Episode 71: From Anger to Advocacy, Lessons Learned from a Pancreatic Cancer Diagnosis

The Patient From Hell Podcast (00:00.903)
everyone, this is Samira Daswani, the host of the podcast, The Patient from Hell. I have a very special guest with us today, someone who's I think heard all of our episodes, which if you guys can't see, I am definitely blushing when I hear that. Roger, welcome to our show.

Roger Royse (00:10.649)
I'm out.

Roger Royse (00:18.175)
Thanks. Great to be here. And I have listened to all of your episodes. I think I'm probably your biggest fan.

The Patient From Hell Podcast (00:26.981)
I feel very, very humble by that. And I can't wait to hear your story because a little bit that I've heard, I suspect the world needs to hear more of it. So thank you for that.

Roger Royse (00:35.844)
Well, you know what caught me was the title, of course, first of all, and I've heard your story about the origin of the title, but I saw that and I said, that's me. That's me. This podcast was made for me.

The Patient From Hell Podcast (00:48.605)
Alright, that was only a celebration from hell.

Roger Royse (00:52.028)
Well, I'm kidding. I don't think I'm that bad, but I certainly do question every assumption and everything every doctor has ever told me. I do question it, and I grill them, and I interrogate them. And I'll tell you, my doctor visits are probably a little different than other people's. Because first of all, with cancer, on average, a person gets about 20 minutes with their oncologist.

I'm super lucky if I get that much. So I would cram like a frat boy on finals week for my meetings. Seriously, I had charts and what ifs, and if he says this, I'm gonna ask this, you know, even had cant charts. I mean, I was ready to go like a final and we'd just kind of get through my stuff. And I don't know if they like that or not at the time.

given the stress of the diagnosis, it didn't really care much what they thought. I just really wanted to get my questions answered and hear what they had to say. And then I'd follow up with second and third, you know, opinions, fourth opinions. And, you know, surprisingly, and there'd be things that the doctors would all agree on, but then there'd be things on which they had just wildly different views. But I wanted to hear

So, and I think that's a little different. I think a lot of patients maybe just kind of go into a doc, like the doctor's gonna control the conversation, is gonna tell me what they think I need to hear. And then they're gonna, you know, rush off and be late for their next appointment.

The Patient From Hell Podcast (02:30.108)
Roger, before we dive deeper into the Blueprint experience, will you always sum up your questions' assumptions?

Roger Royse (02:37.146)
Yes, it's one of my personality flaws. You know, I remember my mom telling me that when I was a kid. I remember my teachers telling me that. It's like, why can't you just accept this as true? I remember that when I was in school. And I my mom saying that too. She said, you know, you were always like that. No matter what it was we said, you always had a better idea or a better way of doing it. So, and I know that's annoying. I get that. But I also think it probably saved my life.

tell you the truth. And we'll get into that more later, I'm sure.

The Patient From Hell Podcast (03:10.437)
Yeah, we will. And I definitely want to come back to that. Before we keep going down that, can you tell me what you're doing today outside of being a patient?

Roger Royse (03:18.938)
Aside of being a patient, I'm working full time. I had to take a month off from my surgery, but otherwise I'm still full time. I'm a lawyer in Silicon Valley. do emerging growth and venture capital. And I stay very active, even more so since my diagnosis. I just doubled down on the cardio and the weight training and everything else. So that's kind of it. I work and I work out.

The Patient From Hell Podcast (03:50.181)
Maybe tell us a little bit more about what you do as a lawyer. Because I heard emerging markets, I heard venture capital. Give us a little bit more. Silicon Valley, a lot of our listeners are not in the Valley. They may not know what venture capital is or what lawyers do with venture capital. So if you don't mind telling us a bit more, that would be great.

Roger Royse (04:11.978)
I work with technology startups in a wide variety of, I guess, industries. I'm sort of industry agnostic, but it's almost all technology and it's almost all startups. And that's the formation of a company. And then I take them all the way through to IPO if necessary. Usually it's an &A exit if we're lucky, or an IPO. I an IPO last year. But it's all tech. And it can

You know, a kid in a dorm room at Stanford with an idea. I mean, I do have clients like that because you just never know. And all the way up to a publicly traded multinational because if things go well, they're going to get there someday. And if you stay with them long enough, you'll get there with them. And I'm extremely old, so I've got a lot of clients I've stayed with a long time.

