What happens if a breast cancer patient refuses treatment?

Below is a lightly edited, AI-generated transcript of the “First Opinion Podcast” episode with Joy Lisi Rankin and Samyukta Mullangi about decision-making around breast cancer treatment. Be sure to sign up for the weekly “First Opinion Podcast” on Apple Podcasts, Spotify, or wherever you get your podcasts. Get alerts about each new episode by signing up for the “First Opinion Podcast” newsletter. And don’t forget to sign up for the First Opinion newsletter, delivered every Sunday.

Torie Bosch: What do you do if a loved one refuses treatment for cancer? Or what if you’re an oncologist whose patient doesn’t want to be treated?

Welcome to the “First Opinion Podcast.” I’m Torie Bosch, editor of First Opinion. First Opinion is STAT’s home for big, bold ideas from health care providers, researchers, patients, and others who have something to say about medicine’s most important and interesting topics.

Today, I’m speaking with Samyukta Mullangi, an oncologist and senior medical director at Thyme Care, and Joy Lisi Rankin, a historian, author of “A People’s History of Computing in the United States,” and a breast cancer survivor. We discussed the very personal decisions that come with breast cancer and how patients and oncologists can better work together.

Joy, I’d like to start with you. You recently wrote a really powerful essay for STAT about your mother, Carol, and her experience with breast cancer and your own experience. Before we get into that, can you tell me a little bit about Carol as a person?

Rankin: My mom as a person was warm and creative, loving, a great mom. She loved writing, encouraged that in me and my younger brother. She was kind and warm. I miss her.

Bosch: Tell me a little bit about her diagnosis with breast cancer. How old was she? Had she seemed ill? Were you surprised?

Rankin: So this is a great question because it gets at the heart of something that I struggled with, which is I don’t know how old she was when she was diagnosed. I know how old she was when she shared her diagnosis with our family, which was in 2002. So she would have been in her mid- to late 50s at that point.

However, our family later found out that she quite likely had learned about her diagnosis at some earlier point by months or years, but hadn’t shared it. But when she did share it with us, at that point, my brother and I both sort of stepped in to say, “Can we come to appointments with you? How can we support you? How would you like to proceed?” And that began my experience with the remaining five years or so of her life.

Bosch: What happened after she was diagnosed or after she told you that she had been diagnosed?

Rankin: She went to several different health care providers. Her primary care doctor, I think, but also most likely a surgeon, oncologist, radiologist. I’m not sure of the combination. I know she also sought second opinions as well. So probably multiples of those providers.

But she was very reluctant to receive treatment. And my memory of that experience with her is that most of the doctors at this time — and this is again, the early 2000s — it didn’t feel like a conversation. It felt like, “We’re telling you what to do as a patient and either do what we tell you to do, or there aren’t other options.” And she decided circa 2002, 2003 that she didn’t want to pursue treatment. Again, she was very private about her health. So I don’t know why. I disagreed with her, but also felt like it was her decision to make and I should support her. And that was it.

Bosch: Had she been sort of anti-medicine or anything like that growing up?

Rankin: No, I mean, it was a surprise to me. Sort of both the diagnosis and her decision, because certainly she had taken my brother and me to the pediatrician growing up. We received vaccines and antibiotics, sort of all of the things. I don’t know about her own. I mean, she really was very private about her health. So I don’t know much about her history. She had mentioned that she had had a few previous breast cancer scares and not great experiences with those.

Bosch: Sam, I want to bring you in here. So as an oncologist, how do you feel when you hear Carol’s experience? What does that bring up for you?

Mullangi: You know, when I think of patients who refuse treatment, I don’t automatically assume they’re uninformed. I kind of assume that they’re just informed by different facts. Maybe I’m talking about it in the language of life extension, overall survival, and those sorts of things. And they’re responding to things like the fear of side effects, the frustrations that they’ve had previously with a very fragmented health system. In my practice in Nashville, a large part of it comes around lack of insurance clarity, concerns about what they’re going to pay out of pocket, difficulty navigating appointments. I’m a medical oncologist in the sense that I’m doing the drug therapy portion of things. I work in tandem with a surgical oncologist, with a radiation oncologist, etc. But sometimes even for patients who don’t need systemic drug therapy, I still see them at regular intervals to just navigate them through the system because no one else is quarterbacking it and I have to.

