[00:00:00] Adam Walker: This program is supported by Amgen Amgen strives to serve patients by transforming the promise of science and biotechnology into therapies for patients with serious illnesses, learn firstname.lastname@example.org.
[00:00:20] 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. The bones are the most common sites of breast cancer metastasis, which can damage. This is an issue that affects over 70% of people living with metastatic breast cancer.
[00:00:40] Fortunately, there are medications that can strengthen and protect your bones, which can reduce this damage here today to share her breast cancer journey and how she protects her bones. While living with bone metastasis is Kim Kris Kim. Welcome to the.
[00:00:56] Kim Crist: Thank you very much, Adam.
[00:00:57] Adam Walker: Well, it’s so nice to talk to you.
[00:00:59] I really appreciate you taking the time. Uh, we love to start off our show by just hearing your breast cancer journey. And so can you just walk us through what your initial early diagnosis and then what your recurrence.
[00:01:14] Kim Crist: Sure. Um, I was first diagnosed almost 17 years ago and it was not what they would call the normal or what I always heard the normal was, uh, when you had breast cancer, that it was painful when you felt the lump, um, and things like that.
[00:01:33] I had had my, um, baseline done at the age of 30, did everything I was supposed to do. Um, But I was remiss. I’m going back when someone at 35 and then I went again at 40 and then I waited a couple years after that. And I had had a mammogram 40, it showed I had a cyst and a couple years later, what I thought was my cyst was hurting.
[00:02:04] And I never really thought that, you know, that the lumps would hurt. I just thought my sister was bursting or something like that. And finally, and I was very lucky that, um, when I finally went from my, my mammogram three years late that, um, it, while it was cancer, it was just that one spot. It had not gone to my lymph nodes or anything like that.
[00:02:27] Um, And then after I went through all my treatments, I went through seven months of chemotherapy and 40 rounds of radiation. The doctors told me that I was going to be just fine. I was going to be one of the ones that they would never worry about. I was never told about the statistics of reoccurance, what to look out for.
[00:02:51] Um, it took my, uh, I am for the five years of the time that it was recommended. It’s now recommended 10 years for the type of cancer that I had HR positive, her two negative. And I was almost 10 years from my original diagnosis that I was rediagnosed. But backing up from that point, I was working out. And I was having pain in my back to the point where it would stop me dead track in the middle of a workout had actually gone to the emergency room on two different occasions was given x-rays and sent home with muscle relaxers only to end up in emergency room again.
[00:03:36] And then that went on for about six months and my primary care doctor had done some blood work. Yeah. Told me that my tumor markers were slightly elevated, but not to worry about them until they hit a hundred. Well guess what? It’s been seven years since my metastatic diagnosis and my two markers have never hit a hundred.
[00:03:58] So six months after seeing my primary care and being in the emergency room, I went to my oncologist to get my script for my mammogram. And she said, oh, your markers are up. And I asked her what they were neighbor. And 12 point from my primary care visit and that’s, and she’s asked me if I was in any pain.
[00:04:20] I said, yeah, but it’s been from working out. I went to the emergency room a couple of times and they did x-rays and is like, well, x-rays, don’t show cancer. And I’m like, you know, what, what are you talking about? I’ve it’s almost been 10 years. I’m HomeFree um, an MRI led into a CT scan, which led to a bone biopsy, which led to my diagnosis, um, of metastatic breast cancer and almost 10 years to the date because I went for a second opinion and that doctor wanted every, um, biopsy tissue sample everything from my original diagnosis.
[00:05:03] My records were two weeks shy of being destroyed. Um, wow. Because they only hold the records for 10 years.
[00:05:12] Adam Walker: Wow. That’s that’s remarkable. So, so, I mean, you mentioned, you know, the long pause, I guess, between initial diagnosis of recurrence and it sounds like you really, you don’t it’s I think what I’m hearing you say is you didn’t really understand the risk of recurrence is that.
[00:05:30] Kim Crist: Yeah, I did not understand the risk of recurrence. My doctors, my radiologist, my oncologist, my surgeon, all looked at me and said, you’re one of the ones we’re never going to worry about. You know, I was going to be just fine. I was going to be just fine. And you know, and I always had that inkling in the back of my mind, oh, this is going to get me again.
[00:05:53] But then one day you realize you drive by the oncologist. And you don’t think about it. It’s like, I don’t get that sick to my stomach feeling anymore. No, I am. Okay. But then I’ll never tell you, you know, my doctors anyway, never told me what to look out for. You know, I had pain. I go to the emergency room, two different occasions, not one emergency room.
[00:06:16] Doctor said, do you have a history of. Did it ever copied in my mind? Well, could this be bone metastasis? I didn’t know my chances that if it came back, it was going to go to my bones. You don’t, you don’t think about that. You think it was going to go somewhere. It’s going to go to an organ first, but no, that’s not the case at all.
