[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 more at Amgen.com.
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.
Whether you’re healthy, have just been diagnosed with breast cancer or are living with metastatic breast cancer, the connection between breast and bone health is vital. Some breast cancer treatments can affect bone health, putting women at higher risk for bone density loss.
The bones are often the first site of metastases for almost half of women diagnosed with metastatic breast cancer, which can lead to bone complications including bone fractures and spinal cord compressions. Bone strengthening therapies may be added to treatment plans for these women to protect bones and reduce risk.
Today’s guest is passionate about educating women on how to take control of their health by learning what to look for, what questions to ask and what they can do to lower their risks of recurrence. Here today to share her breast cancer experience and how she protects her bones while living with bone metastases is Kim Crist.
Kim, welcome to the show!
[00:01:24] Kim Crist: Thanks Adam.
[00:01:25] Adam Walker: So nice to talk to you to see you again, and let’s just dive in. I want to hear about your breast cancer story. Take us through that experience of your first diagnosis,
and how long after that you were diagnosed with metastatic breast cancer?
[00:01:39] Kim Crist: Okay. I was first diagnosed, uh, early stage breast cancer 18 years ago. I had a lumpectomy followed by chemotherapy and radiation at the time was the normal course of, of procedures. Um, and at the end of both the chemo, the surgery, the radiation, my radiologist, my oncologist have told me I was going to be just fine.
I was one of those patients they weren’t ever going to have to worry about. I went on a, uh, I have estrogen HR-positive her two negative type breast cancer. So I was on an estrogen blocker for five years. Um, every day you think about it, you drive by the oncologist’s office, you’d get that sick to your stomach feeling.
And then one day it’s five years later, you’re off all kinds of drugs and you think I’m fine. I’m home free and almost close to the 10-year mark. I started having a lot of pain in my back. Um, I was working out a lot, had been to the emergency room two times. None of the doctors at the emergency room asked me about my history of cancer, nor did I ever think that the pain I was having was actually in my bones.
I thought I had strained a muscle or something because the doctors there took x-rays. They said you’re fine. Um, but x-rays don’t show bone cancer only MRIs do or CT scans or pet scans. So again, never putting two and two together. Um, so. A couple of months after that, after two trips to the hospital, with pain relievers, muscle relaxers, I go to my oncologist’s office for my, um, annual breast exams, prescription script, and, uh, to get the mammogram and.
My tumor markers are up. She did some blood work and I said, oh, what are they? And she told me what my markers were. And I said, oh, that’s not bad. Six months ago, I was at my primary care and there were 44. He told me not to worry about it until they hit a hundred. And they were at 58 at that time. And anything over 38 is not normal.
Um, you know, again, I was having pain in my back. My tumor markers are up and they still. My primary care is telling me I’m fine. I don’t put two and two together. And, um, you know, luckily in that six-month lapse, you know, it stayed in my bones and it didn’t go anywhere else until this day. I’m still, it’s still in my bones.
Um, but I wasn’t, you know, my doctors never told me about my risk for reoccurrence and I found out that it’s about 30% of women who have breast cancer will get it again. And one of them and get breast cancer and 30% of those are going to get it again. That’s very high statistics. I think I would have been a little bit more alert to my blood test and my visits to the emergency room.
So then, I mean, is it safe to say you found out essentially about your risk of recurrence when you found out that you had recurrence? Is that, is that kinda what you’re
saying? Yes, that’s exactly right. Not till I went to get my prescription for a mammogram. And my oncologist goes, oh, your tumor markers are up.
Maybe we should get, you know, an MRI. Have you had any pain? I said, oh yeah, I’ve had pain. I’ve been to the emergency room twice and they’ve done x-rays and I’m fine. I don’t need an MRI. Save that for somebody else. She goes, well, no, your tumor markers are up. I said, yeah, but they were up back in June. This was December.
And I said, my primary care said that don’t worry about until they hit a hundred. Well, guess what? It’s almost eight years. They’ve never had a.
[00:05:11] Adam Walker: Wow.
[00:05:12] Kim Crist: Yeah, um, so bad advice all the way around, honestly.
[00:05:16] Adam Walker: Um, so then when you were diagnosed with metastatic breast cancer, at what point did your doctor start to talk to you about bone health?
[00:05:24] Kim Crist: Um, actually right away after that point. Now, prior to that, that was one thing I was diligent on is when I had my mammograms, I did get bone density. So I knew that my bones were healthy. Um, you know, I did exercise and I do walk a lot. Um, so, so I knew that I had been taking care of my bones, but that was a concern because cancer eats away at your bones.
I mean, that’s what it does. The cancer cells just kind of chew away at your bone. So they do become harder and brittle and, um, you know, less dense. So I started out our own, uh, treatment right away.
[00:06:07] Adam Walker: Yeah, and so let’s talk a little bit more about that. Like what, so tell me about the bone treatment and then tell me, are you doing anything else to keep your bones as healthy as possible?
[00:06:16] Kim Crist: Um, well the bone treatments, the first one I started on was, um, Uh, I had to go into the chemo room, you know, the, the room that you try to avoid for as long as possible. And I’ve been lucky all this time to avoid it other than early on for my bone treatment. She had me on an, um, an infusion type treatment.
So I’d have to spend an hour and a half in this room looking at my future. You know, all these other patients who are struggling for their lives on their, for a bone treatment. And it was, um, very depressing. And then I found out about a different. Bone treatment. That was an injection once a month. And I got really, really upset.
I said, why would you ever put a patient back there in an infusion room when there’s an injection type? That’s once a month, that takes two minutes versus an hour and a half. And then also my first treatment reason why I switched also was it was starting to damage my kidneys. So, um, but yeah.
