2023-08-27_Cancer-Uncovered_Episode-32_master

[00:00:00] Intro: We are a resource for learners, including every member of the Livestrong Cancer Institute’s on track educational pipeline from middle school to residency. We are a growing collection of interviews, talks, and experiences that uncover the myths and the uncertainties of cancer and careers in cancer in order to empower and inspire generations of thinkers and leaders.

This is Cancer Uncovered. An education and empowerment podcast by the Livestrong Cancer Institutes.

[00:00:44] Eugenio Sobrevilla: Welcome back to Cancer Uncovered. My name is Eugenio Sobrevilla and I’m with the Livestrong Cancer Institute at the Dell Medical School at the University of Texas at Austin. And today we’ll be talking with Dr. Osbakken. for our part one of our two parter episode. She is a sociologist and a professor for the course named Cancerland.

And in this first part episode, we’ll be talking about the motivation for the creation of the class, what exactly cancer is in a societal sense, and even discuss her own personal experience with cancer and how she came to empower herself and others. We hope you enjoy. Thanks for listening. Hello, my name is Eugenio Sobrevilla from the University of Texas at Austin Dell Medical School, and this is Cancer Uncovered.

Thank you so much for joining us today. I am very excited to have our guest, Dr. Stephanie Osbacken. She is a professor of sociology here at UT Austin, and she will be joining us in our conversation today to talk about her work and discuss the role that cancer plays in our society. If you could please introduce yourself, and we can go ahead and get started.

[00:01:37] Stephanie Osbakken: Certainly. Thank you so much for having me. As you said, my name is Dr. Steph Osbacken, and I am a sociologist by training, and… Currently my appointment is in the program, the Health and Society Program. It’s an interdisciplinary program here on campus. And so I am an associate professor of instruction for that program.

I’m also I wear an administrative hat for that program as well. So I’m the associate director of academic affairs for the Health and Society Program. Well, again, thank you so much for joining us today. I have a couple questions here prepared for us. So, Ava, can you please talk a little bit more about the work here that you do at UCEDD?

Yeah, yeah. So, what I didn’t say when I was introducing myself is that I also teach a class on cancer. It’s called Cancerland. It’s an upper division sociology class that’s cross listed with health and society. And it was informed by my own experience as a cancer patient. I was a sociologist and working.

When I had my own cancer diagnosis in December of 2016, I was like to tell my students it was on the 21st, right? So the winter solstice, the darkest night of the year, uh, it’s one of my, it’s one of my, um, I don’t know, it had some significance for me at that moment. Cause as anyone who’s had a cancer diagnosis knows you, you descend into the depths of it’s the worst, the worst time is right after you.

And so when I was diagnosed, I was. I was fortunate, if you can call it fortunate, to be in that middle part of the semester. You know, I was finishing up the fall semester and I was preparing for my spring semester and I had great, great, great support from my department. I found out very quickly that I was diagnosed with stage 2A breast cancer.

And it was, you know, within a few short weeks, found out that it was driven by a genetic mutation that I inherited. from my mother who was adopted. So we didn’t know anything about her

[00:03:27] Eugenio Sobrevilla: history. I went ahead and looked up what genetic mutations are exactly defined as. So genetic mutations come from changes to your DNA sequence that happened during cell division, when your cell makes copies of themselves.

[00:03:41] Stephanie Osbakken: And then I found out it was triple negative.

[00:03:44] Eugenio Sobrevilla: The CDC defines triple negative as a type of breast cancer that does not have any of the receptors that are commonly found in breast cancer. Think of cancer cells as a house. The front door may have three kinds of locks called receptors.

[00:03:57] Stephanie Osbakken: And so I had these pretty tricky types of variables in play, right?

So it was harder to treat than other kinds of breast cancer. And because I had this genetic mutation, it was aggressive. It was coming in pretty early. I was pretty young, well, what I consider young, not as young as you, but I was 43. And, and so I was able to take that next semester off and really turn to my, my treatment.

While I was in treatment and I was twiddling my thumbs and bored and not missing my students, missing the classroom, I decided, uh, to create a class really about my experience. I could not really see. See the cancer experience solely through the eyes of a patient, because I did have this sociological training.

So I saw it both as I experienced it and the fear and the uncertainty and all of the questions that patients have, but I also saw it as, well, isn’t this interesting? Well, this is curious. I wonder why this is this way. And so I created a class. Really to reconcile both my own personal experience, but also how social and cultural factors shape cancer in every manifestation.

