‘Get it out’ a common reaction for adults diagnosed with papillary thyroid cancer
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Adults diagnosed with papillary thyroid cancer had strong emotional reactions similar to those diagnosed with more aggressive cancers, according to a study published in Thyroid.
“Diagnosis with papillary thyroid cancer or an indeterminate thyroid nodule that may be cancer is a scary experience for many patients that often evokes multiple emotions and the need to ‘get it out,’” Susan Pitt, MD, MPHS, assistant professor of surgery at the University of Wisconsin School of Medicine and Public Health, told Healio. “This reaction seems to be rooted in cultural norms and beliefs about the severity of a cancer diagnosis. This reaction can also color how patients interpret information and make decisions about their treatment. Acknowledging, understanding and responding to these emotions is important for physicians to be able to treat the entire patient and not just their disease.”
Pitt and colleagues conducted interviews with adults diagnosed with a 1 cm or larger thyroid nodule and cytology of papillary thyroid cancer, suspicious papillary thyroid cancer or an intermediate result considered highly suspicious for cancer based on ultrasound appearance or other clinical history (n = 85; mean age, 48.2 years; 73% women). Participants were part of a randomized clinical trial at a U.S. tertiary care center.
Researchers conducted interviews at least 1 week (mean time, 23.8 days) after a visit with the treating surgeon or advanced practice provider. The semi-structured interviews were conducted in a private room between August 2014 and February 2019. Participants answered questions about their experience with the diagnosis, their interaction with the surgeon, advice they would give the surgeon after the consultation, advice they would give to someone who was newly diagnosed, and the care team’s communication effectiveness. Interviews lasted for a mean time of 1 hour.
Researchers said the majority of participant’s expressed a common desire to “get it out,” referring to the cancer or potential cancer (n = 46). The reaction emerged unprompted in many interviews and frequently in response to the questions, “What concerns you most at this time?”
Other common themes also emerged. The phrase, “it’s cancer,” was shared by many participants as an immediate emotional reaction to the news. The reactions were accompanied by reported feelings of shock, anxiety and fear. Participants also reported a sense of urgency to get the surgery done as soon as possible, something researchers said was striking and unexpected since none of the interview questions were designed to elicit a sense of urgency.
“In our clinical practices, we see patients with all different types of reactions to their diagnosis, including those characterized by shock and fear,” Pitt said. “As a result, we were not surprised by the reactions some participants shared. We sought to describe these in depth and probe about the reasons for the reactions. Papillary thyroid cancer is unlike many cancers because most patients do very well. However, patients who are diagnosed with the disease are often not aware of the favorable prognosis.”
Some participants said they were anxious about the thought of cancer being in their bodies and worried about it spreading while they waited for surgery. Some participants expressed the thought that surgery would “fix” the issue and minimized the risk for potential adverse treatment effects, saying these would be worth having if the cancer was gone.
Pitt said the importance of this research was to give health care providers a better understanding of how individuals who receive a diagnosis feel so providers can better assist patients with making treatment decisions.
“It will be important to devise ways to support the exchange of information and decision-making process to help align patients’ goals and priorities with their treatment choice,” Pitt said. “Guidelines have proposed active surveillance for very low-risk papillary thyroid cancers and less extensive management for low-risk disease. Implementation of these less extensive strategies will likely require physicians to support patients’ emotional response, which will help patients attend to information related to management options.”
For more information:
Susan Pitt, MD, MPHS, can be reached at pitt@surgery.wisc.edu; Twitter: @susieqp8.
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Maria Papaleontiou, MD
In this qualitative study, the authors found that following a diagnosis of papillary thyroid cancer or indeterminate cytology of a thyroid nodule, patients experienced strong emotions, including shock, anxiety, fear and a strong need to have surgery (“get it out” need evoked by the word “cancer”). Interestingly, these strong emotional reactions persisted in some patients even after education regarding the slow-growing nature of papillary thyroid cancer was provided. Additionally, the urgency to have surgery led some patients to minimize the risk of potential treatment adverse effects.
In an era where “less is more” in well-differentiated thyroid cancer management, this study, among others, highlights the fact that patients react with anxiety and fear upon diagnosis despite having excellent prognosis. These strong emotional reactions by patients suggest that there is a disconnect between actual thyroid cancer and treatment risks, and patient perceptions. It is important to consider the potential impact of these emotions on treatment intensity, as they may hinder efforts toward less aggressive treatments or active surveillance for low-risk patients. Efforts should be undertaken to alleviate feelings of anxiety and fear and adequately address thyroid cancer patients’ psychosocial needs at the time of diagnosis, as well as long term.
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