What Does a Cancer Diagnosis Mean? Public Expectations in a Shifting Therapeutic Environment

Dr. Pennell and co-authors Drs. Abel and Frosch discuss their editorial on public expectations in a shifting therapeutic environment.

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Hello, and welcome back to the ASCO Journal of Oncology Practice podcast. This is Dr. Nate Pennell, medical oncologist at the Cleveland Clinic and consultant editor for the JOP. What do most people think today when they think about a cancer diagnosis, about cancer's prognosis and treatment? Even if they've never had cancer themselves, most people either know someone who has had cancer, or they've been exposed to stories about cancer through the media. How do patient's preconceived notions about cancer impact their understanding of their own cancer diagnosis and their willingness to get treatment?

Joining me today to talk about this topic are Doctors Zach Frosch, Instructor in Medicine at Harvard Medical School and an Oncology Hospitalist at the Dana-Farber Cancer Institute and Brigham and Women's Hospital, and Dr. Greg Abel, Associate Professor of Medicine and Director of the Older Adult Hematologic Malignancy Program at the Dana-Farber Cancer Institute. We're going to be discussing their paper titled "What does a cancer diagnosis mean-- public expectations in a shifting therapeutic environment."

Doctors Frosch and Abel, thanks so much for joining me today.

Absolutely.

Nice to be here.

So given that oncology seems to be having a little bit of a renaissance in the media these days, with popular books such as Emperor of all Maladies and When Breath Becomes Air, this is a very timely topic to put this paper out here. How did you come up with this idea?

So Dr. Frosch and I were working on a survey where we're aiming to understand what the public knows about drug shortages in oncology, and we thought that a good question to have as a covariant for that survey was what the public thinks about cancer, in general, because we thought it would affect their answers to questions about drug shortages and what they would want to know and what they do know.

And when we ended up getting the results from the survey, we started to think about the question about how was cancer perceived, and we realized that it really is an important question in its own right. I'm have a lot more experience at this point than Dr. Frosch does, who's starting out his oncology career, but from both viewpoints it's interesting to think about what patients perceive, or potential patients perceive, about cancer can affect the interactions with oncologists and the interactions with the medical system.

I think that makes perfect sense. When I read this, it really resonated with me, although I don't often think about this when I'm starting to talk to a newly diagnosed patient, but maybe I should. Can you guys give me some example of how patient's perception about cancer before their diagnosis might impact their decisions on how to approach their own diagnosis and treatment?

Absolutely. And so you mentioned even before diagnosis, and I think it's important to think about how it starts even before a patient knows they have cancer, potentially even before they suspect that they have cancer. Because when people are worried about a cancer diagnosis, we know that they can potentially avoid physician visits or screening procedures that might make an early diagnosis when they're still asymptomatic. Or even when they have symptoms themselves, is their worry going to make them avoid going to see the doctor to get the diagnosis? And then even once the diagnosis itself has been made, if they have an unrealistically negative impression of what a cancer diagnosis means, if they believe it to be rapidly fatal no matter what they do, then they may defer potentially beneficial treatment.

And so it's really important to understand what they know and what they think they know about a cancer diagnosis. Actually interestingly, conversely, if they have an unrealistically positive impression of what can come out of cancer treatment, then they may make unrealistically aggressive decisions about their cancer care as well. I'm sure you and many of the listeners are aware of Dr. Week's paper on advanced GI and lung cancer from a number of years ago about patients who thought that their metastatic cancer was terrible, and so how was that, then, impacted. So it's really key to understand what patient's past experiences and what they believe their cancer diagnosis or potential cancer diagnosis could mean.

And something that actually just occurred to me when I was thinking about this is perhaps not even just the patient's perception, but even other physician's who aren't oncologists perceptions about cancer. I specialize in lung cancer, and it is not uncommon for me to see patients who are informed by the doctor in the emergency room or their primary care doctor that they needed to start getting their affairs in order, that they needed to start thinking about hospice. And we've got a lot to offer these patients today.

I think that's a very good point. Definitely, a lot of primary care doctors and other physicians who are not tied into oncology often have different perspective. And I think another perspective that's important to keep in mind is family members. Often, the perspectives are really colored by what other cancers they've been exposed to.

So I treat a lot of patients with myelodysplastic syndrome, which is a chronic cancer that people live with for a long time. But they're seen at a cancer center, and many patients will think it's like the pancreatic cancer that their brother had, and that's their exposure. So sometimes the family members and what cancers they've personally been exposed to, so I think both of those things come into play.

So, of course, we have patient's personal experience in their families, but what are your thoughts on how the media handles the perception of cancer and how that influences? There's certainly a lot out there about it, but is it really helpful to patients when they are learning about their own diagnosis?

Well, as Dr. Frosch mentioned, I think there's often unrealistically positive expectation, and that can be a problem, because sometimes those expectations won't or can't be met. Often, when media portrays or talks about certain treatments, they are discussed in ways that aren't clear, that they're only OK or worthwhile for certain subsets of patients. And so I think it's difficult sometimes for people to understand that that treatment may not apply to them, and it can lead to disappointments in therapy when patients aren't able to get that. They also may think they're eligible for things that they can't have.

