Women and Breast Cancer
University of Houston, Women’s Archives
Living Archive Series — October 28, 2003
Introductions — Dr. Elizabeth Gregory
Lourdes Hernandez — Panelist 1
A corporate and securities attorney for 15 years.
Twice a cancer survivor: first diagnosis was 8 years ago and the second 4 years ago.
Active with Susan G. Komen Breast Cancer Foundation at the University of Texas M.D. Anderson Cancer Center, a Pink Ribbon Volunteer at the Nelly Connolly Breast Center at M.D. Anderson Cancer Center, and Tri-chair of the Pink Charm 2002 Gala and Board of Directors. Member of the Pink Ribbon’s Project, Dancers in Motion Against Breast Cancer, a member of the Board of Directors of the I have a Dream—Houston Scholarship and Mentoring Program for at-risk children.
Susan Rafte — Panelist 2
Co-Founder and Houston Project Director of Pink Ribbons Project, Dancers in Motion Against Breast Cancer. A 9-year survivor.
Graduated from Southern Methodist with a B.A. in Art History.
She and sister Jane founded the Pink Ribbon’s Project Houston in 1998, using dance as a medium to promote breast cancer awareness. To date, they have raised over $750,000. Funds go to The Rose and the National Alliance of Breast Cancer Organizations.
Volunteers at M.D. Anderson Cancer Center, the Breast Center, the Anderson Network, and the Advisory Board of Young Audiences. Co-chair of the 1999 Family Services Center Luncheon and a Volunteer at Roberts Elementary School.
February 2003 marks the 9th anniversary of her stem-cell transplant operation.
Ellen Cohen — Moderator
A 34-year survivor, President and CEO of Houston Women’s Center since 1991.
Past President of Leaders of Houston in the Medical Center Hospital.
Serving on Boards of:
• Texas Council on Family Violence
• The American Leadership Forum
• National Violence Against Women Advisory Council
• Texas Supreme Court Gender Fairness Task Force
Chair of Osmond’s Grants for Girls.
• Harris County Women’s Political Caucus 2003 Shattered Glass Award
• Women’s Business Support Network Woman of the Year Award
• NAACP Outstanding Service Award
In 1971 while living in Montreal, Ellen founded Reach to Recovery, Canada’s first
self-help program for breast cancer survivors.
Initial Comments — Dr. Elizabeth Gregory
In very vague initial information, I was talking with Susan to get a sense of the virulence of this illness. One in eight women will be diagnosed with breast cancer in her lifetime is the current statistic, but the good news is that early detection has become much more effective. You can have much more immediate results, leading not necessarily to mastectomy, but to much less invasive treatments.
There are lots of friendly faces here, so I feel very good about being here. Each of us will tell our own stories for a few minutes, and then we’ll pose some questions. And if any of you are survivors in the audience and you want to add your comments, we welcome them.
I am chronologically the oldest and also the longest surviving breast cancer survivor of the panel. I was diagnosed in 1969. I was 29 years of age. Yes, that makes me 63. I was married and had two small children at the time ages 7 and 3. When I was diagnosed, I was living in Montreal. I can tell you that, whatever was going on in the states, in Montreal we were easily ten years behind that.
My story is fairly simple; I had just enjoyed playing a very nice game of playing golf. Afterwards, I took a shower and I felt something that didn’t feel normal, and of course, I was concerned. I told a friend afterwards. I said, ”I just felt a little lump on my nipple.” She said, “you should see someone,” and I said, “Well I’ve got so many things to do, I can’t do that for at least a couple of weeks.” So about 3 weeks later, I went to see a doctor and essentially heard the following: ”I wouldn’t worry if I were you because you’re so young and there’s no history in your family,” which I suspect some of you have heard, and maybe some of the other participants have heard. But, nonetheless, he was wise enough to send me to a surgeon who said, “I wouldn’t worry if I were you, you’re 29 years of age, nobody in your family has ever had it, but I’ll do a needle biopsy.” And I dare say, I had a needle that was like this size (shows the size of a large needle with her hands). They came at me with that sucker, and I was looking at his face while he was doing it. And I think the idea was that he was going to sort of claw some kind of milk gland, but I could tell by the look on his face that he didn’t get in that needle what he thought he was going to get.
In those days after that, the answer was we’re going to have to take you to the hospital and do a biopsy. Now, I know that one of the things we’re fighting today is drive-by mastectomy, where you can have a mastectomy in the morning, and they can send you home at night. When I had it, not only was there no such thing, but I had a biopsy on a Monday, and I was told that I wouldn’t get the results until Friday. And I had to wait in the hospital until Friday. I wasn’t sure why I had to wait.
It turned out later that, when it turned out to be malignant, they were so surprised that, just to be sure, they took a frozen section and sent it to Boston, which had the most sophisticated equipment in those days. And they wouldn’t have had the results until Friday.
I was standing in my room at about noon on a Friday, saw the doctor coming down the hall, saw my husband coming from another direction, and I thought to myself he’s not here if that news is good. Because the doctor would have called him from the hospital at his office and said everything is fine. So once I saw my husband, and once I saw the doctor, and I was told it was malignant, I couldn’t have the surgery on Saturday or Sunday because you don’t do that kind of surgery on the weekends, so I had to wait until Monday.
