When Dr. Elaine Schattner stepped into our studio, she brought with her a treasure trove of insights from her journey as a physician and breast cancer survivor. Her book lays the groundwork for our conversation, chronicling the transformation of cancer from a taboo subject to one openly discussed across various platforms, particularly social media. Our discussion traverses the landscape of public health, from early 20th-century education efforts to the role of online communities today. We navigate the complexities of sharing personal health stories in the digital age and the responsibilities of medical professionals to disseminate information accurately and compassionately.
With Elaine’s expertise lighting the way, we venture into the rapidly evolving field of precision oncology, where artificial intelligence revolutionizes patient care. Gone are the days of one-size-fits-all treatments; we're now entering an era where therapies are tailored to the genetic makeup of individual tumors. This episode peels back the layers of this medical evolution, from discovering pivotal genes to developing targeted drugs that promise a future of personalized medicine. Elaine's valuable perspective underlines the importance of bridging the gap between hard sciences and human connection within the healthcare system.
The journey concludes on a reflective note, exploring the delicate balance of hope and uncertainty in cancer care. Through Elaine's eyes, we understand the weight of trust in the doctor-patient relationship and the varying ways individuals face the unknown. This episode doesn't just recount Elaine's narrative; it knits together the voices of our live audience, whose questions and experiences enrich the tapestry of our discussion. Join us for this intimate and enlightening exploration of how far we've come in understanding and battling cancer, and the paths still uncharted in this ongoing fight.
https://www.elaineschattner.com/
When Dr. Elaine Schattner stepped into our studio, she brought with her a treasure trove of insights from her journey as a physician and breast cancer survivor. Her book lays the groundwork for our conversation, chronicling the transformation of cancer from a taboo subject to one openly discussed across various platforms, particularly social media. Our discussion traverses the landscape of public health, from early 20th-century education efforts to the role of online communities today. We navigate the complexities of sharing personal health stories in the digital age and the responsibilities of medical professionals to disseminate information accurately and compassionately.
With Elaine’s expertise lighting the way, we venture into the rapidly evolving field of precision oncology, where artificial intelligence revolutionizes patient care. Gone are the days of one-size-fits-all treatments; we're now entering an era where therapies are tailored to the genetic makeup of individual tumors. This episode peels back the layers of this medical evolution, from discovering pivotal genes to developing targeted drugs that promise a future of personalized medicine. Elaine's valuable perspective underlines the importance of bridging the gap between hard sciences and human connection within the healthcare system.
The journey concludes on a reflective note, exploring the delicate balance of hope and uncertainty in cancer care. Through Elaine's eyes, we understand the weight of trust in the doctor-patient relationship and the varying ways individuals face the unknown. This episode doesn't just recount Elaine's narrative; it knits together the voices of our live audience, whose questions and experiences enrich the tapestry of our discussion. Join us for this intimate and enlightening exploration of how far we've come in understanding and battling cancer, and the paths still uncharted in this ongoing fight.
https://www.elaineschattner.com/
I'll start by highlighting the book we're going to talk about today, which is written by Dr Schattner. She is a dear colleague who resides in New York City and this book is a little thick and so I know that for some of you it might be hard to work your way through. But I think this book is really nice in how it's set up and you can choose and pick and select whatever you feel like reading that time. This book describes, in contrast to the history of cancer treatment. It describes how we view cancer in our society, from whispering it way in the beginning to now shouting at all of the rooftops through our social media accounts, telling everybody that we have cancer and what we're going through.
G van Londen:And she, dr Schattner, has divided this book in different parts. One part is about cancer awakening, which is how, somewhere before 1900 through 1960, how the awareness of cancer starts to become awakened. Then I liked it, the titles of these parts. Part two is about how cancer is coming out, and that is between 1960 and now, and then there is Cancer's Future, is the title. The third part, which includes some essays about how Dr Schattnner sees the future and how there is many things that we can improve upon. She's very hopeful about the future, and I think, given her personal history, you will share many of her perspectives, and so, without further ado, I would like to give the word to Dr Schattner, and then she can introduce herself.
Elaine Schattner:Sure. Thanks so much for inviting me to participate this evening. Yeah, and I should say you can call me Elaine. I am a physician. I'm a clinical associate professor of medicine at Weill Cornell Medical, or medicine, as they're called.
Elaine Schattner:They changed the name a few times since I began there in 1987 as an intern and basically I used to practice oncology among other things, and unfortunately, one thing Josie and I have in common is that I had a series of health setbacks which ultimately led to my stopping practice. One of those was breast cancer, with which I was diagnosed in 2002. Actually, I didn't think that was such a big deal. I had stage one disease and the breast cancer was found in the context of some other health problems and, as I write in the prologue to my book, I think I underestimated the effects. I didn't reach out to other patients.