So it's formation, financing, and that's where I interact with the venture capital community. I have a few venture capital clients as well. I think it's good to be on both sides of the table just to understand it. And then exits &A and kind of all the legal stuff that comes in between.

The Patient From Hell Podcast (05:19.279)
So the reason I want to talk to you about that is one of the things that struck me the last time we met was I think you said I have Steve Jobs' cancer. Was that a good answer?

Roger Royse (05:31.644)
Well, almost. He had a neuroendocrine cancer and mine's adenocarcinoma. So it's the same organ, different type of cancer.

The Patient From Hell Podcast (05:43.943)
Yeah, maybe connect those dots a bit more, right? Because there is something to be said about getting pancreatic cancer in Silicon Valley, in the shadow of Steve Jobs, getting treated at Stanford. There's so many parallels there that I am curious as to how it factors into your psychology, into the way you access medicine, into who you access medicine from. Anything there that you can share with us?

Roger Royse (06:13.276)
Well, you know what Steve Jobs did for pancreatic cancer is, first of all, he brought a lot of awareness to the disease. And everybody around, least, mean, he used to live just like right down the street. You know, I know exactly where his house is. And I mean, what, had $40 billion and he could not beat this disease. He could not outspend it. So that's the first thing we think about. It's like, holy cow, this is a bad

And that's kind of what my doctors, and I got treated coincidentally, by the way, at the same doctor he did. And the first thing he said to me is, you got a bad one. Like, great, you know? So that's number one. But number two is, you know, I read the book, I his biography, and I read the stuff online about what he did about his treatment. And I will tell you that I took pretty much the opposite approach. I said, okay.

That approach did not work for Steve Jobs. I'm gonna do the opposite of that. I'm not gonna sit on a beach in Mexico and drink fruit juice and hope it goes away. That's not gonna be my strategy. I'm gonna throw everything but the kitchen sink at this and I'm gonna jump on this now and stay on it. So that's part of it. The other part, so I have a little bit of an advantage being doing the kind of work I do and being in Silicon Valley.

One of the first things I did, when I got the diagnosis, I looked at the statistics, I heard the prognosis, I heard what the doctors had to say and are all always extremely pessimistic. I said, okay, I need a hack. I need a hack for this. That's what we say out here in technology land when we want to solve a problem. And my hack is I'm going out to my network. I've been in this valley 30 years. I know a lot of VCs, I know a lot of biotech companies. And I believe there's an answer to every question.

And I'm going to go out and find that answer. And the first thing I did is I went to my network and I just started connecting. Have you seen a company with anything new and innovative? What do you know about this? Can you connect me at this company? Do you know these people? And I just started gathering data and looking for not alternative, but supplementary treatments and things that I could do. So in that way, being in this community was helpful to me. It was very helpful to me.

The Patient From Hell Podcast (08:40.784)
I think if I read right, you wrote a book, you're also an author. Is that right?

Roger Royse (08:45.5)
Well, I've written a couple of them. The first one was the very unfortunately named Dead on Arrival, How to Avoid the Legal Mistakes that Could Kill Your Startup. And somebody told me they thought that was kind of a depressing name for a book. So I went back and I did a second one. And that was about all the things people, all the dumb things people do to mess up their companies that I've seen over last 40 years. And then I went back and wrote another one called 10 ,000 Startup Strategies for Startup Success.

The Patient From Hell Podcast (08:57.211)
Mm -hmm.

Roger Royse (09:15.292)
which is a little more optimistic, I think. So I've got two books out, two books and I think I've sold 10 copies.

The Patient From Hell Podcast (09:25.969)
to buy it. When I read that, was like, huh, I can probably buy both of them. I could probably use all the advice I can get. I did want to ask you though, because something that struck me in the name of your books is what you just said. It's kind of, it's this very dichotomous, extreme, right? This is like very glass half empty, glass half full, titling of your books. And I'm curious how that factors into

your life today, grappling with the disease you have.

Roger Royse (09:56.565)
I'm sorry, I missed the first part of that. Well, what is in the two books?