And my choice was, “Would you like a radical or would you like a super-radical?” And following that, “That’s it; we’re going to lop it off, and we’re going to send you home, and we’re going to wish you good luck.” There was no such thing as chemotherapy, no such thing as radiation, and it was simply that. I never knew of one other woman—ever, any other woman—who had ever had breast cancer.
So for me, the whole question of what I was going to experience was out there. And I said, “I don’t know anyone who. . . ,” and my doctor said, “Would you like to speak to another woman?” I said, “Most definitely.” He said, “Would you like to speak to my wife?” I said, “Yes. Has she had it?” He said, “No, but she’s another woman.” (Audience laughs.) I said, “I know other women. What I really want to do is talk to someone who’s been through it.” So there was no one. So they sent me to a psychiatrist. (Audience laughs.)
Following that, I learned of a program called Reach to Recovery, which was started in this country as part of the American Cancer Society. I flew to New York and was trained by the woman who started it and came back to Canada. And I must tell you, I came back with a suitcase filled with prosthetic devices, temporary prostheses. And when I went to the border, I opened it up, and the guy says, “Hmm.” I told him it was pin cushions, and we closed the suitcase up.
This was about a year and a half after my surgery. I did some publicity and got something in the paper, an article on breast cancer—because you need to understand, in those days, the word breast was not said in public, and the word cancer was not said in public, and certainly the word breast cancer was not said in public, so nobody talked about it. But as a result of this information, I asked women to come forward who had gone through it and if they were interested in getting involved in the Reach to Recovery Program. I didn’t know how many people to expect. I got over 400 letters from women who had gone through it. When we had our first meeting, there were about 250 that showed up, and when we talked about all the things that were required, we ended up with a core group of 100. But just to show you how things were in those days, one of the women that I visited in the hospital—Reach to Recovery Program is a program of women who have gone through it visiting women who are going through it, and you’re matched up based on your age. But when we started, I was 29 or 30. I visited lots of people at different ages. I went to visit one woman who had come in from the country. She was having the surgery. We talked and then she leaned over and says, “Tell me my dear, does it grow back?” It just shows the level of lack of knowledge of what was going on in those days. So for me, everything is exciting in terms of where we are today. The sadness of course is the
one-in-eight figure. I have been very lucky in my 34 years and have seen a lot of changes. I clearly, as you do, have mammograms every year. I’m checked. The only thing that I’ve done differently—and this is sort of the end of my presentation—is, when I had my surgery, there was no reconstructive surgery available.
When we moved to Texas, which was in 1977-78, I wore a prosthesis in my bra, but it was very hot down here. It was a lot hotter than it was in Montreal, and I liked to walk, liked to play tennis, and that little sucker was irritating my chest wall. So I went to a doctor to see if I could be a candidate for reconstructive surgery. They could take the latissimus dorsi muscle from the back and put it in the front. So I had some skin with which to slip in a prosthetic device.
And when I called my insurance company to find out about it, I got the following answer: first answer was, “I’m sorry you had your mastectomy in Canada, so we can’t cover the reconstruction in this country,” which sounded a little bit bizarre to me. I said, “That doesn’t make a lot of sense,” and at that time there was a woman who was suing her insurance company for coverage of her reconstructive surgery, and she won. She was living, I think, in Iowa. So I called back my insurance company. I said, “That doesn’t make sense,” and they said, “You’re right, that doesn’t make sense, but the answer is that reconstructive surgery is cosmetic.” I said, let me ask something, “Is your boss a male?” and she said, “Yes he is.” I said, “Well do me a favor, when you have a chance, you go ask him if he had had a testicle removed and he could have another one put back, would he think that it was cosmetic?” And then I added, “By the way, there’s a suit that was recently won—I’ve lived all these years, fourteen years without reconstructive
surgery—but I will sue you, and I will win, and I don’t care how long it takes. Low and behold, about four weeks later, I got a call and there was a new change in law, and they would cover it. So, I did have reconstructive surgery. I had a Dow implant, which before everything happened, I had to have removed anyway. And then had the transverse flap, and everything was great.
Anyway, that’s my surgery. I’ve been fortunate; I have my life. I remember leaning over my daughter when she was eight years old wondering if I would ever see the day that she would graduate from high school as the tears ran down my eyes and onto her face and onto her pillow. And now I’m looking forward to seeing my grandson graduate from high school. So that’s my story, and now I’m going to ask Lourdes to give her story.
I feel like clapping; your story is just so incredible. Well, my children were about the same age as yours. My son was eight, my daughter was four. And I was in the shower, and I have always had reactive breast to caffeine and various things. So I just felt that it was prudent for me to start having a baseline mammogram early. So I had the first mammogram when I was 35, then the second one when I was about 38. And then, a couple of week just after my 40th birthday, I was in the shower and my breast had been very lumpy—so I never thought that I’d actually really be able to feel something that was different—but boy! I was checking myself, and all of a sudden, it was just amazing! I mean, I felt the change, and so I knew it was different. So I called my surgeon—or my gynecologist who was out of town and referred me to a surgeon—and because of the type of work I did, I was very sort of detailed. So I figured I’ve got three hours to wait. Let me gather all my records, go find my mammogram. I called the place where I’d had my mammogram done. It was at some warehouse by the Astrodome. I went over there, found the little guy with the key, and made him find my mammogram so I could have it when I saw the surgeon that afternoon.
