[00:00:00] Adam Walker: 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
[00:00:17] Imagine spending the last 30 years working as a physician’s assistant, with the last 12 in oncology, and then suddenly finding yourself on the other side of that conversation. Today’s guest, Lily Cabezon, is a senior physician assistant in urologic oncology. After becoming very sick with COVID in 2020 and losing significant weight, Lily discovered a lump in her breast.
[00:00:41] Her mammogram revealed a mass that led to a stage one diagnosis. Before beginning chemotherapy, staging scans revealed that the cancer had metastasized to her spine. She went on to undergo chemotherapy, spine treatment, a year of immunotherapy, and a bilateral mastectomy with extensive reconstruction.
[00:01:01] Lily’s here today to talk to us about how she kept going through it all, and how breast cancer changed her perspective. After years of telling patients that they had cancer, she suddenly understood what that word meant from the other side, not just for the patient, but for everyone who loves them. We’re thrilled today to have Lily on Real Pink, and in our Don’t Fail the Girls campaign this October.
[00:01:23] Breast cancer is personal for her, and she knows how much is at stake. She’s using her voice to help make breast cancer impossible to ignore, and to help drive the research, support, and action needed to end it. Lily, welcome to the show.
[00:01:37] Lily Cabezon: Thank you for having me.
[00:01:40] Adam Walker: I really appreciate you being here, and this, I think this is gonna be a really interesting conversation.
[00:01:44] In, in some, maybe somewhat of a unique one. But let’s start at the beginning. Tell us about your career and that, that time you spent in oncology, and then how you first noticed that breast lump.
[00:01:55] Lily Cabezon: Sure. So I’m working as a physician assistant for 30 years, and for the past 12 years I’ve been in urology oncology.
[00:02:04] And then in the summer of 2020 I got into an executive MBA program at Cornell, dual degree. Then COVID hit. I was already in school. And I felt a lump. While I was in school, I felt a lump. I couldn’t get a mammogram right away because of COVID. Everything was kind of delayed, and then I finally had one done in October while I was still in school.
[00:02:32] And then I was told that I had a three-centimeter lump in my breast. And then I got a biopsy, and then they told me it was cancer. And then I had some scans after that, and they told me I, it had spread to my spine. And then I had a port placed, and then everything started. And in between my first and second chemotherapy, I got radiation to my spine.
[00:02:59] Adam Walker: Man that’s a lot. And how did they find… Like, how did it go from stage one to, like, finding it in your spine? Like, what was that like?
[00:03:07] Lily Cabezon: Yeah. So after the biopsy, they told me what my pathology was. They, I knew that it was triple positive breast cancer. I knew that they hadn’t done any staging imaging to see if it had spread, and then my oncologist said, “Well, let’s just scan you.
[00:03:26] It’s three centimeters. We’ll scan you top to bottom and see if there’s anything that’s there.” So they did a CT scan, and they also did a bone scan, and on the CT scan, they found that there was a significant portion of my third thoracic s- thoracic spine that had cancer in it, that looked like cancer, and then I had to have a biopsy, and then I had to have radiation.
[00:03:50] So it’s stage one, and then until they find something, spine is one of the first places it can spread to, and as soon as it spreads away from the breast, further away it’s considered stage four metastatic breast cancer.
[00:04:05] Adam Walker: S- yeah, I mean, what what was that like? I mean, you, I mean o- obviously, I think it’s a obvious…
[00:04:13] it’s always a surprise that stage one’s got to be a s- a shock to your system, but you went, I mean, you went from stage one to stage four pretty abruptly. I mean, walk us… Like, what was that experience like for you?
[00:04:24] Lily Cabezon: Yeah. So I was actually home that day from work. I think I’d taken the day off because everything was happening so fast, and I was getting myself ready to treat stage one cancer.
[00:04:36] I was trying to be hopeful and things like that, and I get a call from my oncologist saying, “Hey, they read your scans, and it spread to your spine.” And it, I was devastated. I remember crying a lot, and I remember feeling defeated and not sure what the next step was. I didn’t know what was possible for me.
