Episode 73: From Doctor to Lung Cancer Patient, Dr. Sydney Barned’s Story

The Patient From Hell Podcast (00:00.863)

Hi everyone, this is Samira Daswani, the host of the podcast, The Patient From Hell. I have a very, very unique and special guest who I had the fortune of meeting in May of this past year. I have Dr. Sydney Barned with us, who's going to speak to us both from a clinician perspective and a survivor perspective. Welcome to the show. Can you start by telling us what brought you on the show?

Dr. Sydney Barned (00:23.97)

Thank you for having me.

Dr. Sydney Barned (00:31.562)

So I thought it was a unique opportunity for myself. I am very interested in being able to share my story with patients, but also being on a podcast that is more geared towards cancer patients and their caregivers was something that was very touching to me and something that I think that I never heard of before.

Dr. Sydney Barned (00:57.026)

And I thought that it was just perfect as to something that I wanted to align myself with. So that's why I was like, sure.

The Patient From Hell Podcast (01:04.541)

and why do you care about cancer?

Dr. Sydney Barned (01:07.072)

Well, so I unfortunately was diagnosed with cancer seven and a half years ago and it totally knocked the wind out of myself and you know my family not to play upon or anything like that because the cancer I was diagnosed with was lung cancer but you know I think for me

The Patient From Hell Podcast (01:30.911)

That's so good.

Dr. Sydney Barned (01:35.342)

Being diagnosed at 33, I was in the beginning of my residency. I literally just moved to the States, probably six, seven months, you know, before diagnosis. It was just shocking because I had always been, don't smoke because you're going to get lung cancer. And why are you sucking on those cancer sticks?

because you're going to get lung cancer. Like when I was a teenager, when I was 15 with my friends, know, people experiment in their teenage. And for some reason I was always anti -smoking because of something I watched on TV when I was like an adult, when I was a kid. And it always stuck in my head. And for me to do everything right,

And then get diagnosed with lung cancer was the biggest irony of everything. But I am well and I am grateful. I unfortunately, you know, my aunt was diagnosed with lung cancer three years after I was. Unfortunately, she, you know, succumbed to it. So it's also something that

is very personal to me and my family because we've had two, three family members touch with it because I found out later on that my grand uncle died from lung cancer as well. Yes, it was actually something that, know, now peeling back the layers, we're finding the connection. But before I was diagnosed, no one ever thought about it because he smoked. So they were like, yeah, he smoked, he got lung cancer, you know, but

There is clearly probably a susceptibility to it from our end. And it wasn't until I and my aunt were diagnosed that we really thought about it.

The Patient From Hell Podcast (03:37.715)

Dr. Barney, can you tell us more about the type of lung cancer?

Dr. Sydney Barned (03:41.23)

So I have what they call non -small cell lung cancer. It's adenocarcinoma. I am stage four and it was such a learning experience because even though you learn about lung cancer in residency in med school, just getting into the nitty gritty of lung cancer, I didn't even know. So to know and learn about all the different mutations that cause lung cancer or drive

cancer to grow. I didn't learn that until after my diagnosis. So I have a mutation. It's called ALK or ALK and that is what is driving my cancer to grow. And I am fortunate enough that they have because of many, years of research, which is one of the reasons why I promote research so heavily, they have been able to

have medications that specifically target that mutation to turn it off that you know you have side effects to every medication but the side effects are so much easier to manage and the quality of life is so much better than for patients who would have been taking the traditional chemotherapy. So I was able to complete my intern year, I was able to complete my residency on time.

I was able to do my chief residency, you know, as well as doing all my rotations. And that wouldn't have been possible if I had to do chemotherapy. for me, it's like, yeah, it's just very important.

The Patient From Hell Podcast (05:21.961)

Can I ask you what you're as today?

Dr. Sydney Barned (05:26.112)

I am an internal medicine hospitalist. When I went into residency, of course, everybody goes into residency thinking, I am going to be a cardiologist or I'm going to be pulmonologist. And for a brief period of time, I thought about doing oncology, but I kind of was just like, I don't know how this is gonna go.

