00:01:08.540So he was the first person really to upend centuries of thought that cancer had one direction
00:01:18.180and it was out from the cancer to the lymph nodes.
00:01:21.400And the thought at the time, and sometimes patients still ask me this today, is there's a moment in time when you can capture all the cancer cells.
00:01:32.760So up until Dr. Fisher, people thought that cancer failed because the surgery wasn't big enough.
00:01:41.460So there were these radical and super radical surgeries.
00:01:45.200In breast cancer, they were talking about amputating women's arms.
00:01:48.560and if they could just figure out the direct pathway that cancer spread to their legs that
00:01:54.020they could amputate their femurs. So it was just this surgical thought. And in those surgeons
00:01:59.220defenses, really the only thing they had was the knife. And Dr. Fisher was a surgeon and sort of
00:02:06.180took on the medical establishment and said, hey, why don't we understand the behavior of cancer
00:02:12.100first, see what these cancer cells are doing, and then we can be less radical and more specific on
00:02:19.780our treatment. So then a very vindictive NCI director, as well as some misguided congressional
00:02:26.980hearings, took him down at the height of his career and really brought shame to him and to
00:02:34.240his legacy in a very mean-spirited way. And that experience haunted him for the rest of his life
00:02:42.120and clouded his legacy. So there's a reason nobody's heard about him. And we are so excited
00:02:47.400to be telling this story. So I think that it's only relatively recent that people have thought
00:02:53.700of diseases as like a culture of a disease. I'm thinking specifically of people talking about like
00:02:59.320how dental care is cultural, how the way that we have thought about mental illness has changed
00:03:07.180with time according to the way that like mental illness is conceived within the culture at a
00:03:12.260specific moment. But I think that outside of mental illness, that there hasn't been a lot
00:03:18.500of understanding of how like afflictions of the rest of the body, like the discourse around them
00:03:25.000has shifted significantly over time. And it's really interesting to dig into how that discourse
00:03:31.260has shifted. So that seems to me to be a huge part of the work that you're doing. And also,
00:03:36.460the title of your sub stack is Cancer Culture. Yes, it's a great crossover, for sure. It is
00:03:42.600the culture around cancer. And I will tell you, and the reason I started this podcast is,
00:03:48.060and the reason I started my sub stack, is that I've been practicing for 20 years. And I heard
00:03:53.200the same things over and over from my patients. And it was this gap between what the world thinks
00:03:59.780cancer is, and what the experience of cancer is. And patients who are diagnosed with cancer,
00:04:06.920who either have successful treatment and go on to be cancer survivors, or are going to live and
00:04:15.240then die from cancer, or in this new wave of cancer survivors live with cancer as a chronic disease,
00:04:22.200they really go through the looking glass if you will and they're living in a different reality
00:04:28.220and they look around and say hey this is a lot different than i thought but trying to explain
00:04:34.860i had one patient who explained to me that being diagnosed with cancer is like they got sucked up
00:04:40.320by a spaceship and like the aliens were all very friendly and everyone was trying they had to
00:04:46.040repeat their their name and date of birth about a million times but then they just got beamed down
00:04:52.080after being in this cancer spaceship and looked around and we're trying to tell everyone.
00:04:59.260And no one, A, really understands and also no one wants to hear about it because cancer
00:05:06.880survivors not only carry the weight of being diagnosed with cancer and of hearing that
00:05:12.080diagnosis, but also become the explainers in chief of their disease and really are responsible
00:05:17.940for being the, I guess, the depository of a lot of people's fears about cancer. Because if it can
00:05:25.520happen to you, then by gosh, it can happen to me. We're releasing this episode in October,
00:05:31.680which is Breast Cancer Awareness Month. And I think in the last few years, maybe the last decade,
00:05:37.240there has been some tension about the public understanding of this month, like what it means
00:05:42.000to like, put pink on like, I don't know, on your car dealership, do you know what I mean? And just
00:05:49.300pink washing. So can you explain what this is and why there is tension around this phenomenon?