Elaine Schattner:I remember when I was in the hospital I ended up having mastectomy because of spine problems and basically I had lesions on both sides and needed to reduce weight for my chest. So a mastectomy nurse came to me in the hospital she was from a group called Reach for Recovery, which was then affiliated with the American Cancer Society and she said is it okay if we call you, and I wasn't interested in interacting with other patients. I thought I knew what I needed to know. I knew the statistics, I took some chemotherapy and I tried to move on with my life.
Elaine Schattner:Due to other things, I became depressed and ultimately that's what killed my career, and it was unfortunate because I had recertified, in fact, in hematology. And it was unfortunate because I had recertified, in fact, in hematology, which are blood diseases and oncology cancer, and I had a practice and research lab and all this stuff. And I was in my mid-40s and just reaching success as a professor, if you will, when all these medical problems came one after another and I stopped and I took some time off and I went to journalism school so.
Elaine Schattner:I have a master's in journalism from Columbia, and it's there that I became interested in cancer awareness. And now this really what I realized at the time and this was around 2008, 2009 was that there was a lot of progress being made against cancer, but in my view, the media at least what I tended to read which were generally left-leaning outlets like the New York Times, washington Post, la Times they tended to focus on what was wrong with oncology High drug prices, the fact that precision medicine they wrote that it rarely worked. They would highlight that, so it was even on the front page about doctors taking money from pharma and so forth. And while all of that I favor transparency I felt that they were not doing justice to progress and, in particular, progress in cancer screening and also to new therapeutics. And I became aware.
Elaine Schattner:I felt that it was important to look at why people were fatalistic about cancer. Why was there so much negativity about it? And that's really how I engaged with this topic. I believe that there is a perception gap, that many people think cancer can't be treated. Many people fear the treatments more than they fear the disease, and I wanted to understand why people think that way, and so I looked at the history of ideas about cancer in North America and came up with this book.
G van Londen:And what I like is the parallel between how the cancer perspective of the world has changed, but how you also evolved over time, and how there is a parallel. You've really come to blossom and I hope you will write much, much more, but anyway, I'm very proud of you. I also noticed when you were talking, a lot of people here were shaking their heads and they recognized what you were saying.
Elaine Schattner:I sort of dove into social media because I perceived a lot of, I noted a lot of anger as people, not so much in the 2000s but after 2010 with social media. So a lot of people were sharing their stories and some people say that they were oversharing. I mean, we can talk about that and I encourage questions about that. It comes up in the book like do you have to tell your story? There are people that we feel obligated to, which I think doesn't really. I don't share the view that anyone is compelled to share. It may be useful to share, but there are people who choose not to. Still, of course, the people we see, who share or hear about in our geographic communities, in our neighborhoods, they're the people who choose to share. But there are still people who prefer to not get attention, who fear people's pity or who still feel shame or stigma about cancer, which is one of the topics that I described from the late 1800s onward, which is a real thing, that, and still in other parts of the world and still in some communities in North America, people feel ashamed of having cancer or they feel guilty about it, which we could talk about. But I encourage you to ask questions and I think we should take it from there. I mean, the book encompasses a lot and I encourage you to read it or read parts of it.
Elaine Schattner:There will be an audio version coming out soon. There's a contract out for that. I'm excited. An actor will be reading. I don't know yet who is the actor Elaine.
G van Londen:I already got a question yesterday from somebody which corresponds with part one of your book and you already alluded to it to some degree and that question touched on two topics. One is shame of having cancer how it's still there to some degree, but was much worse in the past and contamination the fear that somebody with cancer is contagious. And the fear is still there to some degree with some cancers, but much worse in the past. I don't know if you feel comfortable touching a little bit on these two questions.
Elaine Schattner:Yeah, so that's part of why I went back so far in time. The United States lacked a cancer hospital, except for hospices, basically until 1883, when a training skin and cancer hospital opened in New York City, and then funds were raised to build the New York Cancer Hospital, which didn't open until 1887. And the reason that people wanted to build those hospitals was that there was fear of contagion of cancer in other places, so much so that people with cancer were not admitted to many hospitals because doctors feared that it would infect them or other patients, and the boards of those hospitals feared that other patients would get infected. And so, in particular New York City, there was a women's hospital that was founded by sort of infamous Dr J Marion Sims, who was a racist and a lot has been written about Sims in recent years. He was from South Carolina and came to New York City and founded the New York Woman's Hospital where people could receive gynecologic care, which at the time was a very progressive thing. That hospital opened in 1855, but people with cancer were not permitted to enter that hospital, and after he somehow admitted some people with cancer he was kicked off the staff of the Women's Hospital of New York and he met with a group of wealthy New Yorkers including actually the granddaughter of Alexander Hamilton, and they raised money to build what ultimately became Memorial Sloan Kettering Cancer Hospital. And the money needed for that hospital, and why it was needed, well, referred to the fears of contagion. People didn't want to enter a hospital where people had cancer because they thought they might catch it, and there were also ideas that cancer was caused by God's wrath, basically, or some sort of divine you know. Whatever you believe in that, there was some sort of divine or karma-wise retribution in a cancer diagnosis that people who had cancer deserved. And there was just that people with cancer were not welcome in most hospitals. Some public hospitals did admit cancer patients, but very few, and those were places where people with money did not want to go because hospitals were places of last resort. If a person had means in the 1800s and they needed surgery, they would have it done in there, they would have it done in their home. To enter a hospital was to basically submit oneself to who knows what kind of procedures and filth and other problems, and people did not want to be in those institutions which were a last resort. I think it's really interesting.
