All right, all right, we all love you, OK? Lucy, can you use a few words to tell our audience how you discovered that you have cancer, and what kind of treatment you received?

Lucy:
Yes. In 1987, when I returned to the U.S. from the Philippines--because my husband is a minister, we are preachers--within six months of returning from the Philippines, I discovered that I had breast cancer. The way I discovered it was because I saw [something on] television about the importance of women doing breast self-exams. Therefore each month after menstruation, during my shower I would put on some soap and check myself regularly. I found a very small, a hard little thing like a green bean. It appeared on and off. The next day I went to see my surgeon. He told me that you are Asian, young and have no family history, so do not worry. However, my knowledge told me about the mammogram, the test for breast x-ray--[I thought] maybe it would help. He said, "If that would make you feel better, then go ahead and do it."After the x-ray, a little hard mass was discovered, and it had calcified. And then he was concerned a little. He said there was a 10 percent chance that it might be cancer, so we did a biopsy. The result from the biopsy proved that the hard mass, the little hard cyst, was cancer; it was not calcification. Afterwards, I discovered one of my lymph nodes was infected, so I received half of a year of chemotherapy. After nine months, I felt like doing a reconstruction, so in 1988 I did the reconstruction.

Joyce:
Thank you, Lucy; you have explained it very well. I think our audience can learn a few things--one is the importance of mass media. From television one can see our women [doing] breast self-exams. And another lesson is that sometimes western physicians might ignore our Asian women--they think it is unlikely for us to get cancer. And then Lucy, she insisted on doing an x-ray. This is a very good and correct attitude, thank you.The next leading lady is Lin-Lin. Lin-Lin is 51 years old, and she lives in California. Like me, Lin-Lin is a member of our breast cancer support group, which is called the Joy Club. She is a good friend of mine. She is married, has a daughter. Lin-Lin, welcome to our show.

Lin-Lin:
Thank you.

Joyce:
So in 1995, when did you find out that you had cancer?

Lin-Lin:
In 1995, around April, when I went for my physical exam and did my regular pap smear, the doctor touched and found it. At the time he thought it was rather small, it was not clear whether it was there or not, and before I had had an operation to take out a cyst. It was benign at that time, so at that time when the doctor touched it, he said, "It is very possible that just like before, it should not be a problem--but since it is there, we better take it out."

Joyce:
Yes, so there you were. What kind of surgery?

Lin-Lin:
In the beginning, the doctor said, "Let's do a needle biopsy first, to see if it was normal or abnormal." The result of the needle biopsy discovered there was some abnormal--it had some abnormalities, so the next step would be to have an operation, and then--it was to do a surgical biopsy. It turned out--the lab test turned out to be breast cancer.

Joyce:
What kind of treatment did you have after surgery?

Lin-Lin:
After surgery I discovered--of course the first time I discovered cancer. And I did the second surgery--the second time was to find out if the lymph nodes were infected. And then I discovered--I took out more than 10 of them--one of them was infected. Afterwards I had radiation and chemotherapy. I have had half a year of chemotherapy treatment.

Joyce:
Thank you. From here, immediately our audience will understand that sometimes there is something benign inside the breast--I mean a benign tumor. Do not ignore it and think from now on it will be your own--all the tumors that are benign, always be aware that if any new symptom appears, hurry up and see a doctor. As Lin-Lin mentioned, a lymph node among the others was infected. Thank you, Lin-Lin.Our third leading lady is Angie. Hi, Angie.

Angie:
Hi, Joyce, how are you?

Joyce:
How are you? Angie is 43 years old, married. She has two children, one boy and one girl, really perfect, a son who is 16 and a daughter, 12. Welcome to our show. Angie, can you use a few words to tell our audience how did you discovered your tumor?

Angie:
OK. How's everyone? I am so glad that I have the opportunity to share my experience with you. When I was reading the World Journal [a Chinese language newspaper] one evening in December 1998, there was an article which pointed out: "Do not think you will not get cancer just because you are an Asian female." I said, "OK, let me try to examine myself." And then I found a lump in there. The next day I went to see my family doctor, my family doctor said, "OK, you don't look too good, you better do a mammogram." After the mammogram, right away the doctor said he thought it was cancer, too. Afterward I arranged to see my chest specialist. He did a needle biopsy on me, confirmed that it was cancer, and then he gave me two options. He said the first option is complete removal, "you would not need to do chemotherapy, only radiation," and the second option is partial removal, "but you would need to do both chemo and radiation." Because when you find out that you have cancer, you're confused and do not know what to do. Later I decided to go for a second opinion; the second opinion doctor said to me, for a case like mine, only partial removal should be fine, but because I was still young, I was 36 years old then, I would need to do chemo and radiation. And then, of course, I did chemo and radiation.After treatment, and then in the year 2000, I discovered there was discharge coming from my nipple. It smelled like milk. I went to see my breast surgeon. He thought about it and said, "This absolutely will not be cancer, it may only be caused by the blocking of the gland." I had seen many doctors: I saw an oncologist, I saw a breast surgeon, and I had seen all kinds of doctors. None of the five doctors had found out, none of them would say, "OK, it is cancer." And then in 2001, the smell of discharge had changed, and I said OK, I could not delay it any longer, I must go to see. Then I went to see my doctor again, and the doctor said, OK, we would operate now. The lab result of the operation was very disappointing--it turned out to be skin cancer. And this--I want to let people know--if you don't feel right, you must go to see a doctor immediately, don't be like us to delay for a year and then [find it has] turned into skin cancer.