[00:05:01] I didn’t understand the challenges placed in front of me and I didn’t understand a lot about metastatic breast cancer at that time.
[00:05:10] Adam Walker: So I mean, it, like, w- I gue- I guess you mentioned the phone call. I mean I wonder if we can go back to that for a minute. I mean, you’d, you’ve been on the other side of that, right for years and been on the, the clin- the clinician’s side of that I guess.
[00:05:23] What was it like being on the patient’s side and hearing that about yourself, a- and how did that sort of change your understanding of, like, what it means to get that diagnosis for the patient and for their family?
[00:05:37] Lily Cabezon: I mean it’s the first time you hear that you have cancer, it’s devastating.
[00:05:43] Then going from stage one all the way to stage four, it’s earth-shattering, it’s life-changing. And then to feel like I’ve delivered this message to other people throughout my career, and I’ve done my best to try it with integrity, and empathy, and kindness and I f- at that moment, I had realized that maybe even though I was doing my best, I wasn’t doing a good enough job.
[00:06:12] Adam Walker: I mean, well, any, in any, like, w- you’ve realized maybe you weren’t doing a good enough job, like, do, were there any specific things you think you could have done better in the past? Or like, it just, you just, like, a general feeling?
[00:06:24] Lily Cabezon: I think it’s just a general feeling, but in terms of from hindsight’s 20/20, right?
[00:06:31] So what I know now would’ve helped me throughout my career about w- how I was doing then to help people with a diagnosis of cancer. I think that I would encourage people that are getting pathology reports from biopsies to bring a family friend, bring someone in your family with you, bring someone that you trust, someone that after you hear the d- the words cancer, sometimes you really can’t absorb it, you can’t wrap your head around it, and you don’t hear any of the words that come after that.
[00:07:03] And I would encourage someone to have someone you trust there that can be your ears for you, that can write things down for you, and just to be there to hand you a tissue or to lean on someone.
[00:07:14] Adam Walker: Yeah, I mean I would imagine it gives a lot of perspective. Though I would also imagine that you probably did a much better job in the past delivering that news than you really think you did.
[00:07:23] It, so you seem like a pretty empathetic person to me, so just for what that’s worth, I appreciate that. Thank you for saying that. Yeah. So we talked a minute ago about how- You went really quickly from diagnosis to stage one to stage four. Did that experience change the way you think about, like, delays and barriers that other cancer patients have to face?
[00:07:49] Lily Cabezon: It has. I’ve worked at the same institution for 30 years. I mean, at that point, I was 25 years in, 24 years in, same place working intimately across the board in different departments. I was in the hospital until 2014, where I did a lot of inpatient things and surgery and all this kind of stuff, and then
[00:08:11] So I know and knew a lot of people. My- I started there as a new grad, so I’m a senior PA now, so I’ve grown up there. I consider them my family. Because of my time that I’ve put in and the people that I knew, things happened at a very rapid pace for me. One day a mammogram, the next day a biopsy, two days later, pathology, 10 days later, a port.
[00:08:34] Before my port placed, I had imaging done. Imaging was done, and I went from stage one to stage four. Chemo started the Monday after, like three days after. For me to say to someone, “I don’t have your pathology report,” or for anyone to say to someone, “You can’t see your pathology report for a week to two weeks,” it’s a very long time.
[00:08:56] I am extremely privileged, and I’m not saying that I think two weeks is a long time, but honestly, I do think overall the healthcare system can be, can do a better job. Hire more pathologists, hire more providers, pay them better. M- more access, more care in more languages everywhere, for everyone. So, yeah.
[00:09:20] Adam Walker: Yeah. That’s right, yeah. I think you’re right about that. I mean, that, that… I would imagine for someone that’s waiting on that pathology report, that is probably some of the longest two weeks they’ve ever experienced and that’s and within that two weeks you’ve got to live your life, right?