Elaine Schattner:I described a book that was published in 1946 with the morbid title "I Die Daily, which was by a woman named Lorna Doone Burks who was a literary agent, and I describe that book also as the grandmother of all cancer blogs. It's just a book where she describes her experiences having cancer and she ultimately dies from it and she feels a lot of shame that she's a financial burden to her family. This is in the 1940s. The family sells the car to pay for her care. Her caregiver, who's a colored woman, basically turns out has asked her family for money to help pay the bills. Help pay the bills.
Elaine Schattner:And the protagonist, who's the woman with cancer, just feels enormous guilt and shame about being a burden. It's during World War II that she suffers from her cancer and she says why should I bother a doctor during war? There are so few men available. That's how it was then and I don't want to be a burden. I'm not worth their time having cancer, I'm hopeless, which was probably true that there was no remedy. But also she felt this heavy burden of her disease and that persists in modern times in some communities.
Elaine Schattner:Yeah, I want to just say one other thing about infection and cancer which is really interesting because we know now that some cancers are caused by infection. That's not to say that the cancers are contagious, but the human papillomavirus, epstein-barr virus, hepatitis C and hepatitis B and some other infections are causative agents in some cancers. You know there was a kernel of truth in some aspects of the concern about cancer being contagious side that the gist of it was wrong, but it is true that some cancers are caused by infectious elements. If you will, I could raise one point that has to do with Pittsburgh. Just two things, if you will. Yeah, yeah, that's a good point.
Elaine Schattner:One of the early cancer groups was in Pittsburgh and one of the earliest public cancer meetings took place in Pittsburgh. I don't know if you can see this Pittsburgh Post article, but it's the front page from February of 1914. Yeah, so there was this group which I described. You know people say that no one talked about cancer, but actually in the progressive era around starting in 1913, a group of physicians and socialites decided to try and educate the public, and particularly women, about cancer and they formed this society which ultimately became the American Cancer Society Anyway, the group. They held public meetings about cancer in New York City in a women's club, the Cosmopolitan Club, where Mrs Richard Aldrich, as she was called, basically moderated a panel between two physicians and they argued, the men argued about what was the best cancer treatment and she read the meeting. Anyway, in Pittsburgh they had a meeting at Soldiers Memorial Hall and it was supposedly attended by hundreds, if not thousands, of people, and then they also had readings in Pittsburgh's Women's Club and in the Pittsburgh Medical Society.
Elaine Schattner:These were readings about cancer to educate the public, and the idea was that people were fatalistic about cancer. They feared going for surgery. They feared going to physicians, kapilster, they feared going for surgery, they feared going to physicians, and so by the time they might go to a doctor to have, say, a lump removed, it would be too late. So the idea of the society was to encourage people to not be afraid of the doctors and surgeons in particular because that surgery could be juridic. And so they went to publicize this. They went to Pittsburgh, among other cities.
Elaine Schattner:I should say that I think there was a little bit of the clerk before the horse in that that in fact very few tumors could be treated effectively in 1914. And so I think some of the resistance to current publicity about cancer's curability in some cases not in all, don't get me wrong. Many cases still unfortunately cannot be treated. But for the idea of early detection and cancer's treatability, I think people in their hearts still fear the disease and really question its treatability based on how much publicity there was prematurely in the 20th century. I see there's a question. Shall I answer that? How useful do I think social media is in cancer education? That's a great question. Yeah, some people think I should have just written the book on social media. Yeah, and the problem, part of what took me so long to write the book was that it was a moving target and an exploding, expanding target. As I was writing, there were new platforms. I mean, for a while I started looking at Reddit and Reds on Reddit and I just thought I cannot go there. So I focused on Twitter and on Facebook a little bit because those are what I knew.
Elaine Schattner:But the fact is there are many platforms on which people talk about cancer, are many platforms on which people talk about cancer, and I think social media is crucial in several ways. First, there's the way that people can connect one with another, and that includes people who have cancer, people who are caregivers, people who are just interested or worried. As I write in the book, there are risks because people may be exposed on social media in ways they don't realize. When patients go online and share their diagnoses, if they do so, a lot of people are taking notes, and those include journalists who are looking for sources. I've seen that a lot. I mean it's kind of weird how much social media is used to connect journalists with sources. The journalists don't really share much from people who are quieter and not participating in some platforms.