Joyce:
Thank you, Angie. Here [you] will know right away, the mass media, it has educational value, so she was alarmed when she read the article in the newspaper. And there is another thing which I find encouraging: Angie has had two different types of cancer--one is breast cancer, the other is skin cancer. But she still surviving very well and living a very exciting life, so it is an encouragement to all of us.Our last guest is Sue. Sue is 50 years old, also lives in New York. She has just said hello to Lucy, a very warm hello, so I understand she is a friend of Lucy, a dear comrade in battle. We all are dear comrades in battle. And about Sue, she has a son and a daughter. It is indeed a model family. Her daughter is 23 years old, a son 19. Sue, how are you? Please briefly introduce yourself.

Sue:
Yes. I am Sue, how are you? I am a single mother, so I take care of myself especially. In 1997 during the regular check-up, it was discovered that there was something as small as a grain of rice in my right breast, and my doctor had taken care of me for many years, so he was very alert and told me to go for an exam. I went to look [it] up on the Internet and found a breast cancer clinic. I went there and did a needle biopsy. It was indeed breast cancer, but fortunately it did not spread to the lymph nodes. The lymph nodes were not infected. You can say that mine was a model case. As a model case, I suffered very little. First, I only did a procedure. I did not stay at the hospital; they let me go home the same day. Second, I only did three or four rounds of radiation, I did not have chemotherapy. So everything went smoothly, from 1997 to now. It has been five years, because it was detected early. When I had a second opinion, second opinion was that--maybe the doctor was very honest, he said to me, you need to remove the whole breast. But my first doctor said it was unnecessary, it was so small, why remove it? Because he said to remove it or not, the treatment outcome would be the same--unless you really have a very big lump--then you need to remove [it].

Joyce:
Thank you, Sue, thank you very much. Sue is a single mother, so to any single female who is listening to this program, we all should follow her lead; take care of your own health. She lives very independently. Often when we [work with] some single mothers or single women, or unmarried women, we will encourage them when they are sick. I mean a woman does not need a man in their life to feel complete. We are a complete person all by ourselves, and for her--it was good when she discovered the tumor, she was very--the tumor was very small, so she did not suffer very much.

How Cancer Changes Your Perspectives in Life

All right, now we will continue with some games of questions and answers. First we will talk about the cancer's impact on our perspectives in life, appreciation of family. In arranging our lives, what are some of the positive effects, we know of many negative effects we feel may be--like when your health changes for the worse, or there is fear of death, but, when I talk with survivors, many of them have some positive changes. So can we talk about it? Maybe start with Lucy? Please talk a little about this.

Lucy:
I can say that the experience of coping with cancer changed my life. I still remember when I spent my 41st birthday in the hospital, I prayed to God and made two pledges--one was to write a book on my experience of coping with cancer, the second one was to establish a breast cancer support group. At the time I was only hoping, and the outcomes are far exceeding what I wished for. The book was published later in 1991, and in 1992 the Chinese American Cancer Society was established. Gradually I become someone who is brave and willing enough to dream big, and I really changed to not--I will not be discouraged by any surrounding influences. I feel that I am living well and I can do a lot to serve the community.

Joyce:
Thank you. Lin-Lin, would you like to talk about if you had such realizations?

Lin-Lin:
I discovered that afterward I also joined a volunteer [group]; it is the Reach to Recovery volunteering activities.

Joyce:
--It is called Reach to Recovery?

Lin-Lin:
Right, and I discovered--although I have only donated a little of my time, I feel that I have gained a lot. Because, one, I have met many new friends, second, because I connect with these friends, I will continue to update myself on the information on fighting cancer, a little knowledge. So this--for instance, [a Chinese tale] says: "Sai--the horse of Old Mr. Sai--When the old Mr. Sai loses his horse, how do you know it is not a blessing?" That is to say, like myself. It is also [worthwhile] to encourage yourself to update [your] own information all the time, and then to contact--to go out and get to know the others. I feel that in the whole process, the mood and do not put too much pressure to yourself, because according to my very brief encounter with friends, I discovered that many conditions are caused by stress. Stress makes--I mean stress seems to be able to make the bad cells in your body reoccur faster. This is only my small speculation, but I do not know if it was supported by the medical practice. However, the way to live your life should be taking it easy, do not put on too much pressure.

Joyce:
Right, right, right, really, for instance, this: why do we get cancer? Up until now, no one could explain to us clearly about where the disease comes from--and we do not know if it will recur. How long is our life expectancy? We really cannot tell at all, but I feel that it is not worthwhile if we live our lives full of worry each day. Perhaps our lives have already been shortened, but to live in agony is truly not worth it. So you would rather live happily every day--but do not ignore your health, all right?

Lucy:
Joyce, Joyce, this is Lucy. I always advise patients that if we did not believe, we would not have the right to be pessimistic, because it would be double jeopardy.

Joyce:
Yes, yes, what you have said is very good, absolutely right to the point of what I have said, yes. Next I want to ask Angie, what do you think?

Angie:
I am a very laid-back type of person, but since I got cancer, I realize that whatever you want, you need to do it immediately, don't delay. I have changed quite a bit. We usually are--mothers, usually children come first, husband second, and then always putting myself last, but I feel this is not right. After I got sick, I thought being a little more selfish would be good for me, take care of myself first, so I will have the strength to take care of someone else.

Joyce:
Very good, very good, so after you give vitamins to your husband, to your son and daughter, you need to have some vitamins, too. Good, good, good. And Sue, do you have anything to share?