The Patient From Hell Podcast (10:00.401)
So your two books have two very different titles, right? Very pessimistic, very optimistic, and being reductionist. How does that factor into your life today? Like if you had to put yourself in a spectrum, very pessimistic, very optimistic.

Roger Royse (10:04.967)
Yeah.

Roger Royse (10:13.148)
I'm super optimistic and I just, I feel like I'm a super lucky person. And that sounds like an odd thing to say for somebody who's gotten a cancer diagnosis. But even at the time I got the diagnosis, I was optimistic. Even when I went on Google and saw what the stats say, and they're not good for this disease, I was saying, well, you know, it's not a 0 % chance.

you know, survival. So hey, you know, I'll take those odds. And so I think, you know, it's good to be, in fact, so one of the first things I did, you don't mind me taking a little sidebar here, when I got the diagnosis, I said I went out to my network, I also went out looking for survivors because, you know, 13 % of pancreatic cancer patients make it five years, they have a five year survival. Well, that's not zero.

You know, and 20 years ago it was 4%. So it's getting better. I don't know, maybe we were fine in it earlier. I don't know, but I want to talk to survivors. I want to do what they did, right? I don't want to do what Steve Jobs did. So I talked to a lot of survivors and I couldn't find really much of a commonality. I couldn't find the magic bullet that I was looking for. You know, they all had a little bit different strategy. Some of them, you know, I was just lucky.

Others of them, it's because I did this. The only commonality was really in their attitude. And it's a combination of optimism and realism. First of all, you have to really believe you're going to beat the disease or least get more years in life than you statistically should. You have to believe that because if you don't, the anxiety and fear can really consume you. And you all know about the pathway, the cortisol, the adrenaline.

the IGF, the growth factor, the cancer. So number one, you have to be optimistic. Secondly, though, you got to take this seriously. You know, have to understand that if you don't act and act decisively, you're really hurting your odds and the consequences are pretty, you know, pretty severe. So it's that combination. And another way that I like to say it is that you have to first of all, accept death. And second of all, have the will to fight it.

Roger Royse (12:32.388)
And that sounds really odd. you know, when I met you, one of the first things you said to me, and it's like, it just kind of blew me away, is said, you know, you don't really understand until you've been there. And I tell people that, and they look at me like, what are you talking about? That's two completely opposite facts to hold in your head at the same time, accept death and fight death. And you're right, maybe you kind of have to be there to know what I mean by

But I found that in survivors. You know, they didn't fear it, but they're willing to fight like

The Patient From Hell Podcast (13:08.779)
Yeah, I remember our conversation because I've thought about it a few times since. And if you're okay with us going maybe two more steps into this, into this dichotomy, because you're right, you're kind of holding two dissonant facts at the same time. You're also holding two dissonant emotions at the same time. Right, this emotion, I don't want to speak for you, Roger, but I remember this, this very distinct emotion of

almost defiance. I don't know how to describe it. It's almost like weird defiance of defying the odds, defying the reality, getting through the unimaginable. And then you have this other emotion of isolation, loneliness, sadness, fear. You have this like polarity kind of constantly at play with each other, at least for me. I'd be curious as to whether or not you felt

Roger Royse (14:03.848)
yeah, you said it exactly and they kind of come and go. And most days, it's mostly defiance. You know, my body has turned on me and we are at war, but I'm going to win the war. And it is absolutely a war. That is the metaphor that works for me. I mean, either I kill the cancer or the cancer kills me. That is the definition of war. And I know a lot of people say, don't say that because it's so stressful.

Not for me, for me it's motivating, you know, and that's the defiant piece. But then there's a second part, which I don't think about too much, except they're on my scans. And that's when you kind of focus on, this could go really, really bad, really fast. So yeah, it's an odd thing. And it's like you said, you kind of have to be there to kind of get it.

The Patient From Hell Podcast (15:02.513)
Can I ask you a question? It might be a sensitive question. So if you don't want to answer it, just skip it. We'll move past it. We've had a lot of guests on this episode, on this podcast. The vast majority of guests have been female, and our audience, for what it's worth, does cue more female in terms of listens.

Roger Royse (15:02.832)
the next question.