[00:06:34] And confusing, you know, maybe muscle pain and bone pain. I mean, it’s pain. So I was doing Tabata classes and, and kickboxing and, and Zoomba. And you just think that. I pulled something from working out, you know, it’s in my lower back must be that, but, you know, x-ray, x-ray, uh, muscle relaxers and you know, you’re back again.
[00:07:00] And then, and then my spot was hot. I was going for massages and that spot on my back was actually warm to touch almost feverish and still. You know, the doctors aren’t putting too, and it’s not until I went to my oncologist and she saw that my markers had gone up from my primary care in June. And this was in December that they went up from like 42 and I think normal 38, there were 42 or 46.
[00:07:31] And then into summer they were 58. And that’s when she, and I was like, no, I’m not going for an MRI. I said, I’m not wasting. That time. I said, somebody who needs the MRI machine needs to go to the MRI. I don’t need it. And they insisted and here I am. Wow.
[00:07:48] Adam Walker: Wow. So, so what information do you wish you would’ve known during that time period?
[00:07:54] And what do you think you would’ve done differently?
[00:07:57] Kim Crist: Well, you know, I would have, um, you know, the first time you were diagnosed, at least for me, you want to try to be as normal as possible. So I buried my head in a work, you know, as a boy scout leader and in a Sunday school teacher, you do everything you can and you work, you know, you’re trying to make everything you know, around you.
[00:08:20] Perfect. You know, when it’s not, and they didn’t let anybody help me. I had a mother who was a nurse and I kinda just like, I got this, I got this. And you know, I didn’t ask enough questions, I guess I didn’t, you know, want to know. But then you also have a level of trust when you, your doctors tell you you’re going to be justifying.
[00:08:41] I’m not going to, you know, you’re going to be one of the ones I don’t worry about. Well, when I started having pain, I never put two and two together. Cause they never told me, you know, that once you have it, you know, one in eight women get breast cancer. Well, one of those eight, you know, every eight women who have early stage cancer are going to get it again.
[00:09:02] Pretty bad odds. When you say 25 to 30% of women get metastatic breast cancer after they’ve had early stage, that is a huge number to me. And that was never told to me. And I didn’t do the research the first time I did the second time. Of course, you know, everything was, was newer than, you know, You know, by the time I, when I was first diagnosed, I was just getting, uh, emails and, you know, fax machines and all that other stuff, you know, information’s a lot more readily available.
[00:09:34] Um, now I research everything. I trust nothing. I get second opinions. I, I go online and if it’s getting treated, you know, if I’m taking a medicine, I just don’t read the label and the patient information, I go and read the doctor’s information. What, you know, what is, um, you know, stage one, stage two, stage three of you know, of a chronic side effect of a medication.
[00:10:03] And I read everything I read, I read everything.
[00:10:07] Adam Walker: Yeah, that’s smart. That’s smart. I think doing, doing the research, uh, doing the due diligence is important. So, so shifting to talk, talk about sort of bone health for a minute, as someone living with bone metastasis, how do you protect your bones and keep them strong?
[00:10:25] Kim Crist: Well, you know, that’s not, you know, that’s also scary when you first diagnosed and you’re looking at a picture of your MRI and you’re seeing. Your cancer’s eat, actually eating your bones. You know, I knew right away and I felt grateful that I had started an exercise program after my first round of cancer, because I had used it as an excuse to put on weight.
[00:10:52] And finally, one day I woke up, I’m like, oh my God, how many years am I going to use this as an excuse to get. So I, you know, I had started, you know, and I felt good about knowing that my bones are strong. I ate healthy, I ate protein and, you know, and all the things that I didn’t eat when I was younger, you know, as far as vegetables go, um, then, you know, and I started investigating, you know, what was out there.
[00:11:21] Um, Besides, you know, the oral drugs that are Monda stopped the chemo what’s, what’s going to benefit, you know, my bones directly might not stop my cancer, but what’s going to help me support my bone.
[00:11:38] Adam Walker: Gotcha. That’s great. That’s great. Uh, and, and I love that, you know, that motivation and, and speaking of motivation, I’m told that you’ve done many years of the three-day, which is just incredible.
[00:11:50] Uh, what do you take away from that event and why do you think it’s so important?
[00:11:56] Kim Crist: Well, you know, I first heard the commercial is almost 16 years ago and I wanted to work. I signed up and then I was diagnosed and never walked that first year. Um, that was in Tampa bay. And I had a friend who walked for me and going, I remember going to the closing ceremony and actually almost kind of feeling angry about it because everybody was in pink and I’m thinking.
[00:12:25] They don’t have cancer. I, you know, how are they in pink when you know, it was just, it was, it was overwhelming. It was overwhelming. But then the next year when I did the walk and I saw the people out there and talk to them and why they’re walking and listening to stories, it’s really firsthand education.
