The Best Ways to Dispel Patients' 'Cancer Myths' in Clinical Practice

H. Jack West, MD; Sumanta Pal, MD; Timothy Gilligan, MD


June 22, 2018

H. Jack West, MD: Hello. I'm Jack West, medical director of the thoracic oncology program at Swedish Cancer Institute in Seattle. Welcome to Medscape Oncology Insights. Joining me today are Dr Sumanta Kumar Pal, co-director of the kidney cancer program at City of Hope; and Dr Timothy Gilligan, vice chair for education and associate professor at the Cleveland Clinic Taussig Cancer Institute. Thanks so much for joining us.

Over the past decade or so, we've seen a lot of change in how doctors and patients interact, as the role of the online community has grown and become a third party in the exam room with the doctor and patient.[1,2,3] There are many good aspects to this, but many doctors are also wary and have concerns about trying to disabuse people of potential misinformation that is now easily, virally shared in the same way as high-quality information.[2] Can I get your thoughts on this? How much of a concern is this for you?

Sumanta Pal, MD: It certainly has come up in my practice. One of the most frequent concerns is the exceptional responder.[4,5] When we think about exceptional responders, we think of it in the context of precision medicines, such as somebody who has responded great to an ALK inhibitor or a ROS1 inhibitor. In patient communities, however, an exceptional responder constitutes someone who has had a great response to chemotherapy or a great response to really any drug, for that matter, and that experience is often propagated as an n of 1 across entire patient communities.[4,5,6,7,8] I spend a [fair] amount of time [tackling this issue]. I'd be interested in your suggestions on dispelling the notion that these n-of-1 cases are not necessarily applicable to the scenarios of my patients in clinical practice. Occasionally, [the online information that patients bring is] very helpful, but sometimes it contradicts what our standard therapies would recommend.

West: The biggest challenge that I see is understanding the level of scientific information, understanding the difference between preclinical data and clinical data.[9] Another challenge we face is the mass-media presentation of a concept, something being sensationalized far too prematurely.[7,10] There has been work looking at how frequently "miracle cure" or "breakthrough" is used [in reporting].[11,12] Often, a ["breakthrough"] is predicated on very little actual clinical information, and so it's difficult for us and various other doctors out in the clinic to have to be the wet blanket all the time,[13] having to say, "I realize that CAR-T is exciting, but that is not relevant right now for this clinical situation."[14] Tim, do you have any other thoughts on the challenges that you and other clinicians face with overexuberance of the patients?

People don't always understand that just because a drug works in a petri dish, it doesn't mean that it's going to work in a person.

Timothy Gilligan, MD: I agree with you that people don't always understand that just because a drug works in a petri dish, it doesn't mean that it's going to work in a person; or if it works in a mouse, it's going to work in a person; or if it works in breast cancer, that doesn't mean it's going to work in prostate cancer.[14,15] I spend time explaining that "Yes, this might be an exciting idea, but we have a long track record of exciting ideas that turned out not to work" and orienting [patients]. I view it as sort of an educational responsibility.

I try to be careful to ensure that I'm treating each patient with respect. They're scared; they have a serious illness. They are working hard to make sure they get the best possible care, and sometimes they bring me something that is useful. It is hard because it's time-consuming; I suspect that this is the big stressor [for most]. You have a busy clinic and a lot of patients to see, and a patient comes in with this article they've printed out that you haven't seen before. Do you have time in your day to read it, and how do you balance that with treating the patient with respect and making them feel like you took them seriously? A willingness to learn goes a long way. There's a part of us that wants to tell patients, 'I went to medical school; you should be listening to me,' and that message does not go over well at all, so we have to resist that.

West: That's a real issue—the patient who comes in with a ream of paper that they've printed out, or the well-meaning friend-of-a-friend or distant relative who sends emails about everything they see or hear, and it is often not very relevant. Now, in between, we've really lowered the barriers to communication with the ability to email or to send a MyChart message through the EMR.[16] It's not just limited to the patient coming in during clinic; people will send whatever messages at whatever time and expect to get a quick response back. That's a real challenge.

Gilligan: My experience is, most of the time, that if I listen and I treat patients with respect, and then I say, "This is very exciting, but it's not applicable to your situation yet," most patients are actually kind of relieved, because they came in with a question. Do you find that you're getting a lot of pushback and arguing? I am curious about your experience.

Pal: I couldn't agree with you more. If you treat these queries with a certain level of respect and take time to show them the current evidence for the disease that they're faced with, often it offers a level of relief.[17,18]

West: I also think that part of the challenge is the level of evidence and the whole mindset. We are indoctrinated with an idea that we need to see compelling clinical evidence to move the needle and make a recommendation. Of course, there are entire other mindsets, essentially, just about everything in alternative complementary and alternative medicine—which is not without some value by other measures, perhaps, but it is not held to the same rigor in general as conventional allopathic medicine, and it enjoys huge interest.[19,20] It's a real challenge to have discussions when people are asking for vitamin C infusions and whether they can have a port for [something], or how to change their acid-base physiology because of something they've read online.[1] These are real challenges when you're trying to deal with this intelligently but not disrespectfully. I don't have an easy answer as to how to do that. It would be nice for us to develop tools on how to educate patients about how we're coming at this from a different perspective, [help us] respect people's autonomy but, at the same time, explain why we don't, as a general rule, favor these approaches.

Gilligan: One thing I find helpful is to think about two different domains here. One is the relationship domain: What kind of connection do I have with the patient, and how do they experience the way I treat them? The other is this factual domain: What do we know about the science? As clinicians, we get drawn into that scientific domain, and we'll debate facts and we'll debate data. It's helpful to remember that this is someone with a serious illness; they're scared and they don't see a lot of options. If they feel like, again, I'm treating them with respect, that I care about them, that I'm going to do whatever I can to help them, then they're going to receive the message about the science much better.[17,18,21] If I turn [the conversation] into a debate, I have more scientific knowledge and it can feel like I'm overpowering them. They resist that. Paying attention to communication is really important in these cases.

West: I try to convey that everyone has biases. Mine is that I come from a tradition of conventional, evidence-based medicine; not everyone subscribes to that, and you have a right to decide whatever you want as an informed consumer. My job is to ensure that you are as informed as I can make you. If you make a different value judgment, that's not necessarily wrong. I try to take a step back and say, "My job is to give you the best information possible and then enable you to make a decision." It is difficult, because we feel that we have the best evidence, but not everyone is going to be that swayed by it. Monty, any other thoughts?

Pal: No. Again, Tim is on the same page with me. One of the things that it boils down to as well, when we're talking about alternative medicine strategies, is the nuts and bolts of oncology. We go through such rigorous efforts in clinical trials to establish whether drugs can be delivered at a certain pH level, etc.; the thought that taking alkaline water could potentially be risky.[22] It's part of our job to alert patients that while there may be a role for alternative medicine, doing the two simultaneously—alternative and conventional medicine—in some cases has the potential to elicit harm.[23,24]

West: Whether it's high-dose vitamins or another type of complementary medicine, if it can have an anti-cancer effect, it can also have a detrimental effect.[25] There's plenty of precedent for that. We've been wrong with various hypotheses tested against placebo, and have been chastened by that. It reminds us why we need to do clinical trials. At the same time, we need to remind our patients that high doses of vitamins, just because they are available commercially, doesn't mean that they are good, even if it's so-called immune-boosting, because everything can be called that with loose-enough standards.[25]

Monty and Tim, thank you so much for joining me. This has been a great discussion. Thank you, the audience, as well for joining me. This is Jack West for Medscape Oncology.


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