Elaine Schattner:There are also drug companies that monitor social media for patients reporting side effects from drugs, biotech investors that's a thing I've been asked about it at a number of talks where they're actually monitoring Facebook pages for people. As you know, now there are Facebook pages for people who have very particular cancer forms and treatments. If you're on a particular drug, you can probably find a Facebook group for that. If you've had a bone marrow transplant, whatever you have, there are pages, groups and people monitoring those. Yeah, and then there are also people who lie about having cancer for various reasons, which I discuss sometimes financial, sometimes just weird ego things or fetishisms, and you know, it can be very confusing.
Elaine Schattner:Overall, though, I think that social media is a positive thing because people are not isolated as they were. So I live in New York City and it's pretty easy to find people if I want to, but with similar conditions. But I think for people in isolated communities and rural communities in some countries where people are less open about cancer, social media is a godsend. It really enables people to connect, but I think they have to do so carefully.
Elaine Schattner:As far as education about cancer, obviously social media can be invaluable and a lot of doctors are on social media nominally for the purpose of education. Unfortunately, I think a lot are there for promotion of their research. They too are looking for potential research subjects. You know they go online and they're sharing all this stuff. But actually, if you look at what they're doing, they're promoting their articles or they've got trials going on. You know, and they kind of let it be known, that they have trials for triple negative breast cancer or you know, alk positive lung cancer, whatever and those connections are useful. I mean it may be helpful to patients to connect with doctors online who have those research projects ongoing, but the doctors don't always say what their purpose is.
Elaine Schattner:I'm worried of everyone and I think an informed patient should be.
Elaine Schattner:So in answer to your question, I think social media is invaluable but it's complicated.
Elaine Schattner:Also, there's a lot of misinformation and, as we've seen in the past three years, we've seen doctors argue a lot about COVID Everyone sees that and knows that and even very basic things about vaccines, masks.
Elaine Schattner:But with cancer drugs, I used to argue with some doctors about the value of cancer screening and certain cancer drugs and I think those arguments didn't serve me, in part because I'm a woman and people don't like when women argue. But also I learned that just there are people who are very dogmatic and have different opinions out there and I think you can find a doctor who will tell you that cancer drugs are bad or that precision oncology doesn't work, and they may have their reasons for believing that. And I think it's very, very hard for any platform to gain to what's valid because doctors argue among themselves. I don't want to go there today, but data from medical studies can be interpreted variously. The same way you get different opinions. Do doctors interpret things different ways. I know that from my prior experience and I know that as a patient and it's worth sort of being aware of disagreements within the medical community which now people, I think, see more and are more aware of, which is probably a good thing that people recognize that.
G van Londen:Elaine, would you bring up? Maybe what we can tie in here is the pendulum that now there's so much shouting happening if that's how you want to call the social media activity that it's almost too much. And the pendulum has shifted from whispering to shouting. How do we regulate that? Will it ever be landing somewhere in the middle? How do we go about that? I think, by the way, you have many more books to write because there's a lot in your head. But I wonder if you can talk a little bit about this pendulum. On the one hand, it's good that there's so much out there and that we should always sample multiple people, multiple sources, so that we have the ability to make an informed consent. But just to pinpoint, on this pendulum, are we overshooting a little bit? Where do you feel it goes moving forward, elaine? That's a little bit of a philosophical question.
Elaine Schattner:Sure, as you say, I describe how patients' voices have cancer. 100 years ago, 90 plus percent died within three years, and I'm not exaggerating. I mean when I looked at the old papers, even with breast cancer, which we consider highly treatable, in most cases the overwhelming majority of patients died. In fact, into the 1960s one-third of patients with breast cancer died within five years. Colon cancer it was 50-50, any stage up until the 1980s. You know we don't realize how morbid cancer was until modern times. And so what happened was, as people started surviving cancer more, they were able to talk more and tell about their experiences and share those experiences. So in the 50s and 60s breast cancer was the most commonly survived cancer and women were generally more willing to talk about their experiences with cancer than men. You heard about people having breast cancer just a few, and those tended to be people who were editors at magazines because they had a platform. There was no way you couldn't just post to social media your experience with cancer or your feelings, and they were book authors and they were celebrities who had cancer who occasionally were given voice. And gradually, through the internet and I got through the early days of the web in the 90s when there were chat rooms and early blogs and people started sharing. There was someone named Grandma Barb or something with chronic lymphocytic leukemia. There was a chat room for people who had multiple myeloma, which was, by the way, incurable in the 1990s when I was practicing and median survival was under three years. Now people are living for many years with multiple myeloma.
Elaine Schattner:But the point is, as they started surviving, people started speaking out more and more and then as more people spoke out, more people became comfortable speaking out. You know, breast cancer sort of led the way with awareness, but then in the 90s some men started speaking out about having prostate cancer and then gradually, thanks to Katie Couric and others, in 2000, you have more colon cancer discussions. I think it's kind of interesting in telling that with pancreatic cancer or liver cancer you didn't hear a lot about it, and then that's important because very few people survived it, at least in our Western culture, and who are English speakers that we would hear from Western culture and who are English speakers that we would hear from. So gradually there was sort of this explosion of people acknowledging, admitting their own cases of cancer, telling their stories, and the web then and social media enabled just almost anyone who wanted to speak about having cancer, to share their pictures, to share their stories, to share their feelings, their experiences. Pictures to share their stories, to share their feelings, their experiences, to ask questions.
