[00:00:00] Adam Walker: Support for The Real Pink Podcast comes from Merck, from Susan G Komen. This is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
Welcome to the Komen Health Equity Revolution podcast series. Each month we invite in patients, community organizers, healthcare partners, researchers, and policy advocates to discuss strategies and solutions that drive the health equity revolution forward from multiple populations experiencing breast health inequities, breast cancer screening, and early detection, play an important role in your health.
Screening tests can help detect breast cancer at an early stage when the chances of survival are highest. In this episode, we’ll dive into the importance of screening and how that can help with early detection. As a part of this conversation, we’ll also discuss why genetic counseling and testing is so important, along with the importance of having discussions about family health history, especially in black families.
Joining us for this discussion is Sharon Anderson, who is living with metastatic inflammatory breast cancer. Sharon, welcome to the show.
[00:01:18] Sharon Anderson: Thank you.
[00:01:19] Adam Walker: Well, I’m so glad to have you. Appreciate you taking the time to join us today. Let’s talk a little bit about you and your story. Tell us about how you came to be diagnosed. And I understand that maybe you found out what it was by accident, so maybe you could tell us that story as well.
[00:01:35] Sharon Anderson: Yes. I was at work and I was having heart palpitations. And I, occasionally I used to get those. So I went to the emergency room, they did a series of tests on me and they decided to admit me. The next day they did more tests on me. My heart palpitations, resolved. So they discharged me and told me to follow up with my cardiologist. So I let my doctor know, that I was in emergency room and I had heart complications. So she wanted to see my record. She asked me to bring my records in before she did any surgery.
I brought my records in from the emergency room and she called me in and she said, “Did they tell you anything?” I said, yes. They told me to follow up with my cardiologist. She goes, no. “Did they? It says here in their records, you have enlarged lymph nodes.” I didn’t know what that meant, and she said, well, you need to get checked out further before we can do anything. I went to my doctor to get an exam and I told him what happened at the emergency room and I went ahead and brought those documents with me. He did some tests and he started doing a breast exam and he asked me, he said, “Have you felt any lumps or bump?” I said, “No, I haven’t.” And he said, “Well, I didn’t feel anything, but you have a small rash under the left breast.
He said it. “Has it been bothering you or anything?” I said honestly, I said I didn’t know it was there. The rash was really small and it was an a crease of my left breast, and I’m a pretty fussy person. It was just the size of my, like my thumbnail. He said, well, I’m gonna go ahead and send you to get a mammogram. So I went to get the mammogram, came back to get the results read. He said, “Well, I see something, but it doesn’t look consistent with breast cancer, but I’m gonna go ahead and send you to get an ultrasound. So I went to get the ultrasound. And he said, “Well, I see something suspicious, so I need to send you, get a biopsy.”
When they were doing an ultrasound, I knew something was wrong because, the young lady was calling in the radiologist to look at the screen and telling her to, run it different place in my body. And I was like, something’s wrong. So when I went to get my biopsy, they were doing a biopsy and the nurse said, “Can I pray for you?”
And I’m like “Yes.” When I scheduled to visit my doctor to get the results read, he told me to bring a family member, that’s a sign there. So my husband and I went, he said “Well you have breast cancer.” And I was like, “Breast cancer?” I didn’t feel anything. I felt fine and I felt fine the day that I had the heart palpitations when it resolved, I had to find since that day.
So he referred me to an oncologist at that point. The oncologist did a series of tests with the biopsies and he said, he called us in and he told me I was in stage four and I was de novo metastatic, which means you’re metastatic from the beginning. Some people may have cancer one year, then three years later they may have cancer that spread, which is metastatic. Mine was de novo metastatic because at that time I had in the left and right side of my neck. The left or right side of my collarbone, left armpit, right armpit through 36 lymph nodes and the left breast. I was devastated because when he said I was stage four, I didn’t understand that kind of cancer. I walk around feeling fine. I didn’t understand, and I really didn’t, couldn’t believe what I perceive as a stage four. The TV always shows somebody with a bald head, really sick. They really look like they’re dying tomorrow. And that’s what we used to see on commercials sometimes when we talk about treatment. And I was just feeling fine and didn’t have any lumps or bumps or anything like that. So it was kind of confusing.
[00:05:43] Adam Walker: Yeah. I can only imagine. Wow. I mean, that’s quite the journey too. I mean, especially like, not necessarily being told what’s happening and a nurse asking to pray for you and-
[00:05:52] Sharon Anderson: Yes.
[00:05:53] Adam Walker: Doctor telling you to bring a family member in that’s just gotta be incredibly foreboding.
[00:05:58] Sharon Anderson: Yes
[00:05:58] Adam Walker: And difficult to go through. Now what was, I mean, what was the timeframe of that like, like from start to finish, from when your surgery was scheduled to sort of when you were diagnosed, what was that timeframe like?