The Patient From Hell Podcast (15:24.471)
The thing that has struck me in talking to my friends who are of the male gender in the cancer community is there is a difference. And the difference feels largely on the emotional side of the house, maybe on the support side of the house, maybe on the how open the communities are in talking about the darker side of going through cancer.

I'm curious if you can comment on that. Have you found enough support? Have you found enough community? Have you found enough resonance in the communities that you're surrounded by?

Roger Royse (16:06.133)
Well, so a couple of things about that. I guess first of all, and I don't know if it's a gender thing or just a personality thing, but you know, I've always kind of been that way. If I'm injured or something like that, I'm like a wounded animal. I want to crawl in my cave and not see anybody. And so when I was going through chemo, I mean, you know what that's like.

I just need it to just, I don't want any support. I don't want anyone around me. On the other hand, I do have, you know, a lot of friends and I have family here and of course they're all very concerned. So they would, they made the mistake of trying to be supportive and see chemo makes you really grumpy and I'm not that easy to get along with on a good day. So, you know, add some chemo to

In fact, know how alcoholics, reformed alcoholics have to go around and apologize to all the people that they were mean to when they were drinking? I had to do that after chemo. I had to go down to the coffee shop in Menlo Park and say, you know, I'm sorry I threw that coffee cup at you when you got my order wrong. You know, it was the chemo, it wasn't me. So I just really much preferred not imposing on my support system to the extent that I could. It felt a

It felt a little self -indulgent, first of all. Secondly, you can't take it back, you know? And that's not just me. I've heard that. So that was one. Then the second thing is my peer group now, like my friends and the people I hang out with, are doctors. They're researchers, they're scientists and cancer patients. And I get a lot of

from just being around other cancer patients just because I know that they know what it's like. Like you can have all the family around and I appreciate the fact that they are as concerned as they are, but there's not a lot that they can offer really. They can't really identify with what you're going through. Other cancer patients can. Now the problem, since we're going to the dark side here with that,

Roger Royse (18:28.442)
is once a lot of your friends become cancer patients, you lose a lot of your friends. In fact, as we sit here today, I have, you know, just two weeks ago, one of my friends who I met through this, you know, the same treatment, same doctors, same disease, he died in middle of July. And we all knew it was coming, but it's still kind of jarring.

And as I sit here today, I have two other good friends that they're in the hospital and they've run out of options and they're not coming out and we all know that. So there is a dark side to that as well.

but that's just part of the game. You know, I guess it's a little bit of exposure therapy though too, because the more that you can meet people who are going through the same thing and you can see the end, I guess you fear it a little bit less, I think.

The Patient From Hell Podcast (19:29.487)
That's right. I want to go into, if you're open to it, anger as an emotion.

Roger Royse (19:36.662)
man, that's my dominant emotion. Or not anymore. It was when I was at first. You want me to talk about my anger? Well first, I was mad at everybody. I was mad at my primary care physician for, as far as I'm concerned, they had two of them, you know, because I didn't trust the first one and the second one screwed up just as badly as the first one. Although that was my mindset then. Looking back on it, you know,

If they had a strong AI system that they relied on, they might have caught this, but otherwise, how would you know? mean, because my symptoms were, first of all, I didn't have any symptoms. I just had a bunch of vague signs. So, I'm less angry with them now than I was then, because I think that's the first thing every cancer patient does is, why did this happen to me? You know, my doctor, I've been paying you to keep me healthy, and now I'm not, and it's your

So that was kind of the first thing. The second thing is once I got into treatment, because for any big institution, it's kind of routine, you know? And the nurses that were honest with me were like, you know, we do this all the time. We see people like you all the time. It's what we always do. To them, it's kind of routine. It's not routine for me, you know? And so you start to get a little suspicious that they're not caring about you as much as they probably should.

and little things just get magnified. so I remember when I was diagnosed, one of the rare pieces of good advice that my older brother gave me was that, look, he said, you cannot trust your judgment now. Just know that. You can't trust your judgment. You're under too much stress. So you're really off to reach out and like crowd sources and talk to us and get some opinions and don't

because he knows I sort of have a bias towards action, to put it mildly. He says, let's just don't do anything drastic because you really can't trust your judgment. And so there's a point in there when I just sat there and I said, you know, the system can't possibly be this messed up. It can't possibly, I mean, you know, and I was angry all the time for, you know, for getting to schedule my appointments, you know, the insurance.

