Jace Yawnick and Dr. Mark Lewis | Conquer Cancer, the ASCO Foundation

Dr. Mark Lewis:
This podcast is brought to you by Conquer Cancer, the ASCO Foundation. Our mission is to accelerate breakthroughs in life-saving research and empower people everywhere to conquer cancer. Welcome to Your Stories, a podcast where we hear candid stories from people conquering cancer. I'm your host, Dr. Mark Lewis. In 2023, Jace Yawnik: became one of the countless patients each year whose cancer cases are misdiagnosed. And this didn't just happen once. Jace experienced multiple misdiagnoses before anyone finally discovered the massive tumor in his chest that ultimately revealed the real problem. He had Non-Hodgkin's lymphoma. In fairness, one could argue that the symptoms of lymphoma often do mimic those of other more common and less dangerous conditions. The cough and burning sensation that can be mistaken for acid reflux. The chest and back pains that can be mistaken for a hernia. And often, the diagnosis does turn out to be comparatively benign. But what if it isn't? What happens when the worst not only turns out to be true, but also goes undetected for a year or longer?

Many patients understandably shudder at the prospect of vocally questioning their doctor's opinion. Fortunately, Jace was not one of them, and his persistence ultimately saved his life. In the weeks and months to follow, he began documenting his entire cancer journey online, sharing his experiences with a degree of candor and vulnerability that ultimately gained him a massive online following: 700,000 people and counting, each of them watching his progress, rooting for him, and eager to witness, if only via Instagram, a goal he'd been openly dreaming about from his very first treatment—the moment he rang the bell declaring himself cancer-free. Jace, thank you so much for joining us today. Before we get started, can you tell us where you're joining us from?

Jace Yawnik:
Yeah, I'm currently in Naples, Florida.

Dr. Mark Lewis:
Wonderful. Well, let's start at the beginning. So, from what I understand, you dealt with a lot of frustration leading up to your diagnosis, including some pretty serious misdiagnoses. Can you talk a little bit about when you first started noticing symptoms and then the long struggle you dealt with in your search for answers?

Jace Yawnik:
I definitely can answer that. Looking back, it really started in 2023, more subtle with this particular symptom. But that's when the fatigue started. And that's such a challenging one because I think we're all fatigued a little bit in life. And at this time especially, I was working really diligently to progress myself career-wise. And that involved me traveling all over the country, which I enjoyed thoroughly, but definitely comes with some exhaustion. But the reason the fatigue stood out to me was there would be times where I wasn't necessarily, you know, I hadn't just gotten off a plane or I hadn't just done something strenuous. And as a matter of fact, I was quite probably recovered from any strenuous thing I had done. And I would look to my peers who were the same age as me, they were in their mid-20s, and they had this level of energy that I just didn't have. And intuitively, something within me just knew something wasn't right there. But that's where I kind of started to do what most of us do, where we kind of write it off. We say it's something else. You know, it's—I'm like, I must just be working really hard and this is just how my body is compared to theirs. And accepted it for what it was.

I would say that was the first symptom. What eventually started to happen later throughout that same year was a cough had begun. And early stages of this cough were nothing to be concerned about. I'd say I could attribute it to allergies even, or, you know, anything. But that cough got progressively worse throughout the year, starting pretty subtly and progressing all the way to the point where I would be almost getting sick, as in vomiting, from how violent I was coughing. And that was obviously at the most extreme of that.

But accompanied with the cough throughout the year started a back pain. And this back pain started as sort of a just subtle ache and eventually would cause a shooting pain that would go throughout my arm that also got progressively worse. That led me to—I mean, at one point it was so severe, the pain was so severe—that I went to urgent care because I couldn't wait to go see my primary care physician. And I said, "I need you to tell me what's going on here." And both them, and eventually my primary care physician, gave me a certain diagnoses for what those two things were and gave me medications accordingly with those. But ultimately that's not what was wrong.