00:05:56.360Yes. So women drive healthcare decisions. So in many boardrooms that I've been in,1.00
00:06:04.860in many meetings that I've been in, the focus really is marketing to women. So if you can keep0.99
00:06:11.020women within a healthcare system, you can really keep the whole family in the healthcare system.0.98
00:06:16.440And women really develop the trust in the healthcare system and in their doctors, and then0.96
00:06:21.440bring the children, bring their spouses and partners into the healthcare system. So0.94
00:06:26.580that capturing something that also makes us feel good, that we are working with capitalism,
00:06:34.940But it can't just be capitalism because, hey, when you buy that car or go for that test drive, they're going to give $100 to some unknown charity.
00:06:46.700Or if I have a choice when I'm in the freezer aisle or the yogurt aisle, this always cracks me up with yogurt.
00:06:58.180Yeah. And you it's really to drive that decision when you're holding two things in your hand.1.00
00:07:05.700If one, you feel good that it might be helping someone, then you're going to choose that product
00:07:12.040is sort of where the marketing term goes. But I was just talking to a survivor the other day,
00:07:17.180and she is a breast cancer survivor and gets so frustrated by October because she said my work
00:07:23.620is around the clock, which is prevention and screening. And so I want women to be diagnosed
00:07:28.500earlier. And the fact that this just wave comes in and then goes out is just so frustrating,
00:07:34.160because it doesn't really talk about what you need to do. It's just this wave of quote,
00:07:40.260unquote, breast cancer awareness. And I think women want to move past awareness to action.
00:07:46.660But I think as a society, we might be a little bit stuck on the awareness part.
00:07:49.820So you've gotten really involved in what happens to patients after treatment has concluded.
00:07:57.320And, you know, you talked about like the the beaming down process and how it feels like people are responsible for like narrativizing their disease and that sort of thing.
00:08:06.980But I also think that there's and we'll get into this in the questions like there seems to be such an emphasis on like, oh, you beat cancer.
00:14:31.160best of luck to you it's good like they want to help you but sifting through those reactions
00:14:37.340which are a lot out of fear again because yep many patients now are diagnosed with asymptomatic
00:14:45.980cancer so quote unquote i felt fine and then i was diagnosed with the big c uh so they walk among us
00:14:53.540and it's also a fear of this could happen to me and wow I really care about you and I don't know
00:15:04.200how to tell you I care about you we're really bad about telling people I care about you and
00:15:08.180you're going through something hard we just want to go in and fix it and as we'll talk about I'm
00:15:12.820sure in our questions like people in the U.S. specifically are very bad at talking about death
00:15:17.840And so the panic talking is one way that we don't talk about death.
00:15:24.180For sure. I have a good friend whose daughter recently died of a rare cancer. And she has
00:15:33.020entered the space where no one knows what to say. And all she desperately wants to do is talk about
00:15:41.240her daughter. And yet everyone feels like they don't want to bring it up because they don't
00:15:46.820want to talk about her. They don't want to bring up these hard feelings. And she's like, I've got
00:15:50.560a hole in my chest the size of the universe. You can't, we underestimate how much we can fill that
00:15:58.220hole of sadness and of loss. And we just start throwing things in, hoping that that hole will
00:16:04.680close. But really, all of us have experienced loss. And it's just really hard to do. And it's
00:16:10.080not on us. So it's very complicated. Okay, so let's talk about our questions, which are
00:16:16.560very good and very complicated. This first one comes from Heather.
00:16:21.420Where does the prevailing language of battle about cancer come from and when?
00:16:25.900People die after a long battle with cancer, etc. I have cancer, multiple myeloma, and I never use
00:16:32.940this terminology. I much prefer imagining I am in a new sort of dialogue or conversation with my
00:16:39.140body rather than in a battle with it or with its disease. So when does this first start popping up?