Sue:
I--same as Lucy, originally I was more a moody type of person, but after my illness, knowing that life is uncontrollable, I became stronger and more optimistic. Both Lucy and I are--I am under Lucy. [laughs] It is like "one person speaks out and a hundred follow." Total support. If I was asked to help, I would do so, we were a very a good team.

Joyce:
Yes, good, thank you. Later I will ask some questions, it may not follow completely the same order as before. Maybe I will do a sudden attack, so all of you need to pay attention.

Guests:
We are ready. [laughter]

Joyce:
Sometimes I think--sometimes during treatment, maybe I was not aware that during the chemo treatment, my hair would fall out--usually you would feel a little depressed. I want to ask, how did you get over the dark mood and return to the bright side? Let's start with Lin-Lin.

Lin-Lin:
Actually I am a little less sensitive [about this]. At that time, in spite of the feeling about my hair, I was quite optimistic, because I felt that after losing my hair it would grow back again. When I had treatment again, it just--the company [employer] was very good. I was on disability, resting at home, and I did not go out.And at that time my mother--I am grateful to my mother. She came all the way from Taiwan to take care of me. It was a good period of time to relax for me, because I did not have to do housework, did not have to cook or go to work, actually I had a very good time. [laughs] So this--in terms of hair, I did not care very much about my hair, because I knew they would grow back. So at that time I was not very depressed.

Joyce:
Yes, very good, yes. So she was already more optimistic, so during the process, she was not very depressed. When hair falls out, I have never seen any woman who lost her hair but never have it grow back, so your hair will grow back definitely. Don't be pessimistic, take advantage of this time to shop for a few beautiful wigs, turn yourself to Marilyn Monroe one day, and Elkie the next. Your husband will feel, oh, what a beautiful wife. So this, you can overcome this. And I want to ask, Sue, at that time did you have a depression period? How did you get over it?

Sue:
No [depression], because first of all, I did not have to stay at the hospital, nor did I have chemotherapy treatment. The whole thing to me was like catching a cold.

Joyce:
Right, so you are really, really very--light. "A light boat floats past 10,000 mountains." [Chinese expression] Very, very fortunate. What about Angie?

Angie:
Before chemotherapy treatment I had talked with many survivors over the phone. They told me, "You need to be mentally prepared. Your hair will fall out, and you will feel sad, but it does not matter, and it will pass." But when you experience it and see a bunch of hair lying on your pillow, you will cry, you see? Before this, I was optimistic and vain. Of course, it is unavoidable that you will be sad when you see your hair fall out, it is a natural response. And then I bought many beautiful wigs. I know that there are plenty of wigs in Taiwan, they are inexpensive and beautiful. They are expensive in the U.S., but in Taiwan they have many and they are beautiful. My friend sent me many of these wigs. And you wear it out. Each day you--I have never had long hair, but when I wore the long wig, I felt very happy. My dream come-true, I have long hair. It is fake, but it is pretty good.

Joyce:
Yes, there is a thing called "look good, feel better" within the breast cancer support group of the American Cancer Society. The translation would be varied in different locations. I heard that America--New York's translation is "…shiu zha ren." We in California call it "rung guan huan fa," so these are two very good programs.I want to take this opportunity to tell you a joke. It is about my hair. At that time my husband traveled a lot. Sometimes he would go away for a month. I was doing chemotherapy at the time and lost all my hair, but he did not know. And usually when he came home, he'd like me to go with him to a hair salon, and get a perm or color the hair, et cetera. So he--at that time when he returned, as soon as he dropped off the luggage, he said, "Mrs., let's go to the hair salon." I took off my wig and said: "Sorry, I have no hair to serve you." [laughs] [In Chinese, "hair" and "way" are pronounced the same.]

Guest:
You mean "hair"?

Joyce:
Yes, yes, this is--we use it as a joke, and he was shocked, because he went away for a month without knowing that my hair had completely fallen out within that month. And then--have I forgotten anyone?

Lucy:
You forgot Lucy.

Joyce:
Lucy has not spoken yet, hurry, hurry, and let's have Lucy speak.

Lucy:
OK, a joke about wig. We all go to church on Sunday. There are four people in my family; three of them were downstairs waiting for me to come down. I was rushing to get dressed and went downstairs. They stared at me and yelled, "Mom, where is your wig?" because I had forgotten to wear my wig, and we all laughed together. [laughs]

Joyce:
Yes, so your kids were helping you. Now I just thought of another joke. There is an old grandma, it is "old grandma," and she is--after a mastectomy, of course, she has not done the reconstruction, and she wears a prosthetic, and it is the silicone type. It is hot in the summer. She takes off the prosthesis when she's at home. Suddenly someone is knocking at the door, someone is knocking, she wants to--she cannot answer the door because she can't find her prosthesis, so she rushed to ask her grandchildren: "Hurry, hurry, help grandma to find my breast." [laughs] ["Grandma" and "breast" are pronounced the same in Mandarin.]

Anyway, this is what we call "black humor."

Talking with Your Family about Your Cancer

The third question is this: during the treatment period, our family stayed with us through this very difficult period of treatment. They will have fear and sadness, they will be very worried: "Will mom go away, will I have a mother in the future?" So how do you help them to overcome all these [fears]? Shall we start with Angie?

Angie:
OK. Because I have two children, I told the teacher at the school, "OK, I've got cancer." Their school teacher arranged for them to see a psychiatrist, and also the mother of a student, because she had also had cancer and survived. So the school had special counseling services to help the children, and said, "Don't be afraid. Cancer is a disease. It will be all right when it is treated." It is helping children to pass through their fear.