As it turns out, what I had felt was really just a cyst, but I brought in my mammogram. She put it up on the viewer and asked me where the report was for this thing. I said, “Well here’s the letter I got from this doctor. It says it’s normal.” She says, “This is not normal.” And of course that had been 18 months earlier. So I had another mammogram done that afternoon, which, of course, things had progressed over that period of time. I was with two children, husband, busy legal career. I was set to fly to New York that next morning. I was like, I mean, you know, it just didn’t make any sense. I don’t have time for this. There was a real kind of disbelief, but I got referred to M.D. Anderson and had someone in the radiology department look at the mammogram, and they said, “Yes, this looks very suspicious for cancer.”
So I had no history of breast cancer in my family. Hispanics tend to have a lower incidents of breast cancer, and I felt like I had done things right. I had nursed my babies. I thought I had done everything right. I thought this should not have been happening because I was in control. And I really could not believe it. I made M.D. Anderson take me to the pathology department to see the slides, to see my slides versus normal cells because I really could not believe it.
So anyway, after that I was convinced. And actually, I was very fortunate because the diagnoses was early breast cancer (BCIS). And because it was spread in many different places, the recommendation was that I have a total mastectomy. And because it was contained, I could also have immediate reconstruction. I had enough redundant abdominal tissue to have free-flap tram reconstruction. So anyway, I just said, OK, sign me up; I’ll do the whole thing and get this behind me. That kind of surgery had a reoccurrence of less than 1%. So I went merrily on my way and recovered from the surgery. We had only talked about two diagnoses—there actually were three. And two years later on the right side—I continued to do all my self exams— I found something else on the right side. Turned out that it was lobular in situ, and it was removed with a lumpectomy. There was no other treatment for that. So I continued on my way there too.
Then two years after that, I continued to do the self exams, also on the reconstructive breast because, even though I had such a very low percentage risk of recurrence, it can happen, and when it happens, it tends to be in the scar line, so I would check those. And one day I was felt something really tiny, the size of a BB. And after an FNA, fine-needle aspiration, they determined it was cancer—Depo cancer—again. And after an axillary excision, they determined that a portion of it was inside too, but the rest of it was invasive.
So then that’s when I really felt like, Okay, now I’ve really had cancer. And so then I had chemotherapy and radiation. And even though it sounds like a very unlucky history, I really feel like I’ve been very lucky because, in every situation, my cancer was caught as early as possible, and that was because of the tools we have available today. And that’s really my story. It’s been four years since the last recurrence, so I’m very grateful and very happy to be here.
We’re grateful too. We’re already seeing a lot of similarities in our stories. (Ellen signals Susan to start her presentation.)
I was 30 years old when I first felt the lump, and I was probably pregnant, but I didn’t know I was pregnant. Very early on in the pregnancy, I had just switched doctors. I had searched out this particular doctor because I had this naïve kind of idea that I wanted to deliver my baby at Methodist Hospital in those big beautiful labor delivery rooms. You know, I had this whole image, and so I got the name of this doctor, a very reputable physician in the city. And when I first went to him, I told him that I wanted to start trying to get pregnant, and it all happened very quickly. I went off the birth control pills, and soon thereafter, I was in the shower (again, that infamous place where we all seem to be). I just reached up and felt a pea size knot in my right breast. And I don’t have very lumpy breast, and that’s why it did jump out at me. I am a physician’s daughter, and my sister who, from the age of late teenage years, always had very lumpy breast—I was very aware about checking them. I wasn’t very good about doing them monthly, but every once in a while I would reach up and do a self breast exam. And probably not the correct way; I’d just reached up and felt it. I went to the doctor, presented to him this pea size lump, and he said it was probably just a cyst and not to worry about it. And soon there after, it was determined that I was pregnant. And so through the—he said we’ll watch it—and so through the pregnancy, I didn’t do anymore self breast exams because of the changes in my breast and how they felt and hurt; and he didn’t do any either. And I delivered a health little girl on December 31st of 93’ and started nursing her—no problems with the nursing—but every time I’d reach up to put my breast in her mouth, I would feel this lump.
So at the one month postpartum check up, I presented again that I had this lump, and he told me not to worry about it; it was breast-feeding related. So again, I had researched this doctor, felt OK. I’m doing all the things I’m suppose to be doing: telling him my concerns and he’s reassuring me, so I went on. Again, at my three month postpartum, I said, “You know this lump is still there—not to worry about it. And it wasn’t until about—well my daughter was eight and a half months old when I was diagnosed. I had been with my family around September back on the east coast, and I noticed that as she was nursing, she would knock it with her mouth, and it would hurt. A pain would go shooting down my right arm. And so I happened to mention it to my father on the phone. I thought he was going to come unglued. He just said, “WHAT? How long has this been happening,” just frantic. I should tell you, my father is an incredible diagnostician, but he always goes worst case scenario and works backwards. So I thought, Dad, you’re going off the deep end, but he kept calling me saying, “You need to get in to see somebody immediately.” Two hours later, he’d call again asking, “Have you made that appointment?” “OK, OK, I’m making the appointment.”