I want to be able to live my life. I want to be able to enjoy time with my friends and family and three more years of studying just didn't seem necessarily worth it in that end. I felt like I could impact patients, you know, in other ways. So I am a hospitalist at a hospital in my town. I actually work on the oncology floor a lot. Yeah, so.

I didn't get away from it. a matter of fact, in the pandemic, was... The oncology ward was the only place I worked for two years straight because that was the only...

The Patient From Hell Podcast (06:31.241)

Wait, can you tell us what...

Sorry.

Dr. Sydney Barned (06:35.278)

So when oncology patients, you know, like they get side effects of their medications, you know, get like ridiculous nausea, vomiting, get dehydration, you know, their kidney function starts going down or they get pneumonia or any of those side effects and they have to be hospitalized. They're hospitalized. And at my hospital, we have a floor that is designated for cancer patients and

them being hospitalized for some side effects of something. So I actually make a joke that says that if you have a sniff of cancer, they put you on the oncology floor. So in the pandemic, the oncology floor was the only COVID free floor. And because of my diagnosis, I had to basically declare myself and tell my employer that look, I have cancer.

I have a predisposing condition. I cannot see COVID patients. And thankfully they have been extremely supportive of me. And I know that I am very fortunate for that because a lot of patients don't have that. But because of that, they were like, yeah, you I know you didn't want to go on the oncology floor, but you know, it's either COVID or oncology. And I was like,

the oncology for 100 Alex. So I ended up being on the oncology floor being one of the hospitalists that was designated there. So I took care of a lot of oncology patients during those two years, learned different perspectives, know, went through the whole gamut of, you know, diagnosing cancer, you know, treating the side effects of treatment. talking about those difficult conversations about, you know, I think that we need to move from a treatment goal to a comfort goal. You know, getting hospice involved and, you know, sometimes I've had to pronounce, you know, time of death. So I've seen...

Dr. Sydney Barned (08:50.376)

the gamut of the different stages an oncology patient has to go through.

The Patient From Hell Podcast (00:01.091)

Can I ask you a personal question? What did it feel like to be a survivor on treatment, taking care of other oncology patients?

Dr. Sydney Barned (00:13.422)

So I had to do a lot of compartmentalization and it was some a lot of the times it was tough especially when I got patients who were younger and you know they reminded me of myself. I actually have one of one of the times where I lost my cool and I you know had to I'm sorry

Dr. Sydney Barned (00:47.733)

Sorry, my dog is like barking and I was like...

The Patient From Hell Podcast (00:50.957)

I'll get we record in real life situations things happen.

Dr. Sydney Barned (00:55.372)

Yeah. So I can tell you a scenario for one of the times when, you know, I kind of lost my cool. Thankfully not in the patient's room, but I had a patient who she was probably, I would want to say two years younger than I was. She was diagnosed with stage, I would want to say stage two or stage three breast cancer. And

She decided that she was going to not listen to her doctors about doing chemotherapy. She had gotten her report placed and then decided that she wasn't going to do it. She left here and went over to California to a holistic oncologist and was getting B12 in infusions and all of these different vitamin infusions. don't get me wrong, I definitely believe that there are some holistic things that can be added. I'm all about complimentary medicine, but when you are deciding that you're going to forego treatment, especially in the earlier stages where things can't be cured. It was just like, you know, come on. And she did that, you know, she went over there and by the time she was coming back to us, I forget the diagnosis that I was treating her for, but she did have a fungating at this point, breast mass that was like, you could see the cancer, you know, outside.

Which now of course means that she's now stage four, she's now inoperable, she hadn't been getting her scans so we don't know where else. And it was just like... And she was still not fully listening. And I got really mad that I had to excuse myself and go outside. And there was one of the...

Dr. Sydney Barned (03:19.062)

care managers who she and I are very close and she saw my face and she pulled me aside and said what happened and I let it go. I was like I was upset. I was just like you you just threw away your life. You know how many people who would have wished for stage three diagnosis and I mean at this point in time this is now me not being able to compartmentalize because I was like had I been stage three I would have gone I would have

done my chemo, I would have bald, I would have thrown up, I would have lost my hair, I would have done everything that I needed to do, but I would have done that in pursuit of a cure so that I could live my life and live my life to wherever. You are likely not gonna even make it to 40, right? And you just...