[00:09:35] And how do you do that when that’s lingering in the back of your mind? It’s got to be so difficult, so… Now I also understand you, you made the decision for a bilateral mastectomy and full reconstruction after learning you had the metastatic disease. And so, so what what went into that decision and how important was it for you to feel like you were making your own choices about your own body and your own treatment?
[00:09:58] Lily Cabezon: It was really important. For stage one you would have either a lumpectomy or a one-sided mastectomy, and maybe you’ll get radiation, maybe you won’t. If you have stage four, there is a way to treat it without having surgery. Radiation, just take out one breast, replace one breast. But I wanted to do everything to the maximum capacity of what could be done.
[00:10:27] Whatever I could do, I was going to do it. I did hear whispers at some point to the surgeon that I was there seeing in the hallway like, “Well, she’s got stage four. What are you gonna operate on her for?” And w- whoever that person was, I don’t know who it was, I’m not gonna say where I got treated, but it made me feel like I am gonna make this decision regardless.
[00:10:54] I’m a provider, I’m a PA, I understand what’s going on. And then in my mind I felt like, well, what happens to those people that don’t speak English? What happen to those people who don’t have families to advocate for them? Like, how hard is, are these decisions to be made if they don’t know what I know?
[00:11:12] So it’s very it’s been quite a journey I’ll tell you that, so.
[00:11:17] Adam Walker: Yeah, I mean I love that perspective, and I think you’re right. I mean, I think a lot of people Have a, a, a journey that lacks a lot of light and a lot of enlightenment, I guess. And and we’re trying to bring light to that, I think, right, on this show.
[00:11:31] So yeah, I really appreciate your perspective there. The- talk to me about the weekly photo journal that you kept throughout the reconstruction and tissue expansion, and why was that important to you to document your experience and what do you wish people understood about what reconstruction could really
[00:11:48] Lily Cabezon: be like?
[00:11:48] Right.
[00:11:49] So when I got diagnosed, it was October 2020, so the COVID epidemic started in April or March of that year. I didn’t get a chance to see most of my family or my friends. I went through a lot of it with the help of my brothers and no one else around because they just… You just couldn’t be with other people, right?
[00:12:12] Especially me, I didn’t want to get sick, whatever. The photo journal was for me to share with my best friends from college. I have seven best women friends from college, and so the eight of us, so there’s eight of us. Yeah, eight of us. We’ve been friends for almost 40 years now, and I was the one of eight, okay?
[00:12:38] I was the one person out of the eight women that Came down with breast cancer. And they I talked to them every day, I Zoomed with them every day, but they couldn’t see what was happening. And also, for me, I wanted to remember what I went through so that I can help other people get through it. When you are going through recovery from a b- bilateral mastectomy, the reconstr- reconstruction’s not easy.
[00:13:12] It’s not pretty. It doesn’t look perfect, and plastic surgery does wonderful things. So I did, I took a photo journal of when they drew on me before surgery. I took images of every week when they had to inject saline into the expanders, because that was very painful. I took pictures of when my hair fell out, and the blood under my nails during chemo, and the whole thing.
[00:13:37] Because I don’t think people understand how much it takes to get through it. And it’s not to scare anyone, but I wanted to show people that even though it’s terrible, and it looks terrible, and it seems like an overly daunting task, that you really don’t know what the strength that you have, and the robustness, and the integrity until it’s done.
[00:14:08] And I did it, and it’s done. So I wanted to be able to share that with my friends, my family, anyone I thought that who would benefit from it.
[00:14:19] Adam Walker: I love that. And that’s got to be so difficult to be, like, th- that level of vulnerable with people. But I think there’s a great deal of value in it, and so I’m glad, so I’m glad.
[00:14:31] I’m glad that you did that. Now now do you have any lingering side effects from your treatments? And if so, how have you dealt with those or worked around those?
[00:14:43] Lily Cabezon: So I am a small percentage of people that developed severe peripheral neuropathy in my hands and in my feet.
