Melanie Cole, MS (Host): In this day of misinformation, it's so easy to fall into the trap of things that you read on social media. Well we are here today to clear up a lot of those myths and help you to understand some of the cancer misinformation, treating cancer, and beware of miracle cures.

Welcome to It's Your Health Radio with Henry Mayo Newhall Hospital. I'm Melanie Cole, and joining me is fan favorite Dr. May Lin Tao. She's a Clinical Associate Professor of Radiation Oncology at the Keck School of Medicine, and the Medical Director of the Keck Medicine of USC Henry Mayo Newhall Hospital Cancer Program.

Dr. Tao, it's so great to have you with us. You're always such an awesome guest, but this is a really great topic, a little near and dear to my heart. So in your opinion, how big of a problem is cancer misinformation? Is it a growing problem? Has it always been an issue? Or is social media and even the mainstream media kind of contributing to this?

May Lin Tao, MD, MS: Yeah, those are all loaded and certainly relevant today and to the past as you mentioned questions. So it definitely is a problem. And you know, it's interesting when I sit here and reflect for a second when you ask how much of a problem or suggest how much of a problem it might be, I feel like perhaps almost every day in some shape or form, I'm dealing with medical information.

Oftentimes around the topic of either cancer diagnosis or cancer screening or cancer prevention or cancer treatment, because that is what I do day in and day out. And it's become clear to me as social media has, as you indicate, become a bigger and bigger and bigger, factor in all of our lives, especially young people that pervasive kind of mistrust and hence misinformation that gets sensationalized is probably making it worse. And I've almost become accustomed now on a day-to-day basis of hearing at least some little bit of a myth that has the potential to do real harm. So, yeah, it is, it's clearly a problem.

Host: Well, Dr. Tao, when I think of kids and social media in general, it has made them smarter. We didn't have that as a, I'm older than you are, but we didn't have that, and I think it's made them more worldly and more global and more understanding of the plights of people around the planet. But it's also, has these negative connotations where things, you know, go around from social media platform to social media platform, and in some cases they are propagated by people that you want to believe, people that you think will have some semblance of a say in this, that would make sense. Why do you think, and is that the reason, that people are so susceptible to this misinformation? Do they want to believe or is the person spreading it the reason that they are willing to believe? Is it all those factors? What do you think?

May Lin Tao, MD, MS: I think it's certainly caught up in all of those. All of us have images of who we want to be, who we want to believe in, what we want to believe. And in this world where things can be dramatized, and really, this is kind of a, an ugly word, but sensationalized, every one of us, in moments of, oh, just downtime, wants to read, you know, some dirty, gossipy thing.

It's just fun, right? And so there's this sensationalism itself, I think, and then you wrap it around what seems like a piece of health information that even though it's counterintuitive; that in itself is almost appealing, that maybe you have access to some incredible exclusive information that's almost too good to be true, but that's what's so amazing about it.

So your mind takes you there, and before you know it, you not only believe it, you're spreading the word. So it's a very complicated psychology. And I don't even necessarily think it's you know, all founded certainly in like, anyone purposely trying to be hurtful, or deliberate about causing harm.

 They're just kind of caught up and swept up into it. There definitely are, I think situations in which there's basically a marketing and a product behind it, and people are trying to sell snake oil essentially. Because, you know, we are a consumer driven world, and we love to buy things online.

 So that may be behind some of this. But I think a lot of it is just, it's just this amazing idea and I kind of want to believe it. And some of it, may actually be mixed in a tiny grain of truth and just applied in the wrong setting. We were talking earlier about ivermectin, which is something that has become increasingly popularized, I would say.

I feel like I hear about it once a week from a patient of mine, who, again, a well-meaning friend or maybe even someone in the healthcare arena has mentioned this to them. Maybe they have access to it. So there is a little bit of the product is being sold, but it's not even that it's that expensive.

There is some early research in certain settings, very, very early basic science research indicating that there may be some activity, but we have no idea in what doses, where to apply it, what's the actual side effects or toxicity if taken for a certain duration with a certain dose. Because anything you put in your body has the potential to do both good and potentially harm to your body.