Yeah. And I think at that point in time, I was just so upset because I was like, you know what? I don't even know if I'm going to make it to 40, but I know definitely you would have had a chance to do that and you just threw it away. So, you know, there are going to be times where I'm affected. I definitely have seen, you know, the whole spectrum. I've

diagnosed patients with cancer, treated the side effects of cancer, you know, had to have those difficult conversations where I'm like, look, you know, treatment is not working. We need to switch to more comfort based measures. I've had to bring in hospice and, you know, I've even had to pronounce time of death. So I've seen the entire spectrum and I mean,

one of the things that it definitely does make me, it makes me very grateful for the life that I have. It makes me grateful for the fact that, you know, I'm seven and a half years in and I've never been hospitalized. Thankfully, actually, let me knock on some wood right now. But I've never been hospitalized for this. I have had side effects, but

Dr. Sydney Barned (05:42.444)

they've been minimal you know i did have one where i had like paleosophagitis which i do not recommend so i took my medication and didn't drink enough water with it and i went to bed and i guess did not get into my stomach so the following day

The Patient From Hell Podcast (05:52.215)

What is that?

Dr. Sydney Barned (06:08.494)

But I mean, thankfully I went to the emergency room. They gave me viscose lidocaine that made it better. and yeah, you know, I had to go and be like, I need viscose lidocaine. I need it now.

I that's a good thing about being a doctor because then I know exactly what I need. can self -diagnose. I've been doing that like, actually I've been doing that my entire diagnosis. I've been doing it self -diagnosing. I self -diagnosed my own PE.

The Patient From Hell Podcast (06:43.693)

Wait, your own - whoa! Okay, first go to what PE is and then tell us how you self -diagnosed it.

Dr. Sydney Barned (06:45.377)

Yeah!

So, PE short for pulmonary embolism, which is a clot in your lungs. And I got my PE a few months after, I would want to say like probably six months after my diagnosis, I was getting ready for work and I started having sharp chest pain. And I think I was also very primed for it because

After my diagnosis, I went to my gynecologist to switch my birth control because I was like, I was on the pill. didn't want to, you know, the estrogen, let me get off. I started taking baby aspirin, even though, you know, studies do not show that baby aspirin treats that or anything like that. But I was like, any little bit helps. And then I got the sharp chest pain and it was every time I took a deep breath.

And I was just like, damn you. So I was like, all right, let me watch it. Maybe it will go away. I just never did. So when I went to work, I went and found my pulmonologist who had diagnosed me. And I was like, yes, I think I have a PE. And she's like, what? I was like, I think I have a PE. I have these sharp chest pains, sharp pleuritic chest pains. And pleuritic means sharp and.

with breathing and I was like there's no other thing that it could be other than a PE and by this point in time she had learned to listen to me so she's like well let's get a scan and the scan showed up so yeah

The Patient From Hell Podcast (08:32.536)

Can I ask you, you just said something, by this point in time, she had learned to listen to me. Can you tell us about what that was like?

Dr. Sydney Barned (08:39.896)

So, all right. So when I was, first, so I'm originally from Jamaica and I started showing some signs when I was living in Jamaica. I was always very active. I ran a lot of 5Ks, I danced ballet, you know. So when I was going for my 5K runs, I realized that I was huffing and puffing like, and at first I was wondering,

This cannot be because I'm out of shape. I had taken some time off to study for my exams to come up to the States, but I kind of said, okay, maybe when I start running more, it will get better. And one morning I woke up really short of breath, but also feeling like the left side of my chest was just not working. And I

decided to go into the emergency room at the hospital that I was working at. I worked at the emergency room. So I went in for a class and while I was there, I asked one of my colleagues to write me a request to get an x -ray. So I went and got an x -ray and then at that point in time, know, some radiologists started asking me a lot of questions when they saw my scan, you know, and

My insight is 2020 when you look at the questions that they were asking me they were very much geared towards cancel. The abnormality on my chest you know was not necessarily something that was very common or something that they would have seen for me. So you know they asked me if I had weight loss, night sweats, you fevers, chills, all these things and I was like the only thing I have is really shortness of breath when I'm exercising. So

They treated me as a walking pneumonia. After I finished the antibiotics, that's when I started coughing and all this stuff. I saw a pulmonologist there. They diagnosed me with hyperactive airway disease. And then when I came to the States, I started wheezing. And that's when I went and saw my pulmonologist. So the pulmonologist, she sent me for an x -ray.