00:16:46.560Americans love a war metaphor. We love a war on drugs, a war on poverty. In 1971, Nixon declared
00:16:56.840a war on cancer. And it really also, we love a hero. We love a hero story. I mean, it's a hero's
00:17:06.440quest, right? That's so pervasive in modern writing and literature and culture and in the
00:17:11.520past as well. In America, the concept of a war on cancer really started in the intra-war period in
00:17:19.000the 20s and 30s. And the precursor to the American Cancer Society was called the American Society
00:17:24.760for Control of Cancer. And they formed what was called a Women's Field Army in 1936. And the0.97
00:17:32.000stated goal of the Women's Field Army was to promote trench warfare, this is a quote,1.00
00:17:37.480promote trench warfare with a vengeance against a ruthless killer so for a dollar women joined0.99
00:17:45.640they got a brown uniform and there was a vertical organization structure where they were given a rank
00:17:51.260in this field army they had a little insignia with their rank on their chest and by 1945 there
00:17:58.380were somewhere between 500 and 700 000 members across america and the goal was to educate white
00:18:04.920middle class women on how they can prevent and detect early cancers. So most cancer was thought
00:18:13.240to affect women because we didn't know about prostate cancer. And we didn't, we weren't
00:18:17.480really invading into bodies yet to do things like colon cancer. So the visible cancers were female0.99
00:18:23.140cancers, breast cancer, and uterine and cervical cancer. And this pervasive notion really caught
00:18:33.240the American psyche because we just won World War II. And we were just obsessed with, we wanted to
00:18:40.400fight something. And so this war mentality really started at that point. And I think, in a way,
00:18:48.960it's difficult to extract it from the cancer experience, because cancer has always been with us.
00:18:55.020Unlike diseases that come and go like HIV or COVID or polio or tuberculosis, even type 2 diabetes, cancer has been with us since the ancient Egyptians and even further back in ancient China, we're documenting cases of cancer.
00:19:13.540So how we deal with this pervasive presence in our lives is really dictated by the culture surrounding when we start to pay attention.
00:19:24.180So that's, I think, where the war on cancer started.
00:19:28.080And at that point, we had all these surgeons returning from the war who had seen horrific
00:23:31.640We can, you know, prevent people from dying of infections.
00:23:35.020Cancer, please, we'll have that done, you know, in 10 years.
00:23:38.480And we really got into a cul-de-sac with the amazing and early success of the cure of childhood leukemia and adult lymphomas, which are only about 15 to 20% of cancers.
00:23:52.260And unfortunately, for the past 50 years, instead of understanding what makes these cells that are a part of us different, we've just been trying to find the perfect poison.
00:24:01.120So how much poison can we give the human that doesn't kill the human, but kills these cells that come from the human?
00:24:06.740And titrating that has really been, I think, led us to this place where people are frustrated and we're just opening the door to a different.
00:24:17.840This is the hope is that I really have for this next generation as we're finally opening
00:24:22.520the door to more specific treatments for cancer.
00:24:26.040Okay, this is actually a great setup for our next question.
00:24:28.600And it's about the way that, again, we talk about cancer.
00:24:33.880I hate that we speak about cancer as a single entity.
00:24:37.060I'm thinking of Biden talking about ending cancer, which isn't really possible, first
00:24:41.520of all, because gene mutations happen all the time, but also because not all cancers
00:24:45.660are the same, either medically or socially.
00:24:47.840As someone who had a relatively chill cancer, common among young women, pretty easily resolved with surgery, asymptomatic and discovered by chance, whose treatment was actually more disruptive than the cancer itself, surgery on my neck, super visible scar, lifelong medication to supplement the hormones I need but no longer make enough of, susceptible to a host of other medical problems now, etc.
00:25:11.320I have never felt like I can claim being a cancer survivor. It's like I didn't suffer in the way we
00:25:17.840expect people who have cancer to suffer. When I hear stats about how common cancer is among younger
00:25:23.720people, it takes me a few minutes to remember that I am included in that stat. I guess I'm
00:25:29.480more curious about how we think about the unacknowledged hierarchies in cancer and
00:25:33.300disability in general, the politics of visible suffering, and what that compels others to do
00:25:38.580or not do in terms of offering care. Like my health is actually worse after the treatment
00:25:43.440than before. Most people in my life don't see that. And I wonder how much of that is related
00:25:48.540to the fact that I didn't have a stereotypical illness journey. I didn't inhabit the sick role
00:25:54.260in ways people expect. So now the longer tale of illness is obscured.