[00:12:46] And for me, um, well sometimes painful and you’re out there and you meet women who have. Early stage diagnosis. So they’re walking for a friend or they’re walking for a family member who’s been diagnosed, you know, to tell them what to look out for, you know, to ask questions in, in most important above anything is to be your own advocate.
[00:13:08] Just don’t take what the doctors say as a truth because they’re trying their best, but they are practicing medicine and it is. Kind of in, and everybody and every body, I’m not talking about everybody, but everybody, every individual body itself make up the chemistry of your body different. So you’re going to react differently to drugs.
[00:13:33] Then, then the next person sitting you. So you’d have to advocate for yourself and you have to know what to look out for. And I just think it’s so empowering when I go and. Talk to somebody I’ve never met in here, their experiences and share mine that these stories start spreading, you know, almost like wildfire, you know, it’s, it’s no different than what the world’s going through right now with, with COVID.
[00:14:03] Everybody is sharing their stories and on. You know, being vaccinated or not, or having it, or how, you know, how have they been protecting themselves? You don’t have to do the same thing, you know, with cancer, you have to, um, investigate and, you know, dig further.
[00:14:28] Adam Walker: That’s so important being it, being a part of the community, sharing your stories and just recognizing the strength of that community, I think is just, it’s just so critical. Um, thank you for it. Thank you for sharing that. So I guess last question. Uh, what final advice would you like to share with our listeners who are also living with bone Mets?
[00:14:49] Kim Crist: One is to, you know, stand up for yourself. If you’ve got a gut feeling about something. Trust your trust, your gut feeling research. What’s your on research. What else is out there? Um, don’t be afraid to talk to your doctor. Don’t be afraid to challenge your doctor. I would not be here. I promise you seven years now.
[00:15:15] If I didn’t challenge my doctor every step of the way, and if we had a disagreement, I would go and get a second opinion. And oftentimes. And I’m not a doctor, but you know, your body and, you know, and I think that you have a positive outlook for something I would say stay positive, because if you truly believe that something is going to work for you, it’s going to work for you.
[00:15:39] That was on a drug. That was when I first diagnosed that adjusts had that market two weeks, you know, and my doctor on the Permian. And I’m like, are you kidding me? You’re going to give me a pill when you gave me chemotherapy. When I had early stage now I’m stage four and you want to give me a pill? I don’t think so.
[00:15:58] I need chemotherapy along, went to a second opinion. Nope, Nope. This is what, this is the newest thing. I’m like, okay, let’s do this. And then she thought I was having a breakthrough and I disagreed. I’m like, well, how do you know I’m having a breakthrough? That part of my body was actually in my thigh had never been scanned before.
[00:16:16] I don’t know if that’s been there from day one or if it is new, I said, I don’t want to go off this. Because that could have been there from the very beginning. And I’m with, for a second opinion, that doctor agreed with me. I got two and a half more years out of that drug. I would have listened to her. I would have been, I have to be out of therapies right now.
[00:16:35] I mean, I’m on a trial right now. Um, again, lucky that something new came up that I had bone biopsy done, and that was something I asked for. Well, let me do another biopsy. What if my cancer shaved cause. Many women don’t know, your cancer can change. You can start off with HR, positive her two negative, and it can totally change on you and become triple negative.
[00:17:00] It can become, you know, a jar, you know, negative. I mean, it can just morph in your body and what, the late six months after that bone, there was a new trial out there. So you’ve got this genetic defect. Oh, we have something that’s. And I’ve been on that. I’ve been on this for seven months now. It’s working, my tumor markers are down.
[00:17:22] Um, I had no progression and, um, so, you know, stick up for yourself. Don’t be afraid to question the doctor, listen to your gut. If you feel that something’s not working for you, you know, stand up. That’s the biggest thing. Believe in yourself. Stand up for yourself. Yeah, they’ve got a hundred patients. They try their best, but they’re human as well.
[00:17:47] And you need to take care of yourself and then you can’t take care of everybody else in your family. If you don’t take care of yourself. Yeah. That’s
[00:17:55] Adam Walker: great. That’s great, Kim. I really appreciate that. I mean, that, that is. The message that resonates through all of these conversations, all of these interviews, it’s always advocate for yourself, know your body and advocate for what, you know, deep down inside of you is the right thing for you.
[00:18:11] Um, so I really, I really appreciate you sharing that. Well, Kim, uh, this was great. I really, really love your perspective, uh, on, on both your health and in your life. Thank you for letting us be a part of it for today. All
[00:18:22] Kim Crist: right, Adam, thank you so much for your. Plus everybody out there. Thanks
[00:18:28] Adam Walker: to Amgen for supporting this podcast to learn more about Amgen’s mission, to serve patients with a cutting edge science-based approach, follow Amgen biotech on Instagram and Facebook.
[00:18:49] Thanks for listening to real pink, a weekly podcast by Susan G Komen for more episodes, visit real pink.com and.org 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 at AIG Walker or my blog, Adam J walker.com.