Long-Term Survivors of Childhood Cancer at Risk for Multiple Cancer-Related Worries, Even Decades After Treatment Has Ended

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Long-term survivors of childhood cancer may have increased risks of cancer-related worries, which may be associated with higher levels of substance use, health care utilization and lower rates of physical activity.

A significant portion of adult survivors of childhood cancer are at an increased risk of experiencing cancer-related worries (CRWs) decades after treatment has ended, according to study results recently published in Cancer. Prior to this study, the authors noted, little was known about the factors associated with CRW or its impact on health behaviors in adult survivors of childhood cancer.

To estimate the prevalence of CRW and its effect on health behaviors in long-term childhood cancer survivors, the authors reviewed data from 3,211 patients from the St. Jude Lifetime Cohort who were at least 18 years old and at least 10 years out from their diagnosis.

Participants had, on average, received a cancer diagnosis 22.8 years ago. Thirty-six percent were survivors of leukemia, 32% of non-central nervous system tumors, 19% of lymphomas and 2% of other malignancies. Out of the patient population, 85% were treated with chemotherapy, 62% with surgery, 30% with cranial radiation therapy and 27% with noncranial radiation therapy. The main goal of the study, the authors noted, was to examine the associations between CRW and treatment exposures, chronic health conditions, psychological symptoms and health behaviors.

To assess CRW, participants were asked if they were worried about their cancer returning, if they were concerned about physical problems related to their cancer and if they were concerned about developing another cancer. On a five-point scale, responses ranged from “strongly disagree” to “strongly agree.” A participant was considered to be “worried” if they agreed or strongly agreed to a question.

Health care utilization was assessed by patient reports of the number of physician visits in the past two years; the number of physician visits related to cancer, leukemia, tumor or similar illness in the past two years; and the number of times calling a physician’s office regarding an illness or medical condition in the past two years.

Researchers also assessed heavy/risky drinking and tobacco and marijuana use with self-reports of frequency, amount and past use. Physical activity was also tracked by the amount of moderate/intense exercise per week.

The study results demonstrated that 64% of survivors reported worry about subsequent malignancy neoplasms (SMNs); 45% reported worry about physical problems related to cancer; and 33% reported worry about relapse. Moreover, compared to men, women were more likely to worry about relapse, as well as developing another cancer.

Certain psychological symptoms, as well as treatment exposures and chronic conditions were associated with significantly increased risks of CRWs. These included, but were not limited to, survivors who had experienced relapse or SMN, noncranial radiation therapy, chemotherapy and cranial radiation therapy. For patients with obesity or neurological disorders, there was also an increased risk. There was also a strong connection between CRW and anxiety, depression and pain, which coincided with the statistics on CRW in survivors of adult-onset cancer.

Patients who reported CRW were more likely to have over five cancer-related physician visits and calls to a physician’s office in the past two years compared to survivors who were not worried, according to the study results. The study authors also noted that CRW was associated with an increased risk of current tobacco use, past marijuana use and current marijuana use.

To explain their findings further, the authors used an example of female childhood cancer survivors with higher CRW versus young women with a history of early-stage breast cancer. “In one study, female childhood cancer survivors with higher CRW reported lower rates of performing recommended breast self-examination,” they wrote. “In another study, young women with a history of early-stage breast cancer had a higher frequency of breast self-examination but a lower frequency of mammograms, ultrasounds, or other forms of cancer screening. Thus, CRW may be associated with both reassurance-seeking and avoidance behaviors, even within the same sample.”

With this said, “a substantial proportion of adult survivors of childhood cancer reported CRW associated with increased health care utilization,” the authors concluded. “CRW may serve as an intervention target to promote well-being and adaptive health behaviors.”

More research, according to the authors, is needed to determine the types and degrees of CRW reported by survivors who keep up with long-term follow-ups versus those who are less actively engaged with their care. They also noted that future studies should examine CRW with more diverse populations and the factors associated with those worries.

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