Hematopoietic stem cell transplantation is a complex procedure that depletes an individual’s unhealthy blood cells and replaces them with healthy donor blood stem cells. Hematopoietic stem cell transplants can be recommended to treat blood cancers, and in certain cases transplants can be highly effective. However, for more aggressive or high-risk forms, transplants are less effective, and these cancers carry a high risk of recurrence. Fred Hutch researchers have pioneered hematopoietic stem cell transplants and treating the associated complications, but one aspect of transplant survivorship has remained under-addressed: Fear of cancer recurrence.
Many cancer patients share a fear that their cancer will come back or progress, known to scientists as the fear of cancer recurrence. While widespread, clinically significant levels of this fear can be a major burden on a patient’s overall wellbeing, and work in patients with solid tumors has shown an association of worse mental and physical health. Outside of these concerns, some work indicates that patients with clinically significant levels of fear of cancer recurrence are more likely to avoid follow-up care and screenings. Despite this established work, studies characterizing fear of cancer recurrence in hematopoietic stem cell transplant survivors are lacking.
To better understand how fear of cancer recurrence impacts hematopoietic cell transplant survivors, scientists in the Clinical Research Division initiated a long-term follow up study to survey transplant survivors. Starting one year after their transplant, patients received a questionnaire that assessed their fear and anxiety about their cancer returning. Researchers also asked whether the survivors had long-term complications following their transplant and if they were adhering to follow-up visits and cancer screenings. “This project was really exciting and interesting because we could really leverage the thousands of patients who have gotten transplanted here at the Hutch,” says Dr. Emily Liang, lead author of the study. In total, they analyzed data from roughly 1500 hematopoietic cell transplant recipients treated at Fred Hutch between 1973 and 2023.
They found that about one third of their respondents had clinically significant levels of fear of cancer recurrence, meaning that their anxieties significantly impeded daily life. Of survivors with clinically significant fear of cancer recurrence, 33% had higher risk diseases before transplant, 59% were still undergoing chemotherapy treatment, 54% had relapsed in the past, 70% were in active relapse, and 63% were uncertain about their history of relapse. Patients with higher pre-transplant disease risk, history of relapse while still on treatment, active relapse, or uncertain relapse status all had significantly higher odds of clinically significant fear of cancer recurrence. Other risk factors for clinically significant fears were younger age at survey completion and shorter time between transplant and survey completion.
The researchers also characterized how clinically significant fear of cancer recurrence impacted transplant survivors. They found that the condition was associated with worse physical and mental health, physical function, and cognition. Additionally, survivors with clinically significant fears had higher levels of anxiety, depression, fatigue, sleep disturbance, and pain. They also reported higher levels of anxiety before follow-up appointments and were more likely to seek medications or therapy for mental health concerns. Despite these higher levels of anxiety, survivors with significant fear of cancer recurrence were just as likely as their peers without significant fears to attend their follow-up visits and adhere to additional cancer screenings recommended by doctors, challenging previous studies. “These results were quite surprising given previous clinical findings,” commented Liang, “This is probably due to the fact that rates of cancer screenings are quite high in transplant recipients overall.”
In the future, researchers hope to leverage these findings and develop interventions for patients experiencing clinically significant levels of fear of cancer recurrence. “I think that there’s definitely a lot that could be done because we’ve shown that this really impacts the patient experience,” says Liang. For starters, the team hope to see their questionnaire implemented as a standard part of long-term patient monitoring. This would help researchers identify patients who are struggling and refer them to the appropriate mental health resources. “This was really a first step…a next step would be to see the interest and ability to employ something like this in the future. It would definitely take a lot of collaboration!” says Liang.
This work was supported by funding from the National Institutes of Health.
Fred Hutch/University of Washington/Seattle Children’s Cancer Consortium Members Drs. Emily Liang, Megan Shen, Rachel Salit, Phuong Vo, Masumi Ueda Oshima, Catherine Lee, Paul Carpenter, Jordan Gauthier, and Stephanie Lee contributed to this work.
Liang EC, Shen MJ, Salit RB, Onstad L, Vo P, Ueda Oshima M, Boiko JR, Lee CJ, Carpenter PA, Gauthier J, Simard S, Lee SJ. 2026. Fear of Cancer Recurrence in Hematopoietic Cell Transplantation Survivors. Transplant Cell Ther. 2026 Mar 23:S2666-6367(26)00228-9. doi: 10.1016/j.jtct.2026.03.022.
Kelsey Woodruff is a PhD candidate in the Termini Lab at Fred Hutch Cancer Center. She studies how acute myeloid leukemia cells remodel the sugars on their membranes to reprogram cancer cell signaling. Originally from Indiana, she holds a bachelor's degree in Biochemistry from Ball State University. Outside of lab, you can find her crocheting and enjoying the Seattle summers.