But I do think that while there are so many heterogeneous reasons why patients can come to the same decision, I think that increasingly, and in the last two years, there has just been an exponential rise in the number of patients who come with all sorts of wrong information about what it means to have a cancer diagnosis. What led them to this point? What does treatment mean?

And it’s just rooted in a much more adversarial stance around like, “What are you recommending to me? What are your conflicts of interest? What are you financially incentivized to provide for me? What is big pharma either providing or withholding?” And I think that in any given week it went from, this is sort of a rare conversation to have with a patient to nearly every single day having a conversation with multiple patients even about some element of what they’re taking or refusing to take or whatever that is just rooted in mistrust.

I mean, it certainly is a phenomenon that people should address more often because it’s certainly causing a ton of physician burnout. To have their credentials and their experience and their whole, you know, reason for being kind of questioned in that way. So yeah, I mean, it’s a complicated problem and obviously patients are very different from one another but this is certainly something that I think I wanted to call out in that essay.

Bosch: Yeah, so I’m glad you mentioned that. You recently wrote an essay about MTV VJ Ananda Lewis who I, as an elder millennial, I think they’re called, remember just really admiring as a teenager. She had this sort of like effortlessly cool, warm kind of mother earth hippie vibe. And she recently died from breast cancer at the age of 52 and you wrote about that when it happened. So what happened to her and what made you decide to write about it for STAT?

Mullangi: Ananda Lewis was an MTV VJ, media personality, you know, and I think had a family history of breast cancer. In 2020 she shared that she had actually refused mammograms for years out of fear of sort of the low-dose radiation associated with the test. And I will say one thing that I’ll highlight there is that we used to recommend mammogram for patients starting at the age of 50. But increasingly younger and younger patients are presenting with these cancers often enough that that was revised down to age 40. And so already I think like we’re talking about, you know, her mistrust of mammograms occurring in this macro environment of younger people getting cancers that are very eminently treatable.

And then when she was diagnosed it was already advanced to a Stage 3, which means that it was a combination of the size of her primary tumor mass and lymph node involvement. In general patients who have Stage 3 cancer, it’s still early — Stage 1, 2, and 3 are still early-stage — and our goals for therapy are curative — my hope is that, you know, the treatments that I provide in combination with my colleagues will restore her to the path that she was in before she was diagnosed in terms of hopefully her life expectancy, etc.

But then she turned down standard treatments, including surgery and chemotherapy, and she was treated at an alternative clinic in Arizona with a combination of natural therapies and low dose chemo and passed away at the age of 52.

And I can’t say that I know, you know, all of the details of her unique cancer diagnosis kind of what her prognosis had been even with the best standard of care therapy, but I can intuit from this that she wasn’t able to give herself that best chance and that more likely than not her life expectancy was compromised because of these treatment choices that were made.

I also think that it’s just, you know, symptomatic of what I had said about more and more patients kind of like choosing against standard of care therapies and they’re no walk in the park, I will give you that, but especially for an early stage cancer with a curative intent like that to me and it constructs me as like truly a tragedy.

Bosch: Yeah, you wrote, and I thought this was just really well put, that you’re “increasingly seeing patients reject evidence-based care for holistic or alternative paths that promise healing without hardship. Often they’re driven not by ignorance, but by fear, confusion, and a deep sense that no one in the system is really looking out for them.”

Joy, you were the one who pointed out to me that your essay and Sam’s were really in dialogue in some ways, was it that part that made you connect?

Rankin: What you just read, Torie, is what I double highlighted and underscored and really resonated. I mean, I saw many themes overlapping between our essays, but Sam’s articulation of patients driven by fear, confusion, or a sense that no one in the system was looking out for them, I think really was my mother’s experience. People have asked me, “Why do you think she made the choices that she did?” And I think at the heart of it was fear, trust or lack thereof, and then communication.

I mean, these very brief meetings with people who — later on in your essay, Sam, I love it when you say patients need someone to sit beside them, not above them, because my mom’s experience, and certainly mine with her, was doctors who were very much sitting above her rather than sort of trying to understand, help her understand sort of what might make a difference, what might prolong her life, what might seem like if she was afraid of chemo or afraid of radiation, might surgery alone be something that could increase her life expectancy, for example.

