Talk Shows & Stories : Susan S.

Susan S.: Breast Cancer

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Background

Hi. My name is Susan. I'm 43 years old, a third-generation Japanese American, sensei born in Oakland, California and I now live in San Diego with my husband, Rob, have two stepdaughters and an 11-month-old grandson, and until last week, I had three wonderful dogs. Sadly, my Nikki girl, a beautiful 8-year-old boxer, developed a brain tumor, and although she wasn't in pain, she was no longer able to run and play and it broke my heart to see that she no longer had quality of life so we decided to put her down on Tuesday. Nikki and her brother Zek came to live with me a week after I finished chemotherapy for my primary cancer. She was only 8 years old, and my heart is broken. I really miss her.

An Important Step

But, let me tell you about my experience with cancer. I never thought about breast cancer before, never did breast self exams, except once in a blue moon, but I decided I should take the American Cancer Society special touch course on breast self exam, at the request of a friend of mine who was teaching a class. I learned a lot about breast cancer that day, like, how it affects one in eight women in their lifetimes in the United States and how a woman is diagnosed with breast cancer every 3 minutes, another woman will die of breast cancer every 11 minutes. The United States, among the things you learn about breast self-exam, among the things you learn in the BSE class, the breast self exam course, are the incidence and mortality rates for breast cancer in different ethnic groups. And they told us that if you're an Asian or Pacific Islander woman, ATI, you have the lowest incidence of breast cancer in the United States, and you kind of learn what you're doing, you're gonna lay that in while you're doing your self breast exam. I was pretty sure I had no risk for breast cancer, but I thought I should be active in my own health care and started doing monthly BSE after I took that class, and that was in January of 1991.

Well, in June of 1991, I found a prominent breast lump in my right breast, and I watched it grow for a couple of months, it didn't go away, it stayed there, didn't change during my period, and the thing you're supposed to watch for is a new breast bump. I did. I watched it. I marked it down in my breast map that I learned how to use in my breast self exam course. When it didn't go away I decided I should get it checked out. I'm fortunate in that I happen to work at a cancer center, and I went to see one of the medical oncologists, who was a friend of mine, and asked her to take a look at the lump. So she just pulled me into a room and examined me, and said she didn't think there was anything wrong, but it would be a good idea to go ahead and get a mammogram. She sent me across the street, I got a mammogram right away, and it was negative. The mammogram was negative but the diagnostic radiologist decided we should do a sonogram because it was a palpable mass, you could feel the lump. Sonograms can tell you if the lump is cystic if it contains fluid or is a solid mass. It doesn't really tell you whether it's breast cancer. So we did the sonogram and it did show that it was a solid mass. So he told me I should go to the breast surgeon. And again, because I work at a cancer center. I was able to walk across the street and see a surgeon right away. I should tell you right off the bat that I was very lucky that I happened to work at the cancer center, because one of the things that drives you, that drives me nuts about the whole medical system, is the whole process of having to wait. Having to wait to get an appointment, Having to wait to get your results, and I was very lucky that I didn't have to do that, so I have to say that right off the bat, because this is probably not going to be the experience that most of you will have. I went across the street to see the breast surgeon, he took my family history, gave me a thorough physical exam, and he said to me, you have fibrocystic breast disease, that means you have lumpy breasts. And I did. I had very lumpy breasts. I was 34 years old and it's real common for young women, especially when you're premenopausal, to have lumpy breasts.

Nothing To Worry About?