Joyce:
Lin-Lin, did you have this experience?

Lin-Lin:
My husband told me later, he saw that I seemed to be calm, so they were not afraid. So I mean we should have faith in the modern medicine and have self-confidence. If you appeared to be calm, and the people around you, they will follow your mood and become more relaxed. Because like what Joyce just said, the days will pass, whether good or bad, so why don't we go through the days happily? It was how I felt at that time. Actually, at that time, why was I so calm? Mainly because I am like that. When I run into this situation, then I need to take care of it, and since I need to take care of it, I will take care of it with courage. I don't have time to say, "Why me?" So at that time my attitude was more positive, more proactive. And I have that [attitude] to my child, so my child would be more--I mean she wouldn't be so nervous and feel like the end of the world.

Joyce:
Right, very good, so the patient's attitude is crucial to their families, because family--sometimes they would rather suffer for you, and get sick for you, but these things cannot be reversed. So being a patient, if we wanted to give our family peace of mind, we need to be strong, just like Lin-Lin. I hope our audience, when you are sick, set a good example to your children. Later on in their life, they may encounter illness sometime, and they will recall how brave their mother was and was able to arrange for her own life, protecting them from this kind of worry and fear. So I think it is a very good thing to give to your children. And Sue, I think she--based on what I know--when she was sick, her husband and children refused to discuss her illness. Sue, can you tell us what happened?

Sue:
Yes, first, there is no husband. [laughs]

Joyce:
Ah, that's right, when you got sick, you were divorced already. Yes, very well, so you did not scare your husband, but your children did not want to talk about it.

Sue:
Yes, up till now it is still a mystery. I only have a sister in New York. My mom and my family, they all live in Vancouver, Canada. My sister did not want to talk about it, neither would my children. Until now I still don't know what they were thinking. We get along very well, there is no problem among us. They said, "Big sister, let's not talk about this, you will be fine." Because my children do not have a father, maybe they are afraid of losing their mother and ending up without both parents. So they were not willing to discuss this matter. Sometimes I went to the cancer support group and saw [others'] supportive family members. I was quite envious.

Joyce:
Yes, yes. Sue, I see that you have a 23-year-old daughter. Of course you sailed through this illness smoothly, but your daughter is 20-something now and needs to be careful, because this is a type of case in which [people] not yet 30 years old get it. Therefore now maybe you should pay attention to your daughter, so you still--although she will not listen, you still need to talk to her. Because in the past, when I read about this, this magazine or newspaper mentioned the word "cancer," I would turn the page immediately, I would not look at it. But now, after I got sick, I know that [even though] you don't look at it, it is still possible for you to get it anyway. So maybe you should work on your daughter, all right? We can encourage each other this way. And you, Lucy?

Lucy:
In the beginning, my husband and I hugged and cried, we went through it together, because if [people] cannot release their emotion and [they] let it linger there, sooner or later it will explode. So we dealt with it first, first to overcome the emotion, and then [with] the two children. At the time they were nine and 10 years old. In their mind, mom is a super woman--she is a judge, a coach and a chauffeur--so they did not suffer a big attack. But after they went to college and I read what they had written, it said when he looks back and then he realizes how foolish he was, to think that mom was only having a cold. So I should have done what Angie did, to consult with the school or the surrounding mental health professionals, let them talk to the children, or with me. At that time they--we did not do that.

Joyce:
Right, right, so this--you can see that it is important to have a program like the Cancer Survivors Network. After the new cancer friends listen to this conversation, they can do it for their family--have the best arrangement for their husband and children and not make them worry, and all this can be learned.

Helping Other Survivors to Cope

Our next discussion topic is how to help the other cancer patients in your community. We start with Angie, all right? Angie, I know during treatment you received help from other survivors, and now do you also want to help others?

Angie:
Yes, yes, Lucy. Sue, how are you? I think you don't know me, but because we joined the Cancer Society, America--I often attended [meetings] in New York. I did not really help out at the Cancer Society, but usually I focus on the promotional aspects. I have always reminded the people I know or the woman friends I meet, you should do breast self-exam, and I would tell them my breast cancer experience, to remind everyone to go for an exam. It cannot be ignored just because you feel that you are still young and will not get cancer.

Joyce:
Angie, now we have a Tell a Friend program. Have you ever participated in it? Do you want to participate in it?

Angie:
Yes, yes.

Joyce:
I think you will be good at it. You go to the Cancer Society, they have a Tell a Friend [program]. Each person goes to tell five of her friends, and then follows up-- ask them to do mammogram.

Angie:
Yes, no problem.

Lucy:
Angie, you go to ask Nancy, Nancy, because when I was there, I trained 25 survivors in Tell a Friend.

Joyce:
--Yes, yes, a very good program.

Angie:
Lucy, thank you very much. When you were there, I felt that the Cancer Society helped me a lot, provided me with much information, and introduced me to many cancer survivors, and I learned from their experiences. So I am happy to share my experience with everybody now, I think it is good.

Joyce:
Yes, yes, and just like what Lin-Lin said, the Reach to Recovery and their visiting project is a very helpful format to the new patients. It depends on if you have the time to receive the training.

Angie:
Yes, I filled out the form recently at a party. I have already filled out the form.

Joyce:
That's wonderful. OK, good.

