Patients with thyroid cancer who choose to have active surveillance instead of surgery report a similar psychological burden of worrying about their cancer as patients who undergo thyroidectomy. However, those concerns lessen over time and most ultimately express satisfaction with their treatment choice, according to a large new study of patients with thyroid cancer in Japan.
"It is reassuring to find that the burden of concern, such as worry, is similar between patients who are treated and those who are surveilled," say Louise Davies, MD, of the Geisel School of Medicine at Dartmouth, in Hanover, New Hampshire, and colleagues, in their article published online January 31 in JAMA Otolaryngology–Head & Neck Surgery.
"These findings suggest that the possibility of cancer worry should not be viewed as prohibitive to successful active surveillance in thyroid cancer," they write.
Nevertheless, "the observation that one third of patients with thyroid cancer receiving long-term active surveillance harbor worry that affects their mood deserves attention," they add, noting, "the role of the physician, and medical care more broadly, is to relieve suffering."
In an accompanying commentary, Anna M. Sawka, MD, PhD and David P. Goldstein, MD, of the University of Toronto, Ontario, Canada, suggest the findings are a wake-up call for clinicians to be aware of the potential concerns patients may have about their diagnosis, regardless of whether they choose active surveillance or surgery.
"The important lessons for healthcare practitioners are not to underestimate the importance of the diagnosis, treatment, and follow-up of thyroid cancer and to fully address the supportive care needs of this population, irrespective of treatment choice."
Data on Active Surveillance in Small Papillary Thyroid Cancers Lacking
Small thyroid cancers account for 50% or more of detected cases, and with such cancers often failing to become symptomatic over a person's lifetime, patients may be offered active surveillance with periodic imaging or testing instead of immediate surgical intervention.
Some have speculated, however, that the psychological concern of the cancer possibly growing could be greater than that with more definitive treatment, but data on this have been lacking.
To take a closer look, Davies and coauthors conducted a survey of patients at Kuma Hospital, in Kobe, Japan, which is the site of the world's largest cohort of patients undergoing active surveillance for papillary thyroid microcarcinoma.
Of 215 patients who completed the survey, 195 were women and 20 were men.
Overall, among all respondents, 37% reported that their worry about their cancer occurred sometimes (as opposed to rarely for 42% or not at all for 21%), and 32% said the worry affected their mood either somewhat or a lot (compared with "a little" for 44% and not at all for the remaining 24%).
And 14% of patients said the worry affected their ability to carry out daily activities somewhat or a lot.
Among the leading causes of patients' worry were fear of the cancer spreading, the possible need for later surgical intervention, and difficulty interpreting bodily experiences in the general location of the cancer.
However, as many as 60% reported a decline in their level of worry from the time they first learned of the cancer.
By 3 years after diagnosis, the proportion of participants who said they were not at all worried about the cancer increased from 14% to 25%.
Despite the levels of concern, the vast majority of patients said they agreed or strongly agreed that their decision to have active surveillance matched their personal values, and 83% agreed or strongly agreed that the active surveillance choice was the best decision for them personally.
Concerns Similar to Other Low-Risk Cancers, Provide Support
"To our knowledge, this study is the first report about worry among patients with thyroid cancer on active surveillance," the authors note.
And the findings illustrate that examining comparative data from other cancers with similar diagnosis "is informative," they observe.
For example, there has been a study of active surveillance of prostate cancer since the 1980s, which has similarly shown that quality of life and mental health measures were generally no worse in patients undergoing active surveillance compared with those who chose active management.
The new study likewise underscores that "efforts to improve the survivorship experience of this patient population should include both those whose first management choice is surgical intervention and those whose first management choice is surveillance," the authors stress.
Those efforts could include offers of patient support groups, referral to psychological care, or advice in handling concerns about cancer recurrence, they indicate.
"Currently, most patients do not receive these services," they emphasize.
In their commentary, Sawka and Goldstein note one important limitation of this study is that they did not compare those undergoing active surveillance with a surgical comparison group at Kuma Hospital.
But there are comparative data from other studies, they note.
"Indirect comparisons of these findings to published studies of patients with papillary thyroid cancer [PTC] who had surgical treatment from other institutions and countries suggest that cancer-related worry may not necessarily be worsened by active surveillance," they explain.
That being said, more research is needed to validate the findings in other settings to understand its generalizability.
"This important research highlights the critical need for future prospective long-term outcome research, comparing not only the oncologic outcomes but also the experiences of patients with low-risk PTC under active surveillance with those treated by thyroidectomy," they write.
As previously reported by Medscape Medical News, the approach of active surveillance for low-risk PTC first gained recognition at Kuma Hospital; however, many are still reluctant to adopt the approach outside of Japan.
The study was funded in part by the US Department of Veterans Affairs, Dartmouth Institute for Health Policy & Clinical Practice, and the National Institutes of Health/National Cancer Institute.
JAMA Otolaryngol Head Neck Surg. Published online January 31, 2019. Abstract, Editorial.