Dr. Sydney Barned (10:58.35)

Again, by this point in time, it would have been almost 10 months, 11 months after the first x -ray. And when I repeated the x -ray, the radiologist said, small effleur, low consolidation. And I freaked out, literally freaked out because I was like, there's something in my chest. If that is still there.

A year after the fact, it's the same spot, there's something in my chest. So I went to her and asked her for a CT scan because I was like, there's something in my chest. This abnormality was the same abnormality I had when I was in Jamaica. So she listened to me and she got the CT and the CT showed a mass compressing my airway. And that was the reason I was wheezing. Yeah, not asthma, but a mass.

So because of that, she knows to listen to me whenever I sing. I think something's up. So she listened to me. I had a PE and she put me on Lovenox.

So yeah. Yeah. And then I promptly, think probably a month after doing it, I was like, no, this is not it. And I went and found a hematologist to be like, yeah, I need something else. I can't do this.

The Patient From Hell Podcast (12:31.371)

If you were not a doctor or resident training, would you have known to stand up for yourself?

Dr. Sydney Barned (12:33.165)

Mm -hmm.

Dr. Sydney Barned (12:38.542)

No, I would not have known. I definitely know I would not have known about the fact that there's an abnormality for that period of time that there's something there, you know, is more than likely what we call post obstructive pneumonia that I had back then. And the fact that I was able to push for a CT and have reason that they could understand.

to be like, okay, fine, let's do it. A traditional patient would not know that. And a lot of the times, it's very simple for a doctor to sign somebody up for a CT if you give a very convincing argument. I mean, because as far as I'm concerned, there's no skin off on my back to do a CT scan. All I have to do is make sure that I can.

write for whatever reason. I mean, saying that you're having persistent coughing or persistent wheezing that's not resolved after how long is a reason enough to get a CT scan, which is the reason why I kind of find it so annoying when doctors or patients say, you know, my doctor refused to me for a CT scan. I'm like, why?

There's no skin off a back to send somebody for a CT scan to get a more detailed look. You know, we all know the limitations of an x -ray, so why not? But I mean, don't get me on that, so box, trust me.

The Patient From Hell Podcast (14:16.665)

That's for part two.

Dr. Sydney Barned (14:17.836)

Yeah, don't get me on that soapbox.

The Patient From Hell Podcast (14:19.801)

We really should unpack it because I think there's something really important in what you're saying though, right? Because even just before we started recording, I heard you say, know, patients don't know what they don't know. They don't know to ask. They feel bad asking. So it's also very important to

Dr. Sydney Barned (14:35.874)

Yeah, don't know. And the thing about it is even us, can say like, and I mean, for a long time, I was ashamed to say it. But even us as physicians, if you're not going into oncology, right, like those textbooks that we're reading, the lung cancer chapter will probably have a brief.

line or maybe let me even be a let me be generous and say probably a paragraph right about these mutation -based cancers and I mean granted I'm probably going to age myself because I graduated from medical school you know 12 years ago so I mean of course you know things have changed in in that period of time so I don't know what they're teaching you know medical students know but I do know that

my colleagues in residency when I got diagnosed, they were like, what? All right. They didn't understand. They didn't know about these mutation based cancers either. mean, we've heard about, you know, her too new for breast cancer, but no one knows these things for long. Lung cancer is treated like, you know, the, the, the damn stepchild of the cancer world, you know, it's villainized, it's stigmatized, it's, you know, under

researched. So of course, even the physicians, the general providers, they really don't pay much attention to it. And that shows in the screening, that shows in the support that they give to lung cancer patients. And it goes into public awareness and like what the public, the lack of public empathy.

because even now you can look at me and you know that I'm young and traditionally lung cancer is an old smokers disease. And the first question that somebody asked me is, did I smoke?

