Advice for Patients and Physicians on Dealing with Rumors About Cancer

This article is based on the interview “The Best Ways to Address Patients’ Cancer Myths in Clinical Practice,” published on Medscape, one of the world’s leading online health platforms, on 22 June 2018.

Dr H. Jack West: Hello. I am Jack West, medical director of the lung cancer program at Swedish Cancer Institute in Seattle. Welcome to Medscape Oncology Insights. Today we have Dr. Sumanta Kumar Pal, director of the kidney cancer program at Hope of Hope, and Assistant Professor Timothy Gilligan from Cleveland Clinic Taussig Cancer Institute. Thank you for joining us. Over the past decade, doctor–patient communication has changed greatly. Most notably, online information has become a third party in their interaction. This worries doctors because potentially incorrect information may mix with medical knowledge carefully built over years. What are your thoughts? How concerning is this?

Dr Sumanta Pal: This is certainly prominent in my work. One confusing issue in cancer treatment is that some patients respond exceptionally well. I call them exceptional responders. For example, %3-4 of lung cancers respond very well to an ALK or ROS1 inhibitor, and these patients survive significantly longer than other lung cancer patients. This illustrates a relatively new concept, precision oncology . Patients with the same cancer having different responses can be confusing. Differences between people in immune system–tumor interactions contribute. I have spent considerable time on this. New precision oncology treatments have different effectiveness and side-effect profiles from conventional chemotherapy. Online information about them can be very useful, but can also be exaggerated or contradict reality.

West: The greatest challenge I see is explaining the difference between laboratory and clinical data, then simplifying science so nonprofessionals can understand it. Another challenge is media sensationalism around early research. We often see “miracle cure” or “major breakthrough.” Every scientific advance is valuable, but frequently using such exaggerations before they translate into clinical practice undermines trust in science. For example, I realize how exciting the living drug CAR-T cellular therapy is, but currently it is appropriate for very few patients in practice. Tim, what other major difficulties do you and other clinicians encounter with patients? A drug will not necessarily suit or work for every patient.

Dr. Timothy Gilligan: I agree. I always say that a drug will not work in everyone; a mouse study does not mean it works in humans, and a drug working in breast cancer does not mean it works in prostate cancer. It may be an exciting idea, but sometimes ideas mislead patients. Explaining this is a responsibility of patient education . I try to be very careful and respectful with every patient. They are fighting a serious disease and are frightened. They search for the best treatments they think might work, and sometimes bring a useful approach. But detailed explanation is difficult in terms of time management and becomes stressful. Sometimes patients bring printouts of articles I have not seen. There is no time to read them, and we must balance making them feel taken seriously with the treatment we provide. This is genuinely difficult. Some prefer to tell patients, “I went to medical school, and you should listen to what I say,” but that dialogue often does not work.

West: That really happens. Friends of friends may email patients many relevant or irrelevant sources, and patients print and bring them to us. Unfortunately, much is not acceptable information. Doctors are also much easier to reach online now. Our work is no longer limited to clinic visits; patients and relatives can message at any hour and expect a quick response. This is really difficult.

Gilligan: My experience generally is to listen to the patient, treat them and then say, “This is very exciting, but it is not yet appropriate for your situation.” Most patients feel somewhat relieved. Do you find yourselves rejecting things and arguing often? I am interested in your experience.

Pal: I completely agree. If you treat patients with respect and take time to show evidence relevant to their disease, it is generally reassuring.

West: I think part of the difficulty concerns evidence levels and general mindset. We discuss needing strong clinical evidence to accept a new treatment and recommend it. Of course, an intervention considered traditional, complementary or alternative medicine is not researched as rigorously as approved drugs or subjected to the same strict oversight as approved medical treatment. Yet traditional and complementary therapies attract great interest. People may research information online that is not reality-based and act on it. I have no answer for preventing this. Educating patients about a different perspective and helping them while respecting autonomy would be beneficial.

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Gilligan: I think it helps to consider two domains. One is the relationship: what bond do I have with the patient, and how do they experience my behavior? The other is factual: what do we know about the science? As clinicians, we discuss facts and data in that scientific domain. It helps to remember that patients have a serious disease, are frightened and see few options. If they feel I treat them respectfully, value them and do everything possible to help, they will receive the scientific message much better. If I turn the conversation into an argument, I may use my knowledge to show their ideas are wrong, but they will resist. Communication is very important here.

• How should patients, relatives and physicians communicate?

West: (we consider this paragraph the interview’s most crucial part) We must acknowledge that everyone has biases. As someone trained in modern medicine, I advocate evidence-based medicine. But not everyone thinks this way, and everyone has the right to decide as they wish, even if incorrectly. My job is to ensure the patient is as informed as possible. If patients or relatives judge differently, I should not insist that this is absolutely wrong. My job is to provide the best possible information and let them decide. Monty, what else do you think?

Pal: Nothing further. Tim and I share the same perspective. When discussing traditional, complementary and alternative practices, we also address important oncology areas, such as investigating clinical trials to determine whether drugs should be given at a certain pH. Warning patients about alternative medicine is part of our job.

West: High-dose vitamin C or other alternative medicine practices have not had tumor-shrinking effects demonstrated by strong scientific evidence. They either fell short of standard cancer treatments or were only as effective as placebo . This reminds us why clinical trials are needed. We must also remind patients that commercially available high-dose vitamins may strengthen cancer cells as well as the immune system. We therefore need better-designed immune treatments that strengthen immunity without supporting cancer cells, such as new-generation immunotherapies .

Monty and Tim, thank you very much for joining us. This has been a wonderful discussion.

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