Physical symptoms in long-term survivors of rare cancer
Advances in cancer detection and treatment have resulted in a growing population of long-term survivors, but even years after treatment has concluded, many survivors report physical symptoms that interfere with daily living. While there are studies of late effects following common cancers, less is known about these complications in rare cancers. This study focuses on the physical symptoms reported by long-term survivors enrolled in the NIH-sponsored Rare Cancer Genetics Registry.
The Rotterdam Symptom Checklist-Modified was administered to evaluate the severity of physical symptoms commonly reported by long-term cancer survivors. Logistic regression was used to assess association between symptoms and demographic and clinical factors.
In 309 subjects with a median time of 7.6 years from a diagnosis of one or more rare cancers, the median number of symptoms present per participant was 7. The most prevalent symptom reported was tiredness/lack of energy, which was present/very bothersome in 70%/25% of registrants. Women, non-whites, current smokers, and upper GI cancer survivors are particularly affected. Overall, symptom prevalence was similar across rare cancer types, time since diagnosis, and type of treatment.
Rare cancer survivors continue to experience troublesome symptoms many years after diagnosis, regardless of cancer type or treatment modality.
Implications for Cancer Survivors
There is a need for continued emphasis on smoking cessation in cancer survivors as well as enhanced monitoring of long-term complications in female, non-white, and upper GI cancer survivors.
KeywordsQuality of life Rotterdam symptom checklist-modified Rare cancer Long-term survivors
The authors would like to gratefully acknowledge the Rare Cancer Genetics Registry participants and project managers, as well as the Principal Investigators of the Rare Cancer Genetics Registry: Susan Domchek (University of Pennsylvania), Claudine Isaacs (Georgetown University), Jan Lowery and Betsy Risendal (University of Colorado Denver), Patricia Moorman (Duke University), Kala Visvanathan (Johns Hopkins University).
DMF concept; NKH, DMF data analysis; NKH, AM, DMF manuscript writing; HLG, KLB recruitment and development of idea and tools; AM, HLG, KLB manuscript review.
This study was funded by the U.S. National Institutes of Health (grants RC1 CA144706 and R01 CA160233).
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This article does not contain any studies with animals performed by any of the authors.
Informed consent was obtained from all individual participants included in the study.
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