Dr. Sydney Barned (16:41.774)

So there's a lot in that space to be done. And a lot of it is now we're educating the public and educating patients. But I am always want to say we also need to educate ourselves. We need to educate our colleagues because the primary care doctor is usually the first line of defense for a lot of these patients.

You know, we can, for instance, you know, the primary care doctor is sending people to get, you know, mammograms, sending people to get colonoscopies. You know, the patients that you have that smoke, may not necessarily know the quantity and they may not necessarily meet the criteria, right? In terms of, you know, the general screening guidelines for lung cancer.

I mean, because the lung cancer screening guidelines are a little bit stringent when you think about it, you have to be between 50 and 80. You have to have smoked at least 20 cigarettes a day for 10 years or, you know, two packs for 10 years or some craziness like that. Right. And I mean, there are people who probably may have started smoking at 15. They may not necessarily smoke a pack a day, but the years add up. All right. And

To send them to get a screening is like simple. Like I just turned 40 last year and I had my first mammogram.

The Patient From Hell Podcast (18:17.219)

Yeah.

Dr. Sydney Barned (18:19.046)

What is that? That is the most barbaric thing I have ever gone through. Like there must be a better way to screen, right? But of course, I mean, I'm probably going to sound very sexist while saying it, I mean, like, I don't have to go through this. So of course they're not going to think about it. And honestly, we need more innovative women who have gone through it because there must be a better way. All right. And

CT, a load of CT scan literally. You're lying on your back, they say the machine says take a deep breath in.

Dr. Sydney Barned (19:00.588)

You can breathe. That's it. Like literally five minutes. Five minutes, not this whole manipulation squish. I mean, I'm sorry, I'm being animated because I was just like, you have got to be kidding me. I was just like, this is crazy.

The Patient From Hell Podcast (19:15.671)

Thank you.

The Patient From Hell Podcast (19:20.945)

I want to underscore this. Let me just be, I want to summarize this because you're a doctor, a seven and a half year non -small cell metastatic lung cancer survivor. And the part of the experience you think is barbaric is a mammogram. I just want to say that because it's so, it, it,

Dr. Sydney Barned (19:42.222)

I mean I am fortunate again again this is now this is now me being fortunate enough to a being diagnosed at 33 make it to my 40th birthday that now I can opt into screening for other cancers all right so I am going to put that out there that I am definitely very grateful even though I think this is barbaric but it is barbaric right

The Patient From Hell Podcast (19:49.539)

Yeah.

Dr. Sydney Barned (20:11.798)

Another thing that I thought was barbaric is chest tubes, you know, like that one I actually had to go through and that one I was not pleased about either, but yeah.

The Patient From Hell Podcast (20:25.177)

I feel so very, very seen right now. I just put it that way.

Dr. Sydney Barned (20:30.062)

Yeah, it's... I was just like, no, they gotta be... I mean, I feel... I mean, there's gotta be a better way.

The Patient From Hell Podcast (20:38.905)

That will be the next chapter that we do, okay? We can do that one together. Okay, I'm gonna use this as a chance to pivot into our conversation on the PCORI study. So firstly, thank you for reading both the studies that I sent you. This one is on the efficacy or effectiveness, I should say, of multimedia educational intervention to improve the understanding of risk and benefits of palliative chemotherapy in patients with advanced cancer.

Dr. Sydney Barned (20:42.199)

Yeah.

Dr. Sydney Barned (20:49.72)

Mm -hmm.

The Patient From Hell Podcast (21:09.507)

Can you just summarize that for us?

Dr. Sydney Barned (21:13.134)

So what this study was trying to see is just what patients understand about palliative chemotherapy. And I can see that most patients don't understand the word palliative to begin with, much less when you are telling them about a cancer diagnosis and telling them about doing palliative chemotherapy.