So they told me, you have no family history of breast cancer, you're too young to have breast cancer, and besides, Asian women don't get breast cancer. So you have nothing to worry about. He said to me that I should just lower my intake of caffeine, and take vitamin E pills every day. So, when you're 34 years old, that sounds like a pretty good idea. You don't want to hear that you've got breast cancer; you've got nothing to worry about. So I went home and bought vitamin E pills, and I was sitting at home that night, thinking, you know, I don't drink coffee or tea, I don't drink sodas like cola, or anything else that has caffeine content in it. I don't like chocolate. Amazingly. People don't believe that, but I don't like chocolate, and I wouldn't take aspirin, unless I was absolutely dying of pain, because I have a real hard time with swallowing pills. But it occurred to me that my caffeine intake probably didn't have a whole lot to do with my lumpy breasts. And remember that I had been mapping my breasts every month while I was doing my breast self-exam, and really had been very careful about what I was writing down. Just remember that I'd taken the breast self exam course, you have to remember that, and I was very careful about mapping out what I found every months during my self exam, and I was pretty sure that there was something going on. So I wrote a note to that surgeon and left it for him the next day, saying all those things that I just told you about not having a high caffeine intake, and asking him if he would please just do the biopsy so that I could be sure. And he found me in the hallway the next day after reading my note and said, "Susan, you have to trust me. I see thousands of young women like you every year, and I can tell you, that you do not have breast cancer. And no, I will not do a biopsy." So, again, when you're 34 years old, and an expert tells you you have nothing to worry about, that's what you want to hear. So, a little bit concerned, I went off and just let it go. But I was fortunate. I was fortunate because my breast lump hurt.

Now, back then, this was in 1991, people would tell you that if your breast lump hurt, then it's a sure sign that it's not cancer. Cancer doesn't hurt. And I can tell you now that that's not true. Not necessarily true. But because my cancer hurt, whenever I would roll over in bed, whenever I would brush up against something. Whenever my husband would hug me a little bit too tight, I could feel that lump. So I kept it in the forefront of my mind. So a couple of months later, I decided that I needed to get a second opinion, so I went to see another surgeon who specialized in breast surgery, and this time I wasn't going to take no for an answer. So that surgeon looked at my records, looked at my mammograms again, that was negative, and did a thorough physical history on me, did a thorough examination, and said, "I agree with your first surgeon. I don't think you have anything to worry about. In fact I can tell you with 99.9% certainty that you do not have breast cancer. And my response to that was, I want to be 100% certain, I want a biopsy. Because this surgeon was kind enough, I think, to oblige me. So we scheduled the biopsy the following week.

Facing The Truth

I remember going into the hospital at 5:30 in the morning and going to the same day surgery clinic and getting all fixed up and I had the surgery done under a local anesthetic. I was wide-awake the entire time, talking to the surgeon. And after he removed the lump, he asked me if I wanted to see it, and I said, "Of course I wanted to see it." And he brought it over to me, and said, "Here. Now we know by looking at this that this is not a breast cancer." And I was overjoyed to hear that. I asked him why he said that. And he told me that there was so much fat that had been growing around it that it was clear it had been there at least ten years and there was nothing to worry about. It actually looked like a piece of gristle that you find when cooking meat. And you couldn't see the lump or anything. I just figured what great news, it's wonderful. I went out with my husband, had breakfast that morning, went on with my life. Got home. The next day, at 5:30 in the evening, on a Friday, I found this message on my machine: "Susan, this is Dr. so and so, please give me a call at this number. If you can't reach me there, give me a call at this number. If you don't reach me by six o'clock, please page me at this number." Well, right away I knew there was something going on. Sure enough, I called him and he happened to be at that first number that he gave me, and he said to me, "Susan, I'm sorry to tell you this, but you have breast cancer." And he explained to me that he was so shocked when he got the telephone call from the pathology lab that my tissue was positive for breast cancer that he'd dropped down to the lab himself to take a look, because he was certain that they had mixed my specimen with somebody else's. But, much to his dismay, and obviously to mine, the results were correct.

It's interesting, because years later, I've learned that 90% of all women that get a diagnosis of breast cancer, find out about it after 4:30 on a Friday evening--which leaves you all weekend to think about it, to worry about it, and to have to wait to do something about it. And I remember when he first told me, when he first said, "Susan, I'm sorry to tell you that you have breast cancer", that my heart sank. I remember so vividly the feeling that I had and what went racing through my mind. First, "Oh my God, I've got cancer, I'm gonna die." And the second thought was, "Oh, my god, I've got cancer. It's gonna be a horrible death, I'm gonna commit suicide instead." And the third thought was "Oh, my god, I've got cancer. I'd better do something about it." And that happened all in a period of half of a second. I just remember that feeling of total fear. And one thing that working at a cancer center didn't do for me, was to prepare me for a diagnosis of cancer. I don't think anybody is ever ready to hear those words. Nobody thinks it's ever going to happen to them. And especially in my situation, where nobody else in my family ever has had a diagnosis of cancer. That's a really scary thing.