[00:06:08] Sharon Anderson: I was diagnosed in actually 10 years this year. Since I, my original diagnosis, when I went to the first oncologist when he said I had denovo metastatic and inflammatory breast cancer, he asked me if I did, I want to him to treat me since I live in Houston, Texas we have MD Anderson Cancer Center and they’re the best. And so I said, I prefer to get treated at MD Anderson. And he said, well, I’ll help you get in at MD Anderson. So it was a I didn’t show any true signs of the inflammatory breast cancer until later on, after they did a mammogram. It did trigger some of the side effects of the inflammatory, inflammatory breast cancer. My left breast started taking, get big. It was probably about two weeks before I started treatment, started seeing doctors at MD Anderson.
[00:07:02] Adam Walker: Gotcha. Okay. And talk a little bit, so you went through quite a process, like with a lot of different steps, a lot of different tests along the way.
I wonder if you could talk a little bit about how you advocated for yourself, sort of during that process. Like how did that work? Did you have to push hard to get the right test? Or did it sort of come more easily, that sort of thing.
[00:07:25] Sharon Anderson: I can truly say I, I was, I did not advocate for myself. because a lot of cancer patients, when they first get diagnosed, They don’t know a lot about cancer, and I was one of those people, I didn’t know a lot about cancer. I didn’t know anybody personally that had cancer and I was getting my mammograms regularly. But the year prior I missed my mammogram.
I had to reschedule because of work conflict and I never did go back that year. And so, that’s one way I tell people to advocate for themselves and make sure you get your mammograms and it, it could, you can go from nothing to stage four like I did.
[00:08:07] Adam Walker: Well, yeah, let, and let’s talk more about the mammograms, right?
So, obviously we want people to get screened. Can you talk a little bit about why mammograms are so important and why they’re so important especially for black women?
[00:08:19] Sharon Anderson: In the African American community, I find that we don’t get exams, mammograms. Nmber one: not enough income, no insurance, underinsured. You may live in a rural area where you don’t have access to transportation, to appointments as well. There’s a lot of barriers that come into place in African American community. Also in my community, they’re taught not to talk about things and it makes it kind of hard. And that’s one thing I encourage is talk to your children, talk to your family. About your diagnosis, because it may help them because, like I said, I didn’t know anybody. Well, I knew one, I had an uncle, but he smoked since he was young and he had lung cancer. So in my head that was like, probably gonna happen, but, Anything other than that. No one talked about illness.
They kept it to themselves and that’s how we were raised. Keep it to yourself. You don’t know what somebody had in my community until they actually died, and so you don’t get that information and that medical history from them. So I encourage people to speak about it and it helps you advocate for yourself. Because I would be able to tell my doctor, I have a history of cancer, and they’ll, that helps with the treatment plan.
[00:09:43] Adam Walker: Yeah. Yeah, absolutely. So, you said you had an uncle that had cancer. So was there no other history of breast cancer in your family?
[00:09:51] Sharon Anderson: I wasn’t aware of anything until, actually, this is strange. I have a first cousin, she has cancer and she has been metastatic since, for like 22 years. So she’s survived the odds of cancer. When I was diagnosed, my aunt called me and on my father’s sister. And she said, told me, she goes, well, you have a cousin that has breast cancer, a first cousin. And my father was in the military, so I wasn’t raised with my cousin. So, we knew of each other, but we didn’t, we never met. And this was strange because she’s a strong advocate. Her name’s Theresa Shepherd. She’s a very strong advocate. Advocate in the cancer community. So I was able to talk to her and ask her questions.
It that helped a lot; when you have somebody that has been through it, know, About treatments and this could help you manage things along the way because it’s a lot.
[00:10:47] Adam Walker: Yeah. Yeah. I’d imagine being able to have a family member that can help you with that is, is gotta be really meaningful too. So then, so how is, how has your experience now affected how you talk about it among your family? Do you talk more openly among more people? Like how’s that working?
[00:11:04] Sharon Anderson: I’ve learned to talk more, because I was originally diagnosed in 2013. And I had a recurrence in 2015 to my spine. I used to work for the postal service for 19 years, so I had back pains already, but I had my, the pain was more, and it was unusual than the norm.
And I remember my oncologist telling me, if you have any pains or certain things, they would tell you, let, just let them know. And they’ll decide. So I sent her a message letting her know it’s having these back pains. It’s more than a lot more than normal. So she called me in and they did a biopsy of my spine. The cancer had returned. And so at that point I learned to you advocate for yourself. because I listened to what they said and I followed through. And that’s another thing I’d like to encourage. Cancer patients, when you’ve already been through cancer once, listen to your body. Listen to your body because what inflammatory breast cancer that I have, there’s no signs or no symptoms.
So I have to go in every three months to MD Anderson to get a CT scan, a body scan, and I have to really pay attention to my body. I learn to just do that. And that’s part of my advocacy is teacher people pay attention to your body.
[00:12:24] Adam Walker: Yep. Yeah. That’s so important. Know what’s normal for you.
[00:12:26] Sharon Anderson: Yeah.