Elaine Schattner:And my impression 10 years ago and this is part of what made me write the book is that there was a lot of anger toward at least breast cancer patients, and that's a part because some people thought that breast cancer was represented as a good cancer, which of course, there's no good cancer. It's not a concomit command test. It is true that there was a lot of awareness about breast cancer and that there was a lot of attention perhaps disproportionately to breast cancer, and that caused frustration and actually, as I described, even competition among cancer organizations and other patient advocacy groups, and that's sort of an ugly side of it, I think also then a few cases of misrepresentation and outright lies. There's something called Munchausen's by internet, where people fabricate having cancer and then generate sympathy or funds and that causes resentment. There were a lot of issues which I think were unfortunate for people who are affected by cancer, because this happened just as so many good therapies were becoming available, and I felt that I wanted to look into that anger and understand it, and I think people on the internet are just angry, and I think that there are a lot of problems in our society, not just cancer, and if you have people saying I need more research, I need more support for my treatment, there are people who just shut that off, Also as more people saying I need more research, I need more support for my treatment, there are people who just shut that off Also. As more people spoke, I think people began to tire of it, and that's really unfortunate. That's a sort of controversial thing I describe in Chapter 14, which has awareness backfired Because, say, when Love Story came out or when Trimms of Endearment, when I was in med school, came out, cancer was a tragedy.
Elaine Schattner:The protagonist died, Everyone was sympathetic, and the reason it was a tragedy is there were very few treatments, and now that we have all these great treatments available or at least that might benefit some patients people are feeling that it's too expensive, that it's too costly, that there are other problems and so forth, and so I think my own opinion is that awareness is a constructive force and I think it's great that people should feel comfortable talking about cancer, that we need that for people to seek the care they need to not be ashamed that, like you think of mental health or other conditions.
Elaine Schattner:The more people are open about their needs, the more likely they are to have those needs met. That said, I think we have to be cognizant of other conditions. There are people with ALS, there are people with severe diabetes, there are people with other conditions epilepsy, I mean, I could name the heart disease all of which are attention-worthy. So I think, you know, as the internet has essentially splintered cancer groups and at some level, even turned some against one another. That's unfortunate, because I think we all would benefit from compassionate care and knowledge, you know, awareness of new treatments and the limitations of those treatments, and also compassion for one another. I think we have to be kind to one another and help one another as we can. So my feelings on this are very mixed. I don't know if that makes sense.
G van Londen:I wanted to ask if there's anybody who has any other questions. Oh, I see a question about AI. Shall I answer that? Yeah, that's fine, it's a good question.
Elaine Schattner:It's about artificial intelligence.
Elaine Schattner:All right, thank you for that question. So I think AI is a really important and potentially useful tool for patients and doctors. And yeah, I'm a little scared of it and there are biases with automation and all that is true. That said, I really am a believer in precision oncology. You know, when I was practicing right, we would give people transplants of chemotherapy and just basically blast their whole body with toxins and then hope that we would kill the cancer and not them, and those were very harsh treatments. Traditional chemotherapies have toxic effects on the heart, the liver. I don't need to tell this audience how toxic chemotherapy can be.
Elaine Schattner:The idea of precision oncology is to target the tumor and not the body. So the more that we learn about molecules like genetic changes that are particular, target the tumor and not the body. So the more that we learn about molecules like genetic changes that are particular, that the tumor cells or it can be that a gene is amplified in the tumor. Also, sometimes there's too much of a protein in the tumor compared to normal. If we can target those aberrations, then basically you can kill the tumor disproportionately compared to the rest of the body. Either way, with traditional chemo or with novel treatments, I think that we have the potential to know basically how everybody is doing in cancer land. If you will, almost all the major cancer centers have essentially deals with molecular pathology companies. Centers have essentially deals with molecular pathology companies and the moment you go into those hospitals you may not realize it, but your stuff, your data, your life, your molecular details are sold and those companies, separately unfortunately, are analyzing your treatments and your molecules and your cells and how those things change over time and how you do as a cancer patient. In my mind, the same way like Netflix knows what movie you might like and Amazon knows what books you might want to read, these companies, if the data weren't siloed and if the data were all analyzed properly, they could tell you if you have such a mutation, such a protein and it's in your brain and your liver and whatever treatments you've had, what's the best drug for you.
