“I’m doing everything, so cancer doesn’t come back”: listening to Hispanic cancer survivors on life after treatment

When cancer treatment ends, life doesn’t simply return to normal. Survivors often find themselves navigating an uncertain new reality: no longer in active care, yet still living with the emotional and physical aftermath of the disease. For many Hispanic cancer survivors, that transition can be even more complicated, shaped by language barriers, cultural factors, and unequal access to follow-up care.

A new study published in the Journal of Immigrant and Minority Health set out to explore that experience by focusing on one specific tool: the survivorship care plan (SCP). These documents summarize a patient’s diagnosis, treatments, and recommendations for ongoing care, offering a roadmap for life after cancer. Led by Drs. Jean Yi and Eric Chow, a public health researcher at Fred Hutchinson Cancer Center, the study sought to understand how Hispanic survivors perceive and use these care plans, and whether follow-up calls with bilingual health educators might enhance their usefulness.

“Hispanic cancer survivors are an understudied group,” Dr. Yi explained. “We wanted to get their perspectives on survivorship care plans, a tool to help survivors after they've completed active treatment and a call with a lay health educator to answer any questions they might have had about the survivorship care plan.”

The study drew on both quantitative and qualitative data from Hispanic survivors recruited through the Fred Hutch/University of Washington/Seattle Children’s Cancer Consortium, including South Lake Union, Harborview, the regional SEER Cancer Registry, and community clinics in Central Washington. Participants recruited had completed curative therapy within the past five years and received a bilingual survivorship care plan that summarized their cancer history and provided guidance for ongoing care. Half of the participants also received a phone call from a bilingual lay health educator from the National Cancer Institute’s Cancer Information Service. The educators walked through the plan with participants in their preferred language, answered questions, and clarified next steps.

For most participants, the care plan served as more than just paperwork; it offered clarity, reassurance, and a sense of empowerment. One survivor reflected, “I’m doing everything… so cancer does not come back, at least not due to neglect.” Another said the plan made it “wonderful to… see the importance of follow-up visits and further care.” Survivors often emphasized that having everything written in one place—such as treatments, test results, and recommendations–helped make complex information feel manageable. Several noted that the bilingual format and clear, simple language were essential for understanding their next steps.

Others found that the plan encouraged reflection and renewed motivation. One participant explained, “I wanted to make sure people of color, in particular Latino people’s opinions and experiences, were represented. Since our experiences are underrepresented in most of this research.” For them, participating in the study was not only about their own recovery but about contributing to a broader sense of representation and inclusion in healthcare research.

However, the experience was not without emotional complexity. A few participants described moments of unease when reviewing their care plans or seeing the word “survivor.” For some, revisiting their treatment details brought back difficult memories or stirred anxiety about recurrence. One participant recalled: “I thought, ‘Oh my God, could it be that they’re going to tell me I only have so long to live?’ That got me a little worried.” Such reactions underscored how survivorship care involves not only physical healing but also the ongoing process of emotional recovery.

The phone calls from lay health educators were also received with mixed but mostly positive feedback. Many survivors said that the calls provided reassurance and human connection. “It’s always nice to have someone’s undivided attention who can answer any questions you have,” one participant said. For others, the conversation helped them process the information and build confidence about their next steps. Still, some felt the call added little beyond the written plan. “More information is always better,” one survivor noted, “but I kind of moved on and forgot about it.”

Overall, Dr. Yi’s team found that Hispanic survivors viewed survivorship care plans favorably, describing them as clear, motivating, and empowering. The combination of written information and verbal support appeared to help participants engage more actively with their health. Yet, as Dr. Yi pointed out, the question remains whether these tools lead to measurable behavior change. “While the Hispanic cancer survivors may have liked and appreciated these survivorship care plans,” she said, “it is unclear to what extent these can help in behavior change, such as making sure they get appropriate health screenings.”

By centering the lived experiences of Hispanic survivors, Dr. Yi’s study shows that effective survivorship care is not just about providing information: it’s about listening, building trust, and addressing the emotional and cultural dimensions of recovery. Survivorship care plans may not yet be the perfect solution, but for many participants, they represented something deeply meaningful: acknowledgment, clarity, and hope for the next chapter of life after cancer.

Fred Hutch/University of Washington/Seattle Children’s Cancer Consortium Members Drs. K. Scott Baker, Hannah Liden, Jason Mendoza, Timothy Ohlsen, Katrina Ortblad Stephen Schwartz, Rachel Yung, Rachel Ceballos and Eric Chow contributed to this research.

This study was supported by National Institutes of Health.

Yi, J. C., Lee, E., Duggan, C., Baker, K. S., Blythe, N., Cole, A. M., Cushing-Haugen, K. L., Gutierrez, A. I., Linden, H., Mendoza, J. A., Ohlsen, T. J. D., Ortblad, K. F., Schwartz, S. M., Yung, R., Ceballos, R., & Chow, E. J. (2025). Perspective of Hispanic Cancer Survivors on Survivorship Care Plans: A Qualitative Study. Journal of immigrant and minority health, 10.1007/s10903-025-01794-8. Advance online publication.