So. It's just, take a little piece of truth maybe that you're very hopeful and wishful about, and it just blows up into now this is the alternative to the well-founded truths out there. So you can almost see how it can just like spread like wildfire and how it can escalate because it's just so amazing to think that that could happen.

Host: Well, this is a really timely episode, anyway, Dr. Tao, because there is a recent, there's a media person going on right now who has received a similar diagnosis to the one that President Joe Biden just let us know about. And he said he tried ivermectin because he believed it would work and it didn't.

So he doesn't have long to live, but he is now going around social media saying it didn't work for him. And so it's an interesting conundrum that this person must be in to be able to then say, I did believe this and now I know that it's not true. Do you have any personal anecdotes from your practice that you'd be willing to share with us of people that maybe did believe these things and then stop believing them or you know anything.

May Lin Tao, MD, MS: Before I mention that, I want to touch on what you mentioned, Melanie, about the kind of person that may have actually sort of, if you will come clean and said, I need to share this information about the misinformation that maybe they were duped into thinking about themselves too.

Host: And that they were spreading at the time.

May Lin Tao, MD, MS: Right. Exactly. So they were at one point part of the problem. Right. And as well as being a victim of the problem. But now they understand. So when we talk about how do we combat some of these issues about debunking false information, you know, there's a lot of strategies out there. Certainly the CDC has approaches where they're actually trying to search for this kind of information and then they proactively go online and they try to provide basically explanations as to maybe why this may have been thought to be the place.

And then provide really a scientific alternative explanation. Meaning the truthful explanation, try to stay ahead of it. But I think what you just sort of suggested is, that there are actually a lot of looked upon people or sources or trusted folks, whether they're leaders or athletes, or just people that other people look up to because, they've done exceptional things or they're out there in the media, and how they can themselves communicate to the public about health issues that are really true, and where they may have been caught up in that web. And I think that helps because these are people that can really reach other people because of, you know, the special circumstances they may be in, as well as what they've personally experienced themselves.

And in some ways I feel like we all have that little bit of obligation to be able to do that if we have a platform to do that. Just in my own personal experiences, for example, I have many, many people who come up to me, or refer to me, not as a patient, but just as a friend about this worry or that health worry or this thing that they read.

And, I actually, take probably what is more time than I can really spare sometimes it feels like, to really help them walk through that. Because I recognize it's not just that one person. That person knows other people and they themselves may have standing in the world. And so a lot of it is just recognizing that and trying to, in the most, like respectful of all ways because no one likes to be thought of as, you know, made to feel like you don't know what you're talking about or you're being stupid or whatever. But just really kind of trying to talk them through in a sensible way, and get them to understand what the scientific alternative may be in a way that reaches their sensibility.

So I think we all have potentially that role in life. We all have some sensibilities that we can all draw on and help other people work through that.

Host: Well, you are so much kinder than I, I'm thinking because I'm really not. When somebody. I've been doing this a long time, and I've been in the field for 35 years, my patience gets tested a lot. I am not as easygoing as you, but I, I do understand why you do what you do and I applaud you for it.

I just don't think at this point in my life that I have that ability to say, oh, well, I can hear why you would believe that. I can't do that at this point.

May Lin Tao, MD, MS: Another external way of doing it, Melanie, which I have found sometimes helpful, is you refer them to other entities that in sort of a hopefully in what they consider a neutral and nonjudgmental source can actually help debunk it. So there are actually search engines now that you can use to crosscheck health claims.

Reputable search engines, where they can actually check to see if a website is actually, something that is carrying fake information. So there're things like factcheck.org or Snopes, aside from organizational webpage that we all kind of know about, like the World Health Organization or CDC, or United Nations, Children's Fund or things like that. Or even journals like The Lancet or JAMA, which can be of course a little bit more medically and scientific in their language. But there are ways to actually check credibility and if someone's investigating and snooping around and trying to get information anyway, well, they should check their sorce of information and there are ways to do that even online.

And it's not you necessarily telling them it's going to a reliable search engine and figuring that out.

Host: That's great advice. And I do that. I send people to Science Direct and Medscape and Helio and the World Health Organization and the CDC. I do that. I say, why don't you look it up on some of these Healthlines, some of these that are more that they can understand, maybe Medscape or Science Director, not as easy, but Healthline is very reputable and very reliable.

