September 05, 2019
Cancer-related worry remains common in thyroid cancer survivors, even 2 to 4 years after diagnosis, despite thyroid cancer being perceived as a so-called "good" cancer, suggesting that greater efforts from endocrinologists and other healthcare professionals dealing with this disease are needed to alleviate these patient concerns.
The researchers also found that those most prone to worry are women, younger patients, those with lower levels of education, and people from racial/ethnic minorities, note the authors, led by Megan Haymart, MD, an endocrinologist from the University of Michigan, Ann Arbor.
The study was recently published online in Thyroid.
"We found that both diagnosis and treatment are associated with some worry even 2 to 4 years after diagnosis," reported Haymart.
In the study, 41.0% of participants reported worry about death, 43.5% were concerned about harms of treatment and 54.7% were anxious about impaired quality of life. As well, 58.0% thought other family members may be at risk and 63.2% worried about recurrence.
Medscape Medical News spoke with one young thyroid cancer survivor, Carly Flumer, who was diagnosed in January 2017 at the age of 27. She successfully completed treatment later that year but said the cancer-related worry persists.
"As a survivor, I find that I still worry a lot, especially about my future health, including relapsing," she told Medscape Medical News. "While my quality of life is good, the concept of having to take a medication to sustain my life on a daily basis is overwhelming, and something I certainly never expected."
Disconnect as Thyroid Cancer Downplayed but Patient Concerns Real
Commenting on the study, thyroid expert Jacqueline Jonklaas, MD, PhD, of MedStar Georgetown University Hospital, Washington, DC, highlighted the importance of research into this issue.
"The majority of patients with thyroid cancer have low risk disease and ultimately do extremely well with respect to having very low rates of cancer recurrence and almost no risk of death from thyroid cancer," she pointed out.
But she added that there is clearly a disconnect if these patients are doing extremely well from a medical standpoint but at the same time have impaired quality of life because of worries about recurrence or death and/or concerns about toxicities of treatment.
"Restoring a balance so that patient [and physician] worry is not out of proportion to risk of recurrence or death requires education of both providers and patients," she urged.
Haymart also observed that issues related to thyroid cancer are often minimized with less media coverage and research compared with other cancer types.
"Receiving a thyroid cancer diagnosis is very troublesome for many patients," she pointed out. "We wanted to look at thyroid cancer because it is often considered the 'forgotten' cancer with patients being told they have a 'good' cancer. The fallout of this diagnosis can sometimes be dismissed too easily."
Gary Bloom, a 24-year survivor of papillary thyroid cancer and now executive director of the Thyroid Cancer Survivors' Association, Inc, agrees.
He told Medscape Medical News: "I talk to people daily who try to reconcile the scary reality of having a cancer diagnosis with hearing that their cancer is a 'good cancer.' This makes it hard to know how to deal with [it]."
Ethnically Diverse Data Featuring African Americans and Hispanics
The new study explored cancer-related worry in 2215 disease-free patients two to four years after diagnosis and successful treatment of thyroid cancer.
Patients were drawn from the Surveillance, Epidemiology, and End Results (SEER) Program registries of Georgia and Los Angeles County. "These two study sites provided a diverse cohort with Georgia providing a rich source of the African American population, while Los Angeles provided a rich Hispanic population," noted Haymart.
Data were available for tumor characteristics, initial treatment, and patient-reported outcomes for worry. Haymart and colleagues looked at multiple worries, both at initial diagnosis and in the last 2 months.
Patient reports of specific concerns (eg, quality of life not being the same as before the thyroid cancer diagnosis) were measured using a 5-point Likert scale with the following options for worry: not worried at all, a little, somewhat, quite a bit, and very much.
Haymart explained that typical treatment-related worries "can be the effects of the surgery, for example, there can be voice problems, low calcium, harm from the radioactive iodine, dry mouth and eyes, increased cavities, and a rare risk of secondary malignancy."
Regarding the impact of worry on their lives, respondents were asked to rate how often their thyroid cancer made it difficult to carry out usual daily activities at home and work, made them feel distant from family and friends, and made them feel upset, both at diagnosis and during the past month.
"Our key findings were that worry was common, and about multiple aspects of the cancer, including treatment and quality of life, with the highest proportion worrying about recurrence," Haymart told Medscape Medical News.
Physicians Need to Focus Reassurance on Certain Patient Groups
There was evidence of variation in concerns by ethnic group. In particular, worry about death was more common in Hispanic or Asian populations, with an odds ratio (OR) of 1.41 in Hispanics and 1.57 in Asians compared with whites.
Patients with lower levels of education also showed greater levels of worry.
Those with a high school diploma or lower had an OR of 1.78 for worry, compared with patients who had a college degree and higher.
Older patients and men were less likely to worry — those aged 65 years or older had an OR of 0.28 for worry, compared with those aged 44 years or younger.
"We need to further investigate why these minorities experience greater worry," Haymart pointed out.
"Is it related to communication either at the physician–patient level or to cultural differences or even language barriers? Physicians should be aware of this worry and address it in an appropriate way, especially if there's a vulnerable group — females, younger patients, those with lower education, and ethnic minorities," she noted.
Jonklaas agreed and said more education is needed so that patients appreciate these risks prior to treatment: "Joint patient–physician decision-making is needed prior to embarking on each step of thyroid cancer treatment."
"This education needs to incorporate issues like child-bearing and fertility, which disproportionately affect younger women," she also highlighted.
And, she stressed, "Education and decision-making tools need to be understandable and accessible for those with less years of education" and "for those from an ethnic minority," especially those who may not speak English well.
September Is Thyroid Cancer Awareness Month: A Problem Shared...
During what is thyroid cancer awareness month, Flumer, who has written a blog post for the Mayo Clinic about her diagnosis, told Medscape Medical News how she manages her ongoing thyroid cancer-related worry.
"Talking with other thyroid cancer patients and survivors in support groups both online and in-person has been a tremendous help — sharing what we're going through and having empathy. I have also found that writing has helped me a great deal," she said.
"Writing about how I feel, my journey, and how I think the healthcare system could be improved so that future patients have the best care is something I'm passionate about. As a survivor, if there's a silver lining to my journey, I think it's finding that passion," she emphasized.
The Thyroid Cancer Survivors' Association educates and supports patients and families through its website, face-to-face and online support groups, videos with experts, free handbooks, and a low-iodine cookbook, newsletter, and materials in 11 languages. It also sponsors seminars, workshops, and the annual International Thyroid Cancer Survivors' Conference, to be held October 18-20, 2019 in Denver, Colorado.
Haymart and Jonklass have reported no relevant financial relationships.