So I made it. I called my doctor, and he said, “Oh yeah, I see that there’s something here. You need to come in but, you know, no hurry.” So I got in pretty much like the next day or the day after that. Again, he looked at it, and by this point, now what I know, it all just comes. It was so obvious that this was cancer: my nipple was retracted on the right side. You could actually see the lump on the right side of the areola, and he still looked at it and said, “I don’t think this is anything to worry about, but obviously it’s bothering you.” So he wrote down three names of surgeons that were affiliated with Methodist. “Call one of these, and she’ll aspirate it, and I’m sure it’s nothing.” So I took that and immediately called, and I got in very quickly, which I don’t how that happened. But the first doctor on the list saw me the next day, and I laid on the table and watched this core. It wasn’t quite as big as this pen, but it was quite a needle that went into me, and it was very painful. And when she pulled on the hypodermic, nothing came out. And I didn’t know a lot about breast cancer, but I did know that was not good. I was sure that it was going to come out white and just be milk because I was still nursing. I looked down at my breast and thought, “Oh my god, I’m going to loose my breast.” I had to carry my own lab results into the hospital, nearly passed out from the fear of what was going to happen. And it was the next day that I got the call that it was malignant. By this point, it was stage three, which means it had gotten beyond. It was invasive ductal. It had gotten into my lymph nodes.
My brother is also a physician, and he started his homework in North Carolina on who I should go to, and immediately M.D. Anderson came up. And I jumped ship and ran over to M.D. Anderson as fast as I could. Since then, I’ve been through everything that I’ve gone through with the doctors over there. I now know what a good rapport with my doctor is because I have a great rapport with all the doctors over there. I did start preoperative chemotherapy almost immediately.
What was a pea size tumor when I first felt it was 2x2x1 cm. It was a nice size tumor. They were really pushing on preoperative chemotherapy to try and see how I’d respond. I did standard-dose chemotherapy where it did shrink by about 50 % and was sandwiched in the middle of eight treatments I received. I decided to do bilateral mastectomies. I had some concern in the left breast, and I just felt like I wanted to go ahead and get this all taken care of. I did immediate reconstruction. At the time, I was allowed to do that even though they thought there might be a chance that I was going to do radiation. They went ahead and did the reconstructive surgery. They used the tram, which is the stomach tissue, and relocated and got the blood supply from a piece of muscle from down in my stomach; and then the fat from my stomach to rebuild the mounds. And then I had more chemotherapy, and that was followed by 6 weeks of radiation. I started everything in October and finished everything in June of 1995.
In about September, I was coaxed by my sister to come up to New York City. They wanted me to come up; they were doing something. And I didn’t know what was going on, but I knew something was happening. My mother was back in Pennsylvania collecting stamps for a project that my sister had dreamed up, and she said come on up to New York, “September is great in the city and bring Marika, and let’s enjoy it.” So, I went up there, and it was the first Pink Ribbon Dancers in Motion project, and it was in a small theatre in New York City, and it was the most magical thing. I watched my sister perform, and I sat in the audience, and I thought, “My god, she’s doing this for me.” It was so beautiful, and they raised a small amount of money but was used very wisely by a group NABCO (National Alliance for Breast Cancer Organizations). And it sent eight women to the FDA to testify on some drugs that were having success in Canada and in Europe. It was an unprecedented day, and three of those drugs got pushed through for breast cancer. I don’t know what two of them are, but I do know one of them that is very near and dear to my heart. And while I was up there, I kept feeling this twinge in my back, and I thought it was from slinging that stroller around. And at that time, my daughter was eighteen months old, and we were in and out of the SUV vehicle, and I just kept feeling it and I tried to ignore it. I pushed myself through the holiday season just thinking it was nothing. I felt I was done with that chapter. By January 1996, it was determined that my cancer had spread to my spine; it was in my thoracic spine, one lesion. I had more radiation to that site, and I was put on Tamoxifen. I was estrogen-positive, and so there was a chance that I would respond to hormonal treatment. It did work for a little while, but in eight months, it had come back and with a vengeance; it was in five more places by the following September.
It turned out that one of those drugs that got pushed through the FDA on that day back in November the year before was the drug I needed. So my sister really danced to save my life. It was a drug that I went on, and it put me into remission in order to go forward with a bone marrow transplant or a stem-cell transplant. I needed my own cells because I did not match my siblings’, either my brother or my sister. So, I had to clean up the cells in my body so that I could use them for the transplant that I needed. Taxotere was that drug, and it did an incredible job. I got the remission, and in February in 1997 I got a
stem-cell transplant, and it was a rough road. And at that point, my sister thought she was giving up her career in New York City as a dancer to move down here to help us. Since then, her career has taken off in a huge way. And as I say, she’s a bigger fish in a smaller pond and busier than ever with her dance career. She came down to help us, leaving New York City behind, and was with my family as I went through the transplant. And somewhere there in my delirious state, I said, We need to bring the project down to Houston. And Jane kind of tried to not hear it and knew that it was a big deal and a lot of effort. But eventually, she realized it was what we needed to do. And when I did get health again, we pulled together the first Pink Ribbons’ Houston Project in November of 1998. And the fund grew from that meager $10,000, which was well used, to a $100,000 when we performed at the Wortham Center in 1998. And since then, we’ve gone beyond that and raised about $750,000.