 So I think that you've got a great point in helping people to see, but sometimes, and here's my next question for you. Sometimes people, and in this day and age specifically, and as we said at the beginning, it can be political, but facts aren't facts anymore. And so it's hard to believe when doubt has been placed upon the medical community, the scientific community, facts are not facts and great people, certain people that we've come to trust over the years are not trustworthy because to these people, they're evil or whatever the case may be. So if we have a friend, or relative, Dr. Tao, who's received a diagnosis and then they say, well, I don't believe in any of that stuff. I'm going to go with natural healing, or I'm going to try some supplements that I found on the internet.

I mean, isn't that even what Steve Jobs did with something along those lines? What's your advice to what we say to that person? I mean, they've just received a devastating diagnosis, and so you'd like to take them by the shoulders and say, find the best doctor you can. Do all the things they've got, but you can't do it that way. What do you say we say to them?

May Lin Tao, MD, MS: I think some of these people are in situations where there really is a lot of reason in some ways, even when you ask the medical community to feel that desperation. So you mentioned Steve Jobs. I mean, he had a diagnosis that if you asked a dozen world leaders in that diagnosis, what his prognosis was, it wasn't going to be good.

There wasn't really a solution for him that was readily available in the sort of upstanding, if you will, medical community. So people, when they're feeling desperate, or out of hope, start to do all kinds of crazy things.

Host: And maybe he wasn't the best idea to bring up because of the type of cancer he had.

May Lin Tao, MD, MS: No, but the point more is Melanie, and that can happen even in people, the feeling of desperation can even happen for somebody who has an early stage diagnosis, something that's particularly curable. It's an emotional thing, right? I feel like what's in my own experience has been really helpful, is really to address that sense of the desperation.

Even if there is a situation like the Steve Jobs where there isn't a good solution, but to make them feel like there's an alternative way of looking at the situation, that isn't about desperation. It sounds sort of like, well, how do you tell somebody who you know is going to pass from this horrible illness not to be desperate? There are ways to reframe things, that help you out of that sense of desperation or depression or this, you know, hopelessness that I think doesn't add to further harm by you seeking these basically, crazy alternative treatments that perhaps even only evoke more hopelessness, right?

You take this or you spend a lot of money on something, and especially if you have limited resources and you're actually worse off, and that makes you even more desperate. I feel like I do deal with that a lot of times in patients who have end stage disease or diagnosed with disease that's already advanced, is really trying to give them a place where they feel like they can have a little bit more peace.

And a little bit more comfort that isn't all surrounding the desperation of their diagnosis. I feel like trying to address that sometimes. And that's really a medical approach actually when you think about it, because your mind is part of your body, and it's part of your health, that can sometimes keep people from going down that rabbit hole, or at least help direct them, back to a little more place of light.

Host: That was beautifully said. And you're right. And that desperation does lead people to those things. And as somebody who received that cancer diagnosis, I know that feeling of, oh, what do I do next? What do I do now? When people tell you, Dr. Tao, that they want to do their own research about what treatments are out there.

When you hear that, what do you say to them? So when it was me, my doctors were like, okay, good. Go for it. Because I do have those resources at my disposal, but not everybody understands what they're reading as you and I just pointed out when we were talking about those peer review journals, so not everybody knows what they're looking at. When somebody says that to you, I want to do my own research; what is it you say to them about things to kind of beware, red flags, things that they're reading so that they understand and are able to separate what they can do from things that are something that may not be the best idea.

May Lin Tao, MD, MS: Well, I will often direct them general, well-resourced, well-vetted, pages we mentioned some of them earlier. I will also even prime them by giving them information that I pulled off credible resources that I know that are written for lay people, so they're written intelligently, but also digestible for somebody who doesn't have, an extensive medical background and give them that little bit of freedom with some guidance, shall we say, about being able to advocate for themselves, self-educate.

Because I think a lot of times, especially when someone is initially diagnosed with these kinds of situations like cancer, it's so harrowing for them. They feel like they want to have some control over the situation or they feel like they want to have the independence to be able to sort through some of this.