Lin-Lin:
I'd like to share a fact. This is what Joyce told me. Joyce is also a volunteer for Reach to Recovery. Once during our Joy Club meeting, she--sometimes we would exchange our thoughts, and Joyce told me, once she went to visit a patient, and she asked--I believe the patient was maybe--very uncomfortable, and she [Joyce] asked her, "What do you need?" And she said, "I feel terrible, I need you to come visit." I remember Joyce told me about it. I remember it very well that she brought her own cleaning lady over, right? Joyce? And she brought her over. [They] came to that person's house and helped to clean up the whole place before she left. I believe that you can offer not only yourself to your friends--for instance, sometimes [a favor] like this is very helpful, isn't it?

Joyce:
Thanks, because sometimes a patient feels her house is messy, she does not want you to see, and what she really needs is not for us to fill out forms, or ask some questions and write them down in order for us to complete our report. Maybe what she really needs is something she is embarrassed to say, but when we see the situation, and when we can understand the situation, we can give her a practical kind of help. Sometimes a friend says she doesn't want visitors, but when you ask her how is her appetite, perhaps she'd say, oh, about eating, no-one cooks for her, maybe you want to deliver some food to her door, send over some rice. This is a way of helping, too. But this is a very basic consideration between people, thank you. Lin-Lin, I have not asked you yet, sometimes a person--she really needs help but will not speak out. How can we encourage them to accept our help?

Lin-Lin:
I believe that under these circumstances, you can--because based on my personal experience I can call her and call her frequently, and talk to her sincerely or slowly, and you would find out sometimes what they say to you is not limited to the illness or something. Sometimes she would talk about her personal things, sometimes she would tell you about her family problems, and then we should allow her some time to release her troubles. I believe if we--at this time you can feel that what she most needed is someone to listen, and I feel--I can say that is what I am able to do. I can donate a little of my time. I believe she will be happy, too.

Joyce:
Right, very good. We all need to have a skill of listening, right? Let the patient say what she wants to say, because sometimes there are things that she can't even tell her closest friend. We need to become good listeners. And Sue, let me ask you, from the Cancer Society, or others, other media, or newspapers, you can collect some information, is it important to you? Do you think it is a very important thing?

Sue:
I think it is very important. Before, when Lucy moved to California, I had moved away also. I moved upstate, so I had not been in close contact with the Cancer Society. When Lucy was still there, as Lucy mentioned, the 25 people in the Tell a Friend program, I was one of the 25. The Chinese Chapter of the American Cancer Society helped me a lot, and because I--what I could help Lucy to do was--at the time I helped Lucy to translate a book, such as the Cancer Survival Toolbox. Sometimes Lucy invited physicians to speak, and I would help to interpret during the question and answer session. Because I am a writer, when Lucy needed someone to write, I would do that for her. I feel each person has her own talent. Besides this, you must make yourself look good, because you know you must show the people who come later that you can live beautifully, and with a smile on your face.

Joyce:
Right, yes, this is very good, so when we go to visit our sick friends, we need to make ourselves very presentable, and let them see that after many treatments, we still may be getting more and more beautiful, this is a very important thing to women. And Lucy, you were--

Lin-Lin:
Joyce, pardon me, Joyce, I am Lin-Lin. May I interrupt? I have to leave early. I just want to tell all of you that I am so glad to have the opportunity to share my thoughts and my experiences with you, and good to meet you on the air, and I am sorry that I have to take off early.

Joyce:
Lin-Lin, thank you very much, but regretfully we are going to talk about relationships with your husbands and about intimacy. There will be many juicy topics, and you will miss them all. Next time I hope to have time to see you.

Lin-Lin:
Yes, thank you all, bye-bye.

Joyce:
Let's go back to Lucy, you were in there. New York set up the Chinese Chapter of the Cancer Society. Can you talk about if a person gets sick now, where can she go to obtain information about prevention and treatment of cancer?

Lucy:
OK, I think now days the cancer patients--the Chinese cancer patients--are much luckier than I was 15 years ago. At that time I couldn't find any books in Chinese, and now in New York, New Jersey, northern California, even southern California where I am now, there are many translations provided by the American Cancer Society, and material carefully written by the community and translated by professionals. So to go to an American Cancer Society near you. You can directly call the 800 number and ask, where is the closest Chinese Chapter? The 800 number is 1-800-ACS. Right, Joyce?

Joyce:
I need to verify this.

Lucy:
1-800-2345. Just call this number and say where you live, and it will connect you to the nearest Chinese Chapter, and you can find cancer information in Chinese. If you want American [English], it is much easier. Go to the American Cancer Society, cancer.org, and you can find a lot of information. And Sue, I can respond to your question. In Sue's case, I remember very well the first time she came into my office to talk, she was weeping, walking through the weeping valley, and later on she had a complete transformation. I only need to say that we have a cancer friend--Survivors Day, you will be the MC, OK? I have an article that needs translation. OK. She says OK to everything. We who have the experience need to motivate these people to live through it in the future. Each time when I contact a new patient, I will observe closely. If I feel the she has potential, I will motivate her to get into different kinds of payback activities, and--besides, what I am saying is, no matter where, if I was present, the conversation topic always--they will talk about cancer. I don't need to bring it up, they will do it.

Joyce:
You have become the spokesperson for cancer.

Lucy:
[laughs] I think this is what I can do.

Joyce:
Very good, thank you Lucy, now I will verify what Lucy has said, the telephone number is 1-800-ACS-2345. Thank you very much.

