Healthy YOU Podcast, Episode 18: Breast Cancer: The Patient’s Perspective with Carol Downey

December 27, 2023

Women's Health Cancer Podcast Episodes
Healthy You Episode 18
Title: Healthy YOU Podcast, Episode 18: Breast Cancer: The Patient’s Perspective with Carol Downey

Host: Frankye Myers, Chief Nursing Officer for Riverside Health System 

Expert Guest: Carol Downey, Breast Cancer Survivor 

[00:00:00] Frankye Myers: From Riverside Health System. This is the Healthy You podcast, where we talk about a range of health related topics focused on improving your physical and mental health. We chat with our providers, team members, patients, and caregivers to learn more about how to maintain a healthy lifestyle and improve overall physical and mental health. So let's dive in to learn more about becoming a healthier you.
[00:00:29] Frankye Myers: All righty. I am really excited to have with me today in the Healthy You Podcast studio, mrs. Carol Downey. We're going to be talking about breast cancer, and Carol is a breast cancer survivor, so we're going to get the patient's perspective around this experience. So, Carol, welcome. Hi. Hi. Thank you so much for taking time out of your busy schedule to join us for this episode. Today is a very special episode to me, and it's near and dear to my heart. Carol, I consider you a friend and someone that I highly respect, and you are a two time cancer survivor. Carol is a wife, a mother, and an avid dog lover.
[00:01:12] Carol Downey: Welcome.
[00:01:13] Frankye Myers: Welcome again.
[00:01:14] Carol Downey: Thank you.
[00:01:15] Frankye Myers: So tell me a little bit about yourself, your family, and your love of pet and pet therapy.
[00:01:20] Carol Downey: So, as you say, I'm a wife, a mother, and a grandmother and a pet mother of now six dogs and counting. Not all at the same time, but that's how many we've had so far. Okay. I have three children that are all now grown adults with jobs, with benefits.
[00:01:41] Frankye Myers: So empty nest?
[00:01:42] Carol Downey: Empty, never empty, but empty ish yes. And a three year old grandson who I absolutely adore. Okay.
[00:01:53] Frankye Myers: Now, as a nurse, I am familiar with pet therapy. So talk a little bit about your experience with pet therapy.
[00:02:01] Carol Downey: So we have a black lab who has been certified by Therapy Dog International, and we visit with various different organizations that request pet therapy. And just to be clear, a therapy dog is different from a service dog. A service dog is Ada accredited. It has public access, and it is basically a tool, in a way, for a person with a disability. So they can go anywhere a wheelchair can go. A therapy dog, on the other hand, is a pet, and it is highly trained, and it has been tested to make sure that it can react appropriately in stressful situations, but it can't have public access. It's not necessarily allowed to go into places where a normal pet couldn't go.
[00:02:53] Frankye Myers: That's very helpful. And I know that the research has shown from the pet therapy perspective, I've seen it in nursing homes and even in acute care settings to decrease their.
[00:03:04] Carol Downey: Cortisol and stress levels 100%. We visit at the detention center, we visit with the arc of abilities, and then we also go to the cancer infusion center.
[00:03:17] Frankye Myers: Well, thank you. Thank you so much. We are so grateful to have you and to talk about your journey not once but twice to where you are today. I know it all started with you at a young age, around 35 years old. Before we jump into that first diagnosis, I would love for you to share a little bit about your life at the time, because I think that really helps our viewers to understand and set the stage for how this all started and then your journey after that.
[00:03:51] Carol Downey: I agree. When I was 35 years old, my brother, who was 32, passed away from non Hodgkin's lymphoma, which was unusual for such a young man to get this disease and for it to be incurable. Needless to say, as my only sibling, it had a huge impact on our family. About that time, my doctor recommended that I have a screening mammogram, which, when you think about that, that was 1991. A technology was pretty rudimentary back then, so from what they could see, everything was fine. And I went on forward in my life without ever thinking about it again.
Flash forward to our move. We moved from this area to Roanoke in 1995, and I started, obviously, with my preventative health care with the gynecologist, and at age 40, she asked me to get a mammogram. And of course, in my head, I'm thinking, there's no breast cancer in my family. There's no reason for me to I had one five years ago. Why would I do another, right? And so I just put that little piece of paper in my purse and went on down the road. Flash forward a year later, I'm 41 at the doctor.