So, I, what did I do that weekend. First I called to talk to my boss. Remember, I worked at a cancer center. I was a paper pusher. I was an administrator. I didn't deal with patients and I didn't necessarily deal with any of the medical things, and that's why I didn't know anything about the cancer other than what I'd learned in the BSE course that I took back in January of 1991. We are now talking about October of 1991 when I got that diagnosis. I remember that vividly because October is Breast Cancer Awareness Month.

Logistical Issues

Part of the reason I went to have that lump checked out in the first place, which I may not have done if it hadn't been for this, is that I was taking a personal leave of absence. I was giving up my employer-provided health insurance, and I was married at the time to a gentleman in the navy, who was in flight school in Pensacola, Florida. And I was still living and working in San Diego, California, while he was stationed in Pensacola during his flight training. So, taking a personal leave of absence to go and move out to Pensacola Florida with him because we had already been apart for a year and a half, and found out that it was gonna be another year. So we decided that that was a little bit lengthy, our phone calls were getting expensive. So we decided I would take a personal leave of absence and go to Florida to live with him. And so that's why I went to have my breast lump checked, at the same time that I had my teeth cleaned and my eyes checked and all those other things that you do when you're about to lose medical insurance. And for the 43 million people in the United States that don't have medical insurance, what can I say? I feel your pain. It's a very scary feeling.

So I actually got my diagnosis of breast cancer, I was in Florida, and had already given up my employer-paid medical insurance. Now you say to yourself, "Well, her husband's in the military, so she's got military insurance." And that's true. But let me tell you what the military told me: "If you live within 50 miles of the military medical center, you have to have your treatment and your surgery, whatever you need to have done, there. And so I went to the naval medical center in Pensacola Florida when I found out that I had breast cancer. I didn't know a whole lot about breast cancer; I've already admitted that. So what I did know was that I didn't want anybody touching me if they didn't know specifically about breast cancer. So I went down to the medical center to find out if to ask some questions. Do they have any surgical oncologists at this medical center, and do they have anybody that specializes in breast cancer surgery. The answer on both counts was no. So at that point I really did feel, even though I was an uninsured person, that I had no choice in terms of my treatment, in terms of making sure the cancer was removed. Remember, the surgeon that I went to to get a second opinion and then did the biopsy, didn't believe that I had cancer. So he didn't do a couple of things. He didn't get wide margins, which means that you take a lot of extra tissue out along with the lump. And he didn't ink those margins, which means that you actually ink around where the tissue is taken, so when you look at it when the pathologist looks at it, he can tell whether or not he has gotten all of the cancer, along with the biopsy of the tissue. And my surgeon didn't do that because he didn't think that I had breast cancer. And so, four things were going to be needed before we could be sure that the cancer had been taken.