Dealing With the Fear of Recurrence

Now let's talk about the next topic: how to deal with the fear of possible recurrence. Of course there are some survivors who can't do anything about it--sometimes [they] still experience a recurrence. If we run into a survivor or friend, how do we encourage her? Or how to give her a lighthouse in the dark, or a bright light to lift her from depression? Let's ask Angie, OK?

Angie:
Oh, OK. Because I have been the kind of patient who is always nervous and hysterical, often times I was afraid. When you just got cancer, you would be afraid, too. When there is a little pain in your body, immediately you wonder if it could be cancer, if the cancer is coming back. But I think time can--after three years, now I am pretty normal and not being hysterical, like when I have a stomach ache and immediately associate it with something growing inside the stomach. I feel that transferring your focus point is very important, such as exercise, or finding your own interests and hobbies, such as becoming a volunteer to help others. Or doing things you consider advantageous to your health, for instance, I take Chinese [herbal] medicine, in spite of the questions of their effectiveness--to me it is more like psychotherapy. I also do acupressure. You can do many things to make yourself feel healthier.

Joyce:
Yes, yes, I think this is quite common among many people who have cancer. Sometimes when you have a headache, "Oh, my cancer cells are getting into my head." When you feel uncomfortable in the stomach: "Oh, it's getting into my stomach." So this is "panic attack of mentioning cancer" [a Chinese expression]. It is already quite serious. But for us, this group of people here--all our ladies are about 40 or 50 years old--there are always some kinds of mechanical aging processes in a 40- or 50 year old body, or should I say "malfunction"? So don't scare yourself half to death, but don't take it too lightly either. If the pain has not improved after two or three weeks, I think you should go to see a doctor, to see your family doctor. Ask him to do a diagnosis. And Lin-Lin went away, so shall we ask Sue?

Sue:
Fine. Recurrence, my feeling toward recurrence is--take 9/11 and car accidents, for example. You cannot predict any disaster in life, how do I prevent it from happening? In my heart, I told myself and my friends, I feel that only in my heart--to live each day well, do not live in vain, and then when things happen such as recurrence, car accidents or something about your house, or the 9/11 instance, you will face them when they come. It is no use thinking about it now.

Joyce:
Yes, all right, and does Lucy have any thing to share?

Lucy:
What shall come will come, and why worry about things that will not come? You can't avoid the little bird poops on your head, because occasionally they will drop, however, you can prevent them from building a nest on top of your head. Therefore, we should do whatever test that we are required to do, and the rest will not be our concern, it will be up to God.

Joyce:
Yes, so I think she is a religious person. Her life force seems to be much stronger, and I'd like to mention that recently I heard a woman doctor, she is an oncologist, we asked her, "We do not have a recurrence yet, but is there any medicine to treat [cancer] after recurrence? Is it treatable?" And she said, "Up until now, about recurrence, I can't say that it can be treated completely." This means based on the current medical method, but she said there are many other ways. Just like when you exhaust the infantries, you can use the demolition experts, when you exhaust the demolition experts, you still have the cavalries. So one by one, the chemo drugs and the oral drugs, they can maintain you to live a life of good quality, so I think this can be very reassuring. And of course when it reoccurs, although now it is considered no longer treatable, this--among all types of cancer, the breast cancer is considered the best type of cancer. And because many people have breast cancer, the funding for the medical research is quite generous. So they continue to develop new drugs and new treatments, like the chemotherapy now, it is much less difficult for women compared to five years, 10 years ago. So offer money when you can afford it, give strength when you have money--give strength when you can do it. So if you can afford it, I hope you can donate to the American Cancer Society. I am like promoting the American Cancer Society now, and help them do more good research--research some new drugs, and ease our pain.

Lucy:
Joyce, I would like to share this. I have contacted patients with many types of cancer, especially breast cancer patients. Some, not too many, have recurrences, but some people went through second, even third recurrences. They would recover slowly and are able to live a normal life, so it is not necessarily true that recurrence is untreatable. I think it is a matter of perception, not necessarily true but depends on different cases.

Joyce:
Right, it is still treatable, but it is still a see-saw battle with neither side winning. The more important thing is about those who are in the middle of treatment, how can you help them to maintain a positive attitude during their treatment? Angie, do you have anything to share with the people who are in the middle of treatment, or who do not want to have chemotherapy because they are afraid of the treatment? Can you share with them?

Angie:
OK, I feel--to the one who is currently having treatment or wants to have it, I feel that the Cancer Society has been really helpful. I feel that you should get to know the other people just like yourself, who are in the middle of treatment, and you can encourage each other. Because of that, I was able to complete my chemo treatment. Originally I almost gave up, but someone who had one or two shots before me, she told me, "I can walk through this, so can you. I feel that you should take after us." This is why I want to help these people, share my experiences with them and encourage them. We often contact each other by phone, or like you said, visit patients who are having chemo treatment, and tell them encouraging words.

Joyce:
Right, right, very good. I recall that when my diagnosis came out, it was second stage breast cancer, and I had to do all kinds of treatments. At that time I was very, very, very afraid, and very, very depressed, but then there was a friend who had already completed the treatment, and her hair had started to grow back. Her hair was short and as pretty as the model from DKNY, and then she was swinging a tennis racquet in front of me and said, "I am going to play tennis, and next month I will be going to Jiu-Tzai-Go [China], so after you complete your six-month treatment, you will be just like me." It was the biggest encouragement to me, and I thought, "Good, I would consider putting myself in prison for six months. After six months, I would be just like her." So this is the biggest encouragement.