So cancer, how it shapes our research of cancer, how it shapes the treatment of cancer, how it shapes outcomes for different patient populations, how it shapes the experiences that patients have, how it shapes social relationships, right? All the different things that are. Separate and distinct from the biological process of cancer evolving in a body, right?

So, the sociology piece of my training couldn’t let me turn those things off. So, that’s, that’s where it kind of came from and that’s I guess why I’m here with you today.

[00:05:43] Eugenio Sobrevilla: I know that you mentioned that you did get diagnosed with cancer. Would you be comfortable sharing a little bit about that experience a bit more? Your reaction, your journey?

[00:05:45] Stephanie Osbakken: Yeah, well thank you for asking. I, you know, I teach this class that I teach every semester, actually. I won’t be teaching in the fall, which is sad. But I will be teaching it again in the spring. And the class that I teach, it tends to attract a lot of students who are had their own experiences with cancer.

So the first thing I would say is that every cancer experience is a unique cancer experience, both in terms of the diagnosis, the type of cancer, uh, the biography or the, you know, the specific unique factors that shape individuals lives because cancer is always occurring in a social context. So. So I can tell about my cancer, but it is very much unique to me.

And I, and I would never want to generalize or, or make any universal statements about cancer. But for me, you know, I was, I was a mother happily married. So I have a supportive partner. I had two children, four and almost six year old at the time. So my first concern as a lot of people can probably relate to was about my kids.

I mean, I was scared for my own life and for what treatment might mean, or, or, you know. How serious it was. I mean, we, we know cancer, I think culturally as this scary, big, deadly thing, right? We use the term like, oh, it’s a cancer. Oh, it’s like cancer. It’s, you know, as serious as cancer, right? That language, those metaphors are in our culture for, for good reason.

It’s terrifying. And so when you have that diagnosis, not only are you grappling with the very lived experience of what’s going on in your body, but You have that overlay of all that fear, that uncertainty, that anxiety, you know that some cancers are deadlier than others. You know, some people go in remission and their cancer is gone and you just don’t necessarily know where you are.

It feels a little bit like a crapshoot, you know, like what’s it going to be? What’s my fate going to be? So there’s the uncertainty, figuring out a plan, having to learn. you know, cancer land, as I call it, the landscape of cancer, finding who your providers are going to be interviewing physicians. I interviewed radiation oncologist, medical oncologist, surgical oncologist, and many of each type.

So it’s a, it’s a full time job before you can even get into the process of treating the cancer. And I think that a lot of us who have cancer again, Generalize, but a lot of us want it out of our body as quickly as possible, and I think that getting your head around the fact that for certain kinds of cancers, that’s possible and for many, many, many kinds of cancers, that’s not possible.

You treat the cancer in the body so you can watch what it is responsive to right in terms of the different therapies. And so my sort of once they figured out that I had a mutation that I had this triple negative type of cancer, they knew that I was going to undergo chemotherapy first.

[00:08:21] Eugenio Sobrevilla: Chemotherapy are a set of different drugs or medications used to treat cancer.

Another name for chemotherapy can be chemo, psychotoxic, or hazard drugs. These drugs come in many different forms including liquids or pills.

[00:08:34] Stephanie Osbakken: And, and all of everyone was in agreement on that, so I felt very confident that that was standard of care at that time for my specific type of cancer. And so I started chemotherapy pretty quickly.

I was able to get that medical leave that I mentioned. And, and so just got down to the business of, of trying to do the right thing and the hard thing and, and just putting one foot in front of the other. Because I think that cancer treatment as mine was. Several months long is a slog. It is a slog. And I knew that there’d be surgery at the end of it.

So after after they, you know, aggressively attacked that the cancer with the chemotherapy that I would have surgery and given my breast cancer risk because of my genetic mutation. I have a bracket to mutation

[00:09:18] Eugenio Sobrevilla: when talking about rocket to mutations. Women have two different types of genes, BRCA1 and BRCA2, but only some women have mutations in those genes.

About 1 in every 500 women in the U. S. has a mutation in either her BRCA1 or BRCA2. I

[00:09:34] Stephanie Osbakken: knew that my physicians were all recommending that I have a bilateral mastectomy.

[00:09:39] Eugenio Sobrevilla: A bilateral mastectomy is when both breasts are removed in order to reduce the risk for those women who have a greater risk of getting cancer, specifically those with the BRCA gene.

[00:09:48] Stephanie Osbakken: Which is its own separate thing. So breast cancer, as we all know, is very common among women. It’s fortunately one of the best screened cancer, and there’s really great prognosis if you catch it early, right? So we have this language around breast cancer, breast cancer detection, uh, but it also is, in many ways, it’s a culturally significant cancer because it’s very gendered, right?

