In 2016, former President Jimmy Carter made headlines when his doctors announced that tumors from an aggressive melanoma that had spread to his brain and liver had disappeared, thanks to a medication that helped Carter’s own antibodies identify and attack the cancer’s underpinnings.
The development underscores a major breakthrough in modern medicine: the potential of highly targeted therapies—which use information about people’s immune systems, genes and proteins—to treat different kinds of cancers. There is a wide range of these experimental treatments. Some reproduce elements of a patient’s immune system and reintroduce them back into the bloodstream, while others insert genetic material with cancer-fighting properties directly into cancer cells, for example.
Some of these therapies appear to be far safer than traditional treatments, and in the case of immunotherapies like the one Carter received, they are sometimes delivered in a single dose.
As exciting as these developments are, they still raise concerns. Research shows they’re effective in only about one-third of cases, and sometimes they have significant side effects, when they overstimulate the immune system, for example. They’re also exorbitantly expensive: The drug company Novartis is charging $475,000 for a single dose of an immunotherapy drug used to treat an aggressive form of childhood leukemia.
Robert T. Croyle, PhD, director of the National Cancer Institute’s (NCI) Division of Cancer Control and Population Sciences, is among the leading psychologists examining the implications of these revolutionary treatments. Since 2003, the former cancer-risk researcher has brought his extensive background in academia and federal science administration to oversee a $500 million national research program that serves as NCI’s behavioral and public health arm.
“We fund research that runs the gamut from basic behavioral science to implementation science, including in the areas of prevention, lifestyle risk factors and, more recently, patient-reported outcomes,” Croyle explains.
The Monitor asked Croyle to share his thoughts on how this sea change in cancer treatment might affect psychological research and practice.
These new treatments seem like cause for optimism, but what are the psychological issues to be aware of?
We have evidence that patients in clinical drug trials often have unrealistically positive expectations about how a new treatment will affect their disease and survival time. So, a real challenge for clinicians will be to support patients’ hope and optimism, but also to be sensitive to the realities of treatment and the course of cancer. That is a very delicate balance, especially when family members have differing expectations about the course of the disease and about the patient’s role in deciding whether to pursue yet another course of treatment.
We also have to learn more about how to best provide psychological support once some of these single-dose treatments are over. That’s been a concern with traditional treatments because patients may receive good psychosocial support during a long course of treatment, but those same supports don’t necessarily exist when they transition back to their primary-care providers. The same may be true for these new therapies.
Also, every time there is a change in cancer treatment, psychologists must become familiar with a new set of side effects and their impacts on patients’ experiences. That is challenging when there is still limited information about these treatments’ long-range effects.
How will financial factors affect people’s reactions to and use of these therapies?
I think clinicians are more likely to encounter “financial toxicity”—a greater level of stress, concern and anxiety as a result of struggling with the high costs of these new therapies. That’s true not only for patients, but for families, where the financial strain is often felt most acutely. Caregivers may feel the economic impact not only because of the treatment cost itself, but because they miss work or lose income as a result of the time and emotional effort required to care for a family member. Uncertainty about health-care access and health-care coverage adds another layer of strain. For these reasons, our division is interested in supporting research on how the economic aspects of cancer care affect families, as well as patients’ responses to their care and treatments.
The division is also concerned that the cost of these newer therapies will increase health disparities rather than decrease them. We’ve seen this before when new medical technologies are introduced. Our division’s strategy is to enhance the data-collection systems that enable us to monitor how these new treatments are being disseminated.
As you know, some psychologists counsel people who seek genetic testing to determine if they are at risk for certain diseases. Do you expect the same concerns—for example, anxiety over worrisome results—will exist for people who are candidates for these new treatments?
Yes. Again, one issue will be addressing people’s expectations. In the case of therapies that have the potential to fight cancer cells by using a patient’s own genetic information, for example, many patients won’t be eligible because there is still no effective therapy for targeting some of the most common cancer mutations.
A newer issue is the changing nature of genetic testing. In the past, genetic testing has focused on single-gene mutations. That has now evolved into broader testing of many different genes at the same time. This presents a communication challenge when presenting test results, which may be more complex and contain a richer and denser set of information than was the case in the past.
Overall, psychologists also need to be sensitive to the health literacy levels of their patients. Our division’s Health Information National Trends Survey (https://hints.cancer.govopens in new window), for instance, clearly indicates that many people are confused about what causes cancer and how best to prevent it. As just one example, about one-quarter of Americans still feel there isn’t much they can do to lower their chances of getting cancer, when research clearly shows that healthy lifestyle choices, and a social context that supports them, are major factors in cancer prevention. Of course, these are areas that psychologists can continue to help people learn about and integrate into their lives.