Mullangi: And I will say that at least where I practice, and maybe this isn’t reflected everywhere, we do kind of try to meet patients where they’re at because I think maybe practice culture matters, but also the population that you see day in and day out influences the way that you bring yourself to the table. But I think we have the ability to be modular in our approach. Okay, so somebody doesn’t want the full gamut. What are they willing to do? And can we talk about sort of the pros and cons? And I sometimes, you know, when I hear about stories like Carol, I kind of think to myself, “Is my practice pattern unique?” Maybe it is. And that’s also kind of an upsetting thing to learn about sort the medical system at large, because you would wish that everybody was modular in that way.

Rankin: And I think to me, this raises another point about timing, which of course, like putting on my professional historian hat, I was looking back researching when medical schools in the United States really started focusing on communication as an essential part of medical education. And I was really not until the ’90s. So I feel like, right, and now that’s changed over time. So hopefully we have more doctors who are better active listeners and better at sort of responding to patient concerns.

But I also suspect that my mom was seeing and being treated by a generation of doctors who hadn’t had that approach to practicing medicine. But Sam, I will say from what you’re describing and from other breast cancer survivors I know, it sounds like your practice is not the norm. And I wish it was.

Bosch: Because Joy, you have the perspective, not only from having stood beside your mother during her experience, but you also had breast cancer yourself. So I suppose two questions here. The first is: How did you talk to your doctors or perhaps more importantly here, how did your doctors talk to you about your mother? And did you feel that you had a quarterback, as Sam put it, during your experience?

Rankin: So I will separate a little bit and say that in general my oncology team, so surgeon, radiologist, oncologist, were amazing. However, prior to that diagnosis, of course I often had many encounters with medical professionals. And I talk a little about this in my essay. Whenever we went through my health history, and of course it was immediately obvious my mom had died of breast cancer and inevitably someone would ask, “Well, was she post-menopausal?” or “How was her treatment?” And I would simply say she refused treatment. And immediately the conversation and that interaction often took a turn to, I felt like I was being questioned in my intelligence, Carol was being questioned in her intelligence for that choice, or that I had to defend that choice. And it was an uncomfortable situation. It made me feel less trust for the person with whom I was interacting.

Honestly, after my diagnosis, I sort of felt like I had to put my shields up and armor to prepare to go into a world of where I knew I wanted to get treated. I wanted to do what I needed to do to have as much life as I could, but that I expected resistance because of my mom’s history and what she had and hadn’t done. And so it was really a gift. And I mentioned this in my essay as well. When my surgeon, upon hearing that my mom had refused treatment, said, “That was her choice to make. And a lot of women make that choice.” That moment and reflecting on it, I think, really gave me the time and space to sort of look back at my experience with my mom’s dying years and say, “Oh. This could have been different.” Even if she had continued to refuse treatment, she could have had a provider who might have said, “Okay, this is likely what’s going to happen to your body. And also what kind of death do you want?” Which no one asked. And it’s a hard question. I get it. I understand, but it’s an important one.

Mullangi: I think, Joy, there were two things that came to mind as you were sort of saying that. One is that physicians have to find for themselves the right balance between investment, an emotional investment that they’re making in their patients. And sometimes a lot of things can just trigger this sense of relatability. I’m a young person. If I see another young patient with cancer, there’s this automatic sense of, “Oh my gosh, I know what it means to be a young mother. And I want you to get through this.” And there’s this emotional investment that you make in someone.

And then there’s also a sense of detachment that you have to exercise both to preserve your own sanity, but also because ultimately this isn’t your journey. This is your patient’s journey. And you have to respect that. And I think that there is potentially a lot of, this is the art of medicine where you have to kind of find the right balance between those two things. You know, you can’t be fully invested because again, that would be so disrespectful to your patients who are actually on the receiving end of a diagnosis and treatment. And you also can’t be too detached because then that’s so unemotional and so cold.

And then the other thing that I wanted to say too is what you brought up in your essay around kind of the dichotomy that our insurance system also sets up between curative, like being in care versus being in palliative or hospice care and like. So much of the way in which I think we’re delivering care is not how a physician would design it if left to their own devices, but rather a complete artifact of how the system is set up, you know, from a payment perspective. And I think that is also something that, you know, there’ve been models like experimental models from CMMI and from the VA administration to try and create middle ground models of care, but they haven’t taken off. And I that’s also a bit of a tragedy.