Dr. Mark Lewis:
You know, any doctors listening to this, they're going to be nodding their heads in recognition. And as you're well aware, everything looks clear in 20/20 hindsight, right? So, part of what you're describing here—and I suspect you've encountered this term in your journey with lymphoma—there's this class of symptoms called B symptoms, capital B, and they include the extreme fatigue that you describe, unintentional weight loss, and then often a combination of night sweats and palpable lymph nodes. And that kind of particular complex of symptoms put together is extremely suspicious for lymphoma.

The problem as you encountered is that those are non-specific and so they can mimic or look like a number of other factors. And then when you discuss coughing so much you vomited, you know, we have a term for that also, we have jargon, we call that post-tussive emesis. And that's a serious problem that needs to be investigated. So, obviously you pushed and you were able to get the correct diagnosis. I think what's really interesting about your particular story is we consider confidentiality in medicine to be absolutely sacrosanct. Like, we will always protect your privacy. And you chose—and I think it's a very brave decision—to waive your confidentiality and share what you were going through. So how did you decide to start documenting it and what was your motivation behind that?

Jace Yawnik:
It's multiple reasons combined, but first and foremost, I'm somebody who likes to work with other people, whether it be school projects growing up—I mean anything in my life. I like collaboration. And particularly, something that my parents and mentors and teachers growing up had taught me was to self-advocate. And when I had been diagnosed, I knew I needed help. I didn't want to take it on alone. And I initially had made a post on my personal Instagram account, which is separate from the one that most people are following on, where I just posted and said, "I was just diagnosed with cancer and I'm entirely overwhelmed. This is not something I would normally share, but I need support." And I remembered this outpouring of messages and people reaching out to me and it was so helpful in every sense of the word. And what I realized is quickly that a lot of these people really did care, but they would follow up with me every day. And while that was great, repeating the updates daily became somewhat exhausting. And I’m just trying to grapple with just the cancer diagnosis at a young age. So I resolved to form the page that exists now, Jace Beats Cancer, intentionally for them—for my family and friends who are checking in with me every day. So just in case I didn't get in touch with everybody, they could see my updates.

Second to that, I figured maybe there's a world out there where other young people or even adults or older people who have survived cancer, who are going through cancer might find the page and they could be sort of an internal support group because a lot of my friends weren't going through cancer, and same with my family. So I figured maybe the universe will bring those people to me. I had no idea that the virality would occur. It was shocking, but in the best way. It was truly a blessing. But my reasons were just that: it was to update my family and my friends and hope to connect with others that had gone through and beaten or were currently going through cancer to form some sort of small community.

Dr. Mark Lewis:
You and I have a little bit in common. So I was about 30 when I realized I had cancer, and I was nearing the end of my medical training, and I decided to share it, too, in a much different platform. That was 2009, so I actually wrote about it in a medical journal, so not Instagram. And it was interesting because my faculty, because I was still being mentored, strongly advised me not to do it. In fact, one of them used the phrase, "This is career suicide."

But what I found, and I think you found too, is, number one, it was incredibly, personally rewarding. Like, I found it very cathartic. And secondly, the more I shared, the more it kind of became this beautiful feedback loop where I got a lot out of it. But then other people, I think, realized that they weren't alone in this. I think to be a young adult diagnosed with cancer, you feel particularly isolated because it's like your life has suddenly taken a different trajectory than everyone else's. So I'm so glad that you, again, sort of got this outpouring of support that you richly deserve.

I am curious, though. I mean, obviously you—and if you'll forgive the expression—your narrative are very compelling. You know, as you started to share, what do you think was the inflection point where it just really took off, gained momentum, and, to use your own words, became viral?

Jace Yawnik:
I couldn't tell you exactly what did it, but what I can tell you is, because the intention was for friends and family, and also, as you had mentioned, it was very cathartic, so I did use it for myself, I did think how interesting it would be to look back on my journey. And I thought I have to do this as openly and as honestly as possible, share every side of cancer that I'm facing, also so that my friends and family can see where I'm really at. From what I've been told, a lot of people have said to me they appreciate the authenticity. They appreciate the honesty of what I was going through, and I didn't cover up the hard days. And I will tell you that there were a lot of times, especially once I had a larger following where—and I haven't really talked about this a lot, but there were a lot of moments where I was embarrassed as a young man to be crying in front of so many people. But I was always able to reconfigure the thought pattern in my head to accept that this is fine, it's normal to have emotions. And I actually felt really confident that I was speaking openly and honestly and regardless of judgment from others, this was my truth. And I thought how important that was to also share that it's okay to show emotion as a man. It's okay to be open. And not to mention, we're not talking about spilled milk here. It was a life-threatening diagnosis. So there was certainly a lot of layers and components to it. And I apologize if I'm getting away from the original question. I think truly it was just the open and honest daily journal that people felt tied to.