It's time for my annual exam. So, this was a big OB practice, and their office was chaotic. Lots of young moms and children know people coming and going. And for the GYN patients, they had a little satellite office in the hospital where Bill was the administrator. So, of course, I planned to have my appointment there. So know in and out, because why hang out in a big, chaotic waiting room? Yes.
And at the same time, I plan to have lunch with Bill. Okay, so go in for my appointment. My doctor says, you're 41 now. We recommended that you get a mammogram last year, and I see you didn't do that. And I'm like, Sorry, I didn't really think much about it. I don't have any family history. I breastfed my babies for a year each or more. I exercise regularly. I try to eat well. I mean, I don't smoke.
I was just not worried about that. Right? And she said, Well, I think just on recommendations, I think you need to go ahead and get one this year. I said, yes, ma'am, I will. So then I go upstairs to catch up with Bill so that we could go out to lunch. And for your listeners, they probably don't remember when telephones used to be attached to a long cord, and you needed a really long and so I go into the office. Bill's administrative assistant is sitting out front and she asked me how my appointment? I said, well, you know, the doctor would like me to get a mammogram. I don't even know where to go. I don't know how to get a mammogram. Who does that?
[00:07:01] Frankye Myers: How do I navigate this?
[00:07:02] Carol Downey: Right? Exactly. And he was coming around the corner with a long phone cord, and he was on the phone call, and he's kind of giving me this just a minute thing. So she calls downstairs to find out how I get a mammogram. And they said, we can actually take her right now. And just as I'm saying to the administrative assistant, no, Bill and I are going to have lunch.
[00:07:27] Frankye Myers: You were prioritizing lunch.
[00:07:29] Carol Downey: Exactly 100%.
[00:07:30] Frankye Myers: Right.
[00:07:31] Carol Downey: He comes around the corner and goes, this phone call is going to be long, and I'm going to have to cancel lunch. Oh, my. So I said, all right, then I'll go downstairs and get this over with. And I did, and a couple of days later get a call to come back for some more views. They just weren't really sure what they saw. Right. Go back and have some more targeted views. Again, they're seeing some microcalcifications. They're not exactly sure what they are. I guess in medical world, microcalcifications can either be very clearly cancer or very clearly not cancer. Right. Mine were indeterminate. They were in the middle. Okay, so go back and again, la la la.
[00:08:21] Frankye Myers: Not thinking a thing.
[00:08:22] Carol Downey: Not thinking a thing. They were like, well, maybe we ought to biopsy this. Okay, whatever. My surgeon, as he's biopsying, is like, this tissue looks really nice and clear. I'm not worried about this at all. And then a couple days later, bill comes home for lunch. Like, that's not normal. And the physician, the surgeon called and said, your pathology is positive. You have cancer.
And to say that the world just was pulled out from under us is sort of an understatement.
[00:09:03] Frankye Myers: Wow. One thing that resonates with me is how important that relationship is with your primary care for your OBGYN, because they keep us on track and on pace.
[00:09:18] Carol Downey: They don't let us skip out.
[00:09:20] Frankye Myers: Exactly. So I think everything lined up just as it should.
[00:09:24] Carol Downey: I completely believe there was a divine hand in that. Yes.
[00:09:27] Frankye Myers: Now, looking back, I know we say, hey, I felt good. Does anything stick out?
[00:09:32] Carol Downey: Not at all. Not at all. And I can tell you that as I proceeded through treatment, my radiation oncologist told me that it would have been at least five years before they before I could have felt the tumor because it was sort of deep into the breast.
[00:09:50] Frankye Myers: Absolutely.
[00:09:52] Carol Downey: Wow. So continuing into the treatment, after I had a lumpectomy, which after we've now spoken about dogs, I have to tell you that when they came out to tell me the results of my surgery, they're like, it was the wildest thing. It was dog shaped, dog bone shaped. It was big at the ends and tiny in the middle, and it looked just like a dog bone. Of course it did.
So I did four rounds of chemotherapy right. And then 33 radiation treatments. And all this while I have a kindergartner first grader, I guess second grader, preschooler, first grader, and third grader. All little kids and trying to keep their life as normal and stable as possible without really upsetting the apple cart was a challenge, but it was doable. I mean, I had a strong support system. I had a lot of really good friends, have a lot of funny stories about that time. Yes.