[00:07:20] Adam Walker: Hmm. So, so let’s talk about that.
I mean, obviously it sounds like there were revelations of information that came to you much later than you would have liked. Right. And so, so what information do you wish you would have been armed with at what point in time and, and what do you feel like you could have been more proactive about in hindsight?
[00:07:42] Kim Crist: Well, it could have been more proactive knowing my risk to begin with, you know, for metastatic cancer. Um, Yeah, that was that’s number one, you know, knowing that your, my tumor markers are up and never putting two and two together, understanding, you know, bone pain versus working out in muscle. I had, uh, it was hot to touch my back and in my mind, I think of inflammation that its muscle, um, where it’s not muscles when they’re overworked, you know, typically don’t heat up the way they do.
It was red to look at hot, to touch. And, and then once I started and when I found out that actually did have metastatic breast cancer, I was more concerned on the treatments, you know, to stop cancer and not just what treatments. Um, there were to keep my bones healthy, to help, you know, the stronger the bone is the harder for the cancer to kind of eat its way.
And, um, I didn’t do my research until, you know, after the fact, until all of a sudden my kidneys were starting to fail and I’m like, well, you know, I got to find something else. So,
[00:08:59] Adam Walker: So, what are some of the questions that you would suggest that women ask their doctor in order to take more control over their health and understand their risks as it relates to bone health.
[00:09:09] Kim Crist: Well, I think they should start a program well before any kind of breast cancer diagnosis. Um, while before, I mean, we were, you know, start doing your baseline with your mammograms, you know, make sure that you’re getting your bone density tests and knowing what your risks are just for, you know, healthy bones to be.
Um, so, you know, I think you need to start that program early and then case whatever happened that you do have metastatic breast cancer, you know, that you are starting at least with the healthy bone structure, um, and then understanding what, what types of medicines are out there for you to take, um, to help keep your bones healthy and talk to your doctor about the risks and the benefits of each type that are out there.
And, um, But I’ve always told my doctors I’ve come to, you know, be very vocal to tell other patients to have a voice. If you have something in the back of your mind, that doesn’t sound quite right. Probably it’s not seeking a second opinion. I think, uh, I think it’s a law. Don’t quote me on that, but I think you’re entitled to a second opinion.
And it’s covered. So don’t be afraid to challenge your doctors and I’ve challenged my doctors along the way. And I think I would have probably run on therapeutics. Had I not challenged my doctors along the way and got second opinions.
[00:10:34] Adam Walker: Yeah. I mean, it’s so important to be your own advocate. You know, I’ve talked about that many times on this show, but, um, but you know, your voice the best and you know, your body the best and, and you’ve got to advocate for yourself when you know something.
Not quite right. Um, so, so why is it important to be aware of the connection between breast and bone health and, and, and talk a little bit more about how patients can advocate for yourselves and why you think women aren’t just more aware of this in general?
[00:11:01] Kim Crist: Um, you know, I guess it depends on your doctor or Ms.
Navy, some women don’t, um, don’t think about it when they go to their annual checkup. No, sometimes it’s the primary care that recommends it. Sometimes it’s the gynecologists. But, um, when we think about our health, we always think about eating, right. Are we taking our vitamins? We think about our blood work.
Well, we don’t really think about, um, you know, And they support our entire body. They protect our organs and it’s just, you know, you take, for example, it’s in your spine and what starts happening when you’re starting to find starts collapsing and it puts pressure on your organs and all kinds of things can happen.
Nerve damage, um, atrophy to your muscles, and, um, the list of side effects go on and on. If you don’t have a whole health healthy bone structure and. It’s just important to start adding it into your regimen. If you haven’t already to talk to your doctor about starting that baseline, knowing where you are, and if you’re borderline start introducing, you know, a bone health medicine that, um, whether you’re metastatic early stage or no stage.
[00:12:17] Adam Walker: Yeah. Yeah. I mean, you make a great point, right? We talk a lot about health eating, exercising. We don’t think about bones. So I don’t think about bones so much. Right. And I talk about this all the time and we should be, we need to be very considerate of that. So important. So
We don’t put two and two together that exercise actually helps the bone.
[00:12:36] Kim Crist: We always, we always think about our muscle and. And, um, muscle versus fat. And we don’t really think about the bones that really kind of are the baseline for, for everything else.
[00:12:46] Adam Walker: Absolutely. Absolutely. Well, Kim, this has been great. I’m curious. Do you have any final advice or thoughts that you’d like to share with our audience?
[00:12:54] Kim Crist: You just, you keep your, keep your appointments. That’s the one thing I think that’s kept me healthy as I would make my appointments. I keep them, I never skip them. I take my medicine on time, same time every day. And, uh, just be you’re the general manager of your body. And I look at my doctors as they are the coach, you know, they’re, they’re trying to, they’re making the plays and then sometimes I don’t always agree with them.
I’m like, nope, we’re doing something different and you know, it’s teamwork, it’s teamwork, and everybody’s gotta be involved. You can’t stick your head in the sand about your health and, um, you know, it’s okay to, to disagree sometimes.
[00:13:32] Adam Walker: Hmm. Yeah, absolutely. Absolutely. Well, Kim that’s great advice. Um, really appreciate your story and you bringing to light the importance of bones and considering bones in, in overall health in general, but certainly within the treatment of breast cancer and just, you know, thank you so much for your time today.
[00:13:48] Kim Crist: I appreciate it. Thank you.
[00:13:52] Adam Walker: Thanks 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.
Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit RealPink.com. 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