Roger Royse (22:04.048)
just randomly deciding not to pay stuff, then I gotta go fight with them or I gotta pay for it myself, drugs not being available, etc. And there came a point when I said, you know,

It can't possibly be this hard on the patient. And there's no advocate for the patient, right? You know, the doctors got their thing. The hospitals are profit driven. You know, the insurance companies, you know, they've got their own, they will respond and act in accordance with their economic interests. I don't blame none for that. I will fight them on that for sure. And I did like every step of the way. I've appealed so many, you know, insurance denials. I probably have a record.

I mean, I've got them seal trained now, not to screw around with me. Pharma companies, you know, they're profit driven. So I get all that. But at some point I said, this can't, this has gotta be what my brother said. This has gotta be my perception. So, and plus it's not good to be angry all the time, because it raises your cortisol, raises your stress. It's not good for your treatment. So.

So anger was a major issue for me. In fact, when you go over to Stanford into the infusion center, there's a little sign on the front desk that says, please don't verbally abuse the staff. I think they might've put that up there for me because, you know, I have so many of those free coffee vouchers, you know, because they gave me free coffee to settle me down, because I like coffee, I guess. But I'd show up and it's just, if things didn't go just perfectly.

You know, like a well -planned military operation. I was all over them. And I'm not proud of any of that. In fact, I'm embarrassed by all that. In fact, I'm surprised you got me to even admit it here on your podcast. But I'm just telling you, I blame mostly the chemo and just how lousy you feel and the stress of the diagnosis. So I don't know. If you went and asked them, they might say I wasn't that bad compared to everybody else. But as I look back on it, it

Roger Royse (24:24.676)
It was uncharacteristic of me. I'm not an angry person typically, but for a few months of my life, I was all anger.

The Patient From Hell Podcast (24:34.225)
So the reason I wanted to go there was for a couple of reasons. Reason number one is I think it's actually a very common reaction. And I don't think we as a community talk about it. And I don't think the clinicians bring it up enough because I think it is so normal to feel angry. Anger is definitely something that fuels me, especially as a patient.

I definitely resonate with Fight the Insurance Company, Abdu Wazoo, I very much resonate with a lot of what she said.

The reason I want to talk about the second reason Roger is I think there are two parts of the anger, right? There's a part of the anger that is destructive to you, right? Because it has a negative impact on you. It raises your cortisol, puts you in kind of a different state of mind. I, me if I'm wrong, but I think there's a second part, which is anger may also fuel the, I will fight the system for the best care I can get.

And if I'm overstating it, please do correct me, but I feel as if the same emotion can have sort of two different impacts, one not so good on you or the system, and the other one actually might actually be really helping you. And I would say that.

Roger Royse (25:50.632)
Yeah, absolutely. Yeah, and actually what you just said is something that my therapist told me. Because at that point I said, you know, I've used CBD, cognitive behavioral therapy in the past just to like be a better cyclist and stuff. So I said, I want some tools to deal with this anger because there's got to be something wrong with my perception. You know, in 2020, 2022,

you know, the world doesn't work like this. And even if it does, I can't be walking around, you know, this angry, I got to get rid of the anger. So I went and saw a CBT, behavioral therapist. And so we sat down and she gave me lots of tools for dealing with it. But she said something really telling. She said, let me ask you, if you could turn your anger, your anger is at 100 right now. If you could turn it down to zero, would you do

I said, yeah, absolutely, of course, it's why I'm here. And she said, no, no, you wouldn't because if you turned it down to zero, you might not be here, right? Because it was kind of your annoyance with the medical system that got you into treatment when you got in. And we haven't talked about my origin story, I guess, but I went, you know, I went and got tested for this against the advice of my doctors, you know, not even outside, against their advice. And I found this cancer

test against their advice. So, and I did mostly out of, like you say, defiance, but she said, if you didn't have some degree of anger, you you wouldn't have gotten tested, you know, wouldn't have gotten in, because I don't want to get too much into the detail because I have nothing but gratitude towards my doctors and to the institutions for what they've done for me. But there were some hiccups along the way, and I had to, you know, inform them of that.

