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Episode #2305
Sister’s Guide to Breast Health
Brown: We see the pink ribbons, the pink cookware, pink tee-shirts and more, all to remind us of the many women all over the world who have been affected by breast cancer. According to the American Cancer Society, breast cancer is the second leading cause of cancer deaths for all women in the United States. But even though fewer of those diagnosed are black women, more black women are dying from the disease. Why is that? And more importantly, what do you need to know to reduce your risk or extend your quality of life if diagnosed? A medical expert and two breast cancer survivors have information that all of us need to hear, next on Black Issues Forum.
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Brown: Hello everyone. Welcome to Black Issues Forum. I’m Natalie Bullock Brown. According to research by the American Cancer Society, breast cancer is the second leading cause of cancer deaths for American women. In fact if you are a woman living in the United States, you have a 1 in 8 chance of developing invasive breast cancer during your lifetime. There is an interesting contrast, however, when you look at racial statistics in breast cancer. Black women have a lower incidence rate of breast cancer but more black women are dying from the disease. Today we are not only going to talk about the seeming contradiction, but more importantly what options are out there to help you prevent breast cancer and what is out there to help you survive it if it should strike.
I’d like to introduce an exceptional panel of guests today. We are happy to have with us Dr. Gloria Frelix, a radiation oncologist which is a physician who studies diagnosis and treats cancerous tumors. Dr. Frelix is also on the teaching staff at East Carolina University’s Brody School of Medicine.
We also have Sandra Johnson, a cancer survivor living in the Triangle area. And we have Valarie Worthy, president of Sister’s Network Triangle NC, a survivorship organization for African-American women with breast cancer. Welcome to the show all of you.
Now Dr. Frelix I want to start with you and let’s just I guess set the stage. If a woman is diagnosed with breast cancer—well even before diagnosis what are some of the things that women need to know, and even their spouses, their family members if they think maybe they have breast cancer or how do they detect it?
Frelix: Well usually a woman might find a lump in her breast. I would hope that they find it by having a mammogram. That is what we like to encourage, especially after a woman reaches age 40. We like for them to have annual, yearly mammograms. So I would hope that they would have found it by having a mammogram because then it is at a, probably at a very early stage if it is only detected by mammography and not by her feeling a lump in her breast. Because usually if she can feel a lump in her breast it is a little bit larger than I’d like for it to be.
Brown: And Sandra let me come to you, you are a breast cancer survivor. How long ago were you diagnosed with cancer and how did you find it, what, just tell us a little bit about your story.
Johnson: Okay, I am an eight-and-a-half year cancer survivor. I actually found the cancer myself. I had had a mammogram about six months before I discovered it. I only discovered it by just noticing something different in my body; I just noticed something under my arm, felt like marbles or just little round things. And I mentioned it to my husband and he said, “Well you know, if it gets larger or doesn’t go away you should get it checked out.” And a couple of weeks later still there and so I went to the doctor and from that point it was discovered that it was actually lymph nodes that were enlarged but it was actually coming from breast cancer. I went through several tests and ultrasounds, etcetera. But the cancer could never be found until they actually did the surgery. So it was a good thing that I was noticing changes within my body and got treatment as a result of following-up on that.
Brown: Once you had the surgery, what was the I guess prognosis? What did the doctor say about your, the chances that they had gotten it all and about your, I guess your survival rate?
Johnson: So it was a stage II breast cancer. So I did choose to have the mastectomy. That was, the recommendation was that I should at least get that breast taken off because they did not know where the cancer was in the breast. So I did have a mastectomy and breast reconstruction. Then chemotherapy and radiation. I was prescribed to take Tamoxifen initially but now Aromasin for five years after that. And that the chances of it coming back were decreased as a result of going through all of those treatments.
Brown: Valarie I do want to get you involved but I want to get a little more information and I want to go back to Dr. Frelix to kind of put all of this in perspective. But let me ask you, when you were going through the chemotherapy—and just throughout the whole process after it was confirmed that yes indeed you do have breast cancer, how did you deal with that and what were some of the I guess emotions and even concerns that you had to struggle with?
Johnson: Initially certainly shock but even before that I had a biopsy done but still no, nothing in my mind said to me it is cancer. I mean I never thought that. And when I went back to the doctor’s office to get the results of the biopsy, I was just in complete shock because I had not prepared myself at all for the possibility.
Brown: For that answer?
Johnson: Exactly. And so certainly shock, anger, you know why me? And then well I want to live. So if that means taking my breast off, fine, take it off. But I want to live. So then it was a very positive you know, whatever I need to do to insure that life continues, that is what I want to do. And I received a lot of support from church, from my neighborhood, from people at work, and of course from my family.