And I think it's important we also talk about the media, just divided into direct-to-consumer advertising and marketing, and then, also, journalism. So I think that some of the journalism that we've seen has been better in terms of presenting a balanced story and changing some of the metaphors we use. We notice even with the recent Cancer Moonshot that we talk about as a moonshot rather than a war on cancer and some of those things. But on the other hand, a lot of the advertising we see for different medications in cancer can sometimes be subtly manipulative in ways that can affect patient's perception.

You mentioned the war on cancer, and that's something that comes up a lot in the popular media, as opposed to more journalism. But do you think this is a helpful metaphor? Or is this something that perhaps we'd be better off without?

I think that it can help people understand their cancer diagnosis and their treatment, and it may work for some people. But I think it has a lot of negative consequences in terms of when patients feel that they're giving up and losing the war at the end of life, when really we have a lot to offer patients in terms of hospice and end-of-life treatment. And again, it loops into that unrealistically positive expectation that maybe they're going to pursue more aggressive therapy because that is the metaphor that they should fight to the end.

So more recently, journey metaphors have become increasingly common, and we mention this in the article. And I think that may be a more helpful metaphor for some patients who then when it comes time that there's no more therapy to be offered, as Dr. Abel mentioned not everyone is going to be eligible or benefit from every therapy, they may not feel like they're losing the war. They feel like they're reaching the end of the journey, which, for many patients, may be a more palatable metaphor to use.

Yeah, it's not a simple concept. You could certainly see why people may approach this as a fight, but it definitely has consequences, as you mentioned. So I'm curious, can you talk a little bit more about the survey that you did? What are Americans' perceptions about cancer? Is there actual much data out there about that? And how has that changed over time?

Absolutely. So back in 2007 was the last time that we're aware that this question was asked. And in a national sample, they asked people whether they agreed with, quote, "when I think of cancer, I think of death." And the majority of the population did at that time. They really had that strong association.

And of course, since then a lot's changed. There's been a lot of new drugs and a lot of new advances. And so nearly 10 years later, we asked a similar but slightly different question. We asked people who've had different exposure to cancer and cancer treatment, some may have had the personal experience of cancer and others may have had exposure through family, friends, and the media, based on your experience, with which of the following statements do you most agree, and we gave them three options.

We said most of the time cancer is curable. Most of the time cancer is a chronic disease like diabetes, which can be managed. Or most of the time cancer is a rapidly terminal disease. And we had a different split than they did 10 years ago. Fewer than 50% of our respondents felt like cancer was a rapidly terminal disease, and many people actually felt like it was a chronic disease which can be managed.

And I think that is increasingly what we're seeing with new treatments. It's something that can be kept under control, even if it can't be cured, and that many people can live with cancer. And that rather than having it this binary split as something that is either curable or rapidly fatal, there's this growing middle category that we've seen.

I actually love that particular analogy, and I use it a lot when I talk to my own patients about living with cancer, even if it's incurable. And so I'm glad to see that there's evidence that that message is getting out to patients. So what can we as oncologists and as oncologists in training do to better understand our patient's conceptions of cancer? And how should we or could we help shape those perceptions in a better way?

So as we mentioned, everyone has had different exposures and experiences, so it's actually very hard to predict what somebody is going to walk into your office with, what their past experiences are going to have been. We really feel that the key is to ask them, understand what their past experience has been, and really ask them what do they think a cancer diagnosis means. And they'll tell us, and that will allow us to better engage with them, provide better counseling that really meets them where they are, and allow them to have a more realistic perspective of what they can hope for and what they might truly need to worry about.

That sounds like that would be helpful later on when you are having difficult conversations, help you to understand what the patient's perception is. Because if you don't take the time to know what they're thinking, they may be thinking something, as we discussed earlier, that their cancer's curable when, in fact, it's not, or they have expectations that are unrealistic, and you didn't even really realize that. So do you have any take-home messages from our talk today and from your editorial?

I just wanted to say that we're very thankful for the Journal of Oncology Practice for publishing this work. This is a hard topic to address with rigor. We did do a survey. One of the things that I was thinking about, as Dr. Frosch was reading the question, is that we had spent a lot of time with these questions and making sure that potential respondents understood-- it's called cognitive debriefing with survey work-- what we were really getting at. When we asked them about most of the time what do they think, we really asked them a general question about their perception of cancer, not the cancers that they know about through their own experience.

So this kind of work is hard to do, and I think the message here is that perceptions of cancer seem to be changing. One of things that we didn't really speak about yet in this podcast is the idea that if potential patients are now believing that cancer is not rapidly fatal, or the majority don't believe that, that should help people get to treatment.

I think there's still a lot of people who ignore signs and symptoms because they're very nervous that it means that death is around the corner, whereas maybe we're getting more a positive part of this, that there's been more messages in the media that cancer can be managed. So even if you do have a sign or a symptom that you think is related to cancer, it's not necessarily meaning the end of your life is happening. So I think that's a positive piece of this, and we're just very thankful of that JOP was interested in this work and to share it with others.

Doctors Frosch and Abel, thank you so much for talking with me today.

It was my pleasure.

Thank you.

And I also want to thank our listeners out there who joined us for this podcast. The full text of this paper is available at ASCOpubs.org/journal/jop. This is Dr. Nate Pennell for the Journal of Oncology Practice signing off.