And I would not have thought to do that if I wasn't just really pissed off, you know, and I call them up and say, what the hell, guys, you forgot to schedule my chemo, you know, there's a few things like that. So she said, if you had no anger at all, you know, you wouldn't be vigilant, you know, you wouldn't be taking care of yourself. So we came up with a system, which I now apply to life generally, by the way, where just dial it back, just dial it

Roger Royse (28:18.716)
And so now, like if the waiter gets the order wrong or whatever, I had this happen, something like this, something similar in a restaurant. And that's like, okay, we had a little incident that normally would have just, you know, would have made me pretty unhappy. But I thought, well, that's not going to serve me very well, but letting them get away with this is not going to serve me very well. So I'm going to go up to 25 % and let them know that I'm not happy about what happened, but I'm not going to rant and rave.

Cause a scene, so we have to put up a little sign. So please don't heal in the waiter.

The Patient From Hell Podcast (28:55.891)
I so appreciate you talking about that too. I can visualize it. It's almost like a speedometer in a car, right? And you're driving and it's like how much you accelerate. And if you have control of the acceleration, feel like you just get, you get to use it differently. It's almost like a tool.

Roger Royse (29:13.564)
Yeah, you use it. You know, I hate to sound, I know that just listening to myself, I must sound so Machiavellian, but, and you know, 30 or 40 years ago, I used to know this woman who said that I used emotions. Not that I had them, but that I used them. And I know what she means now. And, cause this is an exact case of being very, I don't know the word is, but you're using the emotion,

The Patient From Hell Podcast (29:23.751)
I

Roger Royse (29:43.78)
You know, what the hell works for me.

The Patient From Hell Podcast (29:46.951)
I really appreciate us talking about this and for what it's worth, I don't think you sound Machiavellian. I think you're talking about an experience that actually happens very, very often and we don't talk about it. I was angry for the vast majority of 2020. Anger still fools me. I am that patient who will send the doc an email in writing, citing the guideline and asking why guidelines are not being followed. I am definitely that patient.

But I think like you, after a lot of support from a lot of people and mentors and therapists have at least tried to get to the point where emotions are almost tools, the tools in the toolbox. If we can use them at the right point, they actually can become things that can help. And I'm sounding very like, yeah, I do this all the time. not true. I have my moments of completely losing track of how to use any of these tools. But when I can, it...

Roger Royse (30:25.712)
for tools.

The Patient From Hell Podcast (30:45.049)
it's different. And I think that's almost where I wish more support was given to patients and families because some people grapple with sadness. Some people are grappling with fear. Some are grappling with like mind boggling anxiety. Some are grappling with anger. And there's actually quite a wide range of reactions to getting diagnosed to cancer and diagnosed with cancer. And I don't think we as a society have set up enough.

I don't mean support as in support groups. I just mean support to help us understand what is actually going on. And I, it's one of the things that anyway, at some point in my life we can get to. That's trying to change.

Roger Royse (31:22.31)
Yeah.

Roger Royse (31:30.228)
Yeah, absolutely. You use it as a tool. So another tool, as long as I'm honest, I'll just kind of finish out some of the things I came up with because it was just so valuable. So I was given a reading list of books on cognitive behavioral therapy and that was good, but there's this reframing idea. And so the way I had framed it in my mind is these doctors don't care whether I live or die, you

And, but then, so you reframe and you examine that says, well, is that really why, you know, they ordered this additional test or, or whatever it is I didn't like, or, or was it some other reason? And when you stop and look at it rashly and it confronts you, it really helps dissipate kind of the emotion, which is by definition irrational, right?

So yeah, so I got some good life lessons out of that. Some good character building experience out of

The Patient From Hell Podcast (32:37.36)
That's amazing. I love listening to this Roger. I think there's so much clarity. There's so much

I love the word at the end of this podcast, I was going to ask you if I was going to invite you to maybe write some of these insights down and if you're open to it, we can give it to the community because not everyone is going to have the privilege of going to therapy and not everyone will have the courage to go to therapy. And if there are these like life's lessons that you're willing to disseminate and writing and like, can help you sketch it up and show it to the community. think a lot of people could benefit from it because just to do that I've heard in this conversation, I know

Roger Royse (33:14.192)
Happy to help. I'm an open book. I'm happy to help if anybody can benefit from what I've learned or what I've experienced.