00:26:00.040All right. There's a lot there and I'm really glad we have this question. So let's start with
00:26:04.740the first part, which is about ending cancer or finding a cure. So what does that kind of
00:26:11.020thinking just misunderstand? So President Biden is not the first person to use the word cancer
00:26:17.600moonshot. That was actually a term coined by Mary Lasker, who was a amazing philanthropist
00:26:24.480and New York socialite. I had a guest post by Judy Pearson, who wrote her biography recently
00:26:29.720on cancer culture. And she was very frustrated in the 1970s, because she felt like there was too
00:26:36.920much going into the basic understanding of cancer. She said, I don't want Petri dishes,
00:26:42.020I want pills. And so she really swung the American Cancer Society, as well as the whole
00:26:47.620of government into finding a cure for cancer. And that really has been the trajectory where
00:26:52.180that we have been on until recently. So the frustration in that the mindset of cancer is a
00:27:02.260solitary disease really comes from the past 50 years of how we understood it. I think that now
00:27:09.080we are understanding with CRISPR technology and more work on the different mutations and the
00:27:16.820targeting of mutations that are different for each cancer, as well as learning, you know,
00:27:23.040why does my grandmother smoke two packs a day and ate, you know, bacon, eggs, and three pieces
00:27:28.340of toast with butter and lived till she was 100, never got cancer, whereas someone who never smoked0.99
00:27:34.260dies of lung cancer. Why is that? And what we understand is there's host factors, there's
00:27:39.940environmental factors. And that in combination with the cancer cells, really determines how
00:27:48.400cancer forms and how we should treat it. And to understand that cancer is a disease of an organism,
00:27:54.780as well as a disease of a community and a system is really important.
00:27:59.660So okay, second part of the question, where Anjali says, like, she doesn't feel like she
00:28:04.440can claim being a cancer survivor, because she didn't have like the legible suffering
00:28:08.680that matches societal expectations. Do you hear this a lot?
00:28:13.620I do. Yeah, especially from young people with cancer. And Anjali, this is Dr. Wentworth. I'm
00:28:19.140hereby giving you your cancer card. So you can just say, if anybody questions your cancer cred,
00:28:24.640you can say, I got my cancer card from Dr. Wentworth. I wrote one of my first posts on
00:28:30.380cancer culture was right after the Barbie movie came out. And if you remember that scene at the
00:28:36.180beginning where she's dancing and the music screeches to a halt because she says do you guys
00:28:40.600ever think about death and we yeah we and the other Barbies and even the DJ knows that Barbie's
00:28:48.160not supposed to be asking that question that's how Barbie's supposed to act so and again getting
00:28:53.720back to Kate Middleton and that gauzy video of a cancer survivor we really have this concept of0.87
00:29:01.300what a cancer survivor is supposed to look like. And we really want everyone to fit in that
00:29:07.520description of what we think is a cancer survivor. A little bit, you know, you're too healthy to have
00:29:12.500cancer. You don't fit into my expectation of what a cancer survivor looks like. I'll tell you,
00:29:18.640I've been living in the 1970s as part of this podcast. And in the early 1970s, there were three
00:29:25.340movies that were released right in a row that depicted cancer. The first was called Love Story,
00:29:30.560and it starred oh yeah do you know this of course are you are you crying right now are you yes it's
00:29:37.980like our yes it means like the the hold of that movie on an entire generation cannot be overstated
00:29:44.400correct but did you know and in that movie the words cancer and leukemia are never mentioned
00:29:51.540even though that even though that's what ali mcgraw dies of oh my god really yeah second
00:29:58.900movie robert de niro in bang the drum slowly he plays a baseball player who hides his diagnosis
00:30:05.820from his teammates who actually hire a private investigator to see where he's going he also
00:30:10.660dies in that movie he has hodgkin's lymphoma and then of course the uh abc movie of the week
00:30:18.240brian's song where a dying brian piccolo holds his wife's hand and while breathlessly repeating
00:30:25.080who'd you believe it joy who'd ever believe it when in actuality if you talk to his wife his
00:30:31.620death was miserable and horrifying and painful and terrible and there was an esquire magazine article
00:30:38.200that interviewed the president of the american cancer society right after all these movies came
00:30:43.780out and this is the quote that i love and he said if you portray cancer on the screen with all its
00:30:50.060degradation and pain you have in a prayer if these people ever walked into a cancer ward they'd run0.98