Dr. Mark Lewis:
In your answer, I heard the explanation for why you went viral. So first of all, I agree with you. I think authenticity is one of those things that's hard to explain, but you know it when you see it. And let's be honest, it's increasingly rare. Here's why I think you took off. I think you quite inadvertently and just by being a very sweet and candid person, I think you subverted the algorithm. The biggest critique of social media, and Instagram in particular, right, is that we present the best possible filtered version of ourselves. And you did exactly the opposite of that, right? You showed yourself on your darkest days, like warts and all, right?

And you also, like you said, and it's sad but true, you took the paradigm of especially young masculinity, which is supposed to project, frankly, not just invulnerability, but, you know, when we're young men, we almost think we're immortal, and again you turned that on its head and you said as a young man—and again, you look so healthy and vibrant now—but you shared of yourself in a manner that really showed your struggle is not just with your physical and your mental health. So I think that actually maybe the answer is that the secret sauce is your authenticity. And again, I applaud you for that.

One of the things I found really interesting is as you gain momentum, the people that kind of followed you through your journey. And you know, there's different definitions of a cancer journey. In fact, you may know this, some patients actually reject that term because it sounds like a fun trip that you would take voluntarily. But regardless, I think there are discrete steps in the experience, and one of those is ringing the bell. So I want to talk to you about the experience of ringing the bell because I heard that people maybe were ringing the bell in unison with you. Is that right?

Jace Yawnik:
There was a celebration to honor the nursing staff at the hospital that I had gotten chemotherapy at, and all my lumbar punctures and a lot of everything. I spent so much time with these nurses because I had EPOCH-R which involved me being in the hospital for a week at a time every 14 days. They invited me to speak at this ceremony. And they had surprised me with—when I was walking up, there were bells at every table. Oh, they all rang the bell for me, which was incredible.

Dr. Mark Lewis:
That's amazing. So, sure, it took a solo performance and made it a choir, so to speak. And, you know, I think as you certainly have the insight to realize, sadly, not every patient gets to ring the bell, right? So, Jace, you may know there's actually discussion in the oncology community about bell ringing. Should we reserve it exclusively for people who are ending chemo, presumably forever and then hopefully entering remission, or should we be a little bit more permissive? Should we allow people to do it at sort of stages? So, for instance, many of my patients who have GI cancer, they may never be cured of their cancer, but they'll sort of group their chemo cycles together into blocks. And I find it sometimes very meaningful for them to be able to mark the end of a block. They feel like it's a small victory, sort of winning the battle, if not the war, if you will.

So, you know, again, it kind of speaks to why I think your sharing your story is so resonant, is that two things can be true. It can be very, very lonely to go through something like cancer alone and thus meaningful to share it with this collective. On the other hand, your story is yours alone. And when we talk about cancer, and especially when we get into numbers, the numbers are so staggering that we often just can't wrap our heads around them. But I think stories like yours speak to the heart. And I think, again, that's why you've experienced so much traction on social media, is you get right to the point. And I think people can feel that.

Jace Yawnik:
Yeah, again, I had no strategy going into it. It was just open and honest. And in regards to what you were discussing about the bell, I do remember them mentioning to me that the bell is traditionally for when you finish your chemotherapy treatment, because more often than not, that is the most intense portion of cancer treatment in a lot of cases. I do remember telling them, I said, "I appreciate what you've done here for me with chemo, but I had to go into radiation after and a whole other slew of treatments." And I said, "I'm going to come back and ring this bell when I'm done."

Dr. Mark Lewis:
Oh, wow.

Jace Yawnik:
I think it's just up to every individual to decide, you know, when that time is right. And I certainly do understand the milestone of ringing the bell. It just happened to be my personal decision to say, "I'm going to ring this when I'm all done."