It’s, it’s hyper feminized. It’s, it’s in many ways, you know, we see… see breast as, as kind of a symbol of femininity. And so losing that, that symbol or having that symbol compromised through surgery and reconstruction is something that’s carries a level of, of, um, you know, sort of stigma for some people, for sure.

Other people, even if it’s not stigma. It’s, it’s a, it’s a, it’s strongly associated with their identity, you know, with identity. I think that, uh, compared to other cancers, not that others aren’t significantly related to identity, but it has that piece to it. And so thinking about, okay, well, what is that going to look like?

So needing to think about. surgical removal of all the breast tissue and then reconstruction or choosing maybe not to reconstruct. And so going through all of those decisions, you’re, you’re for me and again, everyone’s different, but for me, my mind was just in just a vortex. It felt like I was just in a tornado initially.

And then you find, you find your, your center again, you can find your. You’re, you’re calm, but, um, it takes a little while. And so, that’s kind of what it was like for me. Luckily, I had a really good response to the chemotherapy. I had, um, really great surgical, um, outcomes. And then I was fine for a little while.

What they found a couple years later is that the surgeon didn’t take out all of the cancer, sadly. And so I’d had what was called a nipple sprain. A nipple

[00:11:39] Eugenio Sobrevilla: sparing mastectomy is a surgical advancement for women undergoing removal of the breast due to breast cancer or as a preventative measure known as risk reduction surgery.

[00:11:48] Stephanie Osbakken: I would just very common surgical procedure for people for whom it’s deemed appropriate, medically appropriate, but there was cancer remaining on that nipple and so I had a recurrence. A couple of years later, at that moment in time, um, because I had this mutation, there were new scientific advances, which is fantastic.

Great thing about scientific innovations in cancer is that, you know, people who are even diagnosed six months after I was have different options on the table and those continue to develop and emerge. And so I had some great new targeted therapies that were available to me and my oncologist and I decided.

Among them and started taking a PARP inhibitor that was unique to my specific Cancer footprint, you know, and I have to say knock on knock on wood here in your table Um, it’s that I’ve been no evidence of disease a sense. I was on that PARP inhibitor

[00:12:44] Eugenio Sobrevilla: A PARP inhibitor is a substance that blocks an enzyme in cells called PARP with PARP being the cell that Health Repair DNA when it becomes damaged and they

[00:12:53] Stephanie Osbakken: had another surgery that was addressing the cancerous, um, you know, the cancer that remained and, and then since that time it’s been four years and I am, I am happy to say that I continue to take this targeted daily oral therapy, but that I have not, I have not had another brush with, with cancer.

Thank you. I hope that that’s not too much.

[00:13:16] Eugenio Sobrevilla: No, no. That’s great. Thank you so much for sharing that. Yes, and thank you so much for just closing with us and being comfortable to talk about that. Yeah. Thank

[00:13:17] Stephanie Osbakken: you so much. It’s something I say on the very first day of all my classes when I teach Cancerland every semester, because I want students to know that, that I’m all into, that I’m there and I want them to.

be as vulnerable as they want to be. As I said, you know, I’d say about 50%, maybe even more of the students have self selected into this class, which I require an interview for, by the way. Yes, it’s in demand a lot, I think because of the unique environment that it creates. I don’t take credit. I think that my students create the environment, and so the students who self select in are incredibly thoughtful.

They are, they’re wanting to really talk about hard things. things. They’re not, they’re not frightened of weighty issues like mortality and like, and just, you know, all the things that we, that we kind of bring up throughout the course of the semester. So I want to make sure that they know that I’m showing up fully and that I’m honest and that I want them to feel as comfortable as possible to be in that space too.

[00:14:11] Eugenio Sobrevilla: And

[00:14:12] Stephanie Osbakken: I think it’s such a unique class, especially within the frame of cancer, as you were talking about, it’s a heavy issues weighted. influenced very heavily. So you making a space for that and a space available for students to inform themselves and to learn something new with that. I think that’s an amazing option that you can offer for them.

I would say thank you for saying that, but I would say. Yeah. The young generation, I think is better equipped. To have conversations that are difficult. And that are hard. That anyone gives them credit for. I think that they are. Much better able to take these conversations than people, perhaps of my own age, who, um, you know, have children and who are, are, you know, would be sent into a tailspin panic, frankly, having some of these conversations.