I am fine. It’s been six and a half years since the transplant, and I’ve lived with stage four cancer, but I’m very healthy and live a very full and active life.
Thank you. While you were talking, it struck me that I often asked my mother, who is 88, “What was it like when you were growing up?” She grew up before airplanes, and she’s lived to see a person on the moon. And I’m sitting here thinking to myself, when I had breast cancer, as I had said, there was nothing. All they said was, “Lop it off and good luck.” When Lourdes had it, there was chemo and radiation, and with Susan, there was stem cell, and as a result of stem-cell research, she was able to benefit. That’s an incredible distance to go—not even in a short period of time. Really, I think if—and maybe this comes from my strong feminist background—but if men had been getting breast cancer, there might have been things done in a shorter period of time. I don’t know. Although men do get it, however, they don’t get it to the extent that we get it. It took a long time before people moved forward and did it. But just from where we were, from zero to stem cell research, fantastic things have happened. I was also struck with the fact that we all take showers. This was also interesting. I think showers are a good place to be when you’re looking for something. Also that, for the most part, all of our original sites were very small—BB size and pea size, that kind of language—but we did find these tumors on our own. We found them first. As important as mammograms are, nevertheless, all three of us found our sites by self-examination. So, clearly if there’s a message here for that, it would be to make sure that we’re all examining ourselves.
I think the other thing that came out particularly was that, from my response and Susan’s response from doctors was, “Hey, don’t worry about it; it’s nothing to worry about.” And I maintain that, if you know your body, and if the hair on the back of your neck goes up, or something doesn’t feel right, you need to insist upon whatever it is you want because, “Hey, you’re too young” and “Hey, don’t worry” just doesn’t fly. Just listening to you the whole time, I thought I was just lucky that they got me early enough.
I was thinking that the tram flap, while I don’t wish it on anybody, is also a very good liposuction technique for loosing weight from the abdomen.
Yes, we have very flat abdomens.
It’s the only good that comes out of this.
Susan, what was your mother-in-law’s comment?
What’s so bad about this disease? You’re getting a boob job and a tummy tuck. (Everyone laughs.)
There were a couple of other things I was thinking of as well. My own daughter, who was very young when I had it, somewhere in her early twenties, came to me when she was twenty-three or -five and for Mothers’ Day presented me with her results of her baseline mammogram, because she was the daughter of a woman who had had it. Now, unless I’m wrong or I didn’t hear it, (looking at Lourdes) “You had no history.”
No, I had no history, but interestingly enough, my mom is 68 now. Two years ago and because of my history, she’s been much more proactive about checking herself, and at 66 she went for a mammogram and found early stage cancer. I’m just so grateful that she was clued in and did not hide her head in the sand over the fear, which is what a lot of times happens.
You probably set the example for her to realize that life goes on.
Yeah, but she’s also smart, and I was just so grateful that she really caught it early. She was able to have a lumpectomy and radiation, and at 66 that was much better than having to have a more drastic surgery.
Was there history (asks Susan) in you family?
My maternal grandmother probably had early calcifications, but it was in the 70s and she was 70. And the only thing that they could offer was, “Let’s just take the breast so that in a year, when you come back, it’s not something more severe.” Because in the seventies, there wasn’t much option to do anything more than mastectomy. So she did have a mastectomy—and I always thought she had breast cancer—but later my mother told me that, “No, it was kind of a preventive measure.” So there is a lot of cancer in my family, but not breast cancer.
I think maybe some of our foremothers passed away from cancer, but in those days, nobody was sure it started in the breast, so some of us just didn’t have that history. But again, one of the signs to look for is if you’ve got it in your family. Well, we didn’t have breast cancer in our families. We were also told not to worry. We also seem to have lived fairly healthy lives. We were probably eating fairly correctly and exercising or taking care. I noticed that all three of us didn’t have a lot of time to deal with this either, so sometimes maybe that’s something. The only other thing I was thinking was the attitude of the doctors. I think it’s changed greatly now because 50% of the medical class now are women. And so you clearly have women going into this field, but when I wanted to start the Reach to Recovery Program, I was told by the doctors in the hospitals in Montreal that, “We don’t want some do-good women in the hospitals interfering with our work.” And sort of this “Lady Bountiful” thing: “Just get out, we know what we’re doing; we can handle the medical part of it.”