A Lucky Break

So at that point I was really scared. I didn't know what to do. I knew that I didn't want to have my surgery done at a hospital that didn't have anyone to specialize in breast cancer. But I didn't have the money to pay for it elsewhere. So here's another thing where I was very, very lucky. And I've gotta tell you, I've been really lucky all the way along, even though when you hear my story you may not think so. But I called up my benefits office in Pensacola Florida, or in San Diego, and I explained the situation to the woman that answered the telephone. And she very kindly said to me, "You know, Susan, if you come back and work for one day, we can reinstate your benefits, and you can have your surgery done out here in San Diego." So I called my boss with whom I had worked for several years who was allowing me to take this personal leave of absence, I called him up and said. "Here's the scoop. I need to come back and work for one day so I can reinstate my benefits." And he said to me, "When are you getting back here?" So I made all the arrangements to go back to San Diego, called a friend of mine, who allowed me to stay at her house, because my house had been rented out to a family. What I actually did was, I went to work for a week, which my boss loved, because he liked the fact that I was back doing some work. So I worked Monday-Thursday, and my surgery was scheduled for Friday. Remember I got my diagnosis in October, now we're looking at November, but I actually had surgery to make sure that we got all the cancer. So I had my surgery on a Friday. My parents flew down to San Diego from the San Francisco Bay area, where they live and I grew up. A couple of friends of mine from the Bay area actually flew down to San Diego to be with me and make sure I was okay. And of course I have lots and lots of friends in San Diego who were wonderful ---- for me. And my husband, who again, was in flight school in Florida, was able to take emergency leave so that he could come out the night before the surgery to be with me. He was able to stay there for 2 days before he had to go back to Florida. My mother stayed in San Diego with me at my friend's house, all through my surgery and all the appointments. Afterwards, we got the tentative diagnosis, they finally took out the drain that they put in. I made the informed decision to have a mastectomy.

At the time, I was 34 years old. The surgeon said to me that I was too young to have breast cancer. Obviously not true. It is true that the older you get the higher your risk is for getting breast cancer. And if you look at the chart that shows statistics, many, many more women that are post menopausal entering their sixties will have breast cancer than women that are in their thirties, the young thirties at that. But because I was 34 years old, I said to myself, I am not supposed to have breast cancer. I don't know anyone who says to themselves, I am supposed to have breast cancer. Unfortunately there are some families where there is a hereditary factor involved in that but that's about 4% of all breast cancer patients. Most women that get breast cancer probably think to themselves I'm not supposed to have breast cancer. Well I was 34 years old and I'm thinking to myself about statistics. Some of the things that you do when someone tells you you've got cancer. The first thing you want to know is what are the statistics? What is my chance of living. What is my chance of dying? Now what are the statistics. And I gotta tell ya, in the big scheme of things, they don't mean a whole lot, but when you're in that moment that's all you want you know about, what are my chances. Well, my chances, statistics said, were that I had 30% chance of having a recurrence sometime in my life. There are certain risk factors for breast cancer or one of the biggest -- is if you have had a previous breast cancer. So I'm 34 years old and I'm thinking to myself, okay, I'm gonna live to be 104 years old. Don't ask me why, but I've just always decided at that time I was gonna be. It's not all that farfetched because my grandmother died when she was 97, and again I am Japanese-American. Japanese in the United States and in Japan, statistically live longer than any other group of people in the world. Someday I'm gonna be a 104 years old.

Making The Right Choices

I'm 34 years old that means 30% risk, that means that Gee, for a period of 30 years of my life I'm gonna have to be worried about whether or not I get breast cancer again, and I don't want to have to do that. I needed to be really, really sure in my mind that I was "safe". Therefore I made the decision that I was going to have the modified radical mastectomy being that I was going to have my breast removed, even though I had the option of having just a lumpectomy followed by radiation. I decided that I was going to have a mastectomy. Again, let me tell you about being Japanese American. Most Japanese women don't have very large breasts, but most Japanese women, I'm gonna make a gross representation here, but most Japanese women I don't think place a lot of value on breasts the way our American culture tells us that we should. I didn't identify myself by my breasts. I identified myself by my job and my marriage and my family and the things that I do well at. But having two breasts was not a real big deal to me, and losing one of them, for me, was not a big deal. And so, and that was a personal choice that I made. Obviously, every woman has to make a choice for herself, based on what her medical risks are, what her prognosis is, and what her personal feeling is for her life and her life style. I was married, I didn't have large breasts, and even if I did, I'm not sure it would have mattered to me. But it was more important to me at 34 years old, to get rid of the cancer, and to me, that breast meant that I had cancer, than to have two breasts.