The Patient From Hell Podcast (33:14.481)
you as well.

The Patient From Hell Podcast (33:24.135)
appreciate that. On that note, I'm going to transition us to rapid fire. You ready? I'm going to ask a series of what and how questions. It'll be pretty easy. I heard you say a couple of things that I noted down here. And I just suspect in talking to you, you may come up with your own questions. And if that happens, go for it. You can add your own questions into our list. You ready? All right. I start with what is pancreatic cancer?

Roger Royse (33:47.875)
Mm -hmm, sure.

Roger Royse (33:52.412)
Well, cancer generally is really a diverse set of diseases. It's a group of diseases that has a set of common hallmarks. And pancreatic cancer, it's odd the way we do this in this country. We categorize the cancer by the tissue of origin. And that just means that they found the tumor in my pancreas.

Really what we ought to be doing, I think, is characterizing them by the type of mutation. Now, most pancreatic cancer has a KRAS mutation, and secondarily, a minority has a BRCA mutation, which I'm sure, you know, which I know you've talked about here before. I had one even more rare. I had an ELK fusion and a SMAD4. So those are my two drivers.

but even though, and that shows up in lung cancer more often than pancreatic cancer, but I'm not a lung cancer patient because the tissue of origin was pancreatic cancer. And let me just add a couple of other things. It's highly lethal. It doesn't happen that often, but when it does, it's highly lethal. And I'll tell you the reason why. And this is the number one thing. It's because it's deep. Number one reason is because it's typically detected so late. For example, by the time it gets detected,

By the time someone has symptoms, it's usually spread to stage four. And then the survival is a lot less. The odds are a lot less than if you catch it early. And that's why I got so lucky, because I caught it at stage two B before there were any symptoms. And only because I was just checking boxes and taking tests. And I took a blood test that everyone told me didn't work, but it turns out that it did. so number one, they catch it.

you know, we tend to catch it too late. So everybody should be taking liquid biopsies. So number one, it gets caught late. Number two, the pancreatic cancer, it's a little odd because there's relatively in the tumor tissue itself, the tumor micro environment, it tends to have like this fibrous shell and fewer actual cancer cells.

And that's bad because it's hard for the immune system to attack it. It's hard for the chemotherapy to get into it. So it's a tough one to kill that way. And then thirdly, because of the nature of the mutations, they're just tough mutations to kill typically. That's way more than you wanted, but that's what you get.

The Patient From Hell Podcast (37:01.119)
We're gonna make the rapid fire a tiny bit more rapid with the next question. You're all good. My questions are hard though, so I'm sorry. Putting you on the spot. Is it important for patients to get a second opinion?

Roger Royse (37:04.208)
Okay, sorry.

Roger Royse (37:15.564)
my God, yes. I can't, that's yes, absolutely. And second, you know, not just second, but as many as you can get. Like I talked to oncologists from all over the world because I talked to a surgeon here at a major university here in California who came here from Europe and he made this offhand comment during our talk and he said,

You know, the US is like way behind in terms of standard of care for pancreatic cancer surgery. What the hell? You know, this is the US, how can that be? So, and he just kind of, it was a throwaway line, but I hung up and I started calling doctors in other countries. I called doctors in Spain, in Germany, you know, and UK and Asia. Now, unfortunately, you know, most of the time you have to pay to get that consultation.

you know, like three to $500 or something like that, two to five, I'm somewhere in there. And I know a lot of people, they just don't have the resources to do that. And that's unfortunate. But if you can't do that, then the next best thing is to talk to whoever you can. So, all right, these are rapid fire. So I'm not going to go any further, but suffice it to say, yes, get involved with as many medical institutions as possible, much opinion as you can.

The Patient From Hell Podcast (38:43.463)
Alright, what is the best piece of advice you would give to someone newly diagnosed with pancreatic cancer?