I have friends who do not really feel comfortable discussing cancer with me, even though they know it’s part of my history, uh, even. They know, you know, if I’m still in treatment, but my students, they never flinch. They never miss a beat. So I think we sell our younger generation short if we don’t think that they’ve got the capacity to have those conversations.

I actually think that they are, they are better perhaps than others to, to really grapple with hard things. Absolutely. I agree. Thank you. So going back a little bit more into the class, our main listeners are high school students, and you talk about the history of cancer in the U S. Within this class.

Mm-hmm. , would you be able to dive a a bit more into Cancer within society and how we understand cancer in our own society here in the us? Sure. Sure. Well, the first thing that I would say to your young listeners is that you all are the next generation of cancer researchers cancer. Um, you know, providers, you know, for, for cancer care, you are the ones who are going to be supporting people in, in the healthcare system broadly.

So, um, come, don’t walk, you know, run to, to, you know, study these things and to, to better educate yourself and find your place in these areas. Uh, a great book that I assigned for my cancer line class that I think is a, is a primer and I still learn something from, from it every semester when I read it every, every term is The Emperor of All Maladies.

It’s by Sartha Mukherjee and it is, it’s a beautiful book. It’s a Pulitzer prize winning book. It’s about, I think it was 2010 is when it was published and, but it really talks about the biography of cancer, right? And so it’s not, you know, very interestingly doesn’t say the history of cancer, but talks about the biography and it’s, it’s this living, breathing thing.

And so that’s a great primer to think about how cancer was first understood in ancient times and then more, and, and, you know, more modern era and in our country. specifically in the history of cancer and not only our discoveries, our scientific discoveries about cancer, but also about how we needed this social apparatus to really better understand cancer and, and some of the key players in that history who really helped put cancer on the map, on the social map where you could write about it and use the word cancer in newspapers because until not that long ago, you really couldn’t say that, right?

People would die of a long illness. Right. There’d be all these euphemisms and, and sort of protecting our, our, our sort of collective understandings about cancer. Everything it was, it was with kid gloves, right? And it was stigmatized and it was not very understood. And it was often a death sentence, right?

We didn’t have many treatments to cancer until. Um, starting in the middle part of the 20th century, and then they’ve just, it’s every passing year, there’s new advances, new advances and new advances. And so I think that cancer at one point in time was synonymous with death. And increasingly it’s synonymous with a chronic disease, right.

Or even something that can be eradicated altogether. And not to say that some cancels, cancers aren’t lethal. It still is very much the second cause of death. Um, and you know, second, you know. Most common cause of death in this country and around the world as well. It is a killer, but I think that our understandings with cancer, uh, have evolved scientifically, but also socially as a result of that.

I would say, though, that there is still what I say to my students, what we read about, what we discover together collectively. There is, you know, a social component to cancer that not only helps us understand it, but our chances of, of, you know, surviving a cancer diagnosis, of, of faring well, um, of having fewer side effects during treatment.

All of the things that we think about with, with cancer and an embodied experience of cancer are mediated, what I say is mediated by social forces, right? Social factors, cultural factors. And what I mean by that is that. Where you come from, um, you know, the resources you have. Are you insured? Are you uninsured or maybe you’re underinsured, right?

You have insurance, but not great quality of care or access to care. Are you in a geographically isolated area, right? Or do you have social support? Do you have a family that can, can help you, um, negotiate the, the burdens of a cancer diagnosis? Um, do you have, Other kinds of privilege, racial privilege, you know, if you have socioeconomic privilege, do you have, do you have other privileges that are all these social factors that often combined to create better outcomes for some people and decidedly worse outcomes for, for people who are left wanting on one or many of those categories.

And those are, those are often called the social determinants of health and the social determinants of health factor in. in any, any health crisis or in any healthcare decision process, frankly, but they also play a huge role in cancer.

[00:19:42] Eugenio Sobrevilla: That was actually a question I was going to ask you. Could you dive a little bit more into that?

Are those social determinants of health being weighed more into cancer decisions? funding policy. Yes.

[00:19:55] Stephanie Osbakken: I mean, I think that the social determinants of health are, you know, they are primary for people who are really studying health policy for people who are looking at the social impacts of disease. We see how important they are, you know, how seriously they’re taken is unfortunately also mediated by social experiences and social, social contexts.

And so I think some places within the state of Texas, Take that more seriously than others and some states take that more seriously than others. Right. And so, you know, when we think about people who have access to private employer based insurance or commercial insurance, they are much more likely to have a, you know, a favorable experience with a cancer diagnosis.