Elaine Schattner:And there's no way a human doctor can know that, even an oncologist. Because there's so many drugs available now, it's very confusing to patients having the generic names and the brand names. It's confusing to doctors. There are multiple studies at the same time of comparable drugs for the same disease, like different companies basically are running trials of what are called Me Too drugs. There'll be a PD-L1 inhibitor, a PD-1 inhibitor. Those are different kinds of inhibitors and there are now like a dozen of those. There are very similar drugs, there are generic forms, and I think that the only way to keep up with all the data in real time will be with artificial intelligence. So we could have artificial intelligence that we're constantly updating, scanning all the clinical trials, knowing the latest, including toxicity and what does not work.
Elaine Schattner:Your doctor in the future and really I don't understand why this hasn't happened already Could at least get information about what is likely to help you, or any other patient for that matter. Here are the drugs that are likely to work based on this particular feature tumor and that information should be available, in my opinion, to all oncologists and patients. No, but it's not, and I think AI will be the way that that happens. I don't think that there's any other way of achieving. You know, sifting through there are like two million cancer cases in the US a year, you know, and multiple biopsies of each, and so much molecular data. There's no way that humans can analyze all of it.
G van Londen:But similarly, I think artificial intelligence can be of great help in terms of education. There's a big gap in how all of us understand the treatments we're going through and then, once we're done with treatments, the aftermath we're dealing with, and there is a shortage in how we're being educated and which sources to go to, and I think artificial intelligence can also triage there to some degree. The AI bot can communicate with you, but can also triage you to say I think at this point you need to go and get more help from this or that person, which is something we're grossly lacking at the current time and age.
Elaine Schattner:There's not enough resources.
G van Londen:Yeah.
Elaine Schattner:I mean, I see that I would say as a patient, I prefer not to interact with AI. I know hospitals now where doctors are actually using AI or chat GPT to write their notes and to communicate with patients. That really bothers me. I mean, I want my physicians to be humans. I may want to look at the resources, the data as sifted by AI, but I want a doctor to communicate with me very strongly about that. Just one other point about all the information. I think that unfortunately, a lot of doctors are not sufficiently educated about genetics and genomics and as.
Elaine Schattner:I read in the book. I'm a fan of doctors being nice and there's a lot of money now in medical humanities you can get grants, so doctors write how it's important and patients write to narrative medicine and all that, and I like to think that I was nice to my patients. I'm communicative. I always pull them back. I really value doctors who are thoughtful and who I know in my own care doctors are not compassionate and doesn't care about like the whole me. I struggle to deal with that, but I also want my doctors to know what they're talking about and what they're doing, and it's not just older oncologists.
Elaine Schattner:But unfortunately now to go to medical school, a lot of people can go through in three years, which in my opinion, is not enough, and because of the need for primary chair doctors, which is real, we end up with physicians who have less training than I had, and I think that's unfortunate because I think there's more than ever for doctors and for patients and geneticists and everyone to know about biology and molecular biology, genomics, immunology, all that.
Elaine Schattner:And so I think courses in medical ethics are crucial and that doctors need to be effective communicators. But there has to be more focus on herd science in medical education and that is not trendy, it's not a popular view among some of my peers, but I really believe it because a lot of doctors they get to test themselves and they don't know what to make of it and this is going to get worse. Right now we have very few treatments that are effective for, say, brain cancer, and that's really unfortunate and, as I mentioned, pancreatic cancer, liver cancers. But as progress happens, there's going to be more data for doctors to absorb. You want doctors to understand the data and the limits of findings, to understand how the trials compare, and that takes a lot of education in math and science. It's the reality. I don't think organic chemistry is so important, but statistics and biology very, very important.
G van Londen:But also a person's mind. I was involved in a study where we looked at the impact of a genomic test on deciding how somebody will be treated with cancer treatment, and what I looked at was the psychological impact of the test, which is enormous for both the provider and the patient. It puts an enormous stress because, yes, more data gives more data points, but also nothing is ever 100% certain, and so you also introduce more factors of uncertainty. And so it's fascinating how, over the last hundreds, 200 years, things have progressed very quickly and it's only 200 years ago, if you think about it, two people's lifetimes years ago. If you think about it two people's lifetimes Can you imagine where we're going to be 100 years from now? It's amazing and important that we pause and see where do we want this to go, so that we're not putting the cart before the horse, but hopefully we're able to control things just a little bit more than we are at the current time.
G van Londen:I see we have a comment from somebody who is pointing out that the popular technology has much more years of data to work with in terms of artificial intelligence than the medical technology. The other comment is that hip protection is interfering with the progress of medical technology as well, as the process of publication is often challenging. They often want you to have something unique to publish, but then it may not be applicable to a whole lot of people, and if you publish something that's applicable to a whole lot of people, it's often criticized as not being original enough. This person is hopeful that we will get there eventually. I don't know if you would like to comment on this, elaine. I appreciate your perspective.
