During a panel hosted by the National Cancer Institute (NCI), patient advocates and survivorship experts discussed the strides made in the field of cancer survivorship research.
During a panel hosted by the National Cancer Institute (NCI), patient advocates and survivorship experts expressed their thoughts on what strides have been made in the field of cancer survivorship research and the areas where work remains to be done.
The panel, which was streamed live on Facebook, was moderated by Liza Fues, a long-term survivor who is a patient advocate at The George Washington University Cancer Center. Joining her were Julia Rowland, PhD, director of NCI’s Office of Cancer Survivorship (OCS), and Shelley Fuld Nasso, CEO of the National Coalition for Cancer Survivorship.
Though the panelists offered different perspectives from their varying roles as patient, researcher, and advocate, they agreed that cancer survivorship is part of the cancer experience and deserves just as much attention as efforts to discover new treatments. Fues explained that each cancer patient walks through the experience of diagnosis and survivorship differently, but all have things in common, including that they benefit from research on survivorship.
Fuld Nasso added that her coalition advocates on behalf of all people touched by a cancer diagnosis, including family and caregivers, and that it defines survivorship from the moment of diagnosis. Part of its work, in addition to adding survivors’ voices to public policy debates, has been to reframe the terminology from “cancer victim” to “survivor”.
Efforts like these have been crucial in changing the dialogue surrounding cancer over the past 3 decades, Rowland noted. As a developmental psychologist who helped pioneer the field of psycho-oncology, she has observed that getting rid of the “victim” terminology sends a message of hope that patients can have a “rich and meaningful and full life after diagnosis.” Survivorship is also increasingly recognized as a unique part of the care trajectory that requires careful planning.
The management of long-term cancer symptoms is receiving more research attention than ever, the panelists agreed, and Rowland pointed out that the number of survivorship studies has skyrocketed from just 9 when she joined the OCS in 1999 to over 215 today. This research, particularly prospective cohort studies of survivors, has demonstrated that newer treatments are linked to fewer secondary cancers and serious comorbid conditions than the treatments used in the1970s.
Investigators are exploring innovative solutions like yoga for fatigue or whether weight loss can prevent breast cancer recurrence, Rowland explained. They are also looking at the toxicities of new treatments like immunotherapy or precision oncology, as well as the increasingly recognized issue of financial toxicity. More research will be needed on older survivors as the population ages, as well as the burden on caregivers, she noted.
Fuld Nasso said that she had seen survivorship take a back burner in cancer discussions, but was pleasantly surprised that the NCI’s Cancer Moonshot and Blue Ribbon Panel report included a recommendation on symptom management after treatment, which Rowland confirmed the NCI was working to implement.
Next, Fues shifted the conversation to what patients should know about survivorship research, noting that she had always wanted to learn as much as she could, but that was not true of everyone. The panelists highlighted the importance of the survivorship care plan, which provides a treatment summary and a plan for future surveillance, screenings, health promotion, and communication.
More than just a piece of paper, this plan should start a dialogue between providers and patients on how to move forward. Fuld Nasso encouraged patients to ask for one in case they did not receive it at the end of treatment. “Patients have to be the quarterback of their care,” she said, especially as care coordination among specialists is not ideal. Her group has advocated for the adoption of survivorship care plans, including reimbursement for providers.
An audience question about the psychological effects after the end of cancer treatment prompted Rowland to say that, as a culture, “we are falling down at this and need to do a much better job.” Psychosocial issues are common during cancer recovery and should be screened for, but in a broader sense mental health is often relegated to second place, as patients find it difficult to access practitioners and have treatment covered by insurance.
As Fues asked them to wrap up the event, the panelists referenced the mutually beneficial relationship between advocacy and research in cancer survivorship. NCI’s OCS would not exist without the push from advocates to “look beyond the cure,” Rowland said. Fuld Nasso returned the sentiment, calling the research efforts of OCS “so important to advance the science to help people live better after cancer.”