Most patients when you're going through a diagnosis of cancer, you are not necessarily understanding everything because the emotions that are tied to hearing you have cancer. So just hearing that in itself is a blow, much less hearing you have advanced disease. That's going to be another blow as well. And a lot of the times when doctors are talking to you after hearing those two statements,

It kind of sounds like, again, I'm going to be aging myself, but I was a kid when this happened. You know, you remember Charlie Brown when the teacher, when the adult was talking.

The Patient From Hell Podcast (22:20.365)

This is where I grew up, not in the US.

Dr. Sydney Barned (22:23.296)

Okay, so I didn't remember I didn't grow up in the US either but There was a cartoon called Charlie Brown. you know Snoopy, right? Yeah, so Snoopy was in the Charlie Brown cartoon, right? Yeah, and what would happen is like you could hear the characters Talking and what they were going through but any but the teacher the adult whenever the teacher was talking it was

The Patient From Hell Podcast (22:26.659)

I

The Patient From Hell Podcast (22:32.355)

I know, Snoop.

Dr. Sydney Barned (22:51.638)

you didn't hear anything. was just, remember, right? And that's kind of what it's like when a patient is hearing all of this information from their doctors. Like it's just background noise at this point, because all they're doing is thinking about, just got diagnosed with cancer. What does that mean for me? What does that mean for my family? You know, am I going to be able to work?

you know, how am I going to be able to afford this, you know, all of this other stuff. So, you know, during that first visit, especially like I can guarantee you that most of the cancer patients probably got 10 % of what you said, much less if it's like advanced stage. So when doctors, and I mean, especially during that first visit is when they're going to talk to you about palliative chemotherapy, you know, so of course, if

a patient is being explained that in a time period where they're mentally not in the timeframe to hear it, they're not gonna understand or even hear what the doctor says. So then the doctor gives pamphlets, you know, for patients to go and look and read. And again, you know, and I mean, of course, this is where I think my, my, my,

My being on both, I always say both sides of the stethoscope kind of comes in. Yeah, that's my little catchphrase, you know? But I think that I've seen patients with that look where they're literally glassed over and you can tell that they're not hearing anything you're saying. All right? And I think at that point in time, that is the key point where a physician needs to pull them.

The Patient From Hell Podcast (24:19.95)

very nice. I like it.

Dr. Sydney Barned (24:42.67)

And I find that a lot of physicians don't. They say what they have to say in terms of going through the explanation of it. A good clinician will recognize that they probably did not hear, or they will say, so they will try to engage them to say, hey, what have you understood from what I've said? Do you have any questions?

The question is, do you have any questions? That's kind of not necessarily the best thing to ask because invariably most people say no. But if you say, what did you understand from what I said? That kind of forces them to have to explain back. And it also forces them to say, you know what? I really didn't understand. Right. So then that gives you the opportunity again to try to explain it to them.

And also because they are now put on notice that you're going to ask them, they are now trying to quiet this to pay attention to you. All right? So that's one of the tricks that I have done to kind of make sure that patients understand what I'm saying. But I think that ultimately the word palliative and the fact that most people, know, survival instincts, everybody wants to survive.

to think of the fact that you're going to do chemotherapy. Most people think of chemotherapy as, I'm going to do chemotherapy for a certain period of time and then afterwards it's gonna be crap, it's gonna be rough, but afterwards I'll be fine. And some patients just don't necessarily understand that this is not curative intent, this is to help treat symptoms and you know,

the thought of, you mean I'm going to be in chemotherapy for life, you know, is also another thing as well because people think of chemotherapy as having such ridiculous side effects that they can't think of themselves doing that for life. So it is an ongoing, you know, explanation to try and to get patients to understand that. And some clinicians

Dr. Sydney Barned (27:03.168)

they, what they try to do is they try to not even use the word palliative because they know that that sense triggers. So I can tell you that my oncologist never said palliative to me. Right. I remember reading the, you know, in my chart, it has like the notes or whatever. And I remember reading in there the word palliative treatment.

and I was most offended.