Angie:
So, allow me to interrupt. I feel that the most important thing is--after getting cancer, don't close all the doors, you should go out and seek help. Actively contact the outside world, so we can understand how to help you, and don't lock yourself in the house, you need to send out the S.O.S. signal.

Joyce:
Yes, like when I got it [cancer], my--I am thankful to my second son. Immediately he taught me how to surf the Web. From that time I have learned how to use the computer to surf the Internet. I used to say that I did not need to learn these things to survive. At the time he put me into a chat room, which was American, in English. And the support group on the Web, I could ask questions, and some patients would reply, and that was very important to me also. So it is--nowadays people should not lock themselves in. With the whole world open to you can ask the--you can ask a Norwegian a question, and you can ask an African that question, so this is very good. Now the modern technology can help us. Sue, I understand that you did not go through chemotherapy, so this question may not apply to you, and Lucy, do you want to say something to us?

Lucy:
Because I have contacted about 1,000, over 1,000 Chinese patients, all different types, what makes me feel really bad is that there are some patients whose fear toward chemotherapy treatment is so incorrect and extremely negative. They feel that they might as well die rather than have chemo--it is like living without any quality of life. So I usually spend a lot of time with patients to go over the possible side-effects that are caused by chemo treatment, and more and more these side-effects can be treated by other drugs. [They are] more treatable, much better than before. I have contacted a case that a man with nasal-pharyngeal cancer and a fortune teller told him that he would not overcome this time, and because the doctor told him how to treat it, he wanted radiation, not chemo. Ultimately he gave up and died, what a pity. Right, it is possible that he might overcome the treatments, and I always hold the patients' hands and tell them that it will be all right after you tough it out. Usually after the second or third shots, many patients become weak and speak slowly and tremble, "I give up! I give up!" I have seen several given-up cases, they all have poor results, and so we really need to tell the new patients, "It will be all right after you tough it out."

Joyce:
Yes, I have counseled a patient, who no matter what, she would not have the chemo treatment. She said, "I'm over 60 years old, and my husband is having an affair. I don't want to live anymore." There was no way to convince her, but when she became very sick and urgent, she felt very bad and wanted us to visit her every day. She asked us what she should eat. At that time she was willing to accept any type of treatment. Regretfully, of course, at that time it was already too late.

Lucy:
But some, Joyce, there are some people, because of their fears toward chemo, the second time of chemo treatment after recurrence, they ignore it and seek other alternatives, and give up the traditional treatment, and then it ends up costing them their lives. It is very risky.

Joyce:
Right, right, Lucy, Thank you so much for bring up this point, because to some of our Chinese women, traditionally we have many so-called remedies and Chinese herbs, these kind of things, these methods may not be bad nor ineffective. However, first we should have the mainstream treatments that are supported by science, have scientific proof that they are helpful to us. And then if you still have other ways to help, you can go ahead and try them, but never "give up the basic and look for the last resort." [Chinese expression] Thank you very much, Lucy.

Maintaining Intimacy While Living with Cancer

Now we already have talked for close to an hour. We still have this very important [topic]. It is about how cancer affects our marriage and intimacy, and lets "hundreds of flowers bloom at one time." [Chinese expression]. Say what you want to say, and you can share all your feelings with us. Should we start with Angie?

Angie:
OK, I just heard Lucy said when she got cancer--found out she had cancer, she and her husband hugged and cried. I was very touched, because unfortunately just the opposite. After I got cancer, I found out my husband was having an affair. It was indeed a double jeopardy, and I felt that the affair hit me much harder than the cancer did, because when I began to get sick, I was wondering that my husband seemed--because my life was at risk, I thought his reaction should be "hugging and crying." He did not hug and cry, and then you would wonder about his behavior. But I went through it. I believe maybe there are many people who face the same situation. After getting cancer, you have to look at many things straight in the eyes, maybe you will find out that your husband has affairs. But actually now, after I gave it a lot of thought, just as what Sue has said, since we want to live, and fortunately we do survive, we must live even better lives. Time can heal everything, although an affair is very difficult, but I think I can get over it, if there are friends. When you encounter the same situation as I did, because I happened to know many friends in similar situations who gave me lots of advice, I could get over the shadow of cancer, and get over the shadow of the affair. Now I am doing well, and I am quite optimistic and happy. If someone needs help, I am willing, and they can call me or contact me by email.

Joyce:
Good, good. Lucy, the hugging and crying between your husband and you has truly touched Angie's heart. I believe that the relationship between you and your husband is a very intimate one. Can you tell us about it?

Lucy:
Yes. I think the most touching experience during my process of coping with cancer was when I lost all my hair. My hair completely fell out after I took a shower. Looking at the mirror, I cried out loudly, because my hair is my crown to me. I have natural curly hair, natural curls--losing all my hair was a big blow to me. When my husband heard me crying, and I am not the kind of person who cries easily, he rushed into the bathroom to hold me and said, "Even if you changed to become uglier, I still would love you even more." The words were more effective than any chemotherapy, because for patients, it is the self-esteem. My image was vulnerable, it needed to be reconstructed. If these words came from your spouses, your family, or written out to you, oh, they are so powerful. It has been 15 years since I was there, and I am still excited about it. I am truly grateful to my husband, because I feel that he has been with me to go through this process, and he has consulted with the psychiatrist in helping me to cope. And besides talking about myself, in my professional learning, I discovered many Chinese women, breast cancer patients, they became very self-pitying and ashamed after they got cancer, even avoiding the intimacy with their husbands. Once in a cancer group, I asked 10 of the survivors, "How many of you feel your relationship with your husband became closer after getting cancer?" There were two. And I asked, "How many of you have not had intimacy, have not had sex since you got cancer?" Two raised their hands. One said she was afraid that she would give it [cancer] to her husband. I felt terrible after hearing it. First, cancer is not contagious. Second, without appropriate knowledge, you end up losing a great deal. I want to advise women on this aspect, to let them know that you can still enjoy the kind of intimacy between husband and wife. You can still improve the quality of your marriage, your lives and relationship together as husband and wife.