[00:11:01] Frankye Myers: What do you think?
We talk about individuals having the same kind of diagnoses, and the outcomes are very different. What do you think now, looking back, what resiliency stands out? What do you think really helped you through that time that I just could not imagine and then being there for your family and your kids?
[00:11:30] Carol Downey: That's a really good question. I think having walked with my brother through his cancer and watched his strength and can do attitude, not letting anything a great story on him, when they were testing his bone marrow for a bone marrow transplant, they take the samples from the pelvic bone.
[00:11:54] Frankye Myers: Right.
[00:11:55] Carol Downey: He got off that table and went and rode his bike 25 miles and came back, and his bike pants have little dots from the punctures. So I think that was a good starting point. Having watched him, he never gave up, and so that probably made me a little hard headed. But I can also say that the team around me was incredible. Every single person that we encountered wanted to give the best care that they possibly could.
[00:12:31] Frankye Myers: All right. So obviously, having a husband who's in the healthcare field at the time, the technology wasn't where it needed to be, nor was the treatment, and I don't think it was talked about as much as it is now.
[00:12:50] Carol Downey: You're absolutely right.
[00:12:52] Frankye Myers: So how did you navigate through that?
[00:12:56] Carol Downey: The one thing that I counsel anybody that I talk to who is going through this, the first thing I tell them is, get a wig. As soon as you have a diagnosis, get a wig. It's a prosthesis that's covered by insurance, and it puts you in control of your story. Absolutely. I understand the warrior mentality. I had that. I used that. But there were times when we would be involved in work events or school events where I didn't want to stand out. I wanted to just not be the topic of conversation.
[00:13:31] Frankye Myers: You wanted to be normal. I wanted to be invisible. Exactly
[00:13:35] Carol Downey: I think I say to everybody, the wig puts you in charge of your story. If you want to tell it, great. If you don't.
[00:13:42] Frankye Myers: Right.
[00:13:42] Carol Downey: People are just wondering about how your hair looks so good.
[00:13:45] Frankye Myers: Absolutely. And I'm glad those things are talked about more.
[00:13:50] Carol Downey: Definitely.
[00:13:50] Frankye Myers: And to your point, there is support.
[00:13:53] Carol Downey: To help a lot more support now.
[00:13:55] Frankye Myers: Yeah.
[00:13:58] Carol Downey: But you've heard me tell this story before. American Cancer Society, who has been involved in cancer for over 100 years, sent the sweetest lady to our house after my surgery to bring a packet of information and some little goodies, an exercise band and things to help me heal from my surgery. And she was, in my mind at that time, old. And so I'm like, okay, I'm a 41 year old mother. I'm not sure I can relate to this sweet little gray haired lady. But then as she left, I thought, wow, I hope I become a sweet little gray haired little lady, which I have.
[00:14:43] Frankye Myers: And you're a beautiful, stunning woman.
[00:14:46] Carol Downey: Yeah. With a lot of gray. But it was impactful to me because it's like, this is a lifetime experience. This is not just going to go away when I finish.
[00:14:58] Frankye Myers: Yes, absolutely. So fast forward, fast forward. A few years go by, you move right back to Hampton Roads area.
[00:15:09] Carol Downey: Right.
[00:15:11] Frankye Myers: And for the next several years you're cancer free, right?
[00:15:15] Carol Downey: Absolutely.
[00:15:16] Frankye Myers: Regular mammograms.
[00:15:17] Carol Downey: Yeah.
[00:15:17] Frankye Myers: You're doing everything you're supposed to do.
[00:15:19] Carol Downey: I was on Tamoxifen at the time, oncology checkups.
[00:15:23] Frankye Myers: Looking good.
[00:15:24] Carol Downey: Right. Walk us through what happens next in 2010. Seems to be a reoccurring theme here. My father passed away from lung cancer in May, and he also was a valiant fighter. It was a quick diagnosis and process for him, so I was kind of reeling from that loss. But I was getting my regular checkups. And at the time Tamoxifen was they had studied it at five year increments and at ten year increments, but not really in between. And somewhere in that five to ten year range, the effectiveness declined and the risk of other negative consequences increased.
[00:16:18] Frankye Myers: Okay.