[00:14:53] The thing that bothers me the most is the peripheral neuropathy in my hands. There’s three kinds of types of situations. It’s you develop extreme peripheral neuropathy, and it gets better. You develop extreme peripheral ne- neuropathy, and it gets a little bit better. And then you develop extreme peripheral neuropathy, and it never gets better.
[00:15:12] And I’m on the never gets better side. So it’s been six years. I have extreme pain in my hands all the time, pins and needles. It makes it difficult to tie your shoes put on socks, like things like that. Open jars. And I’ve seen… I’m seeing the top pain management people, physical therapy people, ev- Like I’m being well taken care of.
[00:15:38] And it’s the most challenging part, I think, because the chronic day-to-day pain is something that I didn’t think would happen. I didn’t know it could happen. I didn’t think I’d be the small percentage of people that it would happen to. And, I feel like a lot of people don’t talk about it.
[00:16:01] Adam Walker: Yeah. I m- I mean I don’t know that I’ve heard anyone talk about it, to be honest with you having done a lot of these interviews.
[00:16:09] So I really appreciate you sharing. And you… Well, describe what that is by… I mean, I think you, you mentioned, like, pain. Is that what that i- like… Sorry for asking a non… I’m a non-medical person, so , so explain what that is to me, if you-
[00:16:22] Lily Cabezon: So peripheral neuropathy means that, So I’ll just say from how I feel, that way it’s completely factual.
[00:16:31] In my hands I have a tingling sensation of pins and needles all of the time. It’s if you sit on your leg wrong and your foot falls asleep, and you get the pins and needles, and you try to stand on that foot and it hurts, right? That’s my hands all the time. So it’s tingling all the time.
[00:16:52] If I try to squeeze something or open a jar or a bottle of milk or whatever it is that requires pressure using my ha- shaking someone’s hand, per se it hurts. It hurts. And it’s a daily decision as to how much of that pain I would endure for the good of it all, right? Like, if I want to put on a pair of tights and a skirt, then I will pay the price that kind of thing.
[00:17:19] If I… When I meet 5 or 10 new people I m- I might choose to do fist bumps if there’s a whole line of people.
[00:17:26] Adam Walker: Yeah, it sounds like… Fist bump sounds like a good plan there. Yeah.
[00:17:29] Lily Cabezon: Yeah. But if I feel like there’s one person there and they really have a connection to me and they want to shake my hand, then I will shake their hand, but that’s my decision to make and not for anyone else to feel bad about, right?
[00:17:42] So it’s difficult. It is… It’s not something that is easy for me to manage. I am obviously still learning how to cope with the chronicity of it, and it has affected every decision, every minute of the day of my entire life and career. So I’ve had to make changes in the way I practice my career and changes in how I live my life.
[00:18:16] But in the back of my mind, if I had ever stopped the chemotherapy… And it was my choice, 100% my choice. I was offered by my oncologist, and she said, “Your hands are hurting more. You’re developing more symptoms. Do you want to stop taking the chemo? You can stop.” And I said, “If I stop now, what are the chances it’s gonna come back?”
[00:18:40] And she couldn’t answer that. She said, “I think it’s gonna be okay.” I didn’t want- To have a what if in my head. Well, what if, like what if it comes back and I didn’t do all the chemo? But so it… You, do you know what I mean? Like-
[00:18:57] Adam Walker: Yeah, no, I do. Yeah.
[00:18:58] Lily Cabezon: Yeah.
[00:18:58] Adam Walker: That makes sense, yeah.
[00:18:59] Lily Cabezon: So I chose to go forward.
[00:19:02] Yeah. And this is the consequence, but the bottom line is I’m still here.
[00:19:07] Adam Walker: Yeah. Right? That’s right. I’m still here. That’s right. Well, you, I mean, you said earlier you’re all in. Like you’re- Yeah … you’re going the whole way, all in, and and I like that attitude. I really do.
