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NCI Panel Discusses Importance of Research on Cancer Survivorship

Christina Mattina
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.

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