So I made the informed decision to have a modified radical mastectomy and made the decision to follow that up with chemotherapy. Maybe I was gonna have chemotherapy on top of the surgery that I'd already had. And at that time, in 1991, for an early stage, my tumor was slightly more than one centimeter. The ten lymph nodes I had removed had no cancer in any of the lymph nodes. And again, the number of lymph nodes that the surgeon would take is arbitrary as well. Some women have 40 lymph nodes taken out. 10 just seemed like a whole lot to me, but that's as many as they could find and the surgeon assured me that zero out of ten lymph nodes was a good sign. So women in 1991 who were premenopausal at an early stage breast cancer, at 1 cm with no lymph node involvement. If you elected to have surgery and have a modified radical mastectomy, that was it, they considered you cured. In fact I was told that I was being hysterical to even consider having chemotherapy. I had done this after talking to a lot of women, young women, who had had breast cancer, and doing an awful lot of reading not only of the lay literature but of the medical literature about breast cancer. At the time there wasn't a whole lot of stuff in there about premenopausal breast cancer patients. Not like there is now. But I was told I was being hysterical. But I didn't care! It was a decision I made for myself based on what I felt was right for me. I was convinced that that was the right thing I'm convinced of it today. In fact, I felt vindicated because while I was in chemotherapy, the first results started being published about tests that had been going on, clinical trials that had been going on for years, about premenopausal early stage breast cancer cases. They showed that there was a clear survival advantage for women against premenopausal early stage breast cancer, who'd had modified radical mastectomy followed by adjutant chemotherapy, and nobody told me about those tests. They were telling me that I was being hysterical. But I can tell you, when I read the early results of those studies and the research had played it out since then that there is a clear survival advantage. But that is the standard treatment today to have a modified radical mastectomy that you will get automatically get adjutant chemotherapy. In 1992 when those reports first started coming out and I was still in the middle of my chemotherapy, I felt vindicated.

The moral of this little story is that you have to do what's right for you, and you must make sure that you number one make informed choices, make informed decisions that you have to find out about what's available to you, what the options are, what the risk of --- are, you have to weigh all those things, but you are the master of your treatment. You should be the conductor of your own. Everybody else is an assistant to you, including your physicians. So I believe very strongly that if you make informed decisions that are correct for you, they will be the right ones in anything.

Speaking Out

I had my surgery, I went through my chemo, I was able to do that in Florida on a medical leave of absence, and not quite a year later I came back to San Diego, husband had finished his flight training and went back to work. At that time I also started, back in Florida, had started speaking publicly about my experience, my disease, and I did that because that's the kind of person I am. Talk a lot. But what I didn't realize back then is that I was a pioneer. I didn't realize back then that there were virtually no women of Asian Pacific islander background in the United States that were talking publicly about their disease. In fact, my parents didn't want me to talk publicly about my disease, it's not the kind of thing that you do. You don't talk about personal things in our culture. You don't talk about personal things. You especially don't burden other people with your problems--cancer would be a problem that I would have that I talk about, and that would be burdening other people. So I was going way against the culture. I started getting involved in more and more cancer advocacy activities, such as cancer review boards for research grants, or sitting on advisory councils that determined what kind of research would be done and certain pools of money at both the state level and the federal level. Advisory councils that were held at both state and federal administrators and programs what they should and shouldn't do, they should and shouldn't look at.

As I started speaking and doing more of these advocacy activities I found out that a lot of people would come up to me when I would speak and say, Thank you for talking about your cancer as an Asian American woman. Thank you for speaking about it, because my mother had cancer and she would never talk to me about it, or my aunt had cancer only we didn't find out about it until she died, or my sister has a cancer and she won't talk to anybody about it. It was in fact it wasn't until last year, 1999, that for the first time I spoke on a panel comprised entirely of breast cancer survivors from different Asian and Pacific islander communities in the United States. Up until that point, I'd not known a whole lot of women from Asian and Pacific Islander communities that were breast cancer survivors, or at least I didn't know that they were breast cancer survivors. There were eight of us on the first panel in May in Los Angeles. I was the last speaker to talk because I was the only speaker that had ever before spoken in public. These women were courageous. They came from different backgrounds. Many of them were immigrants to the United States. None of them had spoken publicly before. Some of them had to have interpreters. All of them said, My family told me not to do this. And sadly, in 1999, four of these eight women, not including myself, had been told by a doctor, a nurse or an employee in their medical office, or an employee in their physician's office, that they didn't have to worry because Asian women don't get breast cancer. Until I realized at that point two things. One that I had a lot more work to do because the reason that I was speaking was that I'd found out, when I found out, when I realized that it wasn't true that Asian women don't get breast cancer. Obviously I had it, but the statistics that are recorded in the American literature, while they are correct, are extremely misleading. And I'll talk a little bit more about that in a couple minutes. But I decided that I needed to talk out about that because those statistics were hurting women in our communities, our Asian Pacific islander communities, who thought they had nothing to worry about. Therefore may not have pursued a lump or something on a mammogram that was questionable because they didn't think they had anything to worry about.