But you don't want to just throw them out into the wild jungle and they have no idea what they're stepping into, if it's valid or not. And so I try to set them up, if you will, in ways that I think will lead them to a path where they can get some information that is helpful and they feel like they've been empowered to be able to do some of that themselves.

And I also say to them, if you find something that really resonates with you and you want to talk about it, bring in the source to me and I'll take a look at it with you and we'll look at it together so they don't feel like somebody is sort of, telling them to do something or telling them they don't know anything in a way that further disempowers them in some way.

Because it's a really complicated psychology, I think, sometimes for people to accept a diagnosis and to accept a treatment course, that may have some side effects to it, it's, it's very scary.

Host: No, I love the way you put that Dr. Tao. You are such a compassionate person and I think you're spot on with asking them to maybe bring the resource to you because it does help for when we advocate for ourselves, it does help when we feel that little bit of control or autonomy where we are looking things up and we say, oh, that anastrozole I'm on now does have a side effect of cholesterol.

I'm going to ask my doctor about that to see if we keep checking that so that I know if my cholesterol went up and, you know, word to the wise, it did a little bit. So now I'm watching for that. But it something to help us learn about our condition and bringing it to you so you can explain it is just wonderful.

I'd love for you to wrap up. This is a great discussion and we could talk about this for a long time, you and I, but in the interest of time, I'd like for you to offer your best advice. There's so much misinformation and from people we thought we could trust. Please clear this up for us. What are the most important bits of things you would like us to know about the misinformation that is going all over the internet? Reading, watching, listening. Clear that up for us. What is the most important thing you want us to know about that?

May Lin Tao, MD, MS: I feel like a lot of the source of the core of misinformation, not only about serious illnesses like cancer, but just general misinformation. You should be doing this because it will help you do this even though you don't have an illness. A lot of it has to do with, not only just our general educational level and our drive to look at sensational kind of things.

I mean, if it's too good to be true, it often is probably too good to be true. But to the core even is just, how people are regularly accessing good healthcare. How many people do you know, especially by the time they reach a certain age, I mean, let's say maybe even 40 or maybe at least 50, where they don't have a primary care doctor.

And so when they have something on their skin, immediately they go to a dermatologist, which may not even be the source of why they have this thing on their skin. They're going to a sub subspecialist. I think a lot of it has to do with you should be in the hands of a regular healthcare professional, someone you trust.

There's ways to vet good people out there. Everybody's information now is online. You can find out where they're educated, whether they were board certified, where they worked before, where they got their training, how long they've been in practice. They're even reviews by other patients about things like their bedside manner or how thorough they were.

And just be in regular contact with someone that you can build a relationship and trust and who has the knowledge to be able to guide you when something comes up, or when somebody throws information at you that seems too good to be true and you want to believe it, but maybe there's a piece of you that's saying, is it too good to be true?

So that's, I think the thing that for me is the most sort of practical advice I like to give people. When someone, a friend of mine, brings me something very sensational, I say, have you talked about that with your primary care doctor or do you happen to have a primary care doctor and it just sort of like brings it all home for them a little bit?

Or they need to start to think about, I probably need to at this point be seeing someone regularly so we can talk about things that have to do with my physical and mental health and, I'm not surrounded by hearsay and sensational words out there, and getting my medicine from Facebook.

Host: I completely agree, and we used to laugh and call that what Dr. Facebook and Facebook MD and that sort of thing. So what great information you have given us today, Dr. Tao. You're just such an awesome guest every single time that you're on. And I can't thank you enough because this was an important one.

So listeners, I'd really like you to share this show with your friends and families on your social media and on your social channels, because we are learning from the experts at Henry Mayo Newhall Hospital together and they're giving us information that we can trust. And to read more about current cancer screening guidelines, you can visit our website at henry mayo.com/screenings.

You can also visit the free Henry Mayo Newhall Hospital online health information library at library.Henrymayo.com. Because again, when you find the places you can trust, then you know that the information you're reading comes from the experts that have worked their whole lives to clarify this for us. And that's so important because knowledge is power and certainly when it comes to our health, it's so, so important.

So thank you so much for joining us today. That concludes this episode of It's Your Health Radio with Henry Mayo Newhall Hospital. I'm Melanie Cole.