00:30:55.980away so fast and we want people to stop running around from this goddamn disease so basically like0.94
00:31:02.440if we make cancer look like not a big deal then people will get treated if they think they have0.97
00:31:07.140cancer i instead i think that at least in my life like people all the time are like do i have cancer
00:31:14.300right because like they have no understanding of like like anything that feels off with their body
00:31:20.040like oh no i have cancer just like manically going down google bad rabbit holes and like i i
00:31:26.860definitely have cancer right 100 and it's so if you even look at our modern movies uh stepmom
00:31:33.400the bucket list yes the fault in our stars what's the one that i was that i was just thinking of it
00:31:39.080has uh my life uh it has uh nicole kidman and michael keaton and i watched that at like i don't
00:31:47.580know i was in seventh or eighth grade and i cried so hard and i was like this is what happens this
00:31:53.540is this is what cancer does right like and that's how it cements these narratives in our heads
00:31:57.980but it's necessary in all of those stories that people die yes they suffer they die
00:32:05.840and their loved ones are left to grieve and walk to remember sorry just walk oh yes also yes
00:32:14.200you can go on forever well it's melodrama right like you have to have that narrative of suffering
00:32:20.640and then like a death that then clarifies things for the people who lived and it has to mean
00:32:27.420something like cancer has to mean something totally and if you didn't suffer enough
00:32:33.540according to our culture and this is again this is how we come to these feelings and the great
00:32:39.640thing is we can change it because we created the culture yeah and i think that's sort of where
00:32:45.760angeli is coming from is this you are you are feeling the correct feelings that the culture
00:32:52.920is feeding you we want we expect cancer to mean something and of course nothing means anything
00:33:01.320unless you've really suffered and, in the case of Hollywood, died.
00:33:06.380Well, and if you haven't been beatified through the process of cancer,
00:33:12.500if it hasn't made you into a saint, then somehow you did cancer wrong.
00:34:00.120It's not very fun up there. Come down off the pedestal, just like Barbie, you know, her feet flattened. Like, what would happen if we flattened the feet of all of our cancer survivors and let them kind of just be broken people for a while?
00:34:15.380Yeah. Well, and the other thing, I mean, this is something that always happens with narrative, right, is it ends, right? So, like, you don't get to see what happens to the family two years after the death of this loved one, right?
00:34:27.800unless it's like a very slight coda and what Anjali is pointing to is like actually like my
00:34:34.220life after this treatment is much more difficult than during it she points to the the overlap with
00:34:42.040some discussions that we have about disability and like how people are ill-equipped to talk about
00:34:47.520essentially like this is a chronic illness that she's going to manage for the rest of her life
00:34:51.400even though the cancer itself is gone yeah there was a recent uh there's just a paper that's been
00:34:57.360out. I haven't even had a chance to read it yet. But the through line or the main takeaway was that
00:35:03.54040% of cancer patients have chronic disabilities as a result of their cancer treatment. And they
00:35:09.040also have a higher rate of non-cancer death because of the side effects of the treatments
00:35:14.040that we give them. So higher rates of heart disease and lung disease and all this other stuff,
00:35:18.680as well as secondary cancers caused by our treatments. So there's also a big return to
00:35:24.180work movement. So often patients will say, like, when should I return to work? And, you know,
00:35:30.900disability, long term and short term disability only provides a certain percentage of salary,
00:35:35.480if you're even fortunate enough to have a job that offers that. I've had many patients return
00:35:41.720to work and suddenly their position is terminated. Everyone was very happy to support them,
00:35:47.640quote unquote, when they got cancer. But now you've been gone just a little bit too long,
00:35:51.340and we hired so and so, you know. So first of all, I always tell patients, take advantage of
00:35:57.180any FMLA, I will fill out any paper, I will sign, you know, any form that documents your illness,
00:36:03.500because it is really important to have the protection. Everyone, I think you'd have to be
00:36:09.340a real jerk to be mean to someone diagnosed with cancer. But that feeling tends to fade over time.0.99
00:36:16.720and I've just seen patients burn too many times.
00:36:19.400So taking advantage of the protections
00:36:44.320Why are cancer support Facebook groups so insane? Is it desperation? Is it an older generation not knowing how to vet information from the internet? I've found they're full of quackery and desperate people seeking impossible cures.