Brown: Valarie tell us a little bit about your experience with breast cancer and if you had similar feelings, similar concerns?
Worthy: Very similar concerns, I was diagnosed at the age of 40. So when I was talking to my doctor he said I probably, if he hadn’t checked me 38, 39—so that is relatively young. And for me I was at the prime of my life, not even thinking about any type of health problems. I had gone to my Gyn and she checked my breast and she thought she felt something. So I just turned 40 so she said, “This is an ideal time for you to get a mammogram.” And I sat there and I kept getting test after test and ultrasounds and you know it was kind of frightening because at that point I didn’t know what was going on.
Brown: They kept testing you because?
Worthy: Kept testing me.
Brown: Because they—
Worthy: Because something just didn’t look right. And so finally they said something looks bothersome. And I think that is the term sometimes when they are not quite sure but it is not quite right. And so they decided that I needed to have a biopsy. After the biopsy it was discovered that I had breast cancer. I was totally terrified, had no idea of what to—because in the African-American community when you hear the word cancer, that is death. So when I was told breast cancer—and I am a nurse—I was totally frightened, didn’t have anybody to talk to me about, “Well I’ve had this experience with breast cancer and it doesn’t mean that it is a death sentence.” So I really had to search hard to try to find people that had gone through it and actually had survived it. But I had great support from my family and my friends and at that time I wasn’t married, I was engaged, but my fiancé was just very, very supportive. So I had a lot of support in the community as well.
Brown: Dr. Frelix, just listening to their stories—and thank you so much for sharing them because I am sure it can be difficult to even re-live that even though you are eight-and-a-half years, however many years, removed from it. But once a woman is diagnosed, what does she, what should she look forward to, what sort of attitude will be helpful for her?
Frelix:Well I think that when a woman is diagnosed with breast cancer they go through the full gamut of what Sandra and Valarie have just mentioned. But I think that if a woman pulls on her support of her family and those around, there is a certain—when you are—and they can tell you that when they are getting the radiation and the chemotherapy that there is a certain camaraderie of everybody who is having to go through this and you see that other women are completing their treatment and they are happy it is their last day. You start to wish and hope that you can make it to your last day. So it is sort of like a little club, they develop a camaraderie with each other and their symptoms of chemotherapy—all of that will go away, don’t worry about that. So you have reassurance. But I think that it is very important on that first day when they are diagnosed is to let them have whatever emotion that they are going to have. If they are going to cry, let them cry. I mean it is something that has really traumatized them. Sometimes that is most important in venting that, in getting that out. Because I tell them, “Okay go on and cry. You are going to cry today. But tomorrow we fight.” So you know, so that is what we are going to do, we are going to fight this. And you can win because we have a lot of other people who have won. I can give them people’s names who if they want to talk to them they can talk to them.
But we don’t want them to be alone, we want them to get the right positive attitude to be able to fight it, to demystify it and to look at it as a process. This is just a process, a means to an end. Because we can complete this and we can cure this.
Brown: So we want to say just definitively that the word “cancer” is not a death sentence.
Frelix: Absolutely not. It is not a death sentence. We have developed—we have so much data. We have so much research that has gone into breast cancer. We’ve come from such a long, long way from the time of the ______ mastectomies where half of your chest wall was cut out and just horrible scars on the chest wall. We don’t do that any more. Women don’t have that. They have reconstruction, they do tattooing of the nipples to the color of your skin, I mean it is a whole different art that goes into this whole process now. But it is just basically what the woman wants. Some women want the mastectomy.
In her case it sounded like the tumor was, might have been so diffused that it was the best thing to do. If you don’t know where it actually is, there is no sense in you trying to treat that breast. Maybe she is not a candidate for a lumpectomy and radiation. She has to have a mastectomy. That is just something that you know you have to get your attitude together and ready to accept it and deal with it.
Brown:But it doesn’t have to be the end of your life.
Frelix: Not the end of your life. And I think the fact that she had a reconstruction and went on with her life, that says a whole lot.
Brown: Absolutely. I wanted to come back to you Valarie and learn more about your network, your Sister’s Network, and what is the purpose, what is the mission of the network?