Bosch: Sam, earlier you had talked about how you’re seeing patients who are sometimes adversarial, you know, questioning your motives or the motives of other people being treated, or you’re seeing people who want to decline treatment out of fear about financial cost. Joy, it seems to me like Carol was not misinformed about things. She made sort of a decision for herself that she didn’t want to undergo treatment because that was her prerogative, you know. Sam, can you talk a little bit about how you respond to the different ways that a patient might say, “No, I don’t want this”? You know, do you have different approaches depending on their motivation?

Mullangi: Yeah, I mean, I definitely do. I mean so much of it isn’t, they’re not adversarial because they fundamentally think I’m in it for the wrong reasons, but it could just be a mistrust. The Covid vaccine is the perfect example, right? Everybody wants all these drugs with all their toxicities, but they draw the line of the Covid-19 vaccine. And, you know, this was a conversation that I had way more in like 2020, 2021, 2022, when the virus was also more virulent. I’d be like, “I’m getting you through this cancer episode, the last thing I want is for you to then get Covid and have a complete decline because that would just be so not honoring this journey that you’ve been on.”

But now increasingly, I feel like the vast majority of my patients don’t elect for the vaccine. And like I have run out of the energy to push them on it, because now new things have taken its place. Like everyone is on ivermectin and fenbendazole. Everybody, I have like several patients who are young, young in their late 30s or 40s who are declining medical treatment for their breast cancer because they would like to try a raw food diet.

To be honest, I feel like I am refining my script all the time. I’m not saying that I have the right answer and so much of it dictates to how much time I have or how many conversations have I already had about this. Right now with a lot of things, I try to sort of say, this could be in addition to what I’m doing. Like you can do the ivermectin, tell me about it of course, but don’t decline chemotherapy because you want to just rely on that. You know, do the dietary things, but don’t decline chemo. Sometimes folks kind of ask us about, you know, the motives of big pharma and like, “Why are the drugs so expensive?” And we’re just pushing these expensive therapies on them. And it’s for like some kind of monetary gain. And you know, I have colleagues who have tried a version of this argument with some success to say, “You know, ivermectin has a manufacturer as well.” Like, nothing here is free. And you know you want to do good. And I think people are suspicious when you do financially well as a result of it. I went to business school — there was always a current of like, “You can do good and you should do well because of it like those two things should be in synergy.”

But the idea of medicine being a business or you know, at the end of the day people are making money on these therapies. Sometimes, I don’t know, it seems like it’s a little bit difficult to square with I think the fact that, you know, from a patient perspective it’s a life-altering thing. And to think that people are attributing financial motives to it is, I don’t know. I don’t know that I have the answer to it but I think that’s definitely what I’m seeing.

Bosch: Yeah, it really strikes me listening to both of you just how emotionally exhausting this is on all sides of the equation. Joy, do you think that Carol would be surprised to see that from the outside someone might think that she was someone who turned down treatment because of misinformation or not knowing?

Rankin: So it’s hard for me to answer that question. What I will say is I think she would have been very disappointed in social media and all of its platforms as sort of massive ways to broadcast disinformation. Even, again, not knowing exactly why she made the choices that she did, I don’t have a sense that misinformation or disinformation was involved. And I think I mean, upon reflection, I think she might be surprised to feel that people sort of questioned her motives or choice. I mean, she encountered that when she was alive but I think it frustrated her as well because she was educated. She was well read. She was informed.

Sam, in your essay, I love this line: “We’re in the middle of a disinformation epidemic. These aren’t fringe beliefs anymore. They’re mainstream, algorithmically amplified, and emotionally persuasive.” And I saw that too as a connection with some of my past work in terms of researching artificial intelligence and algorithms more broadly and thinking about what responsible algorithmic work looks like. And it is certainly not how a lot of media platforms are approaching disinformation, where it is clear that someone is trying to profit by spreading misinformation deliberately. Yeah, so I think too, speaking systemically, this is another huge component that comes into play that we could advocate for but is a big ship to steer.

Bosch: Yeah, I think I asked that question really inarticulately but what I was sort of trying to get at is that it seems like right now so much of rejection of treatment is based on something that’s really deeply public facing, right? That’s so much about your connection to some sort of social identity. And Carol’s decision was so deeply personal rather than something to sort of be done on a platform. And so that to me feels so different from what a lot of Sam is seeing in the clinic today.