Now, if there’s a cancer diagnosis. Great. No, it’s not great for anyone, but if you do have the misfortune of being diagnosed with cancer, you really want to be able to have access to the best doctors. You want to be able to have access to timely care diagnosis and the faster you get a diagnosis and get into treatment with a cancer.

you know, with cancer, the better your prospects, right? The better your prognosis, your long term prognosis. And so a lot of folks, especially those who do not have resources or do not have insurance that is responsive and comprehensive, wait and they wait and they wait and they might eventually get care.

But it’s it might not be high quality care, and it might not be easy to access that care. And it’s most certainly going to be delayed compared to people who have really good care. Geographic isolation is also a huge component when we think about the social determinants of health. People who live in rural areas or in other ways, geographically isolated from quality providers, do far, far less well on every, on every outcome related to health.

It’s not just cancer, but cancer certainly included. So thinking about social factors, uh, and, and how they really, you know, shape our experiences, you know, fully in terms of even our education and the kinds of jobs that we’re able to get. And those jobs are either coming with good insurance or they’re not right and every everything along the way.

So it’s not just where you are at a moment in time when you have a cancer diagnosis, for example. But it’s. Everything, all the social factors that really brought you to who you are at that moment. And, and that’s, that’s how we can really, I think, honestly reflect on the, how social factors shape cancer and cancer outcomes.

[00:22:25] Eugenio Sobrevilla: So in, in your work, would you be able to pinpoint a specific factor that’s weighted more or a set of factors? Which of those do you feel. If anything, should be one of the main takeaways that students should get from our conversation.

[00:22:28] Stephanie Osbakken:  Yeah, that’s a great question. I think that socioeconomic status, so your, and that entails, um, your income, your education.

Uh, it entails, you know, so what kinds of jobs you have, what kinds of occupations are you in, are you, Are you, um, exposed perhaps to cancer risk when you’re on the job, right? A lot of people who are working in, um, you know, different industries are much more likely to be exposed to toxic chemicals in their environment or exposed in the case of agricultural workers to pesticides and, and other, other sort of, you know, chronic toxic exposures really increase your risk in and of itself.

Um, and people who are taking those jobs are often less. Empowered to begin with, right? So they’re already vulnerable. They’re already sort of financially maybe needing to take that job. They might not have education. They’re geographically isolated. There’s all sorts of a confluence of social factors that put them in in those spaces where they might be.

even exposed to greater risks, right? Um, and greater demands on the job. I think that race ethnicity is a huge, huge factor.

[00:23:46] Eugenio Sobrevilla: As Dr. Alsbachen mentioned race and cancer, it is important to keep in mind these stats from the CDC. The CDC found the mortality rates for cancer has declined across all racial and ethnic groups with the largest decrease being seen in the most black people.

However, black people themselves have continued to have the highest cancer mortality rate as of 2018 and further research shows that overall rates of cancer screening is lower among black Hispanic and Asian groups, and with those same groups also receiving later stage diagnosis of cancer when compared to their white counterparts.

[00:24:17] Stephanie Osbakken: It very much, um, is correlated with, with SES and, you know, in our, in our country. So people who are of low socioeconomic status are more likely to be people of color and communities of color. And so you start to see how those factors. that are related to race, you know, sociologists and other social scientists will separate out race or ethnicity from socioeconomic status in their models to see what part of it is because we are maybe living in poverty or, or we’re under resourced.

And then what part of these poor outcomes that these communities experience are because they maybe are, they’re affected by racism and, and they’re. Job prospects in their communities, maybe even in with their medical providers, right? And in health care situations, we know that it’s not uncommon for people of color communities of color to have different experiences with providers, health care providers throughout their lifetimes.

And that creates a gap and trust. It creates a gap and sort of thinking that you’re supported and someone’s really got your best interests at heart. And so those two factors, I think, really explain that. A large, a large portion of what we call health disparities, these differences, not based on random factors, but are sort of patterned, systematic differences in outcomes between different populations.

If you have questions for us or an idea about a future episode, please email us at Livestrong Cancer Institutes at del Med dot u texas.edu. To find out more about the Livestrong Cancer Institutes, please visit dell med dot u texas.edu. Please also follow our department chair, Dr. Gail Eckhart on Twitter at SS Gail Eckhart.

Eckhart is spelled E C K H A R D T. This is Kristen Wynn with the Livestrong Cancer Institute and Cancer Uncovered, an education and empowerment podcast challenging you to keep asking questions and stay curious. Thank you for listening and learning with us. We’ll see you next month.