Going through cancer treatment is often an emotionally and physically taxing experience that can be very disruptive to one’s day-to-day life. This is particularly true for patients with blood cancers who receive stem cell transplants as part of their treatment and spend weeks to months in the hospital to receive and recover from this life-saving therapy. During this time in the hospital, the goal for many patients is just to survive, and a whole team of healthcare providers are there to help them do just that. But after recovery from a successful hematopoietic cell transplant, shifting from survival mode to figuring out how to live again can be unexpectedly difficult. For one, patients no longer have a whole trained team of stem cell transplant providers and nurses to help them with this part of the cancer survivor journey. While the support of family and friends is a critical component of recovery, most of them have not been through this same life-altering experience and can’t always offer useful advice on navigating the transition back to a ‘normal’ daily life or adjusting to the ‘new normal’.
One struggle patients often face is how, when, and if they should return to work, which many feel marks their transition back to their pre-transplant life and is critical for others due to financial or health insurance related reasons. While there is research out there specific to breast, colon and prostate cancer patients, “there is much less data in the literature looking at the experience of stem cell transplant patients who are wishing to return to work,” explains Dr. Rachel Salit, an Associate Professor in the Clinical Research Division at Fred Hutchinson Cancer Center. Blood cancer treatment is different than other cancers in that it often requires a long hospital stay immediately after diagnosis requiring patients to take a long break from work. This may be then followed by a stem cell transplant which is a 100-day commitment, and in some cases requires living far from home. The stem cell transplant therapy is also unique in that it wipes out the patient’s immune system, putting patients at a higher risk for infections for long periods of time. Knowing that stem cell transplants only have about a 50% chance of returning to work following the procedure, Dr. Salit and colleagues surveyed one thousand 1-5 year stem cell transplant survivors at Fred Hutch “to see what their facilitators and barriers were as well as what support they might find useful to help them achieve their return to work goals,” Dr. Salit states. Through surveying these transplant survivors, Dr. Salit and Fred Hutch colleagues hope to design an intervention to help patients and support them with this transition. The results of the survey were recently published in Transplantation and Cellular Therapy.
“The biggest challenge patients face following their 100 days at Fred Hutch as a transplant patient is how to phase back into their former lives when they may be more tired, have difficulty focusing and feel physically weaker than before the transplant. Socially, they are also fearful of getting sick by interacting with friends and family or going to public places such as church or a concert or sporting event,” shares Dr. Salit. In their recent study evaluating the return-to-work transition cancer survivors experience following stem cell transplantation, the authors found that “only 53% of patients had returned to work at a median of 3 years. This is compared to 80-90% of breast cancer patients. Ninety-five percent of survey responders also reported that they could have benefited from return-to-work support provided by our transplant center, but only 13% indicated that they had received it. So, it shows that we could be doing so much better,” reports Dr. Salit. She adds that “enhanced resources from social work, physical and occupational therapy, psychology or psychiatry” are much needed support interventions for those wanting to resume their careers. The study revealed that the main motivating factors for survivors to return-to-work post-transplant were to feel useful and productive, salary, health insurance and to have interactions with people, while decreased strength and energy were the leading challenges for these patients to resume their careers. For those who had successfully transitioned back to work, they found that having increased flexibility with their schedules, including being able to work from home, was a major factor that facilitated their return (see table below).
Additionally, the study surveyed patients receiving autologous (patient receives own stem cells) and allogeneic stem cell transplants (stem cells received from matched donor). Autologous transplants are typically better tolerated, and transplant patients are required to remain at their transplant center for 30 days following their transplant procedure. While a month is still a long time to remain in the hospital and very disruptive to one’s daily life, those receiving allogeneic transplants spend much longer. Because of the shorter duration of stay at the center for autologous transplant patients, “we often think of them as being able to return to normal life sooner,” explains Dr. Salit. She comments that she “was surprised that many patients receiving an autologous transplant reported a struggle with returning to work,” and that their study demonstrated “that we may be underestimating how much autologous transplant patients would also benefit from post-transplant support.”
Taking into account the results learned from this study, Dr. Salit explains that she is “working on opening our first return to work support intervention study at the Hutch in collaboration with Rehabilitation Medicine (Hanna Hunter, Fred Hutch and UW Medicine) and Rehabilitation Counseling (Kurt Johnson, UW Medicine). We hope that the patients will derive benefit from that.” The research team aims to open the study up in the fall where anyone receiving a stem cell transplant and interested in returning to work following treatment will be eligible to enroll in the study. As pioneers of hematopoietic stem cell transplants, Dr. Salit emphasizes the importance of Fred Hutch in not only providing patients with this life-saving treatment, but arming survivors with the resources they need to thrive in their post-treatment era. She states, “we have created a stem cell transplant program at Fred Hutch that is world class and is curing so many more patients than even 1-2 decades ago. These patients are eager and capable of going back to their lives and jobs sometimes even early on after transplant. We just need to give them the permission, guidelines, and tools to be successful.”
For cancer survivors interested in any resources that may help adjusting to post-treatment lives, Dr. Salit highlights a few useful resources:
Cancer Pathways is an organization right here in Seattle that provides programs and support for all cancer survivors including stem cell transplant survivors.
BMTinfonet is a great organization for stem cell transplant survivors and their caregivers specifically who need support following their transplant care.
Cancer and Careers and Triage Cancer are other organizations that provide anything from resume assistance to disability rights for those wanting to return to work.
Fred Hutch/University of Washington/Seattle Children’s Cancer Consortium members Drs. Rachel Salit, Stephanie Lee, Catherine Lee, Neel Bhatt, Paul Carpenter, Masumi Ueda Oshima, Laura Connelly-Smith, Elizabeth Krakow and Phuong Vo.
Salit RB, Lee SJ, Bhatt NS, Carpenter PA, Fan X, Armstrong A, Oshima MU, Connelly-Smith L, Krakow E, Lee CJ, Vo P, Mehta R, Syrjala KL. 2024. Returning to Work Following Hematopoietic Cell Transplantation: The Survivor's Perspective. Transplant Cell Ther.