Rankin: Torie, you saying that just now, I mean, reminded me in terms of sort of how private she was when she died, when the obituary was published and when we sort of shared over email about her funeral. I mean our friends and family were shocked because she had not shared her choice with, I mean literally my brother, my dad, and I, my husband. Maybe two or three other people knew. So it was so private to her and it was absolutely the opposite of this sort of very public persona, performance, consumption that we’re seeing now.

Bosch: I could keep talking to both of you about this for another hour and a half or so, but I know you have other things to do. Before we wrap up though, I’d love to know, Sam, do you have any thoughts on going forward, how you’re approaching patient decisions, any ways to protect yourself from the way these decisions can be really exhausting for you?

Mullangi: Yeah, I mean I think what I’m most interested in is system level solutions to not just this sort of mistrust, et cetera, that we’ve talked about in this conversation, but just in general, how patients kind of move through medicine and ways in which the current system leaves so many gaps and so much reliance on a patient being able to advocate and navigate for themselves. I mean, it’s not just … obviously, you’re leading to poor patient outcomes. It’s like leading to a ton of second- and third-order effects around the cost of the system, the duplication of tests or, you know, like the long wait to visits, the missed visits because, you now, it’s just like hard to remember when you got a complex case and a million different visits added to your calendar. I work at a value-based care enablement company where we think about improving patient experiencing and lowering total cost of care as being a very synergistic goal because oftentimes you see that when you improve the patient journey by solving for a lot of this fragmentation, this issues around navigating a complex system, having that time and bandwidth to just have a conversation with patients about like, “Hey, a clinical trial does not mean you’re a guinea pig. It often means it’s an improvement on standard of care,” and having someone who can have that 30-minute conversation that an oncologist for sure will not find the time to have.

All of this will lead to improved experience but also reduced costs. And I think that’s how I feel about most things. You know, doing better should automatically create the economic possibilities around it. But yeah, I mean, I think the modern fee-for-service health care system where your visits are 15 to 30 minutes and you have a caseload of 20 to 30 patients to get through before you go home to your own family is just on an unsustainable trajectory. And the need is so high within oncology, we’re completely understaffed for our aging population. It’s fewer oncologists, more patients, and that automatically will mean an erosion of time that you have per patient.

Bosch: And I should note too that back in May 2023, you co-wrote a really fantastic First Opinion titled “Newly diagnosed cancer patients need help navigating the system.” So anyone who’s interested and more on the need for more navigators and quarterbacks should read that, and we’ll put that in the show notes as well. Joy, any final thoughts from you? Any final thoughts about Carol?

Rankin: I would second what Sam said about the current model of U.S. health care really being unsustainable. And I would add upon reflection thinking from a patient perspective or just a person perspective that I think part of this too, it’s not just on the physicians, it’s also on the individuals to maybe … I would love to see us start reframing health and health care more as an approach to holistic wellbeing rather than “you go to a doctor when something is wrong.” I just read about Alice Walton opened a new school of medicine with the idea of prioritizing preventative health and a whole patient approach to considering their socioeconomic health and their mental health. And I think that is absolutely a model I can get behind.

But again, this is big systemic reform to think about what insurance companies would need to do in health care practices and individuals as well as platforms to sort of see these changes over time.

Bosch: Well, Joy Lisi Rankin and Sam Mullangi, thank you so much for coming on the “First Opinion Podcast” today.

And thank you for listening to the “First Opinion Podcast.” It’s produced by Alissa Ambrose, and Rick Berke is the executive producer. And I would love to hear from you. So let me know which First Opinion contributors you’d like to hear on the show or what topics the podcast and column should take on. You can reach me at [email protected]. And if you have a minute, please leave a review or rating on whatever platform you use to get your podcasts. Until next time, I’m Torie Bosch, and please don’t keep your opinions to yourself.

Be sure to sign up for the weekly “First Opinion Podcast” on Apple Podcasts, Spotify, or wherever you get your podcasts. Get alerts about each new episode by signing up for the “First Opinion Podcast” newsletter. And don’t forget to sign up for the First Opinion newsletter, delivered every Sunday.