Elaine Schattner:I've heard from people at other centers too that the data are hard to collect. If you will, and just to add, to build on what you said, I'll speak to my experience dealing with the National Cancer Institute, which in principle could have the largest database about cancer statistics and they have, you know, since I got through the book. Actually, before 1973, there was no national cancer database. So there were some registries set up by doctors, like the Connecticut State Registry. The American College of Surgeons had a cancer registry and they would follow their little groups of patients over time. It was hard for statisticians to know what was the survival rate with leukemia in North America until after 1973, because there was no national database. Anyway, currently, you know now, 50 years later, the SEER group of the National Cancer Institute collects data really, really slowly. So if you look at, for example, what I know best is the breast cancer survival data. If you look for the statistics for people who are living with stage four breast cancer, it's said that their median survival is under three years. However, if you talk with people at the NCI, you learn that it takes them three years to collect the data and then what they're looking at is population-based data. Most people of the population who are known to have cancer or a particular stage of cancer are not getting the best treatments or the newest treatment. You know they don't have information on, if you get the new treatments, what's the three-year survival? I mean, I have, unfortunately, friends and acquaintances through my work in advocacy who have died since I entered this field, if you will, of patient advocacy. But the fact is I'm continually surprised by how many people I know who have stage four cancer, who are living longer than they were supposed to. That gives me optimism, but it also, as I write, makes me worry for the people who are not accessing good care, because I think that the statistics belie progress, that they obscure the progress, if you will, because the statistics lag behind what people can get. If everyone were getting the right treatment, the statistics at the Population Rebel for survival with any cancer form would be much better.
Elaine Schattner:And I'm very frustrated that even the National Cancer Institute can't provide real-time statistics. I find that impossible. But what they describe are medical records that are still text-based, that they, you know, just difficult, different systems, privacy issues, et cetera. So those are very real problems and they're not just about statistics. I mean, these are decisions that people make. I mean, if you have stage four prostate cancer, say, and you read the statistics, you might say I don't want to do this, it's not worth it. But then if you could see only the statistics that are applicable to people who got modern care or what I consider to be modern care they may not be perfect, but they probably would be better than the statistics that are published each year by the government and I think that the group there they're doing a great job, they worked really hard.
G van Londen:It's just that they're limited in their access to data and it takes them a while to collect data carefully, I see we have another comment suggesting that one of the solutions could be a centralized, socialized system of medicine where all the data are accessible and cost-effectiveness analyses are much more feasible than in our.
Elaine Schattner:American system.
G van Londen:I would like to add that I think the VA healthcare system in the United States is an example of that.
Elaine Schattner:Share that view. I would just point out some interesting history that in the 1930s the early cancer society was led by two physicians sequentially in Massachusetts who favored a national health care program and they set up the earliest state run cancer hospital was Prongville in Massachusetts. And the reason that the doctors in Massachusetts set up a state institution and a network of clinics throughout Massachusetts to basically capture all the cancer patients. They basically wanted physicians to refer all their patients to the Pondville Hospital where they would get free care was so that they could do research. I mean, yeah, there were a lot of consent issues. It's actually kind of scary what may have gone on there. But they wanted to know as much as they could about all the cancer patients in Massachusetts and those two physicians had the position of favoring a national health care program, which at the time the American Medical Association opposed, as it generally does.
Elaine Schattner:But they were pioneers really in wanting basically government-run health care for purposes of research and I found that very interesting. Yeah, of course then cancer care was not lucrative. I mean, as I write, in the early cancer hospitals they had to plead with patients for entry and they got desperate patients. There was no money to be made in oncology. Now there's it's very lucrative shields and private hospitals are thriving, as are these companies which are separating the data from the community use.
G van Londen:let's call it yeah elaine your book when our does not do justice to your book, and I think you have a lot of food for thought in terms of writing more. Someone is asking if your book explains how gene discoveries, such as for breast cancer BRCA1 and 2, have helped cancer diagnoses evolve, and she's asking what is that historical start versus where are we now?
Elaine Schattner:Sure, I think the big point there is how slowly science used to reach the clinics. The breast cancer genes were identified, let's say in the very early 90s. The HER2 module, say in the very early 90s. The HER2 module, which is the target of Perceptin and other drugs, was discovered as a cancer-causing gene in the late 1980s and it took, let's say, for HER2, to 10 years for trials and treatments and then another 5 to 10 years for the drug to be approved, and then only in very advanced cases of cancer BRCA, breast cancer genes doctors were very skeptical about there being genetic or genomic causes of cancer.
Elaine Schattner:Actually, the Cancer Society and most of the experts in cancer through the 1960s basically disparaged the early geneticists. It's interesting, actually, of all things, that some of the tobacco companies, through their organization, funded some of the earliest genetic work on cancer. You know why? Because they were looking for causes of cancer that were not tobacco related. Anything that wasn't tobacco that caused cancer was good. But anyway, the point is the mainstream cancer experts for the most part didn't believe that cancer was caused by genetic changes or even rat in families. That was controversial until the 1970s or 80s and then the ability to sequence genes in the 80s, or really the 90s, to be able to do it rapidly and to be able to clone, for example, monoclonal antibodies which developed I mean, the structure of monoclonal antibodies was discovered, I think, in 68 or 69. Cloning antibodies was in the 80s, but for drugs to enter the clinic didn't happen until the late 90s, early 2000s. The first genetic or genomic targeting drugs didn't happen until the past 12 years more or less. So my point is that it took a long time for scientific developments to reach the clinic. Now research can happen faster and that's in part because of computers and data analysis and I believe in my opinion clinical trials can happen much faster thanks to AI and just the way the data can be analyzed.