[00:12:26] Adam Walker: Know and take the time to recognize what’s not normal for you. That’s so, so important. So, so have you had genetic counseling and testing done and if so, what was that experience like?
[00:12:37] Sharon Anderson: I had the counseling and I didn’t have the BRCA genes in genetic counseling. And that’s something I encourage people to do because you have, if you have girls, boys, because people don’t know that men get breast cancer.
[00:12:53] Adam Walker: That’s right.
[00:12:53] Sharon Anderson: We have a lot of men that get breast cancer people, men need to be aware of that as well. Genetic testing is something that you need to do to know if your children are at risk and so they can be their own advocate and listen to their bodies as well.
[00:13:11] Adam Walker: Yeah, absolutely.
So important. So, so I’m wondering like, so, we’ve talked about the importance of black families discussing their family health history. Is there anything else you’d encourage family members to do kind of in light of your own experience? Any ways that you would encourage them to share or things you’d encourage them to share?
[00:13:30] Sharon Anderson: Yes. I think communication is key and it’s a must. Even if you have treatment, communicate that to your family as well, because the one thing that may work for you or may not work for you may work for them. And on my second bout with cancer in the spine, I was treated with this; I was supposed to have six cycles of this treatment.
It gave me severe neuropathy in my hands and my feet. And I, at that point, I couldn’t walk. I had to use a wheelchair. And I couldn’t lay down because it would trigger the pain in my feet. And it’s similar to nerve pain that a diabetic would experience. It was really bad. So I communicate with my doctor because my quality of life was gone at that point because I was just sitting in a recliner. My husband found, he googled some things online and he found that putting your feet in ice, Will calm that nerve pain. And so, that’s what I did. I would sit there for my feet and ice and we’ll calm it for a little bit, but then your feet to get cold, you have to take it out. Then there’s your triggering pain. So we stopped. I talked to my oncologist and told her I couldn’t do that anymore. It was getting worse. The neuropathy was getting worse and affecting my quality of life. And so we stopped at four cycles of the treatment. I do have a little bit of cancer in my spine today. And they just watch it. It’s just, it hasn’t moved, hasn’t spread. Some people can’t understand that. You can communicate with your doctor and try something else and still be okay.
[00:15:08] Adam Walker: That’s good. That’s good. That’s good advice. And I’m glad again, you’re able to listen to your body, know yourself, know what you needed, and be able to communicate and work out those details with your doctor.
It’s just so important. So if someone’s listening to this episode, and needs to schedule a breast cancer screening. Where should they go for help? What if they don’t know what the next step is? What should they do?
[00:15:30] Sharon Anderson: Susan G Komen has Komen.org. You can go to that website and they have all types of information there that can help you with finding a place to get your mammogram. They have mobile units that they deploy, that go out to certain areas and you can get, get tested that way as well. That’s one way you can get tested.
[00:15:55] Adam Walker: Yeah, that’s great. That’s great. It’s great resources Komen.org. And I would also mention there’s a breast care helpline at 1-877-Go-Komen. That’s 1-877-Go-Komen. Just to make sure everybody heard us there. So, Sharon, this is great. I really appreciate you taking the time to share your story and just the importance of testing, the importance of advocating for yourself and the importance of sharing. Family health history. Do you have any final thoughts you’d like to share with our audience before we wrap up?
[00:16:25] Sharon Anderson: If you’re going through cancer, it’s sometimes it’s helpful to join a community. Komen has not only do they have the hotline, they have support groups that can help you, go through this journey. because it can get pretty tough and you sometimes you feel alone, but you’re not alone.
There’s a lot of resources on the Komen website for financial help, just advice advocates you can speak to, they can match you up with somebody has similar cancer and can help you through that journey. But it’s important to get involved with a network. And that helps when I’m, when I advocate, that really helps with my journey because it, you don’t wanna sit around the house thinking about cancer and matching it with death. I have stage four cancer. I don’t look at that as death. Four is just a number, and you can continue to live, and sometimes your attitude has something to do with your helps with your progress with your treatment. Again, Komen 1-877-Go-Komen and talk to somebody.
[00:17:36] Adam Walker: That’s it. That’s right. 1-877-Go-Komen and talk to somebody.
That’s fantastic advice for us to end on. Sharon, thank you so much for joining us on the show today.
[00:17:45] Sharon Anderson: Oh, you’re welcome. Thank you for having me.
[00:17:48] Adam Walker: And thank you for joining another episode of the Komen Health Equity Revolution podcast series. We will continue to galvanize the breast cancer community to support multiple populations experiencing breast health inequities to advance and achieve breast health equity for all.
To learn more about health equity at Komen, please visit Komen.org/healthequity
Thanks to Merck for supporting the Real Pink podcast.
Thanks for listening to Real Pink, a weekly podcast by Susan G. Komen. For more episodes, visit realpink.komen.org. And for more on breast cancer, visit Komen.org. Make sure to check out at Susan G. Komen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or on my blog adamjwalker.com.