Roger Royse (38:52.188)
Well, I think I gotta be careful how I phrase this, but my best piece of advice is that you, the patient, are gonna have to be super proactive and you're gonna have to take a measure of personal responsibility. And that doesn't mean that this is your fault. Doesn't mean that you did something wrong. What it means is that you really

should make massive, there's very little you can do as the patient. You're not gonna prescribe your own chemo. You're not gonna go get your own targeted therapies. You're not gonna do your own surgery, right? Well, what can you do? Well, you can make the lifestyle changes that I think really, really contribute to this cancer. And it's well documented and it's out there. And personally, that was the one thing

And plus it'll give you a good feeling that there's something you can be in control of and you can be in control of your own lifestyle changes.

The Patient From Hell Podcast (39:56.473)
Okay, what is the best piece of advice you would give to loved ones in supporting a patient like you?

Roger Royse (40:12.885)
you know, I feel like every answer I'm giving you is probably the opposite of what you want to hear.

The Patient From Hell Podcast (40:17.701)
No, I don't, I do walk in, trust me, do not walk in with answers I want to hear. I really don't. If I did that, we would be failing miserably on this podcast.

Roger Royse (40:27.844)
Okay, well, so here's the advice I would give. Yes, of course, be supportive. Be super careful, you know, as to what you say to a cancer patient. And, you know, I'm a lawyer, so words are my stock in trade. So maybe I kind of dwell on why did they use that word more than other people, but be super careful. And the things that and know what you should say and what you should not say. What you should say is how can I

You know, you know, do you need a ride? You know, call me if you need anything. You know, be supportive that way. Do not say, well, everyone's got to die sometime. You know, I could go on for an hour. I heard that from people. You know, do not say, you know, I think for most people, it would have been easier, you know, do not, I want to hear what you think, of course.

I really don't need to hear any kind of crazy, like I had a couple people, okay, here's another one. Do not say this was your fault because you took the COVID vaccine. I heard that from a couple people. Do not say please don't get chemotherapy, you know, and please don't do surgery because I've heard both, you know, that's bad. Maybe it is, maybe it isn't, you know, I'm going to trust my doctors. I don't want medical advice from my friends. So don't give

I just, you know, do not say, you should forego all standard medical treatment. And again, I heard this and go sit on a beach in Mexico and drink fruit juice instead, because I have a friend who for, you know, tens of thousands of dollars, you know, cures 100 % of their patients. You know, that's great, fine, you know, and you can offer it up, but don't push me on it because I am not going to do that. So just be careful, you know, be careful what you say. Here's another

Do not say, how much time do you have left? I heard that also. know, people, you know, at the time it bothered me a lot. Now I just look back on it and it's like, well, they just didn't know what to say, you know?

The Patient From Hell Podcast (42:40.855)
This is my last question for you. So wrap up. What do you wish you had known before you got diagnosed?

Roger Royse (42:41.5)
Thank

Roger Royse (42:49.302)
my God, these questions are rapid fiber. could go on for an hour about each of them. I wish I'd known about vaccines and their effectiveness. I wish I'd known about metabolic health. I wish I had so many things about that. There's so many things. In fact, I was doing everything. I thought I was healthy. I was exercising. I was vegan.

Looking back on it, I was doing everything you would do if you were trying to get pancreatic cancer. You know, I just wish I'd known more about health back then, and I'd wish I'd known more about non -standardive care treatments that are available. That would have been useful because it took me forever of reading PubMed documents to eventually figure all this stuff out. And I'm not saying I've got it all figured out, but I have a plan, I put it that

The Patient From Hell Podcast (43:44.057)
I super, super appreciate you coming on this episode. I suspect we're going to have you back to flesh out some of the questions that may have come up today. I'm walking away having learned so much, Like truly. I thank you unpacking the emotional side of it was really, really insightful. You talking about kind of the advice you'd give to loved ones was, I think, actually pretty spot on. So that was just a lot I'm walking away with.

Roger Royse (44:10.949)
Yeah.

The Patient From Hell Podcast (44:13.465)
I so appreciate you being on this episode. Thank you for doing everything you do for the community and I'm looking forward to having you back for round two of this.

Roger Royse (44:22.352)
All right, well, thank you.