A small but growing minority of patients diagnosed with thyroid cancer are deciding not to seek conventional treatment. This comes at a time when the concept of cancer over diagnosis — typically centered on cancers that are unlikely to progress or cause the patient harm — becomes better understood by the public.
Experts note that the overdiagnosis of thyroid cancer has particularly large health ramifications because by age 50, half of the population has at least one thyroid nodule, and by age 90, almost everyone does — making the portion of the population with potential for thyroid cancer diagnosis (or overdiagnosis) very large.
A new study, published in the journal JAMA Otolaryngology, investigated the reasons why some patients diagnosed with thyroid cancer chose to opt out of medical intervention, how they felt about their decision later and what types of obstacles they experienced. The findings show that these patients often face a challenging path — one that is often defined by a sense of isolation and anxiety. In fact, most keep the cancer findings to themselves.
For the study, researchers at the Dartmouth Institute for Health Policy and Clinical Practice and the Veteran’s Administration in White River Junction, Vt., interviewed 22 people diagnosed with thyroid cancer between the ages of 21-75 (average age of 49) who had decided not to seek medical intervention.
The participants’ cancer findings were all discovered by chance during other types of healthcare visits, such as CT scans of the neck or chest, or evaluations of generalized symptoms such as weight gain. None of the study participants were experiencing any symptoms as a result of the thyroid cancer finding.
Among the study’s key findings:
- All 22 study participants questioned the course of treatment recommended by their physicians, but ultimate outcomes varied: one person had their cancer diagnosis reversed after getting a second opinion and three people ultimately decided to receive treatment.
- Reasons for non-intervention varied, with some participants quoting medical literature and published risk probabilities.
- Participants reported that their decision not to intervene received little support or reassurance from health care providers and others, and 12 (of the remaining 18) participants reported receiving skeptical, even derisive responses, such as being told they were “stupid,” “wrong,” or “crazy.”
- A large majority (15) of participants said they kept their thyroid cancer findings secret in order to avoid or manage this type of negative feedback, because as one person said, “untreated cancer is a scarlet letter.”
- Fourteen participants expressed a desire to hear about others’ experiences of non-intervention or to connect with others going through a similar experience, yet only three individuals reported finding satisfactory support.
- As a result of participants overall experiences, five of the 18 had discontinued surveillance, the recommended alternative to intervention.
- Despite the challenges of choosing and living with non-intervention, six participants reported feeling glad they knew about their thyroid cancer finding; four were ambivalent; seven wished they did not know.
The researchers note that while their study focuses on individuals “who face the challenge of living with their cancers, overdiagnosis is also a challenge for doctors who must live with the uncertainty of potentially missing a case they might have been able to manage earlier.”
“Culturally we are conditioned to think that if you’re diagnosed with cancer, you have to do everything you can to rid your body of that cancer. Changing attitudes toward non-intervention is likely to require a change in our larger social and media culture,” said senior author Louise Davies, M.D., M.S., associate professor at The Dartmouth Institute and Chief of Otolaryngology at Veterans Administration in White River Junction, Vermont.
In the meantime, the researchers say that people who choose non-intervention for thyroid cancer would likely benefit from increased social and health system support, including educational programs.
Research on other types of cancer, such as prostate cancer, which have been known to have incidence of overdiagnosis, have shown that those who receive such support are more likely to continue monitoring their cancers.