Dr. Sydney Barned (27:39.282)

most offended. I was like what? And then like I had to kind of and I was like but it is palliative sygni you have to be on this for life and this is only treating your symptoms and trying to control the cancer it's not curative you know so why are you getting so you know about it but you know it's like patients always hope for cure and even at this point in time you know I'm still hoping for cure

So I think that that's kind of why patients don't necessarily understand it. So anyways, let me get back to the study. So the study basically was talking about comparing patients who got video and information, right, information for them to read and patients who didn't and what their understanding was of the word palliative.

palliative chemotherapy and the fact that they know and recognize that this is not going to be a cure. And what they realized was, you know, first of all, I'm not surprised that, you know, they gave the information to patients, you know, I think they said only 70, 78 % read the information in two weeks. Only, I think probably 30 or 40 % of patients actually listened to the video.

in two weeks and i'm not surprised by that because you leave the oncologist and you want to just totally take that put it into yeah you want to put it into a box and just not think about cancel you want to try to be as normal as possible and reading something like this is you having to face reality so i'm not surprised that you know it

The Patient From Hell Podcast (29:17.332)

I don't know what that was.

Dr. Sydney Barned (29:35.306)

not everybody read it or not everybody listen to it because some people it's like they okay so now i have to ask this question did you did you watch looney tunes okay so you know you know when the ostrich used to put their head in the sand when things used yeah it's that's that's the analogy i always use it's like they're trying to play ostrich right and they're sticking their head in the sand and thinking that

The Patient From Hell Podcast (29:46.637)

Yes.

The Patient From Hell Podcast (29:53.794)

Yes.

Dr. Sydney Barned (30:04.17)

everything's okay because they can't see it, right? So I think that there probably is some flawedness to the study itself, but it basically says that when after those patients who read it were able to ask, they asked them the questions, what do you understand about palliative chemotherapy?

they didn't really fare much different than the ones who weren't even afforded that information. So it just basically says that patients don't understand palliative chemotherapy and what that means. And even if you give them information, they're still not going to necessarily understand what it means. Now, I'll be definitely very honest with you. I looked to try to go through the entire study to see

Like what it is that they specifically did to follow up on these patients. And I did not get a chance to fully read all of that. But I do think that, especially nowadays where there are, our society is getting very, you know, our attention spans are so short now.

to sit down and read an article and depends on the words that are used. Do they have a phrase for medical? Like you know how they have legalese? Yeah, they need a phrase for medical words. But a lot of the times I find that...

The Patient From Hell Podcast (31:37.474)

Yeah.

The Patient From Hell Podcast (31:41.006)

Hmm.

Dr. Sydney Barned (31:50.238)

you learn a totally different language going into medicine. And even the words that are not medical words, you have a lot of English words that are not necessarily used in general conversations that we use a lot in medicine, right? So even though they're not medical, you you use them and you think everybody knows it, but everybody doesn't. So a lot of those...

Ham flas or information they try to be as broken down as possible. It may not necessarily I don't know how successful they were I don't know what the what the information said but I think like this is where I like having like nurse navigators or Some sort of follow -up that may not necessarily be the oncologist could come into play and this is where of course palliative

medicine really comes into play and I think that it's a underutilized service in a lot of cancer centers and even amongst the oncologists it's not one of the things that they think of right away to do. So for instance I was just referred to palliative.

The Patient From Hell Podcast (33:10.435)

Wait, what? Really?

Dr. Sydney Barned (33:10.496)

Just, just, just as in early this year. Yes, so all these years I did not have a palliative care provider. Yeah, yeah. So that's why I mean, I mean like, and I think that I didn't think about it and I know palliative. So it's a lot of different things that you have to think about. Like I didn't think I needed it. So I didn't ask for it.

But you know, I think everybody would benefit from it and I'm clearly benefiting from it now. So don't know why I didn't think I needed it, but.

The Patient From Hell Podcast (33:50.953)

Can you us how you're benefiting?

Dr. Sydney Barned (33:53.868)

So the medications that I'm on now, they cause a lot of fatigue. And I battled with it for probably a year. I was mentioning it to my oncologist, but I would try to do things like drink an extra cup of coffee or...

you know, try to see if maybe working out early in the morning would help. But sometimes, you know, working out, waking up to work out just makes the fatigue worse. And I remember getting to a point of frustration saying I can't do this anymore. So we need to either switch the med, drop the dose or something because I can't deal with this fatigue. So it wasn't until at that point in time where he realized

It was really problematic and I think...