Joyce:
Yes. Lucy, of course this is a very heartwarming--it is a situation that can make your heart warm. I would like to share this; last year I and a senior training staff of the Reach to Recovery Program of the Cancer Society, an American woman, we went to Taiwan to train 130 breast cancer survivors. They all planned to become volunteers. We talked with them. They were most interested in this American woman. The questions they had were about how to handle the intimacy with their husbands or lovers after their treatments. Because they all felt that a foreign woman has a tendency to be more open and not to be embarrassed by it, and she could talk about how to handle these situations directly. So we have heard many sad stories. Sometimes the couple is getting along fine, but there is a live-in mother-in-law, and the mother-in-law was--she said to her son, "Your wife has cancer, she has a bad illness, so don't go to her room anymore." We have heard a lot of these instances. There was another case that a young woman a little over 30 years old had breast cancer. She was not sure if she should continue seeing her boyfriend. So we had to answer these questions face to face, and of course it was--in Taiwan their cultural background is different, so we would provide them some more advice that could be helpful to them. Like this girl, she wondered, should she have a boyfriend or not? We felt that of course she should have a boyfriend, because your--you don't know yours is-- don't rob from your own pleasure in life. So, like our 30-year-old said, "Should I tell my boyfriend about it?" Of course we said, "You need to find an appropriate time to tell your boyfriend. If you have already discussed marriage, you need to tell and discuss with him." So when it comes to these kinds of situations, how to handle intimacy, Sue, I understand that you--

Sue:
Sue is a single woman.

Joyce:
Yes, I knew she is a single woman, but she--don't you ignore Sue. Sue has a boyfriend now. [laughs] Sue, can you share with us?

Sue:
Since my divorce, until now, I did not have a boyfriend--and then I thought about getting breast cancer, since my breasts were not very large, and now they have suffered a cut, would this have any effect on it? I feel that my current boyfriend is much better than any boyfriend I have had before, and then although my breast had suffered a cut, the sensitivity of the whole breast has not decreased. And secondly, it is timing. When should you tell him? This question has troubled me before, and I have asked around. They all felt that you should tell him if you decide he is your boyfriend and not just a casual acquaintance. So I told him, and he took it easy, you know, it seemed like nothing at all. On the contrary, he felt--I feel that he seems to love me more and cares for me more, because he knows that there is no guarantee how many years we still have to be together. Because life itself has no guarantee, not to mention that I have this history. So I feel a little--I feel there is a major change in my personality. I was more timid before, but now I am strong, optimistic, open and capable. Better than before, it seems I've never been better.

Joyce:
Yes, I think about my husband who is an old fashioned person. It has been five years since my operation. He is--usually at night, when we lay together, if he reaches over, he would intentionally avoid my scarred area. OK, sometimes I said to him, "It is all right, it is all right to touch it. Because he was very busy at work, during the first six months of my chemotherapy treatment, he happened to be absent each time when I had chemo treatment. Usually it was my son who took me to [my treatment]. Some other women might say, "Why doesn't your husband take care of you?" But I would say, "It is alright." Because even if he stayed at home, I would feel frustrated that sometimes I needed to take care of him. But the best thing he did for me is that he found me a very good helper, a housekeeper, so during my treatment period, someone would cook these very, very fresh meals every day, and feed us with nutritious meals. Also I feel each husband can offer different things to his wife, and no matter what they offer, we should be appreciative. And now our time is almost up. Is there anybody who suddenly has some thoughts to share with us? Lucy, anything?

Lucy:
After coping with cancer, my perspectives on life have changed. Life is more significant. Each day when I wake up in the morning, I feel--another bonus, an additional day. Live your life gratefully and happily.

Joyce:
Yes, Angie, do you have any more words to say?

Angie:
Yes, I want to take after Lucy and Sue, and make my tomorrow more significant.

Joyce:
Yes, yes.

Sue:
I have heard many stories about gaining true love because of breast cancer. My boyfriend is just the opposite. Each time he would kiss my scar first, before we become intimate. [laughs] He seems to treasure me, so I feel, about sexual relationship, when you handle it right, it should not be a problem.

Joyce:
Sue, any words? Give us a couple of sentences to finish.

Sue:
I feel that we should not look at cancer as a very big deal. There are many setbacks in life--this is only one of them. It is not different from the other setbacks, as Angie mentioned about her husband's affair, or someone has a son who's on drugs, right? They all are parts of the setbacks, so take it easy.

Joyce:
Yes, yes, yes. Our friends at the Joy Club, we are in the South Bay, there are 70 or 80 members in our Joy Club in the South Bay of California, there are 30 or 40 of them attending meetings regularly. I see every single one is--now they are all sunny and cheerful, so I often think that maybe this cancer is not such a terrible thing. It makes people like us in our living and our lives, we have made a clearer choice in our priorities. Good, today I thank you, everyone: Lucy, Angie and Sue. Lin-Lin checked out earlier. Thank you, bye-bye.

All Bye-bye.

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