Worthy:Well we know that African-American women present at a younger age and so I had gone to support groups, didn’t see very many African-Americans, but the other thing that was a difference it was older women who we didn’t share a commonality in terms of, they had already gone through their careers and I was starting a career. So I needed someone that we had some type of commonality. So I tried to start a support group and it took me several years to get five African-American women that were committed to forming a group. Lots of them did not want their families or friends to even know that they had been diagnosed. But finally we got together, I had a social worker friend that had been diagnosed and we worked really hard t get those five women together. Now our group is over 60. But not only do we offer support, we go out in the community and talk to women about breast health. Because we think it is important that we put a face on cancer so people know that you can thrive and survive after breast cancer.
Brown: Sandra, now that you have had so many years in remission, I want to talk a little bit about what and definitely want to get Dr. Frelix in this, but what did you find was possibly missing when you were diagnosed in terms of support, or just resources, that now you are aware of and you wish you had known about and that you would share with our viewers?
Johnson:That is a good question because I did find a lot of support at my church. There were several women at my church who had gone through breast cancer and as soon as I was diagnosed they were at my house, they were sharing information, they were saying, “Look at this site. Get this information. Ask these questions.” So that was very helpful for me. I think now they have a lot more medical things that they can do without things being as invasive, even as they were eight or nine years ago, there are a lot of things that they can do, a lot of the medications that they can give you and sometimes even the chemotherapy treatment and etcetera that they give you doesn’t necessarily mean hair loss. So I think there have been a lot of advances in the last eight years that were not available when I went through it.
Brown: Dr. Frelix are there things, are there resources that you would recommend that—especially if it seems that Sandra and Valarie were willing—I mean they were interested. They didn’t want to, you know, hide. They wanted to find information. They were seeking information. What about women who really don’t want to share, they don’t want people to know?
Frelix: Yeah those are the women that make the statistics what they are is in that even though African-American women have a lower risk, but they die more than white women. So those—that is that group of women that you are referring to, those women who do not come in, those women who suffer from fatalism, denial, hopelessness. And we do have that component. A lot of my patients who are African-American need coaxing in order to get their treatment. I really have to have a “Come to Jesus” meeting with them, that is what I call it, you know, a “Come to Jesus” meeting” you know because they will say things that I know are counterproductive. Like I had an African-American woman I saw last week who had a large tumor, I mean she is a professional woman, she has her own business. But she had decided that she was not going to have chemotherapy. She had just made up her mind that she was not going to have chemotherapy. When I saw her not only did she need chemotherapy but she needed chemotherapy and radiation treatments. But she had made up her mind that she wasn’t going to get either one, or she was going to choose between one or the other. And so I had to explain to her if anybody needs chemotherapy, you need chemotherapy. So it is most important that you get the chemotherapy because the chemotherapy is, it spreads the medication systemically. We know that you just can’t cut a breast cancer off and it is gone forever. There are components of breast cancer that are systemic. That is why those operations where they thought they could cut more were not working because the cancer still came back. That is what led us to know that we didn’t get all of the cells by cutting. So it is a combination of all three modalities of treatment, depending on the stage of the disease that you have.
Brown: Let me just ask you quickly, chemotherapy—possibly it is a myth but one of the things that I know I have heard often and I have heard cancer patients say is, “I don’t want chemotherapy because it is going to make me sick, I am going to be tired, I am not going to have any energy, I don’t want to deal with that, I’d rather have quality of life over feeling like I am depleted, you know in energy level and so forth.” What is the reality?
Frelix: The reality is people do have side effects from chemotherapy. I would be lying if I said that they did not. But if you have surgery for hip replacement, there is a process of you having a rehabilitation period. You are not going to feel good every day to take care of that problem. So treating breast cancer is like treating any other type of disease, it is a process. Usually the chemotherapy may last, depending on the stage and type, it may last from four to six months, some women even a year. But I have school teachers who never miss a day teaching school, they go right through and get their radiation and their chemotherapy without missing a day of work.
Brown: I want to move on to just talking about things that can help women avoid breast cancer, especially for Sandra and Valarie as survivors. Anything that you did post the surgery and the treatment that you did specifically to try and lower your risk of the cancer returning? Sandra I’ll start with you.
Johnson: Well certainly exercise is something that even though I’m not perfect, still just last week was, “I’ve got to get back to my exercise routine.” So you do get out of the habit of it. But a much more conscious effort to get good exercise and then to eat enough vegetables and fruits and take the right vitamins and supplements. I did not drink before or smoke, so none of those things were issues. I was not overweight, have only weighed as much as 150 pounds during pregnancy. Of course prior to middle age—[LAUGHTER]. But those things that I consciously now try to do is to eat right and to make sure I get good exercise and vitamins and supplements.
