Patients Who Choose No Intervention for Small Thyroid Cancers Report Lack of Support
, by NCI Staff
Patients who choose not to pursue immediate biopsy or treatment for small, asymptomatic thyroid cancers, or suspected cancers, may face unsupportive responses from doctors, friends, family, and others, a new study shows. Such responses may contribute to patients’ anxiety about cancer progression, feelings of isolation, and—for some—even a decision to stop monitoring their cancers, the study authors found.
In recent years, scientific concern has increased about the overdiagnosis of cancer—the detection of small cancers that are unlikely to cause medical problems. Studies suggest that overdiagnosis of cancers—including prostate, breast, and thyroid cancers—presents challenges to both doctors and patients. Doctors cannot reliably predict which cancers will progress, leading to uncertainty for them and their patients. Yet unnecessary treatment of cancers that would never cause harm, known as overtreatment, may lead to harmful side effects.
In the United States, many doctors recommend immediate biopsy or surgery for small thyroid nodules that are suspected or known to contain papillary thyroid cancer. But although active surveillance for people with such nodules is not yet widely accepted, some people are making their own choices not to intervene.
Findings based on interviews with such people, published March 9 in JAMA Otolaryngology-Head & Neck Surgery, "point to our need to remain sensitive to patients and have open discussions with them" when faced with medical controversies or dilemmas about these types of choices, said lead investigator Louise Davies, M.D., of the Veteran's Administration Outcomes Group in White River Junction, VT, and the Dartmouth Institute for Health Policy & Clinical Practice.
The study authors cautioned that their findings reflect only the experiences of the people they interviewed and that other people in such a situation may feel differently. Indeed, people who question their doctor's advice in such cases are unusual, Dr. Davies said.
The findings highlight the need to better understand the external pressures that cancer patients may experience at various points in the "cancer journey," said Ashley Wilder Smith, Ph.D., M.P.H., chief of NCI's Outcomes Research Branch in the Division of Cancer Control and Population Sciences (DCCPS).
They also underscore the need to understand how those pressures can affect people's decisions about medical care and how they feel in general, said Dr. Smith, who was not involved in the study.
Consequences of Questioning
Participants included in the study had incidentally detected thyroid nodules—found, for example, by a CT scan of the neck or chest done for other reasons—that were suspected or known to contain cancer. Some had also questioned the medical recommendations of a biopsy or surgery because they thought their cancer or suspected cancer was unlikely to progress.
Of the 22 study participants, 1 had the cancer diagnosis reversed after getting a second opinion and 3 ultimately decided to have surgery to remove their thyroid gland. The remaining 18 had lived with the decision not to intervene for an average of 39 months at the time of the study.
In telephone interviews with the researchers, 12 of the 18 study participants who decided against intervention reported responses that were not supportive or not reassuring, including being told by doctors, friends, and others that they were "being stupid," "were wrong," or were "crazy."
One participant told the researchers that "deciding not to have surgery in the world where I live is kind of like deciding to jump off a bridge…. I was making a decision against opposition from everyone."
To avoid risking unwanted advice or criticism, 15 participants decided to keep their decisions secret.
"I won’t tell anyone because if I were to tell anyone I had cancer, they would think I was on the verge of dying," one person told the researchers. "They treat you as though…you're being irresponsible, or you're even being suicidal."
Helping patients avoid overtreatment for small thyroid cancers, as has already begun for prostate cancer, will require further efforts, Dr. Davies said. "Finding ways to more explicitly provide support for patients, either through social media or via support groups through individual health care systems, might be good strategies," she said.
Developing online tools to support wise decision making would also be helpful, she continued.
"I think our job as physicians is to work together with a patient, so we all feel that we've made the best decision—one that reflects that particular patient’s health care needs, priorities, and values," Dr. Davies said. "Having specific guidelines and explicit monitoring programs or registries [to gather data on patient outcomes] would help physicians quite a bit."
Current clinical practice guidelines from the American Thyroid Association and the National Comprehensive Cancer Network still recommend surgery for people with small, early-stage papillary thyroid cancers, the study authors noted.
Understanding the Patient Experience
For Dr. Smith, the main message is that "we need to better understand the patient experience, regardless of what people decide to do about treating their cancer."
Though inconclusive for the general thyroid cancer population, a small, qualitative study like this, Dr. Smith said, "is a way to begin asking questions and try to understand the implications [of these decisions] on patients' lives."
"This work has brought out a new concept that could be important in adding to how we think about shared decision making," added Sarah Kobrin, Ph.D., M.P.H., acting chief of the Health Systems and Interventions Research Branch and a DCCPS scientist who has worked with models of medical decision-making processes.
Although the people Dr. Davies and her colleagues interviewed may not be typical of people who are confronted with an ambiguous diagnosis, "the influence of other people in one's life and how that has impact once a choice has been made…has applications beyond the concept [of overdiagnosis]," Dr. Smith said. "A person can feel the same kinds of pressures at other points in the cancer journey."
For example, she continued, people who initially pursue aggressive treatment but elect not to pursue treatment when their cancer recurs may feel isolated because friends don't know how to support them under these circumstances. Decisions by patients near the end of life, such as decisions about palliative care, may also be influenced by the reactions of doctors, family, and friends, as their situation evolves.
"Right now, when we think about shared decision making, we tend to think about the decision as the end of the process," Dr. Kobrin said. "You and the doctor have agreed, and that's it."
But, Dr. Kobrin continued, the findings of Dr. Davies and her team suggest a need to consider the influence of the community, significant people in a patient's life, and even social media, on the longer-term consequences of those decisions.