Well I was fortunate; there was one doctor who had done his internship in New York. And when he was there in his residency, they had the Reach to Recovery program, so he knew what it was and he knew that it worked. He was the assistant chief surgeon at this one hospital, and he said, “I’m going to order it for my patients.” And once one patient got it and said, “This is great,” a woman came in and talked to me, and she showed me what a prosthetic device looked like and helped with where to get them. Then the next woman in the room next door said, “How come I don’t have someone coming to talk to me?” And so the fact is, we women pushed for this kind of service. It did not come from the medical establishment; it came from us, and we said we have a right to have it. Again, I think we have to say what we want. Finally, again, back in ‘69, we didn’t say “breast,” we didn’t say “cancer.” Often when I’m talking, I’m talking about my field of domestic and sexual violence, and I usually come at it this way: “By the way, I’m also a breast cancer survivor.” And what is interesting to me is that, in ‘69, when we didn’t say breast and cancer together, we’re in a whole different place today. We can be sitting around a table with any of you at lunch, and we can be talking about our experiences. The waiter can come up and say, “You know what? My mother just had a mammogram.” It doesn’t make any difference. But we are with domestic and sexual violence where we were in ‘69 with breast cancer because we don’t talk about it today. So while we’ve come a long way—I hate to quote cigarette commercials—while we’ve “come a long way baby” in some areas, we haven’t come all that far in others. So that was some of the things I sort of put together from our conversation.
I was laughing because we were at lunch together yesterday, and I have little lump that I’m watching and that my doctor is watching with me, and she said, “Well let me feel it,” in the middle of Café Express (audience laughs). Breast cancer is shouted from the mountain tops at our house. When I was diagnosed, my husband and I made the decision that we were going to be very public about this disease, if there were something we could give back. If somebody thought about, “Oh wow, breast cancer; maybe I should go home and do this breast exam and see.” And that’s kind of a lot of what our project does is raise awareness about the disease. It was hidden in the deep recesses of peoples’ homes before generations ago; and now, it’s breast cancer.
But in my background, in cultural experience, there are a lot of people who are still back in the late 60s or early 70s where women were much more hesitant to discuss it. And one of the statistics that just make me so sad but revs me up is that, although Hispanic women and African American women—actually African American women have a higher incidence, but Hispanic women having a lower incidence of breast cancer—have a higher death rate than the general population because the cancer is found later because there is not as much self exam, doctor’s exams, and mammograms. And that just makes me crazy, so one of the things—I never planned on this was not on my to do list—but just getting the word out to the Hispanic community so that we have those death rates come down. Because there is no prevention, but you can have early detection and lower those death rates.
If you have questions or comments (addressing the audience) from your own personal experiences, please pose them to the panel.
Woman in the audience
Do you think breast cancer is on the increase, or are the methods to diagnose it more sophisticated where they catch more, or what do you think it is?
We were talking about that when I was giving out that statistic of one in eight. We don’t know. Is it now one in eight because people are catching it much earlier? I think it has been epidemic for a long time. I think that the statistic changing is that early detection saves invasive treatment. I still think it’s a very horrifying statistic, one in eight. It’s great that they’re catching it early, but why is this disease, 50 years later, still such a problem, and how come there aren’t more answers? I think the answers are coming fast and, like you said when you went through it, “what was available”—I know Lourdes and I only being an 8-year survivor and a 9-year survivor—huge changes have occurred since I did the transplant in 1997. There have been so many more drugs that have been pushed through that are very viable treatments for breast cancer. Herceptin—checking if you’re HER-2 positive. I mean things that are coming out as proven research and out as conventional treatments have happened in the last five years. So it is moving lightening fast at this point, and I do really, in my heart, believe there is a cure somewhere very close by. But why, 39 or 34 years later, are we still struggling with this disease and that ratio, one in eight?
Following up on one of the questions, have any of you taken tamoxifen for any length of time?
Yes, I have. I’ve been on tamoxifen for three and a half years. Following up on the comment of how quickly things have changed, when I was first diagnosed, tamoxifen was available, but it was given for only stage-4 women. I was stage-0, so it was not available to me. Fast forward a few years later, and it’s available to high-risk women, so I feel there’s a possibility—probability—that if I had tamoxifen available to me when I first went through the surgery, I might not have ever had that recurrence. So that’s how quickly things have changed.
I went on tamoxifen when I metastasized also. It was not a choice for me because I was pre-menopausal. It was brought up—my father asked about it—and I was getting my questions fed to me from one ear, and then I spit them out to the doctor. It was not an option for me. I went on it when I was told it had spread. I was estrogen-positive,
progesterone-negative, so there was a 50-50 chance it would work, and IT FAILED ME is how I’m suppose to say it—I did not fail it.
I am now on Arimidex, which is, at this point, only given to metastatic women, and it is a hormonal treatment similar to tamoxifen. It hits the tumor a little differently than tamoxifen, but I’ve been on it for five years. I took myself off of it because I was tired of taking it, but my bone marrow transplant doctor wanted me to go back on it, so I’m back on it. I’ll probably be on it indefinitely. They feel like I need to stay on it, so I am back on the drug. I too have a similar—it wasn’t tamoxifen—but when I was going through the treatment the first time around, it was Taxal, which is a very commonly used drug now, that was experimental, and I didn’t do Taxal. I then later did Taxotere, which is of the same family, the taxine family, and got a great response—a remission within the third treatment. When they did the scans, everything looked great. And I too wonder, had I been given Taxal, if I’d fallen on that side, that arm of the research, would I have had the recurrence that I had because I did respond so well to the taxine-base drug.
So, it’s interesting how the timing of where you fall in the diagnoses to where they are in the research.