[00:16:19] Carol Downey: And so around eight or nine years, my oncologist said, I just don't feel good about you staying on this. Let's look at some other post cancer treatments.
[00:16:30] Frankye Myers: Okay.
[00:16:31] Carol Downey: So we were in that workup phase. I'm perimenopausal my particular tumor. The first go around was 75% estrogen positive. And in 1998, the testing was, as you said, less complete. And so that's about all we knew about my tumor. It was HR negative, I think. Anyway. Kind of forgotten, right? But yes, it was what they called vanilla wafer breast cancer. Okay. So we're in this stage of watching me carefully, but I'm not really going through any treatment.
[00:17:12] Frankye Myers: Right.
[00:17:13] Carol Downey: So 2010, we've hit the twelve year mark of my first diagnosis.
My dog. This is again, here we are with the dogs again. My daughter is a senior in high school and she is patting one of our dogs and she's like, mom, I feel a lump. In my back of my mind. I'm like, I know, I've been trying to ignore it for a while. And she's like, mom, you have to get this checked now.And so I call the vet and they said, sure, come on in. We can check her out. And I go to get dressed and as I'm taking a shower, my hand goes over the scar, as it does every single day, multiple times a day when I shower. And I felt something different. And I'm like, that's just weird.
[00:18:02] Frankye Myers: And you do this, that routine.
[00:18:04] Carol Downey: Sure, routine for you. It is. And I think you become much more aware of checking when you've exactly. You're like, I want to make sure nothing else is there. So I just was a little freaked out about that, as you can imagine. After we get the dog checked out and everything's fine, it was just a lipoma. I am able to get in and get another look. And they said, well, what you felt isn't anything, it's just scar tissue. But deeper down we're seeing something. And because of the way the timing went, I seem to always celebrate breast cancer month with breast cancer. So this would have been September, end of September, beginning of October, my next mammogram wouldn't have been for probably eight more months. I was probably midway through the mammogram cycle. A huge difference would have made a huge difference. So they, they do a needle biopsy and they're like, this is cancer, cancer.
[00:19:17] Frankye Myers: Listening to your story. And I'm a healthcare professional, I do not check my breasts.
[00:19:24] Carol Downey: I know I wasn't the best, I'll say that.
[00:19:27] Frankye Myers: And there's been a lot of education and so to incorporate that into a shower routine would only take a few minutes. I'm going to do better. And I encourage our viewers to do that as well. Because to your point, you can identify.
[00:19:42] Carol Downey: Something even earlier, as you said earlier, listening to your body and following up on things that just don't seem quite right. Which the irony of it is what didn't seem quite right was perfectly normal.
[00:19:56] Frankye Myers: Right.
[00:19:57] Carol Downey: But again, it was so far deep that I never would have felt it. Wow.
[00:20:04] Frankye Myers: So tell us about what the treatment plan and next steps. Going through this the second time.
[00:20:13] Carol Downey: So in twelve years, everything has advanced pretty significantly. They're able to type my tumor a little bit more closely and we're looking at surgery, obviously. And because it was so close to the chest wall, I opted for a full mastectomy, went ahead and did the prophylactic double mastectomy just because the environment was still good for creating cancer. Okay. It was a different cancer. It was not the same. It was similar but different. Which I think is important to emphasize because I always feel like that says what we did worked.
[00:20:52] Frankye Myers: Right. So it's less aggressive or more aggressive based on the plan you choose treatment plan.
[00:20:58] Carol Downey: Right. But because of the oncotype and now they can give you some predictors about what is your chance of it coming back. Because now I have a high schooler and two college age kids. I've wanted to do everything. Like I never want to go through this again. Whatever we need to do to decrease.
[00:21:23] Frankye Myers: That risk as much.
[00:21:24] Carol Downey: Get it all. Get it all. So we pursued a pretty aggressive treatment. I will say in those twelve years, things like the Premeds had gotten better. The post oh shoot, what's that? Injection to prevent neutropenia.
[00:21:45] Frankye Myers: EpiGen.
[00:21:47] Carol Downey: I think that's EpiGen.
[00:21:48] Frankye Myers: And now there's something else. I know what you're talking about though.
[00:21:54] Carol Downey: It was helps with the Erythrocytes, right? Yes. And to make sure go back to the bedside. It helps so you don't have to be hospitalized for infections.