Damaging Statistics

These statistics that are reported and the way they're reported also damaging to women in our community that think they have nothing to worry about, but what about those doctors that are out there telling everyone that comes in with a lump that they have nothing to worry about. And that is the worst thing that could happen. But on top of that, the perception that these statistics give the policy makers and the entities that provide research funding is that there is no problem in this community and we do not need to put any resources both monetary and otherwise. For example, support services in these communities cause there's no problem there. And that's a real big problem and that was the primary reason I started speaking out.

So in 1999 when I was one of eight women on these panels and I was getting my part of the presentation, I basically got up there and said I don't have to say anything because my story is these women's stories, which you've heard already. I've had doctors tell me that Asian women don't get breast cancer, that I don't have to worry about cancer, that I don't have to worry about what it's going to do to my community because there's no problem in my community. And in fact it was a very emotional situation for me because having met seven other Asian Pacific Islander women with breast cancer, that single day I met more women from my community with breast cancer than I had in the entire eight years previous since my diagnosis. Now I know that there's a lot more women out there, but they don't talk about it. Women in our communities don't talk about it, and that was one of the guiding principles in the National Organization for Asian Pacific Island cancer survivors, men and women, called the Asian Pacific islander National Cancer Survivors Network. Very similar name to the program that you're using now through the American Cancer Society but specific for Asian Pacific Islander men and women who are not used to talking about these issues, who have many different languages and different cultures. And who the whole issue of cancer and illness and death and diagnosis--all of those things in a much different way than the regular public.

Looking Ahead

Obviously cancer has changed my life incredibly and the major way it has is that I've become a national spokesperson and a national advocate for cancer. Not only in API communities but on behalf of all minority and medically underserved cancer patients in the United States. And that includes poor white, rural white, anybody that has difficulty getting access to the best quality information - quality cancer care that they possibly could have, and that has changed my life incredibly. The second thing that's changed my life incredibly, in 1991, when I had my modified radical mastectomy at the age of 34 and told I was hysterical because I wanted adjutant chemotherapy, well at that point I'd had my surgery, I was told I was cured of my breast cancer. In early 1997 I had a recurrence, a rare recurrence in my cerebral spinal fluid. I'm not really supposed to be alive right now. I've been on disability for over three years and my life has obviously changed immensely because of that.

I'm a patient and I'm unable to do work at a regular type of a job where you need to be able to drive to work, sit for 8 hours a day and you need to be awake the whole time you're at work. I'm on 24 hour narcotics to help control my pain, and even that doesn't do it very well. But the one thing that I am that I will be for as long as I can keep going, is an advocate for those that are in the United States who need a voice. I believe that I am an advocate for the people in the United States who don't have the access to the information, services and treatment that they should have. I believe everybody ought to have. So, that's been the major change in my life. And as long as I can keep going I'm gonna keep going. I figure I haven't died yet because I'm still too busy. So as long as I keep that attitude, I figure I'm gonna get to that 104 that I want to be, that I've always thought that I would be. I hope that the information you've heard here has educated you a little bit, has maybe amused you a little bit, but has given you the one thing that I want you to take from the information I've given you here--that there's always hope. It's what you hold inside yourself that's right for you, and keep that, no matter how long your life is, as long as you live a good quality life. And quality for me means what I can give to other people and you will be able to fight your cancer and fight your woes whatever they are. Just keep at it, keep at it. Don't ever give up.

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