One thing with a lot of friends that have gone through this like I have, we’re on tamoxifen for five years, and it’s OK—so what happens after that. And now that I’m getting close to four years, that question is looming much bigger. And one of the very exciting things that just has been in the news is that there’s another drug called letrozole (FEMARA). There have been studies that have concluded that women who were on tamoxifen first for five years and then on FEMARA—they had such good results in those studies that they stopped the study early because they felt like it was unfair to the women who weren’t getting it. And so I’m really looking forward to that, and you know that there’s got to be something out there. For example, testicular cancer—there’s a drug now that works on testicular cancer to the point now where 95% of testicular cancers are now cured with this one drug. That’s the reason why Lance Armstrong had such a great result even though it had gone to his brain, and he had numerous tumors in his lungs. So I just think we’ve got to support the research that is out there and be really aware of what is going on. I mean, if NABCO had not been there ready to fund those women going to testify, the approval of those drugs, like Taxotere, would possibly have been delayed and not available. I think, as women, we’ve just got to be really aware of what’s out there.
And I didn’t have the drugs. I had a hysterectomy the year after I had the mastectomy, so I had a full hysterectomy.
Which is not at all recommended.
No, of course not, anymore. That was it, and some of us at that point—well, there was no estrogen. When it came up, they said stay away. So, I just never had hot flashes.
I talk to women now who are HER-2 positive, and I say, “When they took my tumor out, that wasn’t even a known thing to test for nine years ago.” So I don’t know that I’m HER-2 positive. That’s the ancon gene—that there’s one particular chemotherapy that is very successful against HER-2 positive women. So, it’s interesting you know, you say you didn’t even know if you were estrogen-positive or -negative.
One of the questions that came in is, “What are the intimacy and self-image issues around your experiences?”
Well, I’ll tell you what mine were. Again, I was also very young, and part of the problem in those days too was that there was such an emphasis on breasts. Wherever you looked, every movie focused on them, and you just felt a part of your self-worth was tied up with your breasts. And since I didn’t have a choice, it left me what we referred to in those days as “disfigured” because I didn’t have reconstruction then. So I just had one breast. I was very fortunate in that my husband—his response was, “I’m so happy you’re alive; that’s all that counts.” And I felt basically the same way. The intimacy in the beginning was difficult because there was the question of, “Well, if I touched the breast remaining, is that going to remind her of the breast that was gone?” Is sex going to be painful? If I’m on top, is it going to hurt her? One of the things we had going for us was that we talked. So he didn’t have these questions in his mind, and I didn’t feel less desirable. So we talked a lot about them, and it worked. My husband passed away a few months ago. We were married for 43 years. It was good, and it worked. But there were other issues. I liked to work out, but I couldn’t go to a health club, a women’s gym, because they didn’t have separate changing rooms. So you were always facing your locker when you changed so no one could see what was going on. It simply was the “Stone Age.” But the intimacy worked because we communicated.
When we counsel women, Lourdes and I, at M.D. Anderson, there is the philosophy of emotional healing, and you have to have some physical healing. It’s not the end-all to have the breast reconstructed, but there’s something about making yourself physically whole again that was very helpful to me. And that helped with my emotional and my spiritual healing. And so I did wake up with breasts that looked very much like what I went to sleep with. You, later, go back to have the nipple done to get the projection. It’s a kind of out-patient surgery. And then to get the color—I have tattoos. I have snakes. No, just kidding (audience laughs). You get to pick the color. I stuck with the traditional color.
Red, white, and blue, right? (Audience laughs.)
Anyway, my husband said “You do not have to do this reconstructive surgery.” It’s a very long surgery; I was on the table for almost 12 hours, and you do feel like you’ve been hit by a Mack truck. You’re hunched over. They take a huge portion out of your stomach, and they fold you down to sew you back up, so you walk around literally like an 80-year old woman kind of protecting everything—the breasts that have been reconstructed, the stomach area. And slowly, you straighten up and stand tall again, but he said, “You don’t have to do this.” I knew I didn’t have to do this, and I told them going in that, if I didn’t have the right stuff to do the free-tram reconstruction, I didn’t want to do what was called the conventional, which was where they actually tunnel muscle up through. If I didn’t have the required parts to do that, close me up. I just would rather go without. I didn’t want implants. I would rather have gone without. My decision was made not based on my husband, but based on my daughter. She, at the time, was a little girl, and she’s now 9 ½, and very aware of what I’ve been through, my breast cancer. And I didn’t want her to be—I know that the teenage years are hard enough—and I didn’t want her to be embarrassed of who I was—going to the swimming pool with her and have her kind of run to the other side to get dressed so she didn’t have to be associated with me because I had a big scar. I really wanted her to feel like she could look at me. And we do talk about them, and that they don’t work like breasts anymore. You don’t have the sensual feeling that you have with a real breast. That is taken away, but the look is there, and in clothes, the look is there. The plastic surgeon said to me, “You’re 30 years old; you’re going to want to put a bathing suit on. You’re not going to want to deal with a prosthesis. We have this incredible surgery available. If you do an implant, you’ll have to replace it maybe every 10-12 years. This is a once-in-a-lifetime deal.” And he really kind of talked me into it. He was also really handsome (audience laughs). He was actually the fellow. And he convinced me that I wanted to do this, and I’m glad I did. Even after going through the metastatic part of it, I was glad to have the breasts, and I feel good about myself from that.