Everything is also very subjective. I am what people call hyperactive. So me being fatigued probably is normal to somebody else, but it's not normal for me. So if I'm telling you I'm fatigued, I don't like this feeling, you know? But to him seeing me, I'm high functioning, I'm working full time, I'm...

doing a lot of advocacy, you know, so for him, he's probably thinking it's not necessarily that crucial. So again, that is another part of it. But it wasn't until I really gave an ultimatum that he was like, this is serious. Okay, let's refer her to palliative. And in my palliative, when he referred me to palliative, even then at that point in time, I was like,

Dr. Sydney Barned (35:43.426)

I mean, does palliative really deal with all, I know they deal with pain, they deal with weight loss and nutrition and nausea, vomiting and all of those things. I've seen them, I've consulted them in the hospital setting. So I was like, they probably went to look at me and like, why are you here? But I went and I guess they had to do the rule out of

The Patient From Hell Podcast (36:02.69)

and I graduate here. But I went and I guess, you know, they had some

Dr. Sydney Barned (36:11.758)

depression just to make sure that my lack of motivation or my fatigue was not you know because of depression which it's not and then afterwards they're like okay you know maybe we can try you on like a load of stimulants to see if that has helped and it has so and again that's something I didn't even know that you know you can use I know you can use things off -label but I didn't know that they did that. How do I know that?

The Patient From Hell Podcast (36:14.457)

Thanks

The Patient From Hell Podcast (36:38.625)

Interesting.

Dr. Sydney Barned (36:41.676)

I would not have battled it for a year. But you live and you learn. So, yeah.

The Patient From Hell Podcast (36:50.699)

you and I can keep talking is what I'm realizing for hours and hours, which means that if you're open to it, I would love to do part two. All right. But maybe as a way to summarize part one, I'm going to ask you one closing question, which is what is the best piece of advice you give to a newly diagnosed lung cancer patient?

Dr. Sydney Barned (36:53.28)

Alright.

Dr. Sydney Barned (36:57.824)

Okay, no problem.

Dr. Sydney Barned (37:12.982)

Best piece of advice is it's okay to cry, it's okay to let those emotions out, but it's better to not sit in that and wallow and try to do as much as you can to educate yourself about it.

The Patient From Hell Podcast (37:19.127)

to crack it until you can do...

Dr. Sydney Barned (37:41.792)

so that you can be an informed patient so that you can advocate for yourself. You can do that by going online. You can do that by joining support groups that have other patients by asking them questions. How did they find, you know, their treatments? You can ask them what treatments to ask. And, you know, this is where I'm going to plug

your map in because honestly so manta cares is working on a map right now that is amazing and i think that any newly diagnosed patient should go through that map because if you feel like you won't even know what questions to ask it even has the thing there what questions to ask your doctor so it helps you out

The Patient From Hell Podcast (38:24.067)

you

The Patient From Hell Podcast (38:33.433)

zero questions, so how does your answer help It helps a lot. And it connects you with different organizations and with any question you can think of. And it's cool as a video for you to watch them. And once and for not necessarily for you, but for all the second -hand attention seekers out there.

Dr. Sydney Barned (38:38.894)

and it connects you with different organizations about any question you can think of. And it has videos for you to watch that, you know, a lot of them are not necessarily that long because I know our attention spans are ridiculous, but it's a good way for you to get the knowledge that you need to go through a journey such as this.

The Patient From Hell Podcast (38:55.886)

for you to get the help that you need to go through your research those days. I have to say this was not plugged, no it was not sponsored, this was entirely voluntary, I did not found it, but I appreciate that, thank you. you.

With that, we're going to wrap up. Thank you for taking the time. I can't wait for part two. I suspect we will be learning a lot from you. And if you do start a podcast, please let us know because we would happily, happily tell our community about it. Thank you.

Dr. Sydney Barned (39:28.598)

Okay, all right, no problem. Thank you very much. All right, bye.