Symptom burden among long-term survivors of young adult cancer: a report from the Project Milestones cohort

Abstract

Purpose

Although late effects and their symptomatology are well described for childhood cancer survivors, less is known about survivors of young adult (YA) cancer. Our aim was to characterize symptom burden among long-term survivors of YA cancer.

Methods

Project Milestones is a cross-sectional cohort survey study assessing benchmarks of emerging adulthood among 3–10-year cancer survivors diagnosed 21–39 years old. We analyzed responses from the first half of cohort participants to 22 questions that screened for current, clinically significant symptoms. Statistical analyses included Chi-square, Fisher exact, and negative binomial regression tests.

Results

There were 1,025 evaluable participants (68.9% female; 34.2% Hispanic; median age at diagnosis and survey 31 and 39 years, respectively; and 73% ≥ 5 years post-treatment). Cancer types were reproductive (male/female, 30.4%), leukemia/lymphoma (28.2%), thyroid (13.5%), breast (10.3%), melanoma (8.9%), and colorectal (8.8%). The most-endorsed symptoms were fatigue (39.4%), altered appearance (35.8%), cognitive problems (31.7%), general pain (28.0%), sensory neuropathy (24%), and urinary incontinence (20%). Over 70% reported at least 1 symptom; one-third reported ≥ 4. In adjusted analysis, cumulative symptom count was significantly higher among participants who were female (vs. male), Hispanic (vs. non-Hispanic White), had public insurance (vs. employer-sponsored), and received chemotherapy/radiation (vs. surgery) by 44%, 21%, 49%, and 71%, respectively.

Conclusions

Long-term survivors of YA cancer report a substantial burden of persistent, clinically significant symptoms.

Implications for Cancer Survivors

Clinicians should emphasize the importance of sustained survivorship care and monitor for symptoms suggesting late effects. Further research is needed to understand their contributing factors and functional impact.

Freyer, D.R., Haydon, M.D., Kelly, R.K. et al. Symptom burden among long-term survivors of young adult cancer: a report from the Project Milestones cohort. J Cancer Surviv (2026). https://doi.org/10.1007/s11764-026-01986-7