Dr. Mark Lewis:
Just like it was your personal decision to share your story online, right?

Jace Yawnik:
Right.

Dr. Mark Lewis:
What I keep hearing in your through-line is self-advocacy and then ultimately respecting the right of the individual to—Let's be honest, in a situation where you lack control over a lot of things that are happening to your body, you do have some degree of control over these things. And that's what I kind of see happening with you. So I understand you're in remission now.

Jace Yawnik:
I am.

Dr. Mark Lewis:
Hearty congratulations. That is wonderful.

Jace Yawnik:
Thank you.

Dr. Mark Lewis:
That's absolutely wonderful. Hard-earned, to say the very least. That's an understatement. But that kind of begs the question. You've got all this momentum. What now? You've come, arguably, you know, if you'll forgive the metaphor again, you've come out the other side of cancer with hundreds of thousands of followers on social media. That's an incredible platform. What are you choosing to do with it now?

Jace Yawnik: It's a question that I've grappled with a lot, Mark, honestly.

Dr. Mark Lewis:
No pressure. Right? No pressure.

Jace Yawnik:
Well, you know, I've experimented with a number of things, but I can tell you at the top of the list, during my chemo treatment, I actually spent time while I was getting chemo building my 501(c)(3). And the reason for this was I had so many people offering me financial assistance just personally saying that they wanted to give me money. And I'm very fortunate because I have employment that offers really great healthcare, and I was able to afford any payments that were outside of what wasn't covered. And I realized quickly that there were so many that did need that financial assistance, some of whom I've met personally. And so I quickly decided, "I need to make a nonprofit." I want to help these people who don't have the fortune that I do to have their bills covered. So at the top of the list my page will be and has been, if you've been following recently, it's people that we're supporting. You know, I think in the nonprofit world, especially for the larger organizations, it can be challenging to showcase everything they're doing. But certainly, I think in some cases, there is not enough transparency as to where the dollars are going. And my nonprofit is very, very keen on showcasing where that dollar is going. You know, who is it going to? And here are these people. And of course, we get approval and permission from them to showcase their story. And not everybody's okay with it, but that doesn't hold us back from donating the money to them. So that is number one. And number two is I've realized really quickly that I'm still going through the journey. Yes, I really did hope that when I heard my doctor tell me that I was in remission, that it would just be, "Go back to your life, everything's normal again." It is so far from the truth. I'm going through a lot right now. And it doesn't mean that life is bad. Life is really good. And there's a lot of gratitude. But as you know, since you went through the experience yourself, a lot of anxiety and just really complicated emotions that I'm still learning to unpack and that I'm seeing therapists on. But I intend to continue to showcase those things because there are people that resonate with that and that help me even.

I think it's just important to finish by saying with this answer that so much of the community is here for me as much as I want to be there for them. So many of them have shared tips and tricks and advice and prayers that have stuck with me along the way and that have helped me through very particularly hard moments. So, it is a very reciprocating relationship between me and this community that's been built.

Dr. Mark Lewis:
Listen, Jace, a couple of things there. One is, listen, I'm nowhere near your scale, but I have found this, again, incredible feedback loop where the more I put myself out there, the more I seem to get back in return. And it's striking to me that you sort of took this outpouring you talked about earlier, the immediate thing that came to my mind was the emotional support you got, but people were literally offering you financial support. And I think it was so altruistic of you to divert that to people in need and thus address financial toxicity, which is such a huge problem in oncology, but especially for young adult patients. So, again, kudos to you, certainly, for doing that. I think what you described there is what I would call alchemy. You took something horrible to happen to you and sort of the leaden weight of that, and then you spun it into gold. I'm also so grateful to you for your ongoing honesty because this whole notion that you—you know—are told you're in remission and again, maybe you do or don't ring a bell on that day, you're right, there is a false sense of closure, I think comes with that. And I see in so many of my patients this is how they've described it to me, and I wonder if it'll resonate with you: One of them, who's a real athlete, said, "Dr. Lewis, it feels like I've been running on a treadmill and I have the sensation that I've stopped the treadmill. And I feel like I should be keeping going." Part of that is, listen, cycles are built into oncology, as you know all too well. And so you get into this rhythm and it's almost jarring for that rhythm to stop. And some of them, weirdly, on their last day of chemo, feel very mixed emotions about stopping because they immediately switch to worrying about recurrence. And I find that so fascinating and understandable. But also, let's be honest, on some level unfortunate, because you go through this absolutely momentous physical toll to rid your body of cancer, only then to realize as you're in the process of experiencing that, you know, mentally and psychologically, it's really hard to turn off that fight-or-flight response. And it's all too easy to imagine every little ache and pain, especially as you start at the beginning, explaining the non-specificity of your symptoms might be heralding the cancer coming back.