00:36:57.600oh well to me this is just like lack of faith in the medical establishment also just distrust of
00:37:07.080like um like there's a lot of medical anxiety just it's it's much more cultural than just like
00:37:14.560cancer groups like this is in all sorts of groups for people who are dealing with
00:37:19.320with illness yes as the culture expert would you like to talk about facebook in general ann
00:37:26.260well you know like I just think that like a Facebook group is a place where you have this
00:37:33.940sense of intimacy because you are spending time there but also removed so even if though it's
00:37:40.180your real name or something close to your real name it still is with people that you haven't met
00:37:45.800but people who are often you know a lot of these Facebook groups are pretty granular like a specific
00:37:50.680type of cancer or you're a parent to someone with a specific type of cancer or a partner
00:37:54.780and so what do you do with all of the fear and anxiety that you can't express to with other
00:38:03.060people in your life maybe with the person who has the cancer maybe like you have the cancer and you
00:38:07.840just feel like you're burdening everyone else all of that excess goes into the Facebook group
00:38:14.120so it is just a space of excess emotion to me it's a it is an indication not that people are crazy
00:38:22.340it's an indication that people are suffering. That's perfectly said. And I think it's easily
00:38:28.100accessible. And when we don't allow these conversations to happen in public, and we don't
00:38:32.860allow people to be broken in public, then humans are going to find community. And I will say for
00:38:38.980patients with rare diseases, I have not seen any successful implementation for support for people
00:38:45.300with rare diseases like these Facebook groups. And for patients with really, really rare cancers,
00:38:50.920they have just told me over and over again, and often are educating us because they're
00:38:56.220communicating with people that have been around the world for different second opinions.
00:39:01.840That has been such a powerful positive. I will. So I'll kind of again, couch this and how this
00:39:09.220culture was created. If you think back to the 1800s, the gap between what I mean, I'm going
00:39:17.100of call them physicians, but really they were kind of like the local healer kind of, the gap
00:39:21.660between what that person knew and the patient knew was very narrow. So everybody knew, quote unquote,
00:39:29.960that hemlock was a treatment for many things or leeches were a treatment for many things. So you
00:39:35.060just went down to the local river, picked some hemlock and got some leeches. And it was a very
00:39:41.300narrow gap. But then, again, with the invention of antiseptic technique, of antibiotics, of
00:39:47.640microscopes, of anesthesia, the gap between the patient and the mostly all knowing male physician
00:39:55.980became wider. And then, you know, we started to see things like the thalidomide scandal, and
00:40:03.960And the trust in that all-knowing healer really started to degrade.
00:40:10.520And with the democratization of information with the internet, I think the information
00:40:16.260It's just the application of that information.
00:40:18.920So what do you do with the information?
00:40:22.040And in patients that are desperately looking for answers, I think they have the information,
00:40:27.040but what to do with that information is sort of where medicine comes back in.
00:40:31.720Not again as an all-knowing healer, but just a, hey, I have training to help you make a decision on what your best course of action, given this particular narrow diagnosis is.
00:40:45.320Yeah. I also think there's so much complication in talking about placebo, because if something works for someone and makes them feel better, it can be really insulting to be like, oh, that's the placebo effect, right?
00:40:58.480yeah like you're just making that up in your head that that makes you feel better
00:41:02.960but also that's often you know people are using this as like this will also work for you because
00:41:08.460it worked for me when it's probably a complicated melange of psychosomatic stuff going on and maybe
00:41:17.500stuff with your body too and maybe stuff with like how what's working in your body at a certain
00:41:22.240moment but that we just haven't we're so ill-equipped to talk about that in any good way
00:41:26.360We also are looking for trusted sources. And when you're diagnosed with cancer, you rally. I've seen amazing things happen, you know, families come back together. I've seen the opposite. But a lot of times you rally, everybody rallies around someone who is diagnosed with cancer. And those are your trusted people. Like my mom thinks I'm a wonderful doctor, but like the person walking in for the first time is like doesn't know me from Adam's house cat, you know.
00:41:54.980So physicians undergo four years of college, this is me, four years of college, four years
00:42:01.320of medical school, and five years of training.