Brown: And just a caveat here, Dr. Frelix, it is true that if you are overweight or you do smoke, your risk of being diagnosed with breast cancer increases?
Frelix: It increases.
Brown: Okay, Valarie what about you? What kind of things did you change in your diet or your lifestyle that helped?
Worthy: I think the one thing that I would add, and I agree totally with Sandra, is that just living a stress-free life, I think that sometimes we don’t recognize the importance of living a stress-free life. When we are stressful it manifests itself in some manner, so just trying to live stress-free. And then giving back to what I believe God gave us, health, and go out and talk to people and encourage women about getting self-breast exams and getting their mammograms as that is age appropriate.
Brown: Well the Sister’s Network, just having support, it seems like that would be one thing that would reduce some of your stress, especially when you are going through—
Frelix:Absolutely. And then we are in an environment where you can discuss your fears, your anxieties, where people would understand what you are going through. So for a lot of women they have really, really benefited from being in that type of environment.
Brown: Even in the absence of the network for you, Sandra, it sounds like just talking to women who have gone through it at your church, just having the support of your family, that helped reduce stress for you?
Johnson: Oh absolutely. The other thing that I found very powerful was the Race for the Cure. Seeing that many people either who have been touched in some way by breast cancer and seeing all of the survivors, the first year that I went to that it was very touching and very powerful and gave me lots of hope. I was very motivated and had lots of hope that you know my life, I can live another 20 years. I don’t have a death sentence because I’ve been diagnosed.
Brown: And just hearing Sandra say that, Dr. Frelix, it just seems like if you have the attitude that, “You know what, I am going to live, I am determined to live,” that has to have some sort of—I don’t know if the word is psychosocial or whatever the phrase is—but it has to have an impact on your health ultimately?
Frelix: It does and I think that what I am hearing from them is the whole thing that has centered around breast cancer. You know there was a women’s movement to bring this to Congress so that mammograms could be free to anyone who didn’t have insurance. I mean that was a bill that was passed by Congress under the National Breast and Cervical Screening and Early Detection Program; we call it BCSEP, so that no woman regardless of their ability to pay, can be denied a mammogram and a pap smear. So these monies come from the Center for Disease Control and you can go to your local health department and ask them about the Early Detection Program monies that are available. You can go to your local hospital and get the exam done. So I really would like that message to get out today and that if you do have a lump, and you get a mammogram done through the BCSEP program, if you are found to have breast cancer and you are uninsured, if you qualify you can get treatment and a BCSEP Medicaid card to take you through chemotherapy and radiation therapy and surgery which are large medical bills.
Brown: So the cost should not deter anyone?
Frelix: The cost is—
Brown: There is no reason.
Frelix:There is no reason. I mean there is no reason. Because initially we did not have that portion in the bill. We fought to get that added to the bill because we, several congressmen including the congresswoman from New York, pushed that bill and added the Medicaid card to the bill because if you are out screening women and you are finding that they have cancer and they have no insurance, then all you are doing is creating a bigger problem because they don’t have money to pay for it.
Brown: Right, right, right. Well I am going to give Sandra and Valarie the last word and I want to just ask you, what sort of advice would you offer to women who may be listening and watching out there who you know maybe they have a family history of breast cancer or you know maybe they found a lump and they just don’t know what to do, what would you say to them?
Johnson: My advice is don’t neglect your health. You know so often we as women put ourselves last on the totem pole and we take care of everybody else except ourselves. Well we can’t take care of anybody if we are not here. So take care of yourselves and know your body. Do your yearly checkups, don’t neglect that but then know when anything changes in your body and don’t ignore it.
Brown:Thank you for that. And Valarie?
Worthy: Breast cancer is not a death sentence. There are many of us, thousands of us, millions of us, that are thriving and surviving after breast cancer. So if you find a lump, go get it taken care of. There are tons of people in the community that are there to help you.
Brown: Well we thank you so much for sharing with us today. We really do and we hope that the work that you do, Dr. Frelix, will continue because you seem to be a compassionate woman.
Frelix:Thank you so much.
Brown: Looking out for women.
Frelix: I am, I am.
Brown:And I look forward to seeing you guys at Race for the Cure, because I am going to have to do that next year. Absolutely. So if you’d like to get in touch with our guests or obtain a copy of a transcript of tonight’s show, visit us online at unctv.org/bif. And when you visit be sure to give us your comments and program suggestions. You can also call us on the BIF line at (919) 549-7167. For Black Issues Forum I am Natalie Bullock Brown reminding you to be encouraged no matter what. Have a good one.
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