[00:22:06] Frankye Myers: Okay. No, I know what you're talking about. Yes, the antiviral type medications. I don't know. Anyway, I'm not even going to go there thinking about something else. Transplant.
[00:22:18] Carol Downey: Anyway, it worked. Okay. And that was not available the first go around. Okay. And now that I've walked with women another twelve years later, I can see that it's come fast forward even more. Got you. But I did the double mastectomy, the four rounds of chemo. Again, different agents, but four rounds of chemo and another 33 radiation treatments because the tumor was so close to the chest wall.
[00:22:48] Frankye Myers: Okay.
[00:22:49] Carol Downey: So there was no room for a clean margin. Okay. And we wanted to make sure that they never touched.
[00:23:01] Frankye Myers: And here you are today.
[00:23:02] Carol Downey: And here I am. And here I am 25 years from the first diagnosis.
[00:23:07] Frankye Myers: That's amazing. That's amazing. And what a great outcome. But I think what I hear is that you really stayed on top of everything you needed to do. You used your support system, you used your physicians, and you picked the best treatment option to lower your risk absolutely. For reoccurrence. And I think that's important.
[00:23:35] Carol Downey: I think the one thing that I would point out, looking back, is I was so resistant to getting the first mammogram. And I stop and think what would have happened if I didn't, if another year went by, if I put it off for five years, what could have happened with that thought? I want to make sure everybody, the outcome isn't going to change. The information inside your body is what it is, whether you look at it or not.
[00:24:10] Frankye Myers: Right.
[00:24:11] Carol Downey: And so looking at it sooner rather than later is going to improve your overall quality of life. And so to me, a mammogram is like getting an eye exam. It's like getting your teeth cleaned. There may be a moment of discomfort, there may be some time of anxiety, but getting that clean bill of health wipes all of that off.
[00:24:35] Frankye Myers: And I think I know sometimes as women we prioritize everyone else, but it's important that we take care of ourselves so we can be here for the.
[00:24:45] Carol Downey: Ones we love 100%.
[00:24:47] Frankye Myers: And so I know you're very passionate about education, and what I admire about you is your philanthropic work that you're doing. And so that's a new title that I want because the information is no good if we don't share, share it. It and help support each other.
[00:25:08] Carol Downey: And it's up to us to help our communities.
[00:25:10] Frankye Myers: It is. It is our responsibility, right? Yes.
[00:25:13] Carol Downey: A healthier community is better for everybody.
[00:25:16] Frankye Myers: Absolutely. Thank you so much for taking time to talk with me today. I just admire you. There are women that you have the pleasure of interacting with, and you're just always such a breath of fresh air. You're a strong woman. You remind me of my mother That's the ultimate compliment, the strong women. And that's what it is. When we don't even feel like we have the strength, we can depend on each other and lift each other up.
[00:25:44] Carol Downey: Well, you've heard the old tale about the elephants.
[00:25:50] Frankye Myers: Oh, no.
[00:25:51] Carol Downey: So apparently, female elephants, they're very communal.
[00:25:55] Frankye Myers: Okay.
[00:25:56] Carol Downey: And if one goes down, if they stumble, if they have some illness, the other elephants come around and literally take their heads and hold her up. And that's what I feel like I experienced through all of my 25 years, people holding me up. Some really pressing in when it was necessary, and others in the orbit when things weren't quite as stressful.
[00:26:25] Frankye Myers: That's one of the sweetest things I've ever heard. Because an elephant's head is heavy.
[00:26:29] Carol Downey: They're heavy, and they don't do well when they're down. They need to be standing up.
[00:26:34] Frankye Myers: So you can imagine the strength it would take for everybody to pull together.
[00:26:37] Carol Downey: And hold them up.
[00:26:38] Frankye Myers: That's beautiful. But I think that just exemplifies the strength of a woman. So thank you so much, Carol.
[00:26:45] Carol Downey: Certainly. I just want to encourage all the young women in the listening audience to go get your screening, mammogram. Now, even if you think you have no history, even if you think you have no reason to worry, peace of mind is the best gift you can give yourself. Get your screening, mammogram.
[00:27:05] Frankye Myers: Thank you for listening to this episode of Healthy Youth. We're so glad you were able to join us today and learn more about this topic. If you would like to explore more, go to riversideonline.com.
 

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