[00:19:19] Speak- I guess speaking of going all in, you’re a part of Komen’s Don’t Fear The Girls campaign this National Breast Cancer Awareness Month. What made you decide to participate?
[00:19:28] Lily Cabezon: I was asked to participate, and I feel like I have not seen a lot of people talk about the things that I talk about or hear about a- P- providers such as myself talk about their experience with cancer.
[00:19:48] I think sometimes people think that healthcare workers don’t get sick. We do. We’re vulnerable like everybody else. We have pain like everybody else. We get bad news like everybody else. And I wanted people to see how they can face challenges they’ve never l- faced before and go through it. I mean I did not stop going to school.
[00:20:17] I continued and completed my dual degree at Cornell.
[00:20:20] Adam Walker: What?
[00:20:21] Lily Cabezon: I never quit.
[00:20:21] Adam Walker: You really are all in. Like, that’s how you go.
[00:20:24] Lily Cabezon: I’m always in. I- th- that’s how I roll. That’s how I roll. So I did not stop my dual degree MBA, MS in Healthcare Leadership. I went through it. I told my graduating class that I did not want to graduate with anybody else.
[00:20:37] We started together, we’re ending together. That’s how it goes. And and I worked throughout chemo too. I took a couple weeks off when I got chemo, and then the third week I went to back to work. I worked from home. I need to do things. I need to be busy. I know what it I know what it takes for me to, like, have the drive to go, to do, to be helpful.
[00:21:01] I I need that, so if that’s-
[00:21:04] Adam Walker: You’ve got the drive. I mean, that, that much is clear. You got the drive. I’m, I am beyond impressed. So wow I appreciate that, you sharing that. Thanks … now, so you… I mean, speaking of sharing you said you want to share your story because you want to help other women and men feel less afraid or ashamed.
[00:21:22] What have you learned about survivorship and I guess in particular living with metastatic breast cancer that you wish you’d heard when you were first diagnosed?
[00:21:31] Lily Cabezon: I think I wish that I knew that metastatic breast cancer can be treated like a chronic disease and not, excuse the words, final terminal thing, like a death sentence.
[00:21:47] Okay? Like, it’s easy, and I’m sure people have told me that I had a treatable kind of breast cancer even though it spread to your spine. We’ll just watch you closely, things like that. But when, it’s just human nature, when people find out that you have stage four cancer in anything, people’s faces change imme- immediately.
[00:22:11] It is… There is no hiding their feeling for you. There’s no hiding the fear that they have for you Y- it’s hard for yourself to feel like, “Okay, I know it’s a chronic disease. I know I’m okay, but I have to wait the next six months before I get my n- next PET/CT to find out if I’m okay.” And you– and I’ve gone six month to six month to wait for my imaging, just like everybody else, and it’s anxiety-provoking.
[00:22:38] And I wanted to share my story because I feel like I have been successful in doing the things that I need to do as a senior PA, and I’ve continued to maintain those goals and relationships, and I’ve been more involved with Komen to help other women and men. And I… It’s not easy, but it’s certainly doable.
[00:23:05] Adam Walker: Yeah. Yeah I think that’s beautiful. Yeah I… You’re… It’s not easy but it is doable. And I think you’ve… I mean you’ve shown that, right? And I… Another thing, I mean I don’t think I’ve ever heard someone say that it can be treated like a chronic disease. That’s an interesting perspective and I ap- really appreciate you sharing that.
[00:23:23] So Lily, you are an inspiration genuinely. I thank you for the work that you do. I think the work that you do is so critically important, and also just for the vulnerability that it takes to share your story with us. We- we’re so happy to have you on Real Pink today.
[00:23:39] Thanks for joining the show.
[00:23:41] Lily Cabezon: Thank you so much. I greatly appreciate this honor and privilege to be a part of this podcast. Thank you.
[00:23:47] Adam Walker: 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 @SusanGKomen on social media.
[00:24:00] I’m your host, Adam. You can find me on Twitter @AJWalker, or on my blog, adamjwalker.com.