I had a similar experience. My husband basically was very happy that it was early-stage, and it was completely up to me in terms of what I wanted to do. And I knew right off the bat that I did not want implants. The concept of having something foreign in my body, especially at that time when implants were a big controversy in ‘95, that was just something I was going to stay away from. And when they said I was a very good candidate for the reconstruction, I thought, I’m very active, I’m very active in sports—I just felt like that would be the right thing for me. Also, I’m not small breasted, and I’m kind of klutzzy. I could just see myself dropping the prosthesis out of my clothes at inappropriate times, and I don’t need to deal with that. The surgery was painful, but I was also so amazed at what they could do. I thought this was like science fiction. And, of coarse, I was on morphine, so my husband said that every time someone came in I would flash them and say, “Look, look.” (Audience laughs.)
What we do at Anderson now—we’re called The Flashers—we do show and tell, and we do actually show our surgery results.
To women who are considering this, there’s nothing really like seeing it.
And touching it.
Susan is right. It’s a mound, it looks just like your other breast. The feeling comes back a little bit, but it’s not a gland; it will never work just like your breast. I’ve got one of each, so I sort of feel like I’ve got the best of both worlds in a sense. When I talk to women, I think it’s also real important for the woman, when she’s deciding what she’s going to do, to be doing what is going to work for her, not to do it for your husband. She’s got to look at her life and the things in and around her life and decide. I had one woman who was coming in who had had a mastectomy several years ago and was coming in to look into having reconstruction. And in the conversation, she told me she was having trouble with her husband, and that’s why she was considering it. I just thought a breast is not going to fix that; it’s got to be what’s going to work for you.
Well, I think we’re almost to the end of the time. I was going to make one comment. You were talking about your daughter too. I remember when my daughter was about 12 or 13, I found her crying in her room. I said, “What’s going on Marcie?” She said, “Nothing.” I said, “Tell me, tell me what’s bothering you.” She was just starting to develop, and she said, “My breasts are hurting, and I’m just afraid I have what you have.” And this necessitated a different conversation than the ones we’d had up until then. So you never know what is going on. Also, I remember when I was starting outreach recovery, we were training women for role playing to talk with other women. We’d say, “OK, Susan, you’re the survivor and you’re visiting someone in the hospital; If she asks you what to expect in terms of sexual relations, Susan, the volunteer, said, “I can’t discuss that because I havn’t had sex with my husband since the day I had my surgery.” Obviously, she didn’t become a volunteer. Clearly there are a lot of things going on. I visited one woman who said, “I know my husband is out in the waiting room with his mistress.” Lots of people are going through really tough things.
Well, the last question is best for you, Susan, because people want to know what the latest Pink Ribbon project is. We might as well finish with that.
We have a lot going on. We are so glad. October, as you know, is Breast Cancer Awareness month. It’s a great month to spread the word. But when you’re in the project, it seems every day there’s something going on for us. So, coming to the end of October, I’m going to be trick-or-treating for, and celebrating for, the end of October because it’s been a busy month. We are in the last week of a real fun project called the Tour of The Pink Platter. We have asked 21 restaurants to join us. Throughout the summer, survivors and friends of survivors have painted little desert plates, and then 21 real artists have painted larger platters. At each of these restaurants, you can go in and, for a $20 donation that goes to us, you get a desert from the restaurant and one of the desert plates that has been painted by one of these survivors. They’re all very adorable and fun, and lots of creativity went on this summer. Also, at each restaurant is the larger platter, and there’s a silent auction going on at each of the restaurants on the large platters. So that’s our Big October event. We try not to do too much as a project in October because so many things come our direction that we get to tag onto. And it’s been, like I said, an extremely busy month. We do a gala every other year, and 2004 is our every other year. So May 6th, mark your calendars for the gala event at the Cullen Theatre at the Wortham. So from probably here till May 6th, we’re going to be zoning in on that project, that part of the project. It’s going to be fun. It’s going to be Pink the musical. Put it on your calendars and be there. One other thing, we’re in the second year of our guild, and on November 10th, we have our first Guild meeting for the second year. It’s going to be held at the Blantons’ house, and Eva Singletarry is going to be speaking. Dr. Singletarry is both Lourdes’ and my surgeon. If you’re interested in that, we have information in the other room where the reception is going to be. Please let us know. We’d love to have you as a Guild member.
And the Guild is women who—you don’t have to be a survivor—just want to get involved and participate in the various things, and we need volunteers.
I was glad you said May 6th, by the way. Our gala is May 4th. Well, according to the time I was given, this is the time. I don’t know what your histories are (to the audience). I’m sure you’ve all been touched in some way by breast cancer. So I think, from all of us to all of you, we wish you continued good health. Take showers. Examine yourselves. Maybe, God willing, one of these days, there will no longer be a need to have October as Breast Cancer Awareness month. Thank you, all.
Living Archive Series Women and Cancer — October 2003
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