Elaine Schattner:For example, when I was practicing there was no such thing as triple negative breast cancer. There was hormone sensitive or not. That was in the 80s and early 90s. Then we started saying HER2, and we knew that was bad. Now HER2 diagnosis is good because there's so many drugs targeting that particular molecule. In fact, just today I saw a new publication I think it was the General Clinical Oncology about the new anti-HER2 therapy in lung cancer, where some lung cancer cases have a lot of HER2. And you can use some of the breast cancer or the anti-HER2 drugs, effectively in some cases in lung cancer, which is fantastic. Effectively in some cases in lung cancer, which is fantastic. I mean, we're starting to think of tissue-agnostic ways, meaning what matters is the molecules in the tumor more than the place itself. Maybe that both matters the location of the tumor and the molecules. It's that simple.
Elaine Schattner:But I think all of this, the science is evolving faster thanks to technology and communications, including advances in computer science, which people don't talk about, also advances in radiology. But I think that the diagnoses will evolve. Molecular diagnoses will evolve. People will say I have, you know, alk positives, her2 negatives, prostate cancer in the future, or you know I'm making that up.
Elaine Schattner:But the point is, as we get more and more granular in our understanding of cancer, the treatments will be more specific and I believe will be more effective. Yeah, or have the potential to be. I also think, as people know, that they have a bad form. If that happens, you know one that we don't have treatments for. That may enable them to skip treatments that are unlikely to help them or that may be too toxic without good reason, and that also is helpful. The fact that we can define tumors now that they're less responsive is useful to people, so that the people don't feel like they're throwing in the towel prematurely. They can know unfortunately there's nothing for this they can learn as much also about their tumor. That's great.
G van Londen:Just one more clinical pearl in terms of everybody who for more genetic testing. These panels are growing in size and number, and so if they can tell you whether, in your particular scenario, it's worth doing more testing. The last question asks what you found in your book research about communication of uncertainty, which we talked about earlier. Statistics can be wonderful tools, but only if you understand what the numbers mean. Elaine, would you feel comfortable answering?
Elaine Schattner:Mainly, I would say that my focus is on statistics in any way. Really, it's not a science book. I didn't set out to write about technical or statistical aspects. I think the greatest point here is that the statistics are constantly changing and people should know that. As a doctor, I was very comfortable speaking of uncertainty and I think that style is preferred by some patients and not by others.
Elaine Schattner:I remember there was an oncologist, one of my teachers, and I went to see him with my father who had a long somera. He said I know what you need, you know, and he was like very assertive, he was very clear and he had a very successful practice, as I did too, I should say. But we had different kinds of patients. You know. There are people who like doctors, who will say you know, we could go this way or we could go that, and I think there are several ways of looking at this and I'm not sure you know. And then there are other people who need a very confident sense of what's right. I mean, I think a very confident person can admit uncertainty, but it's tricky and there are some doctors who are reluctant to do that. I think also, doctors are trained now to share statistics more with patients, which I think is really hard on patients.
Elaine Schattner:In my own care I have a number of chronic conditions and every once in a while, if I don't trust a doctor, I'll start, you know, googling and doing my own research. But I prefer not to. I prefer to find a trust and go with their view and their sense of the statistics, because even statistics can be interpreted variously. I think there are different styles of doctoring, there are different styles of patienting. I've never used that as a verb before, but yeah. So I think the best communication is honesty, and that includes if there's uncertainty.
Elaine Schattner:Yeah that's right.
G van Londen:I think uncertainty is a key word for cancer survivors, for all of us human beings on the planet, but in particular, as a cancer survivor, you're facing a lot of uncertainty about everything, including your survival, and so wanting to have some certainty and control, I think, is the elephant in the room.
G van Londen:And I think that will be another nice topic to delve into for you, elaine, because I think we human beings do a very bad job of dealing with that and it's very, very hard and we all have our own ways of dealing with it. But it would be nice, historically, how we've changed dealing with that. And I think, elaine, this topic tonight, your book and your answers and your conversation with us were very, very valuable. This book, for me, was eye-opening and I've worked in this field. It's amazing how much I didn't know about the history of our field in terms of how it evolved over time, and I thank you for spending time with us tonight and I thank Cancer Bridges, wendy and Jan for allowing this to happen tonight and for all of you to be here to turn it into a group activity. I really appreciate this conversation.
Elaine Schattner:I want to say thank you for having me. I really have enjoyed hearing your questions and really I wrote this book with the intention of advocacy, because I think I wanted people to know that I think cancer in many cases is treatable, and so I thank you for your attention.