So again, kudos to you for being honest about that, too. I really try to unburden my patients of that as much as I can, for what it's worth, Jace, and tell them, “Listen, just because you're quote, unquote, “done” with chemo doesn't mean that our relationship is over. I'm going to be appropriately vigilant.” I typically see patients every quarter for five years when they're in remission, and that can vary with the cancer type. But thank you for being honest about that, too.

Jace Yawnik:
Of course, I would do it if there was nobody watching. It's just part of what's instilled in me.

Dr. Mark Lewis:
I really do hope for you, just man-to-man, that in time, as with many things, it's almost like going through a form of grief, I think. I don't think it ever entirely goes away. But I will tell you from my own personal experience that the fear of recurrence tends to diminish in time and your sense of security and, "Okay, this is my life now." I really don't love the phrase "new normal," “normal” may not be quite the right word to use there, but regardless, I can just tell you, and it's my personal experience more than my oncologic experience, it will come. But in the meantime, again, I just want you to enjoy the best possible physical health you can.

And, Jace, that brings us to our last question. So we ask it every chance we can on this program with every guest who joins us here. And if there's anything we've learned, it's that every person has a different perspective on what it means to conquer cancer. Some view it through the lens of science and imagine a world where every cancer is at least treatable, if not curable, or maybe even preventable. And others, particularly survivors like yourself, see it through a more individualized lens of "This is what my conquering of cancer looked like." So how about you? What does conquering cancer mean to you?

Jace Yawnik:
That's a heavy question. Conquering cancer to me, has truly been about community. That's what conquering cancer means to me. It is the hardest thing that people will go through. It's certainly the hardest thing that I've been through in my life, and hopefully the hardest thing I will ever go through in my life. But I think at the core of every hardship, there is an opportunity to unite with the people around you—the people that are going through it, the people that are around you while you go through it. And within that unity, you can find a way to conquer it, no matter what it is, whether it's cancer or anything else. So that's what conquering cancer means to me.

Dr. Mark Lewis:
Oh, such a beautiful answer, Jace. You know, again, whether you intended to or not, I think you are being subversive, and I'll tell you why. So, cancer, pretty famously is a collection of malignant cells. And you can argue that the cancer gets more and more fearsome and dangerous the more cells accumulate. But here's the thing about cancer that's different than us. Every one of those cells is out for itself. It's selfish. Obviously, I'm imbuing it with a consciousness it doesn't have. But for the sake of this metaphor, bear with me. Whereas as human beings, as you just said so eloquently, we really do have power in community. And one of the things you've done with your platform is to reassure people that they're not alone and you've been vulnerable and you shared in a manner that I think will continue to resonate. And again, I wish you just nothing but ongoing good health. Thank you for your work and again take the momentum that you have and keep making the world a better place, my friend.

Jace Yawnik:
Thank you and I'd like to put it back on you and say thank you for the work that you do. I wouldn't be here without the people that helped me along the way. Whenever I meet somebody that is choosing to do that for others, I'd like to thank them.

Dr. Mark Lewis: That's very gracious of you. Cases like yours are, as you might imagine, particularly rewarding and again, we just wish you all the very best.

I'd like to thank our audience for listening to this podcast, which is brought to you by Conquer Cancer, the ASCO Foundation. Conquer Cancer is creating a world where cancer is prevented or cured and every survivor